    [Senate Hearing 107-92]
    [From the U.S. Government Publishing Office]

                                                             S. Hrg. 107-92

                            SPECIAL OLYMPICS REPORT

    =======================================================================

                                    HEARING

                                    before a

                              SUBCOMMITTEE OF THE

                COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                          ONE HUNDRED SEVENTH CONGRESS

                                 FIRST SESSION

                                   __________

                                SPECIAL HEARING

                        MARCH 5, 2001--ANCHORAGE, ALASKA

                                   __________

             Printed for the use of the Committee on Appropriations

     Available via the World Wide Web: http://www.access.gpo.gov/congress/
                                     senate

                                     ______

                       U.S. GOVERNMENT PRINTING OFFICE
    71-288                     WASHINGTON : 2001

    _______________________________________________________________________
                For sale by the U.S. Government Printing Office
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                                     20402
                          COMMITTEE ON APPROPRIATIONS

                         TED STEVENS, Alaska, Chairman
    THAD COCHRAN, Mississippi            ROBERT C. BYRD, West Virginia
    ARLEN SPECTER, Pennsylvania          DANIEL K. INOUYE, Hawaii
    PETE V. DOMENICI, New Mexico         ERNEST F. HOLLINGS, South Carolina
    CHRISTOPHER S. BOND, Missouri        PATRICK J. LEAHY, Vermont
    MITCH McCONNELL, Kentucky            TOM HARKIN, Iowa
    CONRAD BURNS, Montana                BARBARA A. MIKULSKI, Maryland
    RICHARD C. SHELBY, Alabama           HARRY REID, Nevada
    JUDD GREGG, New Hampshire            HERB KOHL, Wisconsin
    ROBERT F. BENNETT, Utah              PATTY MURRAY, Washington
    BEN NIGHTHORSE CAMPBELL, Colorado    BYRON L. DORGAN, North Dakota
    LARRY CRAIG, Idaho                   DIANNE FEINSTEIN, California
    KAY BAILEY HUTCHISON, Texas          RICHARD J. DURBIN, Illinois
    MIKE DeWINE, Ohio                    TIM JOHNSON, South Dakota
                                         MARY L. LANDRIEU, Louisiana
                       Steven J. Cortese, Staff Director
                     Lisa Sutherland, Deputy Staff Director
                   James H. English, Minority Staff Director
                                     ------

     Subcommittee on Departments of Labor, Health and Human Services, and
                        Education, and Related Agencies

                     ARLEN SPECTER, Pennsylvania, Chairman
    THAD COCHRAN, Mississippi            TOM HARKIN, Iowa
    JUDD GREGG, New Hampshire            ERNEST F. HOLLINGS, South Carolina
    LARRY CRAIG, Idaho                   DANIEL K. INOUYE, Hawaii
    KAY BAILEY HUTCHISON, Texas          HARRY REID, Nevada
    TED STEVENS, Alaska                  HERB KOHL, Wisconsin
    MIKE DeWINE, Ohio                    PATTY MURRAY, Washington
                                         MARY L. LANDRIEU, Louisiana
                                         ROBERT C. BYRD, West Virginia
                                           (Ex officio)
                               Professional Staff
                                Bettilou Taylor
                                 Mary Dietrich
                                  Jim Sourwine
                            Ellen Murray (Minority)

                             Administrative Support
                                 Correy Diviney
                           Carole Geagley (Minority)

                                C O N T E N T S

                                  ----------
                                                                       Page

    Opening statement of Senator Ted Stevens.........................     1
    Statement of Cindy Bentley, Special Olympics athlete, Wisconsin,
      USA............................................................     3
        Prepared statement...........................................     4
        What is Special Olympics?....................................     4
    Statement of Timothy Shriver, Ph.D., president and CEO, Special
      Olympics, Inc..................................................     5
        Prepared statement...........................................     8
    Statement of David Satcher, M.D., U.S. Surgeon General, U.S.
      Public Health Service, Department of Health and Human Services.    12
        Prepared statement...........................................    15
    Statement of Sue Swenson, Commissioner of the Administration for
      Developmental Disabilities, U.S. Department of Health and Human
      Services.......................................................    18
        Prepared statement...........................................    20
    Statement of Karen Perdue, commissioner, Alaska Department of
      Health and Social Services.....................................    26
        Prepared statement...........................................    29
    Statement of Jeff Jessee, Alaska Mental Health Trust Authority...    57
        Prepared statement...........................................    59
    Statement of Judith Kleinfeld, professor, University of Alaska,
      Fairbanks, AK..................................................    63
        Prepared statement...........................................    65
    Statement of Loretta Claiborne, PA, Special Olympics athlete and
      global messenger...............................................    67
        Prepared statement...........................................    69
    Statement of Hon. Rosario Marin, councilwoman, Huntington Park,
      CA.............................................................    70
        Prepared statement...........................................    72
    Statement of Dr. Steve Perlman, global clinical director, Special
      Olympics, Special Smiles Program...............................    74
    Statement of James E. Ervin, Albany, GA, Lions Club International    74
    Statement of Arnold Schwarzenegger, chairman, President's Council
      on Physical Fitness............................................    75
        Prepared statement...........................................    78
    Promoting Health for Persons With Mental Retardation--A Critical
      Journey Barely Begun...........................................    80
    The Health Status and Needs of Individuals With Mental
      Retardation....................................................    91
    Prepared statement of Jane V. White, president, American Dietetic
      Association....................................................   156
    Prepared statement of Paul Berman, global clinical director,
      Special Olympics Lions Clubs International Opening Eyes........   158
    Questions submitted by Senator Ted Stevens to:
        James Ervin..................................................   159
        Dr. Timothy Shriver..........................................   161
        Dr. Steve Perlman............................................   162
        Dr. David Satcher............................................   164

                            SPECIAL OLYMPICS REPORT

                                  ----------

                             MONDAY, MARCH 5, 2001

                               U.S. Senate,
        Subcommittee on Labor, Health and Human
         Services, and Education, and Related Agencies,
                                   Committee on Appropriations,
                                                         Anchorage, AK.
        The subcommittee met at 10:05 a.m., in Sheraton Anchorage
    Hotel, Anchorage, AK, Hon. Ted Stevens presiding.
        Present: Senator Stevens.

                    OPENING STATEMENT OF SENATOR TED STEVENS

        Senator Stevens. Thank you all very much. I noticed the
    bulletin board as we came in said the downhill is canceled for
    bad weather. Welcome to all the skiers.
        Today our Committee on Appropriations is convening this
    special field hearing of the Subcommittee on Labor and Human
    Services and Education to receive from the Special Olympics the
    report on the health status and needs of persons with mental
    retardation. I have here with me Bettilou Taylor, who is the
    chief clerk of that subcommittee. The chairman is Senator Arlen
    Specter, and I am conducting the hearing today for him.
        I understand that many of you have important information to
    present to us today. Before you do, I want to express my
    appreciation to the Special Olympics for holding the 2001
    Special Olympics World Winter Games here in Anchorage. That was
    a marvelous beginning last night, and I want to thank my son
    Ben, the president and CEO of the 2001 Special Olympics, the
    World Winter Games Organizing Committee, Patty McGuire, who is
    the president and the board of the Special Olympics World
    Winter Games here in Anchorage. It has been a long trail to
    this time, and everything is coming together in a marvelous
    way.
        We are here today to receive the report and hear from some
    witnesses who will help us understand the special health needs
    of persons with mental retardation. It is worth noting the
    remarkable history behind this organization. The Special
    Olympics began in 1968, when Eunice Kennedy Shriver organized
    the First International Special Olympics, held at Soldiers
    Field in Chicago.
        You might say that the flame that lights the Special
    Olympics was sparked by Ms. Shriver at that time, in her deeply
    held conviction that individuals with mental retardation are
    far more capable in sports and physical activities than experts
    were willing to recognize then. We are honored to have with us
    today Eunice and Sargent Shriver. Thank you very much for being
    here.
        I might say, as some of you know, I was on the other end of
    that situation. I was raised by my aunt and uncle, who had a
    daughter with mental retardation, and I saw then how people
    with those conditions were treated in the days of the thirties
    and forties. It is a wonderful change that has been brought
    about today. All of us who have family members, Ms. Shriver,
    thank you very much for all you have done to bring attention to
    this condition.
        Fueled by her vision, the Special Olympics has grown into
    an international program of year-round sports training and
    athletic competition for 1 million children and adults with
    mental retardation. Special Olympics programs now exist in 160
    nations. New programs are continuing to be developed around the
    world.
        The only thing more remarkable than the Special Olympics
    itself are the people who participate in it. The pride and
    dedication of these athletes that they show lifts our hearts,
    and more than that, these athletes are a source of strength for
    all of us, because they confirm what we all want to believe,
    that the human spirit can overcome any diversity and that
    really is what I think Special Olympics is all about.
        The report that we are going to receive emphasizes the
    urgent need to identify scientific knowledge, and develop
    programs to improve the quality and length of life for persons
    with mental retardation, most notably, Special Olympic
    athletes.
        In 1999, when the Special Olympics commissioned this
    report, information on the health conditions of people with
    mental retardation simply did not exist. The report clearly
    identifies the problems, and makes recommendations to address
    the health needs of 170 million persons with mental retardation
    worldwide, and I applaud again the Special Olympics for
    commissioning this report, but then, I am not surprised that
    they would have taken on such a task. The Special Olympics has
    never been afraid to take on great challenges.
        We have distinguished witnesses today and we will begin
    with Timothy Shriver and Cindy Bentley. Let me lay down some
    guidelines, if I may, for this testimony. We normally establish
    a 5-minute time limit for witnesses, I would hope if you would
    help us by confining your comments as much as possible. There
    is a light system here that we sort of follow. It depends on
    the circumstances, but it will go on when your limit has been
    reached, and because of the time, and what we have scheduled
    immediately after this hearing, we will have to end the
    precedings precisely at 12 noon. I hope that you will keep in
    mind the people that will be testifying after you.

                  INTRODUCTION OF DR. SHRIVER AND MS. BENTLEY

        Let me introduce Dr. Timothy Shriver, who you all heard
    last evening. He is president and chief executive officer of
    the Special Olympics, Inc. He served as president of the 1995
    Special Olympics World Games Organizing Committee. Prior to
    joining the Special Olympics, Dr. Shriver launched and was
    supervisor of the New Haven, Connecticut, Public Schools Social
    Development Project. Dr. Shriver earned his undergraduate
    degree at Yale, a master's degree from Catholic University, and
    holds a doctorate in education from the University of
    Connecticut.
        Cindy Bentley is a Special Olympics athlete from Wisconsin,
    and member of the Sargent Shriver Global Messengers Class of
    2000-2001. Ms. Bentley attended her first Special Olympics
    International Games in 1968 in Chicago, and has competed in
    both the 1995 and 1999 World Summer Games. She won medals in
    basketball, track, speed skating, volley ball, and tennis.
        I would like to proceed with your testimony now. I
    understand we do have a scheduled list of witnesses. If anyone
    really feels that they should be heard, please contact Bettilou
    or a member of our staff.
        Thank you very much. Tim.
        Dr. Shriver. I think Cindy is going to start.
        Senator Stevens. Okay, Cindy.

    STATEMENT OF CINDY BENTLEY, SPECIAL OLYMPICS ATHLETE,
                WISCONSIN, USA

    ACCOMPANIED BY THE SARGENT SHRIVER GLOBAL MESSENGERS
                CLASS OF 2000-2001:
            GORAN BABIC, BOSNIA AND HERZEGOVINA
            TROY FORD-KING, ONTARIO, CANADA
            KEALOHA LAEMOA, HAWAII, USA
            HERY MORETTI, RHODE ISLAND, USA
            MOHAMMAD NASSAR, JORDAN
            MIGUEL QUIROZ, VENEZUELA
            JIA SIRUI, CHINA
            VICTOR STEWART, TEXAS, USA
            THEO TEBELE, BOTSWANA
            CONSTANTINOS TRIANTAFYLOU, HELLAS, GREECE
            KATY WILSON, GEORGIA, USA

        Ms. Bentley. Good morning.
        Senator Stevens. Just pull the mike closer to you, Cindy.
        Ms. Bentley. Good morning. My name is Cindy Bentley. Mr.
    Chairman, I am grateful that you are holding these hearings
    about the health care needs for persons with mental
    retardation. I am a Special Olympics athlete from Wisconsin. I
    have won medals in basketball, track, speed skating, volley
    ball, and tennis. I am Governor Thomson's appointee to the
    Wisconsin Council on Development Disabilities. Now that
    Governor Thompson is the Secretary of Health and Human
    Services, I hope he will still listen to me, especially on
    health care.
        Mr. Chairman, I am especially proud to be a Special Olympic
    Global Messenger. Every 2 years a new class of 12 Special
    Olympics Global Messengers is selected from hundreds of
    nominees submitted by Special Olympics programs from around the
    world. These 12 Global Messengers represent the international
    organization by attending major events around the world, and by
    serving as spokespersons for Special Olympics, educating people
    everywhere about the mission of Special Olympics.
        You may remember me as one of the Global Messengers who
    attended the Torch Lighting ceremony in Greece. I was so happy
    that you honored the 2001 World Games by participating in that
    ceremony at the birthplace of the Olympics.

                               PREPARED STATEMENT

        I am joined here today by all of the current Special
    Olympics Global Messengers. Together, we are honored to present
    you and the committee with this report, entitled, ``The Health
    Status and Needs of Individuals with Mental Retardation.''
        Thanks again for holding this hearing.
        [The statement follows:]

                      Prepared Statement of Cindy Bentley

        Good morning. My name is Cindy Bentley. Mr. Chairman, I am grateful
    that you are holding this hearing about the health care needs of
    persons with mental retardation.
        I am a Special Olympics athlete from Wisconsin. I have won medals
    in basketball, track, speed skating, volleyball, and tennis. I am
    Governor Thompson's appointee to the Wisconsin Council on Developmental
    Disabilities. Now that Governor Thompson is the Secretary of Health and
    Human Services, I hope he will still listen to me, especially about
    health care.
        Mr. Chairman, I am especially proud to be a Special Olympics Global
    Messenger. Every two years, a new class of 12 Special Olympics Global
    Messengers is selected from hundreds of nominations submitted by
    Special Olympics Programs around the world. These twelve Global
    Messengers represent the international organization by attending major
    events around the world and by serving as spokespersons for Special
    Olympics, educating people everywhere about the mission of Special
    Olympics. You may remember me as the one of the Global Messengers who
    attended the Torch Lighting in Greece. I was so happy that you honored
    the 2001 World Games by participating in the ceremony at the birthplace
    of the Olympics.
        I am joined here today by the all of the current Special Olympics
    Global Messengers. Together, we are honored to present you and the
    Committee with this report, entitled The Health Status and Needs of
    Individuals with Mental Retardation.
        Thanks again for holding this hearing.

                           What is Special Olympics?

        Special Olympics is an international program of year-round sports
    training and athletic competition for more than one million children
    and adults with mental retardation.
        The Special Olympics oath is: Let me win. But if I cannot win, let
    me be brave in the attempt.
        Our leaders are: Eunice Kennedy Shriver, Founder and Honorary
    Chairman; Sargent Shriver, Chairman of the Board; and Timothy P.
    Shriver, Ph.D., President and CEO.
        Our mission is to provide year-round sports training and athletic
    competition in a variety of Olympic-type sports for children and adults
    with mental retardation by giving them continuing opportunities to
    develop physical fitness, demonstrate courage, experience joy, and
    participate in a sharing of gifts, skills, and friendship with their
    families, other Special Olympics athletes and the community.
        Our goal is for all persons with mental retardation to have the
    chance to become useful and productive citizens who are accepted and
    respected in their communities.
        The benefits of participation in Special Olympics for people with
    mental retardation include improved physical fitness and motor skills,
    greater self-confidence, a more positive self-image, friendships, and
    increased family support. Special Olympics athletes carry these
    benefits with them into their daily lives at home, in the classroom, on
    the job, and in the community. Families who participate become stronger
    as they learn a greater appreciation of their athlete's talents.
    Community volunteers find out what good friends the athletes can be.
    And everyone learns more about the capabilities of people with mental
    retardation.
        The Spirit of Special Olympics--skill, courage, sharing, and joy--
    transcends boundaries of geography, nationality, political philosophy,
    gender, age, race, or religion.
        Special Olympics began in 1968 when Eunice Kennedy Shriver
    organized the First International Special Olympics Games at Soldier
    Field, Chicago, Illinois, USA. The concept was born in the early 1960s
    when Mrs. Shriver started a day camp for people with mental
    retardation. She saw that individuals with mental retardation were far
    more capable in sports and physical activities than many experts
    thought. Since 1968, millions of children and adults with mental
    retardation have participated in Special Olympics.
        Around the world there are accredited Special Olympics Programs in
    more than 160 countries. Special Olympics Programs are continually
    being developed around the world.
        In the United States Special Olympics Programs are established in
    all 50 states, the District of Columbia, Guam, the Virgin Islands, and
    American Samoa. About 25,000 communities in the United States have
    Special Olympics Programs.
        To be eligible to participate in Special Olympics, an athlete must
    be at least eight years old and identified by an agency or professional
    as having one of the following conditions: mental retardation,
    cognitive delays as measured by formal assessment, or significant
    learning or vocational problems due to cognitive delay that require, or
    have required, specially-designed instruction.
        The Special Olympics Unified Sports TM program brings
    together athletes with and without mental retardation of similar age
    and ability to train and compete on the same teams. Founded in 1987,
    Special Olympics Unified Sports fosters the integration of persons with
    mental retardation into school and community sports programs.
        Special Olympics provides year-round training and competition in 25
    official sports. Special Olympics has developed and tested training
    programs that are outlined in a Sports Skills Guide for each sport.
    More than 140,000 qualified coaches train Special Olympics athletes.
        By assigning athletes to divisions determined by their ages and
    ability levels, Special Olympics gives every athlete a reasonable
    chance to win. Athletes from all divisions may advance to State,
    National, and World Games.
        For athletes with profound disabilities Special Olympics created
    its Motor Activities Training Program (MATP), developed by physical
    educators, physical therapists, and recreation therapists. MATP
    emphasizes training and participation rather than competition. MATP is
    part of the Special Olympics commitment to offer sports training to all
    individuals with mental retardation.
        Special Olympics competitions are patterned after the Olympic
    Games. More than 20,000 Games, meets, and tournaments in both summer
    and winter sports are held worldwide each year. World Games for
    selected representatives of all Programs are held every two years,
    alternating between summer and winter.
        More than 100,000 volunteers organize and run local Special
    Olympics programs, serving as coaches, Games officials, drivers, and in
    many other capacities. Anyone can learn how to participate through the
    many training programs Special Olympics offers for coaches, officials,
    and volunteers.
        Headquartered in Washington, D.C., Special Olympics guides local,
    area, state, and national programs around the world. A volunteer board
    of directors determines international policies and is comprised of
    business and sport leaders, professional athletes, educators, and
    experts in mental retardation from around the world.
        Giving cooperation and support to Special Olympics are the national
    governing bodies and/or international sports federations of each sport
    played in Special Olympics. Major sports organizations and a host of
    world leaders also support Special Olympics and its goals.
        Special Olympics is the only organization authorized by the
    International Olympic Committee to use ``Olympics'' worldwide.
        For more information about your Special Olympics Program, call 202-
    628-3630, or visit the Special Olympics website at
    www.specialolympics.org or AOL keyword: Special Olympics.

        Senator Stevens. Thank you very much, Cindy, and we will
    take that back to the committee, and it will be printed in our
    hearing today.
        Ms. Bentley. Thank you so much, Mr. Chairman.

    STATEMENT OF TIMOTHY SHRIVER, Ph.D., PRESIDENT AND CEO,
                SPECIAL OLYMPICS, INC.

        Dr. Shriver. Mr. Chairman, Cindy Bentley, Global
    Messengers, Surgeon General Satcher, members of the Board of
    Special Olympics, distinguished guests and athletes, Mr.
    Chairman, let me begin by repeating what Cindy Bentley has just
    said, which is, we are enormously grateful to you for convening
    this hearing, for your leadership of these Games, for coming
    all the way to Athens with your colleagues from the U.S. Senate
    to celebrate the lighting of the Flame of Hope.
        It is our understanding that this is the first hearing ever
    convened by a committee of the U.S. Senate exclusively devoted
    to health issues confronting people with mental disability, and
    never before in the history of the Republic has a Senate
    hearing been convened under any circumstances with the
    exclusive mission of focusing on the needs of this population,
    a population that is, as we all know, so deserving of an
    opportunity. This would not have happened, of course, without
    your leadership, so on this historic occasion, from all of us
    at Special Olympics, let me again thank you.
        The report you have just received, Mr. Chairman, has a long
    history and many stories associated with it. For me personally,
    it began at the 1995 Special Olympics World Games. At those
    Games, I was a part of the staff and volunteers who helped to
    create a global celebration, just as we are holding here this
    week. At those Games, we created this first health clinic, eye
    clinic, oral health clinic, and it was located in the middle of
    our Olympic Village. I visited the clinics in the early days to
    talk to the doctors and others. Everybody was having a good
    time.
        When the week ended, we received the data that had been
    collected as several thousand athletes from those world Games
    had been screened by medical volunteers, led by Dr. Steve
    Perlman and Dr. Paul Berman, and what we found was stunning.
    The data is contained in this report, Mr. Chairman, but I would
    like to highlight a few findings: almost 30 percent of the
    athletes screened in those clinics had visual problems or could
    not see, despite having been treated previoulsy by a doctor.
    Almost 20 percent were in severe pain.
        These are athletes that had been screened by doctors, had
    been prepared to come to the Games, yet notwithstanding that
    they were walking around with acute pain so severe that it was
    interfering with their daily lives. Almost 15 percent of the
    athletes screened on this occasion had to be referred
    immediately to the emergency room for care of serious health
    conditions either related to their oral health care or to their
    eyes.
        What we found as we started to analyze this data, Mr.
    Chairman, were at least three critical problems. One, the
    health care professionals that had been trained by medical
    institutions had chronic gaps in their training, with respect
    to treating people with mental retardation. We saw severe
    training issues in the way in which doctors and other health
    care professionals were being educated.
        We saw medical coverage issues. Many of these athletes had
    medical insurance of one form or another, but it was not
    covering their dental care or other specialized medical
    conditions. So many of our athletes, even in wealthy
    communities, did not have access to anywhere near resembling
    adequate care.
        But perhaps more serious than either of those two problems
    was the fact that we uncovered what can only be described as
    discrimination. We found, in summary, that the health care
    system in the United States and to a large extent, as well as
    we could understand it, the health care systems around the
    world, were practicing active discrimination against people
    with mental disabilities for no other reason than because they
    had a disability that made the health care professional
    uncomfortable.
        This was brought home to me as I tried to struggle with
    this issue not as a doctor, but as a volunteer in Special
    Olympics, and then as a staff member, by Dr. Paul Berman. He
    took me aside and said: ``you know, Tim, it is like this: Many
    of these athletes do see a doctor, but they get what we call a
    quick and dirty.
        ``That means, after they are brought in, we take the
    allotted time, we fit them with a pair of glasses or provide
    some other medical solution. We do not really care because they
    will not drive a car, they will not operate heavy machinery,
    they do not fill out legal challenges, and they do not
    complain, so the doctors are content to give them a quick and
    dirty. I am not proud of my profession, Tim, but that is the
    way it is.''
        That trajectory of information, Mr. Chairman, led us to
    create this report that we presented to you today. Special
    Olympics, as you know, has spent 30 years promoting the health
    condition of people with mental retardation in positive ways
    through sports training and competition. But I have come to the
    conclusion that we cannot win the battle for improved health
    care for people with mental retardation if doctors and the
    medical profession are the enemy. We cannot provide sports
    training, we cannot provide competitive opportunities, we
    cannot promote social and political acceptance if the medical
    profession is fighting against us, and I am sorry to say, Mr.
    Chairman, that this report indicates that it is.
        What is next? Very simply, we could commit to serving over
    100,000 athletes in our health care clinics annually. We could
    improve the health status of people with mental retardation by
    increasing our knowledge about their health conditions. Surgeon
    General Satcher is here today, and we are going to ask him
    formally to help us with data-collection. If there is one
    conclusion of this report, it is that the health data does not
    exist for people with mental retardation because no one has
    taken the time to gather it, because no one has cared.
        We need data. We need to change the reimbursement laws in
    this country so that people in this country, in the wealthiest
    country in the world, can at least have access to adequate
    care. We need to create, or be creative about new ways to
    improve health care for people with mental retardation. IEPs
    have been required for people with mental disability in this
    country in the education system. Why not include a health
    status component to the IEP so that school-aged children have
    at least some access to quality health care?
        Mr. Chairman, I know my time is limited. We are here on
    behalf of a population that has no high-paid lobbyists in
    Washington, that has no well-heeled perks to offer to the
    Members of Congress or the U.S. Senate, or to other senior
    policy leaders. We are here on behalf of the humblest people on
    the planet, and probably the population with the least amount
    of political influence of any, and yet I hope that we will all
    commit here today to improve their access to quality health
    care.

                               PREPARED STATEMENT

        As we come together in celebration at these World Games, we
    see athletes like Laura Zimmerman who is here today with 16
    members of her family, to watch her and take family pride in
    her downhill skiing. Why is that happening? Why is Laura
    getting such a warm welcome? Why is she excelling at sports?
    For one simple reason, Laura was given a chance. If there is
    one message, Mr. Chairman, it is that we need your voice, and
    we need the voice of your colleagues, to make it possible for
    people with mental disability to have a reasonable chance at a
    healthy life.
        Thank you, Mr. Chairman.
        [The statement follows:]

                     Prepared Statement of Timothy Shriver

        Mr. Chairman, distinguished guests, Special Olympics athletes and
    families, let me begin be saying how proud and honored all of us in
    Special Olympics are to be a part of this historic hearing. To my
    knowledge, never before has the Appropriations Committee of the United
    States Senate convened a hearing on issues related to people with
    mental retardation--in fact, I understand that this is the first
    hearing held by any Senate Committee completely dedicated to the needs
    of people with mental retardation. And for all of us in Special
    Olympics, this moment represents a first as well. Until today, we have
    never been offered the chance to speak directly to the leadership of
    the United States Senate about the hopes and needs and abilities of our
    athletes.
        Senator Stevens, thank you. Thank you for your presence here today,
    for your presence at our Torch Lighting Ceremony in Athens two weeks
    ago, for your Honorary Chairmanship of these Games and for your
    willingness to lead on behalf of our athletes.
        Mr. Chairman, six years ago, the Special Olympics World Summer
    Games were held in my home state of Connecticut. I had the honor or
    working as part of a statewide team of over 40,000 volunteers and staff
    members to host the event. At those Games, all the traditional elements
    of Special Olympics were present: the pomp and ceremony, the cultures
    of the world on display in breathtaking traditional costumes and
    rituals, festivities and celebrations, inspiring competition, and
    moments of transformative family joy.
        Those Games were also the first time that Special Olympics hosted a
    Healthy Athletes screening clinic to promote oral and vision health.
    Led by Drs. Steve Perlman and Paul Berman, teams of volunteer dentists
    and optometrists traveled from throughout the country to New Haven to
    provide screening services and basic health instruction to athletes. I
    toured the Healthy Athletes Center at the beginning of the Games, and
    saw athletes receiving instruction in oral hygiene. I saw sophisticated
    instruments measuring vision and talked with volunteers from the
    medical community who were having a great time.
        And then at the end of the week, I heard the results of what the
    medical professionals had seen and I was disgusted and shocked.
    Specifically, 85 percent of the athletes screened had refractive errors
    in their vision; 28 percent suffered from astigmatism, 25 percent had
    strabismus; 29 percent had general untreated visual problems and 23
    percent of Special Olympics screened athletes failed a test for visual
    acuity, which is simply the ability to see clearly. Further, 27 percent
    of the athletes screened had not had an eye exam within three years.
        On the oral health front, 68.1 percent of the athletes screened
    exhibited gingivitis and one in three athletes had active untreated
    dental decay. More than 20 percent reported pain in the oral cavity.
    Perhaps, most frightening, almost 15 percent of the Special Olympics
    athletes who chanced into the Healthy Athletes clinic had to be
    referred to the Emergency Room due to untreated acute pain or disease.
    In short, World Games athletes who were otherwise thought to be fine
    had suffered from such high levels of neglect that when exposed to a
    health professional, they were found to be sick and in some cases VERY
    sick. I couldn't believe it.
        In the days that followed, I learned more as I tried to find out
    how these athletes could be suffering so. Where were their doctors? Why
    had they not received attention? Who was negligent? What was going on?
    And as I struggled to understand health insurance issues, medical
    training issues, epidemiology issues, pharmaceutical issues and more, I
    heard an explanation that I will always remember.
        Dr. Paul Berman took me aside and explained. ``Tim, in most cases
    doctors don't want to treat these patients. They either don't know how
    or they don't see the money. But even when they do, it's not real care.
    It's a `quick and dirty.' Give a quick look, give them some glasses and
    send them on their way. They're not driving or operating heavy
    machinery. They're not reading or doing legal work. What difference
    does it make whether or not they see clearly? Get them in and get them
    out. That's the attitude, Tim. I'm not proud of my profession, but
    that's the way it is.'' ``Quick and Dirty.'' I'll never forget those
    words. In the best case scenario, many people with mental retardation
    get a ``quick and dirty.''
        As I struggled to comprehend this reality, I began to understand
    that the health care problems I was discovering were far bigger than
    Special Olympics but nonetheless part of the problem we were facing in
    promoting sports training and competition around the world. Quite
    simply, I realized that children and adults with mental retardation
    simply could not become athletes if they were sick, especially if they
    were sick because of neglect and indifference!
        Over the last few years, Mr. Chairman, Special Olympics has focused
    new energy on this issue because we believe that health is related
    integrally to sport. For years, we have known about the great benefits
    of participation in Special Olympics: increased skills, transformations
    in self-confidence and self-esteem, new family pride, changes in
    community attitudes and more. In general, we are convinced that Special
    Olympics helps athletes become healthier!
        But we can't win the struggle for equitable health care if the
    medical system is fighting against us! We can't win if the standard is
    ``down and dirty.'' Doctors and health care professionals are enemies
    we shouldn't have! In the year 2001, no American should be given a
    ``down and dirty,'' especially if the reason is blatant and
    unconscionable discrimination. That simply should not be.
        The report we offer to you and to your colleagues on the Senate
    Appropriations Committee, provides galling evidence in literature from
    around the world that what we have seen in Special Olympics is no
    aberration. What it says is actually, a painful reminder of what we
    thought was a part of the past. We thought the days of isolation and
    discrimination were over. We thought that all the changes in
    institutions, in schools, in legal protections, and in housing had
    changed the situation for people with mental retardation across the
    board. But now we come face to face with the realization that the
    health care system has not been part of these changes in anything
    resembling an acceptable way. In short, Mr. Chairman, the health care
    system in this country is full of negligence, indifference and blatant
    discrimination. And around the world, from what we can tell, the
    situation is not much better.
        For example, our report states that in Western Europe and the
    United States, life expectancy is 74 to 76.5 years. Yet, depending on
    the severity of their condition, people with mental retardation have a
    life expectancy of only 53.5 to 66.1 years. The report finds that 39
    percent of psychiatrists would prefer not to treat patients who have
    mental retardation. It finds that as few 30 percent of individuals with
    mental retardation receive care from medical specialists despite the
    fact that a full 92 percent had medical needs that required specialty
    care. This report finds studies on the prevalence of mental retardation
    and other health conditions are scarce; that barriers to care are
    numerous and that private and public reimbursement policies are not
    only inadequate, but also discriminatory.
        The key question, Mr. Chairman, is what is next? What can be done?
        First, Special Olympic must and will expand our Healthy Athletes
    program. For many athletes, the free screening clinics they attend at
    Special Olympics events is the only medical attention they will receive
    in the course of a year. When we started our work in the health field,
    we had no special plan for action. In 1995, we held six oral health
    clinics, and just one focusing on visual health.
        Today, thanks to funding from a range of corporate sponsors and
    thanks to a strong partnership with The Lions Club Foundation, the
    Healthy Athletes program has taken off. This year, we will host 100
    clinics; we will screen and advise 26,800 athletes; we will train
    nearly 5,000 health care professionals. And we will build the
    foundation to significantly expand all of these numbers in the years
    ahead.
        One might ask if this is a serious effort and whether or not an
    organization like Special Olympics can really make a difference in the
    health status of this population. The answer depends on what one means
    when one says ``health.''
        If health means only the drugs and operating rooms and the
    emergency rooms, then Special Olympics cannot contribute. But if health
    means knowledge about how to take care of oneself, access to the skills
    and values of prevention, relationships with health professionals that
    can guide decision making in day-to-day life, and referrals to more
    significant care when and if it is needed, then Mr. Chairman, Special
    Olympics can and will be on the cutting edge.
        Our commitment is clear. We will continue to focus on sports
    training and competition and it will remain our greatest contribution
    to enhancing the health of people with mental retardation around the
    world. But we will also build a strong Healthy Athletes program and we
    will do everything we can to demand the attention of health
    professionals and policy makers alike so that they end the pattern of
    exclusion, indifference and failure.
        But of course, we cannot do it alone, Mr. Chairman and today, I am
    asking for your support. Please understand that I ask not for myself of
    even for the movement that I represent. I ask on behalf of roughly
    seven million Americans and their families who still today, have almost
    no voice in the public debates of our time. Mr. Chairman, people with
    mental retardation have no well-heeled lobbyists in Washington; they
    offer no perks to decision-makers in the halls of power; their economic
    influence is small; their political influence is almost non existent.
        But as you know so well, Mr. Chairman, people with mental
    retardation in this country have no less right to be treated fairly
    than anyone else!
        If we could find the funds, Special Olympics could screen 175,000
    U.S. athletes every year for vision and oral health, hearing,
    dermatology and orthopedics. And even this number is less than half of
    the number of athletes who compete at Special Olympics events in the
    U.S. each year. We could teach these athletes about health promotion,
    nutrition and wellness. We could improve the quality of life and
    perhaps the life expectancy for 175,000 athletes. I think we should set
    a goal of doing just that and that the U.S. Department of Health and
    Human Service should assist us in this mission.
        Second, all public and private programs, initiatives and reports
    that address the health needs of the general public should explicitly
    examine the unique needs of persons with mental retardation.
        Third, specific health objectives for persons with mental
    retardation should be established by the U.S. government, consistent
    with the overall goals of Healthy People 2010--namely, ``to increase
    quality life years and to reduce the gaps in health status.'' Public
    schools are provided with a great opportunity to improve the health of
    school-aged individuals with mental retardation. By law, public schools
    are required to provide an Individualized Education Program (IEP) for
    every child with mental retardation. As part of each IEP, the health
    needs of children with mental retardation should be assessed and
    appropriate services accessed.
        Finally, the Inspector General of the U.S. Department of Health and
    Human Services, as well as the Association of State Attorneys General,
    should evaluate whether the provisions of publicly funded and private
    health programs are providing equal or equitable protection to persons
    with disabilities, including those with mental retardation.
        Mr. Chairman, on behalf of the one million athletes we serve we
    look to you for leadership. Your voice is one of the most powerful in
    all the Congress. Please speak out on the health needs of people with
    mental retardation. Please fund all of the programs that will help
    ameliorate the health deficits of this population. We must demand
    training programs for doctors and other care providers, fund data
    collection initiatives so that we can better understand prevalence and
    needs issues, and please, please fund health prevention programs so
    that people with mental retardation are not dying 10-20 years earlier
    than the rest of the American population.
        I urge everyone to leave this hearing room and visit the Special
    Olympics Healthy Athlete Clinic at the Eagan Center. Watch an athlete
    smile as he sees his parents and coach for the first time because he
    was given a pair of glasses with the right prescription. I promise that
    you won't see any ``down and dirty'' treatment at our clinic.
        In closing, let me remind policy makers around the world who may
    read this report, that here in Alaska, we are celebrating the
    giftedness of people with mental retardation. We will see their gifts
    as athletes, and we will see their gifts as human beings. We will see
    down hill skiers, speed skaters, and floor hockey champions. We will
    see the Zimmerman family--all 16 members of them--who have come here to
    cheer for Laura Zimmerman who is their sister, daughter, niece, cousin
    and pride and joy. All of this celebration happens because these
    athletes were given a chance and when the chance came, oh how they
    seized the moment!
        The lesson here is just that simple: give them a chance. All around
    the world, people with mental retardation are denied the simplest
    chance to belong. And yet, they bring gifts as unique as those of any
    human being. And all they ask is if someone will give them a chance.
        May we not leave here without dedicating ourselves to answering,
    YES!
        Thank you.

        Senator Stevens. Thank you very much, Dr. Shriver. I am
    sorry to tell you that I must conform to the rules of the
    Senate being a member of the Rules Committee, too. These rules
    forbid applause at Senate hearings.
        Dr. Shriver. Now that I am done, that is okay.
        Senator Stevens. I have not had a chance to read the
    report, of course. What recommendations do you make? Do the
    people here know what recommendations you have made in this
    report, beyond what you have just summarized?
        Dr. Shriver. The report spells out our recommendations with
    some specificity. Mr. Chairman, I think there really are at
    least three core recommendations. One is, that data collection
    has to be improved. The Surgeon General's Office, the Centers
    for Disease Control, need to create dedicated attention to
    gathering information about the health status and needs of this
    population. It is not gathered now, and without data, as you
    know, it is very difficult to make a case on how important it
    is for change in the health care system.
        Second, I am not an expert on medical care and medical
    insurance, but the gaps in reimbursement, the gaps in insurance
    are unconscionable. The fact that we have adults in this
    population who cannot, unless they save their welfare checks or
    title 19 reimbursements, unless they save that money, cannot
    see a dentist, is to me just shocking. I have mentioned this to
    several people and they shrug their shoulders, senior policy
    leaders--it is too expensive, we cannot get to it--so people
    are basically making up their minds to deny this population
    access to care. That has just got to change.
        I think, third, we have to look at the training issues. Too
    many doctors, 79 percent--one of the pieces of data here, 79
    percent of psychiatrists claim that they have no training in
    the care of people with mental disability. This is the mental
    health care profession.
        Medical schools around the world need to change the
    curriculum, and we need leadership from the Secretary of Health
    and Human Services, the Surgeon General, and other leaders in
    the medical field to demand that the training of medical
    professionals include attention to the special needs of this
    population.
        Additional recommendations are spelled out in this report,
    Mr. Chairman. We on our part can contribute to public health
    through our healthy athletes programs. We are not a health care
    organization, but we see other organizations providing medical
    services through vans in communities and cancer screenings and
    dermatological screenings, these kinds of things, in
    nontraditional ways. With support from organizations like the
    Lion's Club and potentially from Government sources, we could
    screen and offer health screening services to 100,000 or
    200,000 athletes a year.
        Currently we are not able to do that. We now serve just
    over 20,000 in our most ambitious projections. We could serve
    significantly more through the Special Olympics Athletes
    Program, if we had help.
        Senator Stevens. Well now, you deal, or Special Olympics
    deals with the fittest of the fit in this population.
        Dr. Shriver. That is right.
        Senator Stevens. What about the balance of this population?
        Dr. Shriver. Well, that is the scandal. All the data you
    have here is from the fittest of the fit. We are trying to do
    outreach in Native communities and urban populations, and hard-
    to-reach rural populations, to bring more people into a fitness
    and sports movement, but until we focus more attention to these
    needs, we will continue to see obesity, we will continue to see
    tobacco use, we will see all the neglect issues, that come as a
    result of people living in settings where no one has seemed to
    care, and where the medical profession is not an active ally in
    promoting a healthy lifestyle.
        Senator Stevens. There have been no studies of the impact
    of diet or substance abuse on people with mental retardation?
        Dr. Shriver. We have some controlled studies of tobacco use
    in institutionalized settings, but no community-based or
    population studies that we are aware of document these issues
    across the board. I am sure the Surgeon General can speak to
    these issues much better than I can, but we were not able to
    find any.
        Senator Stevens. We will hear from Dr. Satcher on our next
    panel, so thank you very much. Thank you, Cindy.
        Ms. Bentley. You are welcome.

                  INTRODUCTION OF DR. SATCHER AND MS. SWENSON

        Senator Stevens. We appreciate it very much.
        Dr. Satcher, the Surgeon General of the United States,
    accompanied by Sue Swenson, Commissioner of the Administration
    for Developmental Disabilities. Thank you.
        For the audience, Dr. David Satcher is the 16th Surgeon
    General of the United States. He is only the second person in
    history to simultaneously serve as the Surgeon General and as
    the Assistant Secretary for Health. Before becoming Surgeon
    General, Dr. Satcher was the Director of the Centers for
    Disease Control and Prevention and Administrator of the Agency
    for Toxic Substances and Disease Registry. He was also the
    president of Meharry Medical College in Nashville, Tennessee.
        Dr. Satcher received his Bachelor of Science degree from
    Morehouse College and his M.D. and Ph.D. from Case-Western
    Reserve University.
        Also, Ms. Swenson is introduced here. I will do it right
    now. Sue Swenson is the Commissioner of the Administration for
    Developmental Disabilities at the U.S. Department of Health and
    Human Services. She served on the Senate Labor Subcommittee on
    Disabilities as a Joseph P. Kennedy, Jr. Foundation Fellow, and
    holds an M.B.A. from the University of Minnesota, as well as an
    M.A. and a B.A. from the University of Chicago, and is the
    mother of three sons. We welcome you, too.
        Dr. Satcher, please proceed.

    STATEMENT OF DAVID SATCHER, M.D., U.S. SURGEON GENERAL,
                U.S. PUBLIC HEALTH SERVICE, DEPARTMENT OF
                HEALTH AND HUMAN SERVICES

        Dr. Satcher. Thank you, Senator Stevens. I am delighted to
    be able to join you and members of the Special Olympic
    Committee, Mrs. Shriver and members of the family and all these
    outstanding athletes.
        Senator Stevens. Pardon me, doctor. Can you all hear back
    there? Pull it right up.
        Dr. Satcher. I will start over. I am very pleased to be
    here to join you in this very important hearing, and to join
    all of those who have worked so hard to make the Special
    Olympics possible, and these outstanding athletes.
        As you know, Senator Stevens, I have submitted testimony,
    so I will just summarize briefly what I have said and respond
    to any questions or comments.
        Senator Stevens. All of the statements submitted will be
    printed in the record, and we are glad to have your additional
    comments.
        Dr. Satcher. I do want to say that in addition to my
    testimony I have had the opportunity to spend the last 3 days
    here in Anchorage and on Friday, of course, went out to Emmonak
    to really see some of our programs in the rural areas of
    Alaska, and that has been quite eye-opening.
        On Saturday I also had an opportunity to have lunch with
    Tim and some of the mothers of children with mental
    retardation, and to hear their concerns about medical care in
    this area, and that also has been very helpful. I had a chance
    along with Dr. Steve Corbin and others to visit the health
    screening units on Saturday afternoon, including visual and
    oral screening, but also for the first time, health promotion.
    So I have learned a lot since I have been here. I do not come
    as an expert in this area, but I do come as one who is very
    concerned about the quality of health and health care that
    exists in our country for people with mental retardation, and I
    hope that I can use my position as Surgeon General to make a
    difference.
        I must say, Mr. Chairman, as you know, as Surgeon General I
    have produced at least three reports that have been different
    in terms of their attention to areas of neglect. I released the
    first ever Surgeon General's Report on Mental Health in
    December 1999. That report dealt extensively with the problems
    of and made major recommendations with regard to mental health
    in our country.
        The shortcoming of it, of course, was that we did not have
    quality studies on mental health issues related to people with
    mental retardation. By the same token, we released the first-
    ever report on oral health, which included a major section
    dealing with disabilities and responding to the needs of
    persons with disabilities. But again, there was no examination
    of community-based population studies for persons with mental
    retardation. So even though the report dealt with disabilities,
    it did not target mental retardation.
        By the same token, for the first time, Healthy People 2010
    has a full chapter dealing with disabilities, and several
    objectives that we hope to achieve by the year 2010. Even
    though we deal with disabilities, however, we did not have the
    studies to specifically target mental retardation. So we are
    looking for ways to be more inclusive over the next few years.
        So these are the efforts that we have made in the short
    time we have had. I do want to agree with Dr. Shriver, or Tim,
    in saying that I think there is a major problem in terms of
    medical care, and I think it does start with training and
    sensitivity to the issue of the mentally retarded. We hear a
    lot from parents and persons with mental retardation,
    themselves, about their experience in the health care system. I
    think we can do better than that, and I think we will do better
    than that.
        I also agree that there are major systems problems in terms
    of access to care. In our report on oral health, we pointed out
    the major problem with medicaid reimbursement for dental health
    care, and that especially affects persons with disabilities.
        Many dentists still complain that they virtually have to
    take money out of their pocket in order to take care of
    persons, and yet, as you know, the JL report pointed out the
    shortcomings in medicaid. So there are some major systems
    problems in terms of physicians and other providers being able
    to provide the care that is needed. We have to look at the
    system--we have to look at the training.
        I want to close with what I consider to be, I guess you
    would call them recommendations. They are primarily our view of
    the way things should be and the way things can be in this area
    for the future. The first area is education and awareness. We
    believe that there is a great need for not just the better
    education of health professionals, but people in general
    regarding public awareness about persons with mental
    retardation and their great potential.
        I think the Special Olympics has contributed significantly
    to that effort. But when we try to deal with health problems,
    if the general population is not aware, just as we said in the
    mental health report, then a stigma surrounds the problem and
    that certainly interferes with the provision of care. So we
    believe that public awareness and better education for
    professionals is an essential first step in addressing the
    health needs of persons with mental retardation.
        Second, we need population-based surveillance programs.
    Public health begins and ends with surveillance. Screening
    programs are great, and I think the screening programs here
    have been contributing a lot, but it is not population-based
    surveillance that would really answer the kind of question that
    you raised about people in the broad population. So hopefully,
    we can develop those kinds of surveillance programs.
        There are 10 leading health indicators in Healthy People
    2010, which I hope no one will miss. Five of those are
    lifestyle, physical activity, overweight and obesity, reducing
    tobacco use, substance abuse, and responsible sexual behavior.
    For the next 10 years we are going to really be pushing the
    American people to reach the objectives in those areas. I
    believe that there are many people with mental retardation who
    would benefit tremendously from an increased focus on health
    promotion and disease prevention in our country.
        The second five leading indicators are health systems
    indicators, starting with access. Again, there are major access
    problems in this population. I believe that focusing on
    measurable objectives, in terms of improving access to care,
    will help persons with mental retardation.
        Other leading indicators are mental health, environmental
    quality, injury and violence prevention, and immunization. So
    for the first time in these three decades that we have been
    doing healthy people, we now have 10 leading health indicators
    that we can follow just as we follow leading economic
    indicators--not as often--but hopefully at least yearly. And we
    believe that if we target these leading health indicators to
    persons with mental retardation, we can get all of our systems
    in place with measurable outcomes in these areas. I hope to be
    a part of that. I certainly believe that the Office of the
    Surgeon General will be.

                               PREPARED STATEMENT

        And I, like the Special Olympics player, pledge that we
    really hope to win in this endeavor. But if we cannot win, we
    should be very brave in our attempt. I believe that we can win,
    and we hope to win.
        [The statement follows:]

                      Prepared Statement of David Satcher

        Senator Stevens and Members of the Committee: I am Dr. David
    Satcher, U.S. Surgeon General. I am pleased to appear before you today
    to discuss the need to promote health for people with mental
    retardation and to go over the findings of a privately funded
    literature review by Special Olympics, Inc. and Yale University
    pertaining to the health needs of people with mental retardation. Thank
    you for this opportunity.
        I appreciate the work of the Special Olympics not only for
    promoting physical activity among individuals with mental retardation
    but also for providing opportunities for them to develop their talent
    and performance and for highlighting their unmet health care needs.

    THE DATA ON PERSONS WITH MENTAL RETARDATION AND THE LIMITATIONS OF THAT
                                      DATA

        In the United States, we estimate that the prevalence of mental
    retardation ranges from 2 to 7.5 million people. Using the 1994
    National Health Interview (NHIS) Disability Supplement, Phase I, to
    identify people with mental retardation or developmental disabilities,
    researchers estimated mental retardation prevalence of 3.4 percent for
    the 0-5 age group, 2.5 percent for the 6-18 age group, and .5 percent
    for those 19 years of age and older.
        Worldwide, there are 170 million people with mental retardation,
    according to World Health Organization estimates. That's nearly 3
    percent of the global population.
        In the last 40 years, we have witnessed dramatic change in
    sentiments regarding those with mental retardation. Public policy and
    practice with regard to the education and treatment of individuals with
    cognitive limitations began to change in the 1960s and 1970s. Clinical
    and administrative practices began to reflect empirical findings that
    learning and improvements in adaptive behavior were enhanced by
    treatment in less restrictive community-based residential, training,
    and work environments as opposed to large, overcrowded, and
    understaffed institutions.
        Since the late 1980's the nation's public health system has
    formally recognized the health needs of people with disabilities and
    consequently, has developed programs to address their specific health
    concerns, and has set goals to eliminate health disparities relative to
    people without disabilities.
        Today, mental retardation is diagnosed using three generally
    accepted criteria: an IQ that is below 70-75; significant limitations
    existing in two or more adaptive skills areas, such as communications,
    self-care, functional academics, and home living; and presence of the
    condition before age 18. Other skills criteria include community use,
    self-direction, health and safety, leisure and work.
        Our ability to fully assess the prevalence of mental retardation in
    the United States is limited for several reasons:
      --We lack a surveillance system that targets the health status and
            needs of people with mental retardation. Existing survey-based
            public health surveillance in the United States is inadequate
            for identifying people with mild cognitive limitations.
      --When we launched Healthy People 2010 last year, the nation's health
            goals and objectives for this decade, it marked the first time
            we had ever included a full chapter on disabilities. However,
            due to the limitations in data, we were not able to
            specifically address the health status, needs and access issues
            confronting millions of Americans with mental retardation.
      --We published the landmark Surgeon General's Report on Mental Health
            in December 1999. While it offers a comprehensive view of
            mental health in the United States based on the best available
            science and an extensive discussion of mental disorders and
            problems with stigma and access, it still lacks specific
            information on persons with mental retardation because of the
            shortfalls in data.
      --Similarly, the Surgeon General's Report on Oral Health provided a
            sweeping discussion of the oral health needs in this country
            with a special focus on oral health needs of persons with
            disabilities; nevertheless, the discussion of the unique needs
            of persons with mental retardation was limited due to lack of
            data.
      --The Causes/Risk Factors for Mental Retardation
        Mental retardation can be caused by any condition that impairs
    development of the brain before birth, during birth or in the childhood
    years. Many causes are associated with mental retardation.
        It is important to accurately and consistently define mental
    retardation because of its impact on the prevalence. The most widely
    used definition comes from the American Association for Mental
    Retardation (AAMR), which defines mental retardation as the onset of
    significant limitations in both general intellectual and adaptive
    functioning during the developmental period, that is, 18 years and
    under. Although not formally a part of the definition of mental
    retardation, the APA includes mental retardation in the DSM-IV,
    classifying it as a mental disorder.
        Despite the importance of consistency, mental retardation is not
    always defined the same way across research studies or service
    agencies, even within the same state. Some definitions rely solely on
    IQ scores, others only use adaptive behaviors, while others use a
    combination of both. Many studies are based on broad categorizations of
    severity, using labels such as mild, moderate, severe and profound,
    assigning a corresponding IQ range to each term (mild = 50-55 to 70,
    moderate = 34-40 to 50-55, severe = 20-25 to 35-40 and profound <20-
    25.)
        The most well-documented approach involves two classifications:
    cultural/familial and biologic/organic, based on the prevalence or
    absence of a known organic etiology. Cultural/familial refers to
    individuals with IQs of 50-70, who do not have any identifiable
    physiological deficit. They cognitively develop at a slower rate and do
    not reach the same cognitive levels as the general population.
        Those in the organic group have an identifiable physiological
    deficit and typically have IQs lower than 50, although sometimes
    individuals with higher IQs in the 50-70 range can be included in this
    group. It would also include genetic causes such as Down Syndrome.

     THE RANGE OF HEALTH PROBLEMS/DISEASES AND CONDITIONS AFFECTING PEOPLE
                            WITH MENTAL RETARDATION

        The health issues for individuals with mental retardation are
    similar to the health issues for many people with disabling conditions,
    namely, physical activity, nutrition, access to health care, clinical
    preventive services, oral health, mental health, and family care
    giving.
        While population based data are unavailable, research using samples
    of convenience have demonstrated that people with mental retardation
    are at increased risk for obesity, cardiovascular disease,
    osteoporosis, seizures, mental illness and behavior disorders, hearing
    and vision problems, and poor conditioning and fitness. Cohort and
    group effects, such as those related to institutional experience and
    residential status, are generally poorly controlled.
        In 1991, heart disease was the leading cause of death for people
    with severe mental retardation.
        Overweight and obesity levels in this country have reached epidemic
    proportions. However, people with mental retardation have been reported
    to be at a much higher risk for obesity than their peers without
    retardation. In some studies, up to 46 percent of individuals with mild
    mental retardation were obese. There are genetic causes of mental
    retardation that are associated with obesity, such as Down Syndrome and
    Prader-Willi Syndrome.
        The type of living arrangement was strongly linked to obesity.
    Higher percentages of obesity were noted among people in community
    residential environments. Especially troubling was the finding that
    55.3 percent of individuals with mild cognitive limitations residing
    with their natural families were found to be obese.
        These studies also revealed a strong link between obesity and
    coronary heart disease, cancer, social stigma, and discrimination.
        Significantly lower bone mineral density has been reported for a
    group of people with moderate to mild mental retardation with a mean
    age of 35 years when compared with age-matched controls.

    THE UNIQUE IMPACT OF HEALTH PROBLEMS/DISEASES AND CONDITIONS AFFECTING
                         PEOPLE WITH MENTAL RETARDATION

        People with mental retardation face unique health problems
    resulting in lower life expectancies and lower quality of life.
        Life expectancy of people with mental retardation has increased to
    the extent that younger adults with mental retardation are expected to
    demonstrate little disparity in longevity; however, for older adults,
    disparities continue to exist. Specific subpopulations, people with
    Down syndrome for example, are at increased risk for premature
    mortality.
        A number of studies demonstrate that adults with mental retardation
    compare unfavorably with their peers without mental retardation in
    terms of activity, fitness levels, and obesity, resulting in increased
    risk for disease and poor quality of life, reduced cardiovascular
    fitness, higher cholesterol levels, reduced muscular strength and
    endurance, and cardiovascular disease.
        As more people with mild cognitive limitations are living in
    unsupervised environments or are under the occasional care of family
    members, service coordinators, friends, or other benefactors, there is
    little opportunity for organized fitness activities specifically
    targeted at this population.

     PEOPLE WITH MENTAL RETARDATION SUFFER DISPROPORTIONATELY FROM LACK OF
                       ACCESS TO APPROPRIATE HEALTH CARE

        Health promotion, disease prevention, early detection and universal
    access to care are the cornerstones of a balanced community health
    system. Yet, in each of these areas, individuals with mental
    retardation face barriers.
        Research has demonstrated that many primary care providers are
    unprepared or otherwise are reluctant to provide routine and emergency
    medical and dental care to people with mental retardation. Many
    providers refuse to serve, or limit the number of people served under
    the Medicaid program, a source of coverage for many people with mental
    retardation. Dental care for adults is a particularly difficult matter
    in that, by and large, Medicaid does not cover adult dental care.
        For example, many health professionals have little exposure to
    individuals with mental retardation and, as a result, are sometimes
    uncomfortable treating them. That is tragic, considering that people
    with mental retardation have been reported to be at higher risk for
    behavioral and emotional difficulties than the general population, with
    prevalence ranging from 20-40 percent.
        In addition, the medical and dental care of those individuals in
    community-based residences is no longer obtained from a centralized
    institutional staff but from primary care providers in the community.
    Increases in the use of community-based primary health care has not
    been without difficulty and the decentralization of services has
    brought with it the need for increased personal responsibility in terms
    of self-advocacy, self-determination and, in many cases, increased care
    giving responsibilities by families, often life-long care-giving
    responsibilities. Care-giving responsibility by families become
    increasingly difficult as the parents become aged or infirmed.
        Special Olympics International (SOI) is to be commended for
    expanding its ``Special Smiles'' Program into its new Healthy Athletes
    Initiative. The Health Athletes Initiative works to improve the overall
    health of each Special Olympics athlete. Through this initiative SOI is
    increasing public awareness of the health needs of people with mental
    retardation, increasing their access to care, and training
    professionals to care for people with special needs.
        The Special Smiles program, initiated in 1993, includes a non-
    invasive oral exam, brushing and flossing instructions, mouthguard
    fabrication (at selected sites), provision of oral hygiene products,
    including toothbrush, toothpaste, and floss, and educational materials.
    Participating athletes benefit from a referral program designed to link
    people with special needs with dental professionals who are experienced
    in providing dental care to patients with mental retardation. Since
    1993, over 53,000 athletes have been screened during Special Olympic
    State Games in 36 States and 2 international sites.
        Finally, we must point out that few formal connections exist
    between public health agencies and educational systems and other
    agencies that serve people with mild cognitive limitations.

                             VISION FOR THE FUTURE

        The greatest barriers to the improvement in health status for
    people with mental retardation include stereotypes and negative
    attitudes among the public, governmental agencies, service providers,
    and, in some instances, among family members. Until the early 1970s,
    public policy emphasized the segregation of people with mental
    retardation from the rest of the population--first for therapeutic
    reasons and later for the ``protection of society.''
        While we have overcome many of these barriers, we still have a
    distance to go before we reach our goal. We believe that the quality of
    life can be better in the future if we strategically focus our efforts
    in the following areas:
      --Developing and implementing a surveillance system that specifically
            targets the health status and needs of people with
            disabilities, including those with mental retardation and other
            developmental disabilities.
      --Providing for Public Health surveillance of people with mental
            retardation to track prevalence, health status, risk behaviors,
            quality of life, and comorbid conditions. Such a surveillance
            program is challenging given that the nature of the condition
            limits the participation of the informant, people with mental
            retardation may not have ready access to a telephone, and
            people reluctant to disclose mental retardation.
      --When and where possible, and with measurable objectives, tracking
            the 10 Leading Health Indicators of Healthy People 2010
            specifically for people with mental retardation. The first five
            indicators are lifestyle indicators: physical activity,
            overweight and obesity, tobacco use, substance abuse, and
            responsible sexual behavior. The remaining five are health
            systems indicators: mental health, injury and violence
            prevention, environmental quality, immunization, and access to
            health care.
      --Developing and implementing a balanced community-based health
            system for the mentally retarded. It should balance health
            promotion, disease prevention, early detection and universal
            access to care.
      --Exploring ways in which the federal government can be more
            responsive to the unique challenges and needs of people with
            mental retardation.
      --As with other areas of disparity in health, the legal implications
            of the plight of people with mental retardation needs to be
            better addressed. We should, therefore, work to protect the
            legal rights of people with mental retardation.
    --The research community should develop a research agenda targeting the
            problems, needs and opportunities for the mentally retarded.
            Completion of the human genome project will make it possible to
            better understand the genetic basis of human development. In
            addition, it will enable us to better understand the causes
            that underlie a variety of degenerative and metabolic
            disorders, including mental retardation.
        The theme of the Special Olympics is one that all of us can
    appreciate--``Let me win, but even if I don't, let me be brave in my
    attempt.'' We are all inspired by the sheer determination and
    persistence we see in the athletes who participate in the Special
    Olympics and it is out of that spirit that we must forge ahead toward
    this vision for the future.
        I realize these strategies represent high aims, but we owe it--not
    only to people with mental retardation but to all Americans--to press
    forward in a brave attempt to reach them.

        Senator Stevens. Thank you very much, Dr. Satcher. Ms.
    Swenson.

    STATEMENT OF SUE SWENSON, COMMISSIONER OF THE
                ADMINISTRATION FOR DEVELOPMENTAL
                DISABILITIES, U.S. DEPARTMENT OF HEALTH AND
                HUMAN SERVICES

        Ms. Swenson. Senator Stevens and representatives of Senator
    Specter's office, I am very grateful to have this opportunity
    to speak to you today. I represent a small program in the
    Department of Health and Human Services called the
    Administration on Developmental Disabilities.
        Five years before the first Special Olympics Games, Eunice
    Kennedy Shriver began the program. In partnership with her
    brother, President Kennedy, and with advice from Dr. Robert
    Cook, in 1963 she started a small program that would provide
    university training of professionals working with people who
    had mental retardation and developmental disabilities. Over the
    years, we have expanded. I am here today to tell you that there
    is much more we can do.
        I am, sir, a mother of three sons, one of whom has severe
    mental retardation and developmental disabilities. I have been
    a consumer of the programs that I am now in charge of. I know
    how effective they can be. I would like to briefly summarize
    the programs.
        First, every State has a Governor-appointed Developmental
    Disabilities Council. Ms. Bentley served on our council in
    Wisconsin.
        Second, every State operates a legal clinic called the
    Protection and Advocacy Agency that ensures that people with
    developmental disabilities are not abused and neglected.
        Finally, every State has at least one university center of
    excellence in developmental disabilities research training and
    service delivery. These centers provide community consulting
    services and training of professionals both before they become
    professionals and after they are already in practice. We help
    train them to understand the needs of people with mental
    retardation. This is a place where we can do much more than we
    have in the past and the reauthorization that was completed in
    October 2000 supports that goal.
        Last year's reauthorization was bipartisan in nature. There
    was cooperation between the administration and the Congress,
    and the resulting legislation positioned us to step up to the
    plate and do much more than we had in the past. I concur with
    everyone who has spoken today that access to health care,
    access to employment, which frequently is a way to get health
    care, and access to education, which is the way to get
    employment, are three serious problems that are affecting
    people with mental retardation.
        Part of my job is to go around the country and listen to
    the concerns of people who have mental retardation and
    developmental disabilities and their families. I hear that the
    medical profession is not aware of the needs of people with
    mental retardation and people with mental retardation have been
    shut out of the health care system. People with mental
    retardation and their families, every day in this country, ask
    for counseling from psychologists and are told there is no hope
    of feeling better because they have a disability, or their
    child does.
        There are people in this country every day who visit a
    doctor who does not spend the time or does not know how to
    explain what they need to know to manage their own health care.
        Every day, there are people with fetal alcohol syndrome in
    this country who are seeking treatment for alcohol abuse, so
    that they do not pass this disorder on to their own children.
        Every day, there are people seeking rape counseling, young
    women with mental retardation, who want to learn how to protect
    themselves and are not being encouraged or allowed to find ways
    to do that.
        Every day, there are people, who spend the whole day
    watching television and cannot even see the television set,
    because the glasses that they have are the wrong prescription,
    or they have no prescription, or the staff who work with them
    do not even understand that it is important to put the glasses
    on.
        Every day in this country we have people who are parents,
    and they have cognitive disabilities or mental retardation
    themselves, and when they take their child to the physician,
    they cannot get instructions to help them understand how to
    care for their child. Many of those children end up lost to the
    child welfare system, rather than being raised by parents who
    love them dearly.
        There is, in my experience, an underground market for
    information in this country among parents with children with
    mental retardation and developmental disabilities. We trade the
    names of physicians who will see us and who are able to
    understand us as if it were a secret resource. We can do better
    than that and programs can help do better than that.

                               PREPARED STATEMENT

        We are a pipeline between, if you will, the exploration and
    the drilling that happens in CDC and NIH and the folks who are
    living with these disabilities on the street. We can do more
    and we will. Attention to the special needs of people with
    mental retardation and the developmentally disabled and to our
    programs will help. Thank you so much for elevating the level
    of attention to this area by holding this hearing today.
        [The statement follows:]

                       Prepared Statement of Sue Swenson

        Chairman Stevens, Members of the Committee: Thank you for the
    opportunity to testify today in the beautiful State of Alaska about the
    health status of people with mental retardation. My name is Sue Swenson
    and I am the Commissioner of the Administration on Developmental
    Disabilities (ADD) in the Administration for Children and Families in
    the Department of Health and Human Services. I am also the mother of
    three sons, one of whom has multiple disabilities, including cognitive
    disabilities (mental retardation). I will be speaking today from my
    experience as Commissioner, but as you know, no mother ever ceases
    being a mother. Most of what I am addressing is very close to my heart.

                THE ADMINISTRATION ON DEVELOPMENTAL DISABILITIES

        ADD is a nationwide system of State-based programs designed to help
    people with developmental disabilities such as mental retardation, live
    productive, independent, decent, ordinary lives, living in the
    community and integrated into our American way of life. Local programs
    funded by ADD are present in all 50 States, the District of Columbia,
    and the territories of the United States.
        The programs are authorized by the Developmental Disabilities
    Assistance and Bill of Rights Act (The DD Act). The Act was
    successfully reauthorized in the 106th Congress, and signed by
    President Clinton on October 30, 2000. The reauthorization was
    genuinely bi-partisan in both Houses, and reflected a strong
    partnership between the Administration and the Congress. The Act
    authorizes the following activities:
      --A Governor-appointed Council on Developmental Disabilities (DD
            Council) in every State and territory. The DD Council includes
            people with disabilities and their family members, with a
            special focus on including people who have severe developmental
            disabilities and their families. It also includes the chief
            State agencies that are responsible to serve people with
            developmental disabilities. The Council must track the needs of
            people with developmental disabilities in a State, plan for
            service improvements, and make grants and administer programs
            to test and demonstrate new ideas and service models. The
            Council is responsible for informing State leaders, including
            legislators, about the needs of people with developmental
            disabilities in the State.
      --A Protection and Advocacy Agency (P&A) in every State and
            territory. The P&A offers individual advocacy and legal
            services to Americans who have severe disabilities and would
            otherwise be unrepresented. The P&A is responsible for ensuring
            that individuals with developmental disabilities may be safe
            and free from harm. It seeks to improve conditions in
            congregate settings that are unsafe or abusive, and when
            improvements are not possible, it seeks to close these
            facilities and move residents to settings that are safer.
      --At least one University Center for Excellence in Developmental
            Disabilities Research, Training and Service is in every State
            and most territories. Previously known as University Affiliated
            Programs (UAPs), University Centers for Excellence (UCE) are
            housed in a university and mandated to work in and with the
            communities they serve. The goal of the nationwide network is
            to bring validated, best-practice disability initiatives into
            community practice in each State. UCEs translate the best of
            what science has to offer through interdisciplinary research,
            training activities and service demonstration efforts. UCEs
            train professionals for leadership positions and direct care
            workers for community services; work to ensure that systems are
            designed so that people with developmental disabilities have
            access to the services and supports they need; conduct research
            and validate emerging state-of-the-art practices; provide
            technical assistance to agencies and the community; and
            disseminate information to individuals with disabilities,
            families, public and private agencies, and policymakers.
      --Projects of National Significance, a program that addresses
            nationally significant and emergent issues that affect people
            with developmental disabilities and mental retardation. This
            program has historically identified emerging issues years
            before other larger grant programs fund them. Recent projects
            have focused on finding ways to meet the health care needs of
            people with mental retardation and developmental disabilities,
            as well as on housing, employment, and self-advocacy leadership
            development and self-determination initiatives. Also, Family
            Support projects are now operating in 40 States and
            territories.
      --With the reauthorization of the DD Act of 2000, two new titles were
            authorized. Title II, Family Support provides for a program of
            grants to develop and implement a statewide system of family
            support services for families of children with disabilities.
            Family support is a small and fast-growing part of every
            State's human services budget. It is a cost-effective family-
            centered service concept that is based on the principle that
            children should grow up in their own families, while
            recognizing that families of children with disabilities may
            need a little help to be able to raise their children at home,
            and that they are the experts on what that help should be. The
            other new authority, Title III, is a program for Direct Support
            Workers Who Assist Individuals with Developmental Disabilities.
            The program is to develop technology-savvy distance learning-
            based training programs for direct support workers, and
            establish in every State scholarships for people working in
            direct support who are earning college degrees.

      PROGRESS IN THE GENERAL STATUS OF AMERICANS WITH MENTAL RETARDATION

        People with cognitive disabilities (mental retardation) are leading
    the way to a time of rapid change in how they are treated by society.
    Only 40 years ago, most Americans who had the label grew up in very
    restricted circumstances. People often lived in institutions where the
    more able cared for the less able, with no pay, and some people lived
    their lives with no access to their families. To add to the indignity,
    when these people died, they were buried on the grounds of the
    institution in unmarked graves or in graves marked only by a number.
    Families who had children like my son often had no choice other than to
    institutionalize their child. Families were regularly counseled to
    ``put him away and forget you ever had him.'' The secrecy surrounding
    such a decision was often severe, and parents reported to their
    neighbors that their child had died. Americans who believe that there
    has never been a person with mental retardation in their family may not
    have the facts. Like the Rain Man, many people grew up isolated from
    their families to the extent that even their brothers and sisters
    didn't know they existed.
        It is sometimes thought that these institutions were ``hospitals''
    where people received excellent health care. Many families
    institutionalized their sons and daughters hoping this was the case.
    Although some institutions may have reached this ideal, physicians who
    had lost their licenses to practice medicine on the ``outside''
    administered many. Most people with mental retardation had life
    expectancies decades shorter than their peers without disabilities. It
    may be surmised that they received less medical care than their peers
    did.
        Now, people with mental retardation are almost always able to grow
    up in their families and go to school with other children. Special
    education and Medicaid have made it possible for people who even have
    more severe forms of mental retardation--such as my son--to grow up and
    live where they are loved.
        People with mental retardation are becoming more aware of each
    other, more connected to their regular community and to each other.
    They are forming ``self-advocacy'' organizations to help other people
    with disabilities who may not have families, move out of institutions
    and to help younger people with cognitive disabilities grow up to be
    proud of who they are. Many of the self-advocates are people who
    learned self-esteem and organizational skills through participation in
    Special Olympics.
        In my testimony I will use the term ``cognitive disability'' to
    mean what we usually mean by mental retardation--that is, a cognitive
    disability that occurs during a person's developmental years, before
    age 18. (Please note that cognitive disabilities may occur later in
    life as a result of head injuries or problems such as Alzheimer's
    disease, so not all cognitive disability is the same thing as what is
    now known as mental retardation).
        The Administration on Developmental Disabilities (ADD) is different
    from the major initiatives undertaken by the Federal government around
    disability. ADD does not do basic research into the biological causes
    of disability or into potential cures, though we are quite involved in
    understanding the social causes and behaviors that can increase a
    person's chances of experiencing disability.
        We are focused on finding ways to help people who already have
    disabilities live with those disabilities productively and
    independently, in the communities where they would otherwise live to
    the greatest extent possible. We are focused on listening and
    responding to people who have cognitive and developmental disabilities
    and their families in their own terms, so that improvements we seek to
    make are perceived as improvements by people who need them.
        Developmental disabilities are not the same as cognitive
    disabilities (or mental retardation). The legislative definition of
    developmental disability (DD) includes only those people whose
    cognitive disability or other disability is severe enough to require
    ongoing coordinated services and supports. There are probably 3 to 4
    million Americans with a developmental disability and another 3 million
    who have milder forms of cognitive disabilities.
        It is not necessarily easier to live with milder forms of cognitive
    disability. For example, no one ever mistakes my son for a non-disabled
    person, while many people with milder cognitive disabilities must
    choose whether to tell others--such as doctors or employers--about
    their disability. In addition, many persons with milder forms of
    cognitive disability may not even know that their cognitive functioning
    would classify them as such. Thus, many of the accommodations available
    to Americans with visible or obvious disabilities are not readily
    available to persons with mild mental retardation.
        Even though the definitions of cognitive and developmental
    disabilities are different, the needs of people who have them can often
    be quite similar. Part of my job is to listen to the voices of people
    with cognitive and developmental disabilities and their parents. Let me
    share with you what they say about improvements they would like to see:
      --I have met countless mothers of children with a full range of
            disabilities who feel they should be offered help when they
            reach out for counseling in their churches or from a mental
            health professional. They tell me they are frequently told
            there is no hope of feeling better.
      --I have met people with cognitive disabilities who want to manage
            their own health care but they don't understand what a doctor
            says and they are too sad--or angry--to ask for a clearer
            explanation.
      --I have met people who have Fetal Alcohol Syndrome (FAS) and all of
            its attendant problems with impulsivity who tell me they wish
            substance abuse counselors understood their special problems.
            One lovely young women told me that she thought the fact that
            no alcoholism counselor talked to her about FAS meant that she
            was doomed by her mother's drinking to drink herself. She cried
            when she told me she still wanted children.
      --I have met women who have been raped who want to know how to be
            sure it never happens again--and women who have no hope that
            they will ever be able to protect themselves.
      --I have met people whose day consists of watching television--and
            they can't see the screen because they have never had a vision
            exam. Better health care for them would start with knowing that
            there is a world beyond five feet in front of their face.
      --I have met people with cognitive disabilities who have children,
            and who do not understand instructions the pediatrician or
            school nurse gives them.
      --I have met many parents of children with cognitive and
            developmental disabilities who trade the names and numbers of
            physicians and dentists who will see them--or who take
            Medicaid--as if they were the most important information
            imaginable. I have heard people say over and over again,
            everything changes when you find a dentist.
        These examples are common problems in every State.
        The Administration on Developmental Disabilities is making a
    difference. For example, ADD projects have:
      --Worked with Special Olympics International (SO) Healthy Athletes
            Program to identify and train optometrists to work with
            patients with cognitive disabilities--and then create a
            statewide database of these caring, trained professionals so
            that people can find someone to examine their eyes.
      --Funded Special Olympics to collect and analyze dental data from the
            Healthy Athletes Program, so that we might have a clearer
            picture of the need for dental care among people with have
            cognitive disabilities.
      --Developed model wellness programs to understand what it will take
            to engage people with cognitive and developmental disabilities
            in being responsible for their health and wellness.
      --Developed adaptations for exercise equipment to ensure that it is
            accessible to people with a wide range of disabilities.
      --Developed curricula to help people with cognitive and developmental
            disabilities, their families and their caregiving staff
            navigate managed care systems, and distributed the curriculum
            nationally.
      --Trained hundreds of medical and related health professionals to
            understand the needs of people with cognitive and developmental
            disabilities. Much more is possible.
      --Provided legal support to tens of thousands of people with
            cognitive and developmental disabilities who did not understand
            or receive the Medicaid and Medicare benefits that they need to
            survive and be healthy.
      --Worked with sexual violence programs to help them provide
            counseling to women who have cognitive disabilities--both after
            they are victims and before, to help them avoid becoming
            victims.
      --Worked with substance abuse programs to help them become accessible
            and effective so that people with cognitive and developmental
            disabilities can be successfully treated for drug and alcohol
            abuse.
        The above examples give some idea of the breadth of ADD's efforts.
    Of particular note in the health arena is the work of our University
    Centers for Excellence in Developmental Disabilities. For example:
      --The Alaska Center provides distance delivery of intensive home-
            based early intervention for preschoolers with autism; operates
            a computerized clearinghouse for mental health workers in the
            DD field; and shares a lead role in a major statewide Fetal
            Alcohol Syndrome (FAS) project.
      --The Arizona Center examines the incidence of autism and other
            developmental disabilities for CDC. Ongoing population-based
            review for FAS is also performed for CDC. Both projects are
            collaborations between the Arizona UCE at the University of
            Arizona (UA) and the Section of Medical and Molecular Genetics,
            Department of Pediatrics, UA. Partners in these projects
            include the Arizona Department of Health Services, the State
            Division of DD, and many other state agencies and consumer
            organizations.
      --The New Jersey Center with funding from the New Jersey Technology
            Assistive Resource Program of NJ Protection & Advocacy, Inc.
            and The Boggs Center-UAP will train future family physicians,
            special child health coordinators, and others about assistive
            technology that supports communication and independence.
      --The Oregon Center has a Project Disabled and Healthy that promotes
            healthy lifestyle opportunities for persons with mental
            retardation. Through workshop training and a buddy system to
            support implementation, small groups of adult with
            developmental disabilities in urban and rural communities in
            Oregon are provided opportunities to learn and practice
            healthier lifestyles. Areas of change include nutrition,
            physical activity, alcohol and tobacco use, and stress
            management. With funding from ADD's PNS health care providers
            are informed about how to support healthier lifestyles in
            persons with disabilities who they serve.
        The above profiles show how different the Centers are from each
    other, and how their work complements work of other Centers. The
    Centers receive administrative care funds from ADD and then receive
    grants and contracts from State and other Federal funding sources. Each
    Center responds to the strengths of its host University as well as to
    the needs of people with developmental and cognitive disabilities in
    the home State. Each Center must focus on ensuring interdisciplinary
    training is available to professionals working or being trained in the
    State.
        The 2000 reauthorization of the Developmental Disabilities Act
    links these efforts together in a nationwide network for the first
    time. This model is expected to create new knowledge by helping us
    better manage what we already know. In my professional judgment, the
    new national network and knowledge management system will bring more
    change than we have ever seen in the lives of people with developmental
    and cognitive disabilities. It is our stated goal to ensure that
    Americans who have developmental and cognitive disabilities are as
    healthy as their non-disabled peers.
        ADD is fundamentally interested in improving the data systems to
    help our nation understand the health needs of these individuals. We
    also see that people with more involved disabilities rely on
    coordinated and integrated service from many different systems. Data
    from all of these systems should be integrated. We can then begin to
    understand that a person who has cognitive disabilities and is unable
    to drive a car may not be able to get from his or her home or job to a
    health care professional using public transportation. In this case, a
    transportation problem is expressed as a health care problem.
        Better integrated data systems would also allow us to explore the
    relationship between the needs of people who grow up with cognitive
    disabilities and the needs of people who develop cognitive disabilities
    as a natural part of their aging process or as an expression of
    Alzheimer's disease. There is much evidence that our society's efforts
    to include people with disabilities have collateral benefits for many
    other Americans as well. We know that curb cuts meant to make our
    neighborhoods and cities accessible to people who use wheelchairs are
    useful to people pushing baby strollers, as well as to joggers and
    delivery people. We should expect that improvements in the training of
    medical and related health professionals will allow them to treat aging
    Americans experiencing new cognitive limitations as well as people who
    grew up with cognitive disabilities. In turn, we will all benefit from
    a more informed health care system.

        Senator Stevens. Thank you very much. I am trying to figure
    out about our Global Messengers, whether they should continue
    to sit here the whole time. I think they may want to move
    around. Feel free to move around, and at the next break here we
    will move your chairs so you can sit back in the audience,
    okay?
        Dr. Satcher, what about this gap in the basic education of
    health care providers? How can we attack that? I am not sure
    Congress can do much about that. That is the medical
    profession, is it not?
        Dr. Satcher. Yes, it is. I think it is a partnership
    between the medical profession and the community. Dr. Lane was
    at the luncheon that we had Saturday and talked about a program
    at Case-Western Reserve where they actually bring mothers of
    children with mental retardation into the classroom to talk
    with students. I think an increase in this partnership between
    the community that is dealing with this problem and the medical
    educators is what is needed.
        The American Association of Medical Colleges certainly can
    become involved in helping to improve the curricula of medical
    schools. We need some models. Maybe the model at Case-Western
    is one that we should look at and try and get some other
    schools to adopt. That is not the only school. There are other
    schools that have made a real attempt to improve the
    sensitivity and awareness of medical students and residents
    when it comes to the mentally retarded. What we can do,
    perhaps, is define--here is what I am planning to do.
        It was not in my testimony. I did not make this decision
    until after my meeting Saturday. I want to have a Surgeon
    General's workshop on the treatment of persons with mental
    retardation. I want to bring experts, I want to bring parents,
    I want to bring persons with mental retardation, I want to
    bring medical educators, and I want to talk for at least 2 or 3
    days about what we know and what we do not know, what research
    we need to do, and I want to issue a Surgeon General's report
    on the basis of that.
        Now, it is not the typical report that takes 2 years and is
    based on investigative science. This would be the result of a
    workshop, the kind of thing we did with action for suicide
    prevention. That had such a major effect on this country. It
    was a 3-day meeting that we had in Nevada, as you know, and has
    had tremendous impact. That is what I decided Saturday--after
    the luncheon with the parents--that we can do, and that is what
    I am going to do. It was not in my testimony. It was not vetted
    in the Department, but it is my commitment.
        Senator Stevens. That is good. I can remember in my younger
    days how we spent time traveling all over the country trying to
    find particular types of systems to deal with my cousin. What
    about this, from the point of view of special education
    techniques, is that related to medical care, or is it strictly
    related just to the education side of our society?
        Dr. Satcher. You mean, is it related to medical education?
        Senator Stevens. I am talking about special education for
    people with mental retardation, to help develop the full
    potential of their skills, and their ability to handle jobs, et
    cetera. Is that part of your side of this, or would it be just
    education--medical aspects, is what I am saying.
        Dr. Satcher. It is primarily the education side, but that
    can change, you know. When we did the Children's Mental Health
    report we worked with the Department of Education and the
    Department of Justice.
        Senator Stevens. Did you deal with people with PET scans
    capability, for instance, and run some of the tests for
    cognitive capability.
        Dr. Satcher. Oh, sure, the technology, definitely, most
    definitely.
        Senator Stevens. Is there more we should be doing in that
    area as well?
        Dr. Satcher. I think so. I think in general--and I did not
    make a point of this. It is in my testimony. I think we need a
    more balanced research agenda in this area, and all of the
    things we do not know is because we do not have the research.
    We have not had people writing proposals for NIH and CDC and
    other places in these areas, so we need a surveillance system
    first, and we need more emphasis on the balanced research.
        When I say balance, I mean, in addition to basic and
    biomedical research, we need behavioral research, community-
    based research, a balanced research agenda in this area as we
    move into the future.
        Senator Stevens. Ms. Swenson, what does your agency have to
    do with the education side of people with disabilities?
        Ms. Swenson. About half of our university programs are
    housed in departments of special education and about half in
    medical schools, and each have the responsibility for creating
    interdisciplinary education between people in special
    education, in medicine, in related fields of medicine such as
    physical therapy, occupational therapy, and all the related
    fields.
        We would like to be sure that people are getting the kind
    of interdisciplinary training that really does make a
    difference for people that have developmental disabilities. So
    our university program here, for instance, partners with the
    medical school in Seattle, Washington.
        Senator Stevens. Thank you very much for joining us today,
    and we will take your comments back to our colleagues and hope
    that they work with you when we both return to Washington.
        Let us take now about a 5-minute break, and I am going to
    arrange to move these chairs, and give the reporter a 5-minute
    break.

           INTRODUCTION OF MS. PERDUE, MR. JESSEE, AND DR. KLEINFELD

        Our next panel is Karen Perdue, Commissioner, Alaska
    Department of Health and Social Services, Jeff Jessee, Alaska
    Mental Health Trust Authority, and Judith Kleinfeld, Professor
    of the University of Alaska.
        Karen Perdue, as I said, is our commissioner. She is also a
    former employee of a very distinguished Senate office.
        She serves as aide to Lieutenant Governor Terry Miller, and
    as Deputy Commissioner of Health and Civil Services. She is a
    native of Fairbanks and a graduate of Stanford.
        Jeff Jessee is executive director of, as I said, of Mental
    Health Trust Authority. He is a native of Sacramento,
    California, came to Alaska as a VISTA volunteer, and helped
    start a nonprofit agency to protect the rights of people with
    developmental disabilities.
        Dr. Judith Kleinfeld, professor of psychology at the
    University of Alaska, Fairbanks, is Director of the Northern
    Studies Program. She earned her bachelor's degree from
    Wellesley and a doctorate from Harvard University. She is the
    author of several books on children, adolescents, and fetal
    alcohol syndrome.
        Karen.

    STATEMENT OF KAREN PERDUE, COMMISSIONER, ALASKA
                DEPARTMENT OF HEALTH AND SOCIAL SERVICES

        Ms. Perdue. Thank you very much, Mr. Chairman, for the
    opportunity to talk to you today about mental retardation,
    developmental disabilities, and health, and I am going to focus
    a little bit on Alaska in my remarks. I wanted to say that I
    generally agree with what the speakers have said so far, and
    embrace the fact that we do have some serious problems, but I
    would like to also familiarize you and perhaps the rest of the
    audience with some of the good things that are happening in
    Alaska, which I think we have to contribute to the Nation and
    perhaps the world.
        When you are talking about persons with severe
    disabilities, mental retardation, I am happy to report to you
    that Alaska was one of the first States in the Nation, perhaps
    the first, to close all institutions for persons who have
    mental retardation. We have no individuals in Alaska living in
    institutions who have mental retardation. On November 15, 1997,
    I was honored to close the last institution that we did have,
    and perhaps we hold the distinction in the world, as well, in
    regard to integrating persons with mental retardation and
    developmental disabilities into our communities.
        We followed the individuals who moved Harbor View
    Developmental Center and talked with them in this audience, and
    I have to say that without hardly any exception the individuals
    were happier living in their own homes, or in small homes, and
    no person has ever asked to go back to an institution since
    that time.
        There were a lot of naysayers, and people who believed that
    this could not be done, and I have had the opportunity to visit
    with many of the people who have moved out of our institutions,
    and I wanted to just give you a story or two about how their
    health status has improved remarkably since that event.
        One woman that we have in Anchorage, her name is Charlene,
    and she had lived in an ICFMR, an intermediate care facility
    for the mentally retarded, since she was an infant. She had had
    significant medical concerns that required weekly visits to the
    doctor. She struggled to maintain her weight, and was scheduled
    for surgery to straighten her hand. She had, in talking to her
    mother, multiple surgeries to untighten her muscles.
        She is now 31 years old. She lives with a roommate in a
    house here in Anchorage. Within weeks of moving into her home,
    she began to gain weight, her mother told me over 30 pounds,
    her surgeries were canceled because her muscles began to relax,
    she began sleeping through the night, and now she has a very
    active life. She volunteers with the Pioneer Home, attends
    local arts events, and her family reports she has never been
    healthier.
        We also have over the last decade moved very aggressively
    to make sure that our young children who have very complex
    medical conditions do not grow up in hospitals or nursing
    homes. I wanted to familiarize you with a couple of little kids
    that I have met, or have had a chance to learn about.
        One little boy, his name is Zachary, and he spent his first
    5 years of life living at Providence Hospital. His needs were
    so severe--he was born prematurely--that he was not considered
    safe to live in a nursing home. He was totally dependent on a
    ventilator and G-tube. His dad, a single parent, had to quit
    his job and move from Kenai to Anchorage to be with his son,
    and he was very, very dedicated to his son.
        Today, I am happy to say that Zachary is 13 years old, he
    lives in the Kenai Peninsula, he attends school full-time, he
    is not on a ventilator, and he is able to integrate himself and
    have a rich and full life.
        And then finally, it is very fortuitous that Surgeon
    General Satcher went to Emmonak, because I wanted to tell you
    the story about Tyler. Tyler was a 7-year-old boy who was
    ventilator-dependent and fed through a G-tube, and he returned
    to his home in southwest Alaska just in the last 2 years. He
    lives in a community with no doctors and no hospitals. It has
    taken a tremendous commitment on the part of medical personnel,
    nurses, and our other staff in Alaska to allow these stories to
    be successful.
        Medicaid has been very useful. Five years ago, we only had
    10 children in Alaska using our medicaid waiver for children to
    support them in their communities and their homes. Today, we
    have over 100, and we expect to double that amount in the next
    few years.
        Likewise, for adults with mental retardation and
    development disabilities, we have almost 3,000 people now using
    medicaid waivers for support, and living in the community, so
    because of this dramatic change of philosophy, Alaska actually
    ranks the very best in the Nation in terms of the number of
    people who do not live in institutions.
        I think we do have some important and very good experts
    from our service providers, our university affiliated programs
    and our DD Planning Council that can offer national expertise
    on some of these issues, but we do have problems, and I would
    like to address some of those in my time remaining.
        People who have developmental disabilities have a difficult
    time finding employment, and most of them want to work, and one
    of the things that we find is that the medical coverage, if a
    person takes a job and is very ill, and they do not have
    medical coverage, it is a very bad dilemma for them.
        The medicaid program has been difficult to work with so
    that people can maintain their medicaid coverage and also work.
    Alaska was one of the first States to use a medicaid buy-in
    program to help persons with developmental disabilities
    maintain their medical coverage, but more could be done in this
    area.
        I am sorry to say that oral health is a serious problem
    here in Alaska as well. We do not have good medical coverage
    under the medicaid program for adults for oral health care. In
    fact, it is pretty dismal, and because of that, because of the
    medications they take, their gums can easily deteriorate and
    have serious medical problems that affect their whole body, and
    what we find is, people actually have their teeth removed or
    pulled because they cannot be saved because they do not have
    access to preventive medical care. We have had some donated
    dental programs. We have had some attempts to ameliorate the
    situation, but the coverage under medicaid is not good.
        The challenge of obesity, as mentioned earlier, is a
    problem for Alaska. In 1990, we had about 25 percent of our
    Alaskans were overweight, and I am sorry to say almost 40
    percent are today, and we do not see much difference between
    that in the general population and the developmentally disabled
    population, and I think that is a very important area of
    concern.
        You have provided us with support in Alaska for our Take
    Heart Coalition and our Eat Smart Coalition, and I think we
    could be doing more with those efforts in regard to specific
    concerns raised today.
        Then I wanted to address one other area that I think is
    extremely important. We have a very excellent program in
    Alaska, Senator, called the Infant Learning Program, and what
    the Infant Learning Program does is, it takes babies and
    toddlers, infants and toddlers who are experiencing delays,
    whether those are motor delays, speech, vision, hearing delays,
    and works with them intensively. It gives them a
    multidisciplinary assessment with experts, and assigns therapy
    people who usually come into the child's home and work with the
    parents, work with the infant to really get in there and see if
    a difference can be made in these crucial developmental
    windows.
        Alaska has had an Infant Learning Program for many, many
    years, but I am sorry to say today that there is a waiting list
    for this program, and what is happening is, the Federal
    Government gives us some support, about $1.6 million, and the
    State puts in another $4 million, and we serve the most
    severely delayed children, those children who have a 50-percent
    delay.
        What is so heartbreaking for infant learning teachers and
    programs is that it often is true that we can have the most
    difference with the children with the lesser delays, but yet
    they are on the waiting list, and an infant on a waiting list
    is a pretty difficult thing to think about, so we have about
    300 infants waiting for help under that program.
        Just two other things quickly I wanted to mention. One is,
    training for personnel that work with staff, both health care
    workers, as has been mentioned, and direct service workers.
    These are desperate needs that we have in Alaska for not only
    the training, but the kinds of recruitment and salaries that
    people are needing to work with these populations, because it
    is very important that they get the very best, most sensitive
    care possible.
        To conclude, I want to thank you for your support for our
    State's FAS efforts. We are starting to see real community
    activity now on the prevention of FAS, as a leading cause of
    preventable mental retardation in Alaska. We have nine
    community teams mobilized across the State, and we have many,
    many projects going on, and I think that we are going to see
    benefits from this for years to come.

                               PREPARED STATEMENT

        Senator, thank you. We stand ready, as Alaskans, to assist
    in any way that is necessary with this national effort, with
    the Surgeon General, with Special Olympics. Thank you very much
    for inviting us here today.
        [The statement follows:]

                       Prepared Statement of Karen Perdue

        Good morning Senator Stevens, members of the Senate Committee on
    Appropriations. I am honored to be here today and to provide testimony
    on ways we can promote health for people with developmental
    disabilities, including mental retardation.
        Alaskans with developmental disabilities want the same things that
    all Alaskans want: access to quality health care, learning
    opportunities, opportunity for self-determination, suitable
    transportation, employment opportunities, and ability to take part in
    community life.
        Alaska is deeply enriched by the participation of its
    developmentally disabled citizens in community life and concomitantly,
    persons with developmental disabilities tend to live healthier, fuller
    lives when they live in their own homes and participate fully in the
    community.
        Gone are the days when persons with mental retardation or
    developmental disabilities live in institutions where they are not
    accorded the simple freedom of living like you or me. More and more
    services are being provided in locations where people with disabilities
    live, work, learn and play. For the most part, Alaskans with
    developmental disabilities no longer have to leave their home
    communities to receive the supports they need to live with dignity.
        My department tracks and works to prevent birth defects that are
    related to developmental disabilities. But we also recognize that
    people with developmental disabilities are special and valuable members
    of society who bring special strengths to the community. As an agency,
    we embrace our mission of providing people with disabilities with
    services that support their full and healthy integration into community
    life.
        I have reviewed the reports prepared for this committee on the
    health status and the needs of individuals with mental retardation. In
    general, I believe the report outlines well the health challenges faced
    by persons with mental retardation in our State, and its
    recommendations for policy improvements are sound. I would like to use
    my testimony to underscore some of the health status and delivery
    challenges we face in Alaska. Just as importantly, I would like to
    highlight some of the major improvements we have made in Alaska in
    providing services and improving the health status of our Alaskan
    citizens with mental retardation and developmental disabilities. I
    believe we have much to share with the rest of our nation on this
    subject.

             THE INCIDENCE OF DEVELOPMENTAL DISABILITIES IN ALASKA

        There are approximately 11,000 to 18,000 Alaskans with
    developmental disabilities in Alaska. Eleven thousand one hundred and
    ninety-six Alaskans are officially known to have developmental
    disabilities, but we know that the number of Alaskans with mental
    retardation is actually much greater, since the definition of
    ``developmental disabilities'' tends to exclude people with mild mental
    retardation. Approximately 3 percent of Alaskans have some form of
    mental retardation (the vast majority of these are mildly mentally
    retarded). This equates to approximately 18,660 people in Alaska that
    we strive to serve through programs for the developmentally disabled.
        We use the Alaska Birth Defects Registry to collect and analyze
    information received from health care providers on babies born with
    reportable birth defects statewide, including children prenatally
    exposed to alcohol.
        In Alaska, according to the ABDR:
      --The incidence of Fetal Alcohol Syndrome is the highest of any state
            in the United States. Fetal Alcohol Syndrome is the leading
            known preventable cause of mental retardation.
      --Of the average 10,000 births that occur every year, approximately
            1,600 children are reported yearly with any reportable birth
            defect.
      --Over 4 percent of the 10,000 children born every year (that is,
            over 400 children) are reported to have at least one major
            birth defect (major birth defects are those that adversely
            affect a child's health or development.)

         ALASKA DOES IT RIGHT: A COMMITMENT TO COMMUNITY INCLUSION AND
                                  INTEGRATION

        For over a decade, Alaska has been making a major commitment to
    integrating persons with developmental disabilities into their
    communities, keeping people in their own homes--whether that be a
    medically fragile child or an adult, whether in a small village in
    northwest Alaska or in our major cities. In my opinion, there is no
    other single thing that can or has lead to more dramatic health
    improvements or increased life expectancy than community integration.
        Alaska became one of the first states in the nation to close all
    institutions built for persons with developmental disabilities. On
    November 15, 1997 I had the honor of closing Harborview Developmental
    Center in Valdez, Alaska, after 36 years of operation as our state
    institution for people with developmental disabilities. Residents who
    had spent literally decades institutionalized, many of whom had
    profound retardation, now live in small group homes, or in their own
    supervised apartments. During the same time period, Hope Community
    Resources closed their institutions here in Anchorage as well.
        In a 1998 study that followed up those released from care at
    Harborview, former residents and their families/guardians reported that
    they are getting most of the services and supports they need to live in
    the community.

                        QUALITY OF LIFE IN THE COMMUNITY
    ------------------------------------------------------------------------
                                                       Former      Family/
      Quality of life indicator        Response      residents    guardians
                                                     (percent)    (percent)
    ------------------------------------------------------------------------
    When goals are set for you do  Help you reach          95.5         80.0
     people.                        them.
    Feel safe in your              Very safe......         81.8         58.8
     neighborhood?.
    Do you do fun things in the    Yes............         72.7         64.7
     community?.
    Are you happy with where you   Very happy.....         68.2         64.7
     live?.
    Do staff help you be part of   Yes............         68.2         66.7
     your community?.
    Transportation if you want to  Most of the             68.2         93.3
     go somewhere?.                 time.
    Do you get the services you    Yes............         63.6         82.3
     need?.
    Do you feel lonely?..........  No, not often..         59.1         69.2
    Feel like an important part    Yes............         45.5         58.3
     of your family?.
    How do your neighbors treat    Very good......         40.9         42.9
     you?.
    Choice in job/what you do      Yes............         35.0         38.5
     most days?.
    Do you have a job?...........  Yes............         22.7         25.0
    Choice in who you live with?.  A lot..........         18.2         28.6
    Do friends come over to visit  Often..........          9.1         15.4
     your home?.
    ------------------------------------------------------------------------

        Key informants were asked if the closure had a positive or negative
    impact on the lives of former residents of the facility. None of the
    key informants said that the impact was negative (75 percent said it
    was positive).\1\ Most importantly, no family member, guardian or
    resident of these institutions has ever asked to return to an
    institutional setting.
    ---------------------------------------------------------------------------
        \1\ Attachment 1: A Study of the Impact of Deinstitutionalization
    on the Former Residents of Harborview Developmental Center, Governor's
    Council on Disabilities and Special Education, August 1998.
    ---------------------------------------------------------------------------
        A study done by Dr. Browner of Anchorage lent additional support
    for the idea that integrating those with developmental disabilities
    into the community has positive results on people's health and well-
    being. He studied 50 Alaskans who transitioned from an institution into
    2- to 4-person community homes. These individuals had experienced
    significant chronic medical conditions and psychiatric illness. The
    data revealed that when these people moved into community homes, the
    number of work/home absences, the incidence of accessing medical care,
    the number of hospitalization days, and the number and frequency of
    medical therapies all decreased, resulting in overall savings.
        I have had the opportunity to know and visit with many of the
    individuals who moved out of these facilities. I truly believe that
    their health status has improved, their life expectancy has been
    prolonged, and their lives have been enriched. While many warned us
    that drastic results would ensue, the opposite has been true.
        I had the opportunity to meet a young Anchorage woman, Shawneen,
    who had lived in an ICF-MR since she was an infant.\2\ She had
    significant medical concerns that required weekly interventions. She
    struggled to maintain her weight, and was scheduled for a significant
    surgery to straighten her hands due to tightening muscles related to
    cerebral palsy. At 31, this young lady now lives with a roommate in her
    own home in Anchorage. Within weeks of moving to a more calm setting,
    she began to gain weight--her mother told me over thirty pounds. Her
    surgery was canceled as her muscles relaxed on their own. For the first
    time in her life, she began sleeping through the night. She now has the
    active life of a young person, attending local arts activities and
    volunteering at the Pioneer Home. Her family reports she has never been
    healthier.
    ---------------------------------------------------------------------------
        \2\ Attachment 2. Report on Shawneen.
    ---------------------------------------------------------------------------
        I also had the opportunity to visit the last two residents to leave
    Harborview Developmental Center. I visited them in their new home in
    Kenai. Both men were near fifty when they left institutional living.
    They had both lived in facilities inside and outside Alaska all their
    lives. It was predicted that they would never be able to live in a
    community setting. Both experienced mental retardation and mental
    illness. One of the gentlemen experienced water intoxication--the
    uncontrollable drinking of liquids. Yet, with the right supports, he
    was able to live in his own home with a kitchen, and to dine out. He
    was reunited with his mother, visiting her in her nursing home.
        Young Alaskan children who had complex medical conditions used to
    grow up in hospitals or nursing homes. Today, very few children in
    Alaska are growing up in a hospital or nursing home, even if they have
    very complex medical conditions. Our service providers are so convinced
    that health and well-being outcomes are better when people with
    disabilities live in the community and with their families, that they
    have adopted the attitude ``whatever it takes'' to maintain a person in
    their own community or family setting.
        One little boy I have met, Zachary, spent his first five years of
    life living in Providence Hospital.\3\ He was born prematurely and was
    considered so severe medically that a nursing home was not considered
    appropriate to care for him. He was totally dependent on a ventilator.
    His dad, a single parent, moved to Anchorage to be with him. Today I am
    happy to say this 13 year-old boy lives with his dad at home on the
    Kenai Peninsula. He attends school full-time and he no longer uses a
    ventilator full-time. While he has speech and cognitive delays due to
    his disability, he has a full-time aide to help him at school, and he
    is living a rich and full life.
    ---------------------------------------------------------------------------
        \3\ Attachment 3: Report on Zachary.
    ---------------------------------------------------------------------------
        Recently, Tyler, a seven year-old boy who was ventilator-dependent
    and fed through a g-tube returned home to his village in southwest
    Alaska free of both his ventilator and his g-tube.\4\ While he spent
    his first five years in a medical foster home in Anchorage, our nurses,
    other medical professionals and service providers worked diligently
    with his family to prepare for the day when this little boy could join
    his brothers and sisters back home. This involved many trips for his
    family and other village caregivers to Anchorage to prepare for the day
    that he could successfully live in a village of 300 people with no
    hospitals or doctors.
    ---------------------------------------------------------------------------
        \4\ Attachment 4. Report on Tyler.
    ---------------------------------------------------------------------------
        Families are willing and able to support their loved ones if they
    have the proper support. Medicaid waivers have allowed the State of
    Alaska to provider the proper support to make community living
    possible.
        Five years ago, ten children in Alaska were using the Medicaid
    waiver for Children with Complex Medical Conditions. Today, over 100
    children are living better lives in their own homes because of this
    help. We expect over 100 more children to enter this program as we can
    develop the trained medical personnel to support the families, and as
    we carefully prepare families with the support they need to care for
    their children.
        Likewise, Alaska has made aggressive use of other home and
    community-based waivers for persons with disabilities under Medicaid.
    Home and community-based waivers began in our State in 1993. Today,
    2,853 people are receiving supports through this program, at an
    investment of over $50 million. Seven hundred and thirty-six people
    with developmental disabilities receive waiver services. The investment
    is sizable and will continue to grow as we streamline services, but the
    cost is less than what would have been incurred if children were
    growing up in institutions or if adults still spent their entire lives
    in institutional settings.

                        HOW DOES ALASKA RANK NATIONALLY?

        This dramatic change in philosophy has put Alaska at the forefront
    of the use of community living over institutional care for the
    developmentally disabled and other populations. Alaska now has the
    lowest ratio of nursing home beds to population of all fifty states and
    the highest ratio of residential beds to nursing home beds as well.
    Alaska is one of six states with the lowest per capita utilization of
    nursing homes for individuals with developmental disabilities (10
    persons).
        Community services have proved very popular, because they meet the
    needs of families. This has resulted in a waiting list for services and
    an inability of the system to meet recruitment, training and other
    personnel needs to provide high quality services.
        Although we do our best to serve the needs of Alaska's
    developmentally disabled population, we recognize that there are more
    people waiting for our services than we have the resources to serve.
    Currently there are nearly 1,100 adults and children waiting for DD
    services. Approximately 400 more individuals were taken off the waiting
    list last year, but they were replaced by others needing service.
        New funds invested in the system since 1992 have been linked to
    reducing wait lists by serving more people. Little money has gone to
    cost increases to improve quality or keep up with the cost of doing
    business. Without systematic increases to pay for uncontrollable costs
    to providers--such as insurance, increases in the minimum wage, and
    changes in care needs for an aging population--the quality of services
    and the basic health and safety of persons served are in jeopardy.
        Early Intervention.--Alaska has long-recognized the value of early
    intervention services for infants and toddlers. Long before there was
    federal support through the Part C section of IDEA, Alaska created the
    Infant Learning Program, which provides crucial therapies and
    interventions for babies and toddlers who are experiencing speech,
    language, hearing and other delays. Very often, if children can be
    helped during crucial developmental windows, lifelong developmental
    delays can be mitigated.

       WE ASK THE APPROPRIATIONS COMMITTEE TO CONSIDER SEVERAL KEY ISSUES

        Helping persons with developmental disabilities get and keep a
    job.--Most people with developmental disabilities work or want to work.
    But there are major barriers that keep people with significant
    disabilities from working. Most relevant among these barriers is the
    loss of health insurance. Medicaid is a major source of health
    insurance for persons with disabilities and for persons with
    significant medical needs. The loss of Medicaid through increased
    earnings can be very serious. Alaska was one of the first states to
    take advantage of the recent Medicaid Buy-In program, which allows
    persons with disabilities who are working to maintain their Medicaid
    coverage.
        We have launched the Alaska Works program to improve policies that
    promote work. Through the Alaska Works program, we are striving to
    improve Alaska's current Medicaid buy-in and to ensure an array of
    Medicaid services that most directly support working Alaskans with
    disabilities. We want to enhance Alaska's Medicaid programs to better
    meet the needs of working people with disabilities and to complement
    existing Alaska Works activities to address the major barriers that
    keep people with significant disabilities from working.
        Improving oral health.--Persons with developmental disabilities in
    Alaska have significant oral health problems. Many of the medications
    that are necessary to control medical conditions common to persons with
    disabilities contribute to deterioration of gums and dental health.
    Self care is often not possible. Medicaid in Alaska does not adequately
    cover preventative dental care for adults, although children's coverage
    is available.
        Dental access is further compromised by the fact that many dental
    professionals are not adequately trained to provide care that is
    sensitive to the fears and dental conditions of persons with
    developmental disabilities. Alaska would benefit from better dental
    coverage, and more training aimed at dealing with the special oral
    health needs of disabled populations.
        Responding to the challenge of obesity and overweight.--Obesity is
    a growing problem in Alaska. The prevalance of overweight adults has
    grown in the last decade from 25 percent of the population in 1991 to
    38 percent in 1999. Alaska has not met its Healthy Alaskans 2000 goal
    of 20 percent and exceeds the national average. Like all Alaskans,
    persons with disabilities need appropriate interventions to promote
    healthy eating and exercise. Alaska-based coalitions like Eat Smart
    Alaska and Take Heart Alaska are promoting community-based efforts to
    address these issues. Take Heart Alaska has received federal support
    through the efforts of Senator Ted Stevens. Specific strategies and
    programs, including the expertise developed by Alaskans through
    involvement in Special Olympics, should be used to develop appropriate
    physical fitness interventions for Alaskans with developmental
    disabilities.
        Increasing support for Early Intervention.--It is critical for
    children and families to receive early intervention services and
    support. Funding under Part C of the Individuals with Disabilities
    Education Act is crucial to our efforts. We support reauthorization of
    IDEA and continued examination of Part C of the law.
        Alaska has used $1.8 million allocated last year to us under Part C
    to provide comprehensive early intervention services for qualified
    children. Alaska provides another $4.7 million in State funds. This
    $5.8 million funds the Alaska Infant Learning Program. Our services
    include outreach to parents (to find children ages zero to three in
    need of assistance), screening, evaluation to determine the nature and
    significance of a child's delays, and assessment of the child's
    eligibility for further services. Part C dollars are also used to pay
    for the therapies and services a child needs. Last year, we served
    1,600 infants and toddlers.
        Most commonly, we get referrals from doctors and parents concerned
    about their child's development. Parents report an extremely high
    satisfaction rate with these services. The program not only provides
    individually tailored help for the child, usually in the home, but also
    works with parents to help them understand what is occurring for their
    child and how they can be involved in improving their child's
    development. The most consistent complaint we get about the program is
    that parents would like more support and for periods longer than up
    through age two. The 19 community agencies that deliver these services
    do an excellent job.
        More funding is desperately needed. Right now, children who
    experience a significant delay of more than 50 percent in speech,
    language, hearing, or motor skills are prioritized for service. Over
    300 children with slightly less delay than 50 percent are on a waiting
    list for therapy services. This is a heartbreaking experience. These
    children are often the ones for which intervention will be most
    effective. A child who experiences a hearing delay as an infant may
    develop significant speech problems during crucial developmental
    windows which could lead to learning problems later.
        Early intervention services are some of the most cost-effective
    investments that can be made for children who experience developmental
    delays. Not providing these services has profound implications for the
    national and state agenda of improving educational performance for all
    children. Children must have these building blocks of hearing, speech,
    language and motor development to be able to reach the school house
    door with their maximum potential for learning intact.
        Alaska is also experiencing a shortage of trained therapists needed
    to effectively work with these children. Much needs to be done to
    increase the pay and support for early intervention teachers and to
    make services available more frequently in rural areas.
        Increasing recruitment and retention efforts.--As more people with
    developmental disabilities are being integrated into our communities,
    they need support both natural and paid. We are concerned about a
    growing shortage in the number of qualified health care workers
    available in Alaska to serve the needs of the developmentally disabled.
    It takes a targeted effort to bring qualified workers who can respond
    to the special needs of the developmentally disabled into the work
    force. We ask for your Committee's help in assessing and understanding
    the significant role that this shortage could play in creating a crisis
    of service to the developmentally disabled over the next decade. We ask
    that this Committee consider taking steps to reduce the shortage.
        Health care workers, particularly nurses and occupational, speech
    and language therapists, play a strong role in the development of
    treatment plans for the developmentally disabled. The nationwide
    shortage of nurses is well documented. Recruitment and retention
    challenges are pressing issues that must be addressed in order to
    ensure the maintenance of safe, quality services in the community for
    Alaskans with developmental disabilities.
        Direct service workers make the difference on a daily basis in the
    quality of life for a person with disabilities who needs supports.
    These jobs are good for our communities as well, in that they provide
    solid employment in every community in Alaska, rural and urban.
        The Alaska Governor's Council on Disabilities and Special Education
    made several general recommendations about ways to address these
    challenges. Their recommendations include strategies related to
    comparable wages and benefits, recruitment, retention, education and
    training, and efficiency and productivity.
        In a recent study that has been provided as back up to my
    testimony, all 28 Developmental Disabilities (DD) Service Providers in
    Alaska reported difficulties recruiting and retaining new workers.\5\
    The survey shows the following:
    ---------------------------------------------------------------------------
        \5\ Attachment 5: Developmental Disabilities Direct Service Worker
    Study Results and Findings, Governor's Council on Disabilities and
    Special Education, October 8, 1998.
    ---------------------------------------------------------------------------
      --Recruitment and retention costs are large and growing. Respondents
            reported spending $28,112 in advertising to recruit new workers
            in the first half of fiscal year 1998.
      --Survey respondents paid 34,683 hours of overtime during this same
            time period to cover shift vacancies due to unfilled positions.
            This translates into an estimated 84,446 hours annually,
            statewide and an estimated statewide annualized cost of
            $724,542 in overtime expenditures (beyond the straight time
            expenses).
      --Direct service worker positions were vacant for an average of four
            weeks before being filled. When positions were advertised, the
            average agency received eight applications. However, the number
            of applicants who were actually qualified was only 50 percent.
            These findings suggest there is a need for a targeted, systemic
            workforce development plan to address challenges facing the DD
            service delivery system.
      --A majority of respondents reported a number of major problems,
            which included: finding qualified direct service workers (82
            percent); wage and hour considerations (70 percent); direct
            service worker turnover (68 percent); and staff training and
            development (65 percent). The top three recruitment barriers or
            disincentives reported were compensation and pay (81 percent),
            hours of work (76 percent) and lack of qualified applicants (70
            percent).
        Mr. Chairman, many of our communities need these jobs and our
    citizens need these services. Attention to solving these personnel
    problems can have multiple benefits. We ask the Committee's help as we
    strive to meet the challenges of recruiting, training, and retaining
    qualified direct care and health care professionals.
        Continuing to support the State's FAS efforts.--Senator Stevens,
    with your support Alaska is the grateful recipient of a 5-year, $29
    million grant from the federal Substance Abuse and Mental Health
    Services Administration (SAMHSA). We are using these funds to undertake
    a comprehensive, integrated effort to prevent alcohol-related birth
    defects, reach out to high-risk women and families, screen and diagnose
    children at high risk of FAS and alcohol-related birth defects, and
    improve service delivery to families and individuals already
    experiencing alcohol-related birth defects. These projects are
    multidisciplinary, culturally appropriate, and community-based. We are
    working with schools, doctors, judges, social workers, parents and
    community leaders to understand how to prevent FAS/FAE, but just as
    importantly to improve the potential of individuals who live in Alaska
    who experience FAS/FAE disabilities. Program highlights include:
      --Nine Alaskan communities have developed FAS Multidisciplinary
            Community Teams, receiving training at the University of
            Washington in identification and diagnosis. Communities
            include: Bethel, Copper Center, Dillingham, Kenai, Fairbanks,
            Kodiak, Barrow and Anchorage (two teams). Teams in Nome and
            Ketchikan will be trained in September. Through this process,
            11 medical doctors across our state have been specially trained
            in how to do an FAS diagnosis.
      --Six of the nine FAS Teams have received Team Development grants to
            assist in getting their teams developed and operating over the
            next five years.
      --Twenty-two community agencies from across the state have received
            Innovative Community grant funds to develop prevention or
            service delivery projects in their communities.
      --A multidisciplinary training curriculum is currently being
            developed to provide training to service providers across the
            state: social workers, youth workers, residential care
            providers, foster parents, correctional officers, educators and
            child care providers, public assistance and job training
            workers, rural health providers and others.
      --In November 2001, the state will launch a statewide FAS multi-
            strategy public awareness/public education campaign.
        Mr. Chairman, I have used my time to touch on just a few of the
    major concerns that we have in our state regarding the health status of
    persons with mental retardation and developmental disabilities. While
    we have many challenges, I also want to underscore that Alaska is an
    increasingly positive place for persons with disabilities. In many
    respects, we lead the nation in terms of services we provide to support
    persons with disabilities and their families. On this very special day
    in which we celebrate the kick-off of the Special Olympics in our
    state, it is important to both examine our successes and the challenges
    we have in front of us. Thank you so much for sponsoring this forum
    today.

                                  ATTACHMENTS

        1. A Study of the Impact of Deinstitutionalization on the Former
    Residents of Harborview Developmental Center, Governor's Council on
    Disabilities and Special Education, August 1998.
        2. Report on Shawneen.
        3. Report on Zachary.
        4. Report on Tyler.
        5. Developmental Disabilities Direct Service Worker Study Results
    and Findings, Governor's Council on Disabilities and Special Education,
    October 8, 1998.
                                     ______

     Attachment 1.--A Study of the Impact of Deinstitutionalization on the
    Former Residents of Harborview Developmental Center, Governor's Council
               on Disabilities and Special Education, August 1998

                               EXECUTIVE SUMMARY

        Since its formation in the late 1970's, the Governor's Council on
    Disabilities and Special Education advocated for the transfer of people
    living at Harborview Developmental Center to community programs. The
    Council and other advocates maintained that community services cost
    less than institutional care, the quality of life of people is better
    in the community, and the community based services system had the
    resources to provide support to Harborview residents. Now that
    Harborview has closed, the Council is conducting a study to determine
    whether the closure was in the best interest of the people who were
    living there.
        The Harborview Study included interviews with former residents, a
    survey of family members and guardians, interviews with key informants,
    and an analysis of the economic impact of the transfer of Harborview
    Developmental Center residents to community programs. Major findings
    were:
      --Between 1961, when Harborview opened, and 1997 when it closed, 344
            people were admitted to the facility. The population at
            Harborview reached its peak in 1972 when 130 people lived
            there.
      --Former residents, families/guardians and community service
            providers felt that the Division of Mental Health and
            Developmental Disabilities provided adequate support during the
            transition of Harborview residents to community programs.
            Former residents reported (77.8 percent) that they felt that
            their needs and wants were considered during the transition
            from HDC. All of the family members and guardians (100 percent)
            responding to the survey said that their views were considered
            during the transition process.
      --While many family members or guardians were initially skeptical,
            most are now pleased with their family member's new lifestyle
            and the positive changes they have seen.
      --Former residents and their guardians rated the former residents'
            quality of life highly in most areas. Areas that are
            problematic are employment and integration into the community.
      --Former residents and guardians reported that community based
            services are meeting their wants and needs. Employment services
            are the greatest need. Most of former residents (77.8 percent)
            do not have jobs.
      --The cost of care in the community ($94,878, including Adult Public
            Assistance and Food Stamps) is significantly less than the
            costs at Harborview ($164,000). The net saving equals $69,122
            per person.
        The study also identified a number of system's issues:
      --Most (77.3 percent) of the former HDC residents do not have jobs.
            Many others in community programs are also waiting for
            supported employment services. Without additional resources for
            employment services, this will continue to be an issue.
      --There is still work to be done in providing consumers with real
            choices and integrating them into their communities. These are
            values that are widely held by community programs. They are
            also the values that are most difficult attain. While it is
            clear that programs are getting former residents out into the
            community, the challenge will be to support consumers in
            establishing individual relationships.
      --Staff turnover negatively impacts family and guardian confidence in
            community services. Low wages and lack of benefits cause high
            turnover and a perceived lack of consistent and professional
            care.

                                  INTRODUCTION

        In the mid-1990s, the Alaska Department of Health and Social
    Services made the decision to phase out Harborview Developmental Center
    (HDC). The three-year closure plan was the collaborative effort of many
    state and community agencies. These included the Alaska State
    Legislature, the Governor's Council on Disabilities and Special
    Education, the Alaska Developmental Disabilities Providers Association,
    the Disability Law Center and consumer advocates, consumers and
    families, the Alaska Mental Health Trust Authority, the Department of
    Health and Social Services, and Division of Mental Health and
    Developmental Disabilities (DMHDD).
        Harborview Developmental Center closed its doors on November 15,
    1997 after 36 years as the only state-run institution for Alaskans with
    developmental disabilities. People who had spent much of their lives at
    Harborview Developmental Center are now living in small group homes,
    their own supervised apartments or, for some of the older individuals,
    in nursing homes.
        Since its formation in the late 1970's, the Governor's Council on
    Disabilities and Special Education advocated for the transfer of people
    living at Harborview Developmental Center to community programs. The
    council and other advocates maintained that community services cost
    less than institutional care, the quality of life of people is better
    in the community, and the community based services system had the
    resources to provide support to Harborview residents. Now that
    Harborview has finally closed, the Council is conducting a study to
    test these assumptions and to determine how those who left Harborview
    in the past ten years are faring in the community.
        The central question explored in the study is whether the closure
    of Harborview Developmental Center was in the best interest of the
    people who were living there. A number of issues relating to the
    closure are explored in this report. They include the:
      --transition process from HDC to the community for former residents,
            families and guardians and community service providers
      --quality of life of former HDC residents in the community
      --capacity of the community services system to meet the needs of
            former HDC residents
      --permanence of community services
      --economic impact of the HDC closure

                               STUDY METHODOLOGY

        Information Insights used a number of research methods to gather
    information for this report. Interviews were conducted with former
    residents and key informants, and family members or guardians of former
    residents received a mail-in questionnaire. The key informants included
    representatives from the Division of Mental Health and Developmental
    Disabilities and other state agencies involved in the closure,
    community services providers, and advocates.
        Information on the cost of services at HDC and in the community was
    gathered from the Department of Health and Social Services. The
    Division of Mental Health and Developmental Disabilities provided a
    list of all those admitted to Harborview since it opened in the 1960s.
        The project sample was limited to those discharged from Harborview
    in the past ten years. Because Information Insights could not contact
    former residents and family/guardians directly, community programs
    provided assistance by sending out surveys and interview interest/
    permission forms for the former residents for whom they provide
    services and supports. Of the 99 people discharged form Harborview
    between January 1, 1987 and November 15, 1997, 18 had died and 12 could
    not be located. According to DMHDD records and subsequent follow-up by
    Information Insights, it was determined that former residents of HDC
    were discharged to and/or are currently receiving serves from the
    following agencies:
        Alaska Psychiatric Institute--Anchorage
        Anchorage Pioneer's Home--Anchorage
        ARCA--Anchorage
        ASETS--Anchorage
        Bethel Community Services--Bethel
        Community Connections--Ketchikan
        Deaf Community Services--Fairbanks
        Denali Center Nursing Home--Fairbanks
        Fairbanks Resource Agency--Fairbanks
        Frontier Community Services--Soldotna
        Hope Cottages--Anchorage
        Horizons Unlimited--Valdez
        Ketchikan Pioneer's Home--Ketchikan
        Kodiak Island Mental Health Center--Kodiak
        Mat-Su Services for Children and Adults--Wasilla
        Our Lady of Compassion Care Center--Anchorage
        Assisted Living Homes--Anchorage
        Foster Homes--Anchorage/Valdez
        Information Insights interviewed 22 former residents and 16 key
    informants, and received completed surveys from 18 family members or
    guardians of former residents.

            THE PEOPLE WHO LIVED AT HARBORVIEW DEVELOPMENTAL CENTER

        Harborview opened in 1961 as the state's institution for people
    with developmental disabilities. Prior to this time, any child or adult
    needing more care than their family could provide were sent to
    Morningside Hospital and Baby Louise Haven in Oregon. Alaska offered no
    community care, even for people with less severe disabilities. The 1964
    Good Friday earthquake destroyed the original Harborview along with the
    rest of the community of Valdez. The current Harborview Developmental
    Center facility was constructed with federal assistance after the
    earthquake.
        Between 1964 and 1997, 344 people were admitted to Harborview
    Developmental Center. Harborview was at its peak in 1972 when it housed
    130 residents. Of the 344 people who lived at HDC over the years, 236
    (69 percent) were male and 108 (31 percent) were female. More than half
    (57 percent) of those admitted were 19 or younger.

        Harborview served primarily as a facility for children and young
    adults with developmental disabilities during the first two decades of
    existence. The average age of those admitted through 1986 was 19.0
    years. This group of HDC residents spent an average of 19.1 years
    living at the Valdez facility.
        By 1986, the number of people with developmental disabilities
    living at HDC was dropping as programs were developed in the community.
    In August 1986, the Sourdough Unit was opened to serve people who had
    behavioral problems that made placement at other facilities, in
    particular nursing homes, difficult. These individuals were generally
    older than the rest of the Harborview population. Few individuals
    experiencing developmental disabilities were admitted to HDC after the
    mid 1980s. The average age of those admitted after August 1986 was 49.7
    years.

      HARBORVIEW DEVELOPMENTAL CENTER AGE AT ADMISSION/DISCHARGE, LENGTH OF
                                      STAY
    ------------------------------------------------------------------------
                                          Age at       Age at      Years at
                                        admission    discharge    harborview
    ------------------------------------------------------------------------
    All Harborview Residents (1964-           31.4         45.4         13.7
     1997)...........................
    Before Sourdough Unit (1964-1986)         19.0         38.0         19.1
    After Sourdough Unit (8/86-11/97)         49.7         54.0          4.2
    ------------------------------------------------------------------------

                  TRANSITION FROM HARBORVIEW TO THE COMMUNITY

        Former HDC residents, families/guardians and key informants were
    generally positive in their views and comments about state support of
    the transition process from HDC to the community. While 83.3 percent of
    the family/guardian survey respondents said that they received adequate
    support during the transition of their family member, some of them
    reported that there were problems experienced along the way.
      --Harborview provided a safe, familiar home for ________ since 1974.
            It was a shock to accept any change and it came on us suddenly.
            Probably no amount of time could have adequately prepared us.
      --I was apprehensive that Harborview closing seemed to be moving
            rapidly in spite of public opinion. Control seemingly rested
            only in administrative hands.
      --We had no say, was just told what would happen. We were very
            pleased with progress and chances to try new things.
        Many families/guardians made positive comments as well.
      --We noticed ________ didn't bring all his toys with him. Probably
            lost in HDC. Lynn George, of Assets, was the most supportive
            person we have ever dealt with. She was sensitive, paid
            attention to detail, and got things done.
      --I was at Harborview for conferences over the years that the change
            was taking place. I also had letters and telephone
            conversations. They knew I wanted him to stay at Harborview as
            long as possible.
      --There were a number of meetings at ARCA to inform parents and legal
            guardians of the progress of the transition.
      --Harborview kept in touch with us, letting us know when and how he
            would be transferred to Anchorage.
      --I had telephone conferences with the Harborview staff. The
            Anchorage staff brought my husband and I into Anchorage during
            the planning stages.
        State agency representatives, service providers and advocates
    interviewed for the key informant survey also said that they thought
    that the state had provided adequate support (85.7 percent) to former
    residents and guardians during the transition process.
      --I believe so. It really was a leap of faith that services would be
            there and be better.
      --The transition went well for consumers at HDC--but Alaska has a
            long way to go in providing community services.
      --A cynical yes, but supports set expectations that it would continue
            at the same level permanently. Families thought they would be
            getting everything they needed but this was not always the
            reality.
      --Support was very positive from our view--families were able to
            choose the home. They were very happy to get all the help they
            did.
      --Absolutely, especially during the last phase--the supports needed
            varies. The State did an extraordinary job of supporting people
            with all of their needs.
      --Yes, very adequate supports. DMHDD was very supportive in reviewing
            needs and wants and assisting with funding.
      --Our consumers had public guardians and got lots of support from
            DMHDD and HDC staff. They gave us information and tips, our
            staff was able to spend time at HDC prior to the transition.
            They gave us behavior management ideas for clients as well.
        Former residents reported (77.8 percent) that they felt that their
    needs and wants were considered during the transition from HDC. At the
    same time, 100 percent of family and guardian respondents said that
    their views were considered during the transition process.

                        QUALITY OF LIFE IN THE COMMUNITY

        One of the most frequently heard reasons for closing Harborview was
    that services in smaller community based programs would improve the
    quality of life for those living at HDC. While ``quality of life'' is
    difficult to define and often the subject of heated debate, for the
    purposes of this study ``quality of life'' includes integration into
    the family and community, and choice and self-determination. Former
    residents were asked a number of questions about their lives since they
    moved to community programs. Their family members/guardians were asked
    the same questions about their family member's life.
        Former residents and their families/guardians reported that they
    are getting most of the services and supports they need to live in the
    community. However, there are a few indicators that will require
    continued attention by community programs. These are in the areas of
    choice (who you live with, what you do most days) and integration (into
    the neighborhood, having friends visit). It is also clear from the
    interviews and survey responses that community programs are working to
    integrate former residents into their communities (doing fun things in
    the community, participating in the community, transportation), this is
    an extremely difficult task and one with which all community programs
    struggle.

                        QUALITY OF LIFE IN THE COMMUNITY
    ------------------------------------------------------------------------
                                                       Former      Family/
      Quality of life indicator        Response      residents    guardians
                                                     (percent)    (percent)
    ------------------------------------------------------------------------
    When goals are set for you do  Help you reach          95.5         80.0
     people.                        them.
    Feel safe in your              Very safe......         81.8         58.8
     neighborhood?.
    Do you do fun things in the    Yes............         72.7         64.7
     community?.
    Are you happy with where you   Very happy.....         68.2         64.7
     live?.
    Do staff help you be part of   Yes............         68.2         66.7
     your community?.
    Transportation if you want to  Most of the             68.2         93.3
     go somewhere?.                 time.
    Do you get the services you    Yes............         63.6         82.3
     need?.
    Do you feel lonely?..........  No, not often..         59.1         69.2
    Feel like an important part    Yes............         45.5         58.3
     of your family?.
    How do your neighbors treat    Very good......         40.9         42.9
     you?.
    Choice in job/what you do      Yes............         35.0         38.5
     most days?.
    Do you have a job?...........  Yes............         22.7         25.0
    Choice in who you live with?.  A lot..........         18.2         28.6
    Do friends come over to visit  Often..........          9.1         15.4
     your home?.
    ------------------------------------------------------------------------

        Key informants were asked if the closure had a positive or negative
    impact on the lives of the former residents if the facility. None of
    the key informants said that the impact was negative (75 percent said
    it was positive).

                IMPACT OF TRANSFER OF HDC RESIDENTS TO COMMUNITY
    ------------------------------------------------------------------------
                                                       Number      Percent
    ------------------------------------------------------------------------
    Positive......................................           12         75.0
    Negative......................................  ...........  ...........
    Both..........................................            2         12.5
    Uncertain.....................................            2         12.5
    N/A or No Response............................            1  ...........
    ------------------------------------------------------------------------

        The key informants provided the following comments:
      --Institutions like HDC are completely protected/artificial. They rob
            people of the richness of community and being integrated into a
            community. They need to be closer to the ``American Dream.''
            They are more likely to get caught up in it and make it true
            for themselves if they can see it. Living in the community
            means opportunities to work, families, volunteer in community,
            recreational opportunities, to be neighbors and friends with
            people who are not PAID to be there!
      --A whole world opened to them now that hadn't before--they have more
            choices and freedom.
      --They used to say that they will only eat certain foods--but here,
            they get to be involved with choosing what they eat. They are
            more interested and take an active part in the preparation of
            food and have increased appetites.
      --HDC didn't feel ``homey'' at all--not anything like the Pioneer
            Home environment. It is much less restrictive here, people can
            do more for themselves--they are able to get own food and
            snacks in their own kitchen.
      --Care at HDC was based on a medical model and the Pioneer Homes are
            based on social model approach--supporting people in what they
            can do in a ``home like'' environment. There was a very
            positive impact--people with dementia tend to do better in a
            homelike environment.
      --Absolutely. You have to be there to see it. Joy, family
            reunification in some instances, better health, more engaged in
            community (having block parties--you don't get that in an
            institution).
      --Like any decision that effects so many, there will be positive and
            negative effects. The changes I've seen are very positive.
            There is a small percentage who may do better in a different
            setting but its not fair to say all are doing perfectly well.
        Key informants were also asked to provide examples of how a former
    resident's life has improved since discharge.
      --A Valdez group home manager reported how much people's lives have
            changed, from sitting in a corner eating cookies at HDC to
            having their own kitchen. Now when they need a snack they can
            not only choose what it will be but go and get it
            independently. Now, these people have something to look forward
            to.
      --One person was able for the first time to visit family members in
            California. A Kenai consumer had refused to move a trunk of his
            clothes into his room at HDC, but when he moved into a new
            community based home, he said, ``now I can move my stuff in--
            because I have a room.''
      --Mental health consumers are more lively, socialization is more open
            and people are actively participating in culturally appropriate
            activities--like sewing fur, fishing (fish camp in summer and
            ice fishing in winter).
      --I've had the opportunity to follow the lives of 5 people. In every
            case, their health is better, they are doing more, are more
            active and more productive in terms of functioning level. In 3
            of those 5, the families are very happy with the quality of
            life of their family member.
      --In some of the people, there was never a spark in their eyes while
            at HDC--now they laugh and smile!
      --The majority of the people we support were at HDC at some time.
            Now, if someone is hungry or thirsty they can go into the
            kitchen and get some food and water. At HDC, they had to wait
            for these things to be offered first. There have been great
            improvements, especially with the lower functioning folks.
      --Two former residents were amazed they could shut door to their
            bedrooms. They enjoy having privacy and a choice of churches to
            attend, and are doing more personal care willingly because they
            want to look good.

                       COMMUNITY SERVICES SYSTEM CAPACITY

        Former residents and their families/guardians were asked to rate
    how well the community service system is able to provide the services
    and supports they need or want. While there is considerable variation
    between how former residents and family members/guardians rate
    services, both groups reported that most community services are meeting
    the needs of former residents well or extremely well. The service that
    appears to be the most problematic is employment.
        More than 90 percent of the former residents interviewed said their
    nutritional needs were being met well to extremely well in the
    community. Other highly rated community services were mental health
    services (83.4 percent), community living services (81.8 percent) and
    health and medical services (77.2 percent). Education (37.5 percent)
    and employment (25 percent) services were the lowest rated services.
    This is not surprising since only 23 percent of the former residents
    interviewed have jobs.
        Families and guardians were also asked to rate how well community
    services were meeting the needs of their family members. Behavioral
    support was the highest rated community service, with 90 percent of
    families and guardians saying that community services were meeting the
    behavioral support needs of their family members well/extremely well.
    Families and guardians also rated health and medical (84.6 percent),
    recreation/leisure (78.6 percent), nutrition (77.0 percent), community
    living (76.9 percent) and transportation services (71.4 percent)
    highly. Families and guardians reported that education services were
    the least likely to meet their family member's needs well/extremely
    well. Employment (60.0 percent), mental health services (55.5 percent),
    and education (37.5 percent), were less likely to be rated as meeting
    the needs of family members well/extremely well. More than half of the
    family members/guardian survey respondents did not know if these
    services were being provided or chose not to answer the question on the
    survey.

    ------------------------------------------------------------------------
                                                       Former      Family/
                  Community services                 residents     guardian
                                                     (percent)    (percent)
    ------------------------------------------------------------------------
    Nutrition.....................................         90.8         77.0
    Mental Health Services........................         83.4         55.5
    Community Living Services.....................         81.8         76.9
    Health/Medical Care...........................         77.2         84.6
    Transportation................................         64.3         71.4
    Recreation/Leisure............................         60.0         78.6
    Behavioral Support............................         54.6         90.0
    Education.....................................         37.5         37.5
    Employment....................................         25.0         60.0
    ------------------------------------------------------------------------

        The majority (63.6 percent) of former residents said that they are
    receiving the services they need. The services and supports they need
    but don't have include dental/medical services, physical therapy,
    recreation, and environmental modifications.
        Former residents and family members/guardians are in agreement that
    former resident's lives have improved since moving to community
    services. More than seventy percent of former residents (77.3 percent)
    reported that their lives have improved since leaving Harborview. While
    many family members/guardians provided positive comments about care at
    Harborview, they also reported that the lives of former HDC residents
    have improved (71.4 percent) since moving into community services.

                       HAS LIFE IMPROVED IN THE COMMUNITY?
    ------------------------------------------------------------------------
                                                       Former      Family/
                Former resident's life?              residents     guardian
                                                     (percent)    (percent)
    ------------------------------------------------------------------------
    Improved......................................         77.3         71.4
    Stayed the same...............................         18.2         21.4
    Gotten worse..................................          4.5          7.1
    ------------------------------------------------------------------------

        Comments about the change in former resident's lives from families/
    guardians include:
      --Institutions are like a parallel universe. Life and institutions
            like HDC are apples and marbles. HDC was an eddy in the river
            of life-a stagnant eddy, a holding pattern in the flight of
            life.
      --________ seems happier, smiles more at Eagle House.
      --The environment of a home rather that an institution has improved
            the quality of her life.
      --She is getting good care now, but ________ and everyone was
            especially treated like family at Harborview.
      --His needs are taken care of and he is also taken to movies and
            dinner or lunch every so often and he sees a doctor at Alaska
            Native Medical Center, he is happier.
      --________'s care providers have changed numerous times since moving
            to ARCA. I believe 5 to date. Of these 5, 2 related well to
            ________ and she was obviously well cared for healthy and
            happy!
      --I'm putting improved because he's doing so well, but I really don't
            know that much about Harborview because we never went there to
            visit.
      --More 1 on 1 attention by his care givers. More opportunities to go
            out on drives and out in the community.
      --________ likes his privacy and is much more relaxed in his new home
            situation.
      --We are unable to monitor foster home for abuse potential. We could
            always drop in at HDC any time. Not able to discover how much
            ``nothing'' time ________ has at his home. We believe mental
            stimulation is important. However, his teeth are cleaned well.

                      THE PERMANENCE OF COMMUNITY PROGRAMS

        One of the greatest fears expressed by family members as the
    closure of Harborivew approached was that funding of community service
    programs provided less permanence for their family member than a
    facility directly operated by the state. In order to explore this
    issue, family members and guardians were asked if they thought
    community programs or institutions like Harborview provide greater
    permanence for people with developmental disabilities. Even with the
    closure of HDC, 54.5 percent of those responding said that they
    believed that institutions provided more permanence than community
    programs.

                            PERCEPTION OF PERMANENCE
    ------------------------------------------------------------------------
                                                       Number      Percent
    ------------------------------------------------------------------------
    Community programs............................            5         45.5
    Institutions..................................            6         54.5
    No Response...................................            7  ...........
    ------------------------------------------------------------------------

        It is clear from most of the comments received that families and
    guardians had great confidence in the Harborview staff and the care
    their family members received there. Families and guardians said that
    the HDC staff provided a warm and caring environment. Among their
    comments were:
      --As long as they are like Harborview. It never did have an
            ``institutional'' feeling-more like a combination of resort and
            large home. The small town is another reason that it was so
            successful. The community was so involved with Harborview, and
            Harborview with the community.
      --I never did consider Harborview an institution, because of the
            excellent treatment by staff and a wonderful doctor there. Also
            the whole community took pride in the people staying at
            Harborview.
      --So far I'm pleased with ________'s community program, but I believe
            this answer could vary according to an individual's
            circumstances and the verdict could still be out. Financial
            permanence is hopefully not at risk as well.
        While the closure of HDC demonstrated that state operated
    institutions do not guarantee life long care, the responses from
    families/guardian brought forward an important issue. From the family/
    guardian perspective, permanence is not only a guarantee of funding,
    but permanence of providers. One of the positive aspects of HDC was
    that many of the care providers had worked there for years. HDC staff
    got to know HDC residents and their families on a long-term basis.
        The staff at Harborview did not change often because, as state
    employees, their jobs offered good wages and benefit and retirement
    programs. Community program staff in comparable positions make
    significantly less, and often have minimal benefit and retirement
    packages. This has meant that care givers change more frequently in
    community programs. A number of family members/guardians commented on
    this.
      --The staff in Harborview changed very little over the years. This is
            very comforting for parents and clients alike Harborview also
            did a terrific job of communication with us, helping with home
            visit arrangements, etc. They were like our extended family!
      --There was greater permanence and professionalism at Harborview. I
            suspect there was also good cost accounting there too.
            Harborview provided more efficient use of state and federal
            facilities.
      --Each person has different needs. Staff turnover frequency must be
            addressed. At HDC, a person's routine can continue if a staff
            person quits. Others (staff) know the routine. At Hope, ARCA,
            if the major caregiver leaves, the resident must endure
            discomfort and change.

                         ECONOMIC IMPACT OF HDC CLOSURE

        Information Insights has gathered financial information on 88
    percent of the former Harborview Residents who were discharged in the
    last ten years. We have been unable to find any financial information
    on the remaining 12 percent of the former Residents.
        The following table details the annual costs and average annual
    costs of services received by the former Harborview Residents who were
    discharged in the last 10 years and whose current costs could be
    identified:

      CURRENT STATUS AND SERVICE COST FOR FORMER HARBORVIEW RESIDENTS:1988-
                                      1997
                 [1996 Harborview Cost of Care: $164,000/person]
    ------------------------------------------------------------------------
                                                    Annual cost  Annual cost
                  Status                  Number        all          per
                                                     residents     resident
    ------------------------------------------------------------------------
    Deceased.........................       \1\ 18  ...........  ...........
    Grant-Funded Services............            2       $5,905       $2,953
    MRDD Waiver--Funded Services.....           62    4,398,307       70,940
    Pioneer's Homes..................        \1\ 5      350,887       58,481
    Unknown..........................           12            ?            ?
                                      --------------------------------------
          Total......................           99    4,755,099  ...........
                                      --------------------------------------
          Total Living and Known.....           69    4,755,099      68,914
    ------------------------------------------------------------------------
    \1\ 1 Pioneer's Home resident died during fiscal year 1998; totals at
      end of year are 19 deceased/4 Pioneer's. Pioneer's Home costs for the
      remaining 4 are expected to be $299,864 per year, for an average of
      $74,966. This would change the average cost for all known former
      Harborview residents receiving services to $69,177.

        In addition to the cost of services, however, other new costs are
    incurred by the State of Alaska for other benefits received by these
    former residents. Other benefits may include Food Stamps and Adult
    Public Assistance. Limitations in data access systems did not allow
    Information Insights to get an exact cost for these benefits, but based
    on other existing data sources we were able to develop a close
    approximation as follows:
    Adult Public Assistance
        All but two of the HDC Residents discharged in the last 10 years
    were adults at the time of discharge. Each would have been eligible for
    between $0 and $45 per month in Adult Public Assistance prior to
    discharge. Post-discharge, each would be eligible for $362 per month
    (or slightly less if receiving SSDI), for a net increase of $317 per
    month ($3,804 per year) in Adult Public Assistance, and a total cost
    for the 64 living and known former HDC residents who are not in
    Pioneer's Homes of $243,456.
    Food Stamps
        Most, if not all, of the former HDC residents are unmarried
    individuals, for whom receipt of Adult Public Assistance would make
    ineligible for more than the minimum $10 in food stamps per month. The
    maximum being received by the 64 living and known former HDC residents
    who are not living in Pioneer's Homes would therefore be $640 per
    month, or $7,680 per year. A summary of annualized costs, by services
    received, shows the following:

                        COST OF SERVICES AND BENEFITS FOR FORMER HARBORVIEW RESIDENTS: 1988-1997
    ----------------------------------------------------------------------------------------------------------------
                                                        Grant-    MRDD waiver
                                                        funded       funded     Pioneer's   Total known  Unknown \1\
                                                       services     services      homes        living
    ----------------------------------------------------------------------------------------------------------------
    Number of Individuals..........................            2           62            4           68           12
    Annual cost of services........................       $5,907   $4,398,307     $299,864   $4,704,078            ?
    Additional cost of APA (maximum)...............        7,608      235,848  ...........      243,456            ?
    Additional cost of Food Stamps (maximum).......          240        7,440  ...........        7,680            ?
                                                    ----------------------------------------------------------------
          Total annual cost of services and               13,755    4,641,595      299,864    4,955,214            ?
           benefits................................
    Average annual cost per individual.............        6,878       75,082       74,966       72,871            ?
                                                    ----------------------------------------------------------------
          Total annual state cost of services and         13,515    2,003,967      299,864    2,317,346            ?
           benefits................................
    Average annual state cost of services and              6,758       32,322       74,966       34,079           ?
     benefits......................................
    ----------------------------------------------------------------------------------------------------------------
    \1\ Information Insights was not able to locate 12 of the 99 people discharged in the past 10 years from HDC.

        In 1996, the Division of Mental Health and Developmental
    Disabilities contracted with Erickson and Associates to estimate the
    state cost savings from closure of Harborview Developmental Center and
    implementation of the Proposed Alternative Service Delivery. The
    Erickson study showed 1996 Harborview costs at $164,000 per resident,
    and estimated Alternative costs at $84,000 per resident, for a net
    savings of $80,000 per resident. At the time, there were 23 remaining
    residents of Harborview. Two of the 23 have since died; following are
    the costs identified for the remaining 21:

                COMPARISON OF PROJECTED AND ACTUAL COST FOR SERVICES TO FORMER HARBORVIEW RESIDENTS: 1997
    ----------------------------------------------------------------------------------------------------------------
                                                        Grant-    MRDD waiver-
                                                        funded       funded     Pioneer's   Total known    Unknown
                                                       services     services      homes        living
    ----------------------------------------------------------------------------------------------------------------
    Number of Individuals..........................  ...........           15            3           18            3
    Annual cost of services........................  ...........   $1,408,985     $238,698   $1,647,683            ?
    Additional cost of APA (maximum)...............  ...........       57,060  ...........       57,060            ?
    Additional cost of Food Stamps (maximum).......  ...........        1,800  ...........        1,800            ?
                                                    ----------------------------------------------------------------
          Total annual cost of services and          ...........    1,467,845      238,698    1,706,543            ?
           benefits................................
    Average annual cost per individual.............  ...........       97,856       79,566       94,808            ?
                                                    ----------------------------------------------------------------
          Total annual state cost of services and    ...........      623,472      238,698      862,170            ?
           benefits................................
    Average annual state cost of services and        ...........       41,564       79,566       47,898            ?
     benefits......................................
    ----------------------------------------------------------------------------------------------------------------

        Based on the data compiled for this study, the Erickson and
    Associates study was very close to the final projections. Excluding the
    individuals who are deceased or for whom we have no financial data, the
    average annual cost for the individuals discharged in 1996 and 1997 is
    $94,800, of which $3,270 represents benefits not considered in the
    Erickson study.
        The Erickson and Associates study estimates, per individual, can be
    compared with actual costs as follows:

    ----------------------------------------------------------------------------------------------------------------
                                                                                             GF and GF
                         Study                         Federal    GF/MH funds   Corporate     program    Total costs
                                                        funds                    receipts     receipts
    ----------------------------------------------------------------------------------------------------------------
    Erickson Study--Harborview.....................      $57,884     $102,138  ...........       $3,977     $164,000
    Erickson Study--Alternatives...................       31,111       43,526       $3,362        6,057       84,257
    Information Insights Study--Alternatives              46,810       44,728  ...........        3,340       94,878
     (excluding benefits not considered in the
     Erickson study)...............................
    ----------------------------------------------------------------------------------------------------------------

        The alternatives have thus saved both the federal and state
    governments, with the bulk of the savings going to the State of Alaska.
    In part, the difference in allocation of savings between Federal Funds
    and GF/MH funds is due to the change (since the Erickson report) in
    Federal Medicaid reimbursement from 50 percent of costs to 59.8 percent
    of costs.
                                COMMUNITY IMPACT

        The economic impact from Harborview closure is primarily on the
    community of Valdez, which loses the Harborview payroll and indirect
    impact of that payroll. At the same time, however, there is a
    relatively minor positive economic impact on the communities where the
    residents were discharged. Analysis of the distribution of community
    discharges shows the primary community impacts to be in Anchorage and
    Valdez.

            Community Discharge                        Number of Individuals
    Anchorage.........................................................    43
    Bethel............................................................     3
    Dillingham........................................................     1
    Fairbanks.........................................................     4
    Ketchikan.........................................................     3
    Kodiak............................................................     2
    Soldotna..........................................................     2
    Valdez............................................................    19
    Wasilla...........................................................     1
    Unknown...........................................................     2
    [Deceased as of study date].......................................    17

                            Attachment 2.--Shawneen

        Shawneen is a 31-year-old woman who was one of the original babies
    supported by Hope. She lived the first 28 years of her life in several
    ICFMR facilities.
        On January 7, 1997, Shawneen moved into her own home with her good
    friend, Dana, as part of the Road Maps project. As a result of this
    move, Shawneen experienced remarkable physical changes. She began to
    sleep through the night. Her hands, which are affected by cerebral
    palsy, began to relax to the point that a surgery scheduled to help
    reduce thumb contractures was canceled. For years weight maintenance
    had been a challenge, but since moving into her own home she has been
    able to maintain her weight and has not been hospitalized once.
    Shawneen leads an active life, from volunteering at the Pioneer Home to
    enjoying the local arts. She and her house mate, along with her parents
    and support staff, have presented at several national conferences on
    how their lives have changed since moving from an ICFMR--because to
    them Shawneen now has a life she can truly say is her own.

                                     ______

                             Attachment 3.--Zachary

        Zachary is a 13-year-old boy who currently lives with his father in
    their home community of Kenai and attends the local elementary school
    just like most children his age. However, Zachary's current situation
    could have been very different had he not received the necessary
    supports to live such a normal lifestyle. Zachary was born at 34 weeks
    gestation and suffered multiple anomalies including a coarctation of
    the aorta and tracheo-esophageal atresia. As a result of his multiple
    medical issues and dependence on medical technology, Zach spent
    approximately the first five years of his life in the hospital. His
    father was forced to quit his job and move to Anchorage to be near his
    son.
        It was not until 1992 that the State of Alaska applied for a Home
    and Community Based Services Waiver that might allow Zach's future to
    be more than one of Zach's father shuttling him back and forth between
    the hospital and a nursing home. Zach was one of the first ventilator
    dependent children in the State of Alaska to be afforded the
    opportunity to live in a community setting. With the assistance of the
    State of Alaska, Zach and his family have been able to realize to the
    fullest extent possible their dreams for Zach--that of living a normal
    life. Zach receives support services in the form of in-home support,
    respite care, and specialized medical equipment through a Medicaid
    Waiver for Children with Complex Medical Conditions. Zach and his
    father moved back to Kenai where Zach resides with his Dad in their own
    home with the necessary support services for Zach to be successful. The
    outcome for Zach is that he is now fully integrated and thriving in a
    regular classroom environment at a nearby elementary school. Medically
    he has continued to improve and is no longer on a ventilator and does
    not require oxygen except during periodic illness. Zach is a happy,
    social kid who has many friends and is treated as a ``regular'' student
    in the classroom. He participates in all of the same activities that
    other kids do both in school and in the community. Zach is interested
    in computers, playing video games, snowmaching, and participating in
    any social activities with his friends and family. Through the advocacy
    and perseverance of those who saw Zach's abilities, not disabilities,
    Zach has become a successful, fully accepted member of his community.
                                     ______

                              Attachment 4.--Tyler

        Tyler was born on November 15, 1993. He was diagnosed at birth with
    a Diaphramatic Hemia, Bronchopulmonary Dysplasia, and was
    Developmentally Delayed. His respiratory status required insertion of a
    tracheotomy tube and use of CPAP to enable him to breathe. He also
    required gastrostomy feedings. Due to health concerns at birth, Tyler
    was medivaced to Anchorage and admitted to Alaska Native Medical
    Center.
        Tyler came to Hope Community Resources in 1994 and was placed in
    Foster Care. From 1994 through 1999 Tyler's health continued to improve
    due to consistent quality home care. In 1998 and 1999 Tylor's support
    team worked on a plan to enable Tyler to transition to his home village
    of Emmonak. Tyler left for Emmonak with his mother and brother on June
    7, 1999. Hope Community Resources staff have continued to monitor his
    progress. Tyler is doing well at this time.
        Tyler's individualized costs were extensive during his hospital
    stay at around $65,000 in foster care and we believe minimal costs for
    in-home supports now (which may be delivered through Bethel Community
    Services).

                                     ______

     Attachment 5.--Developmental Disabilities Direct Service Worker Study
     Results and Findings, Governor's Council on Disabilities and Special
                           Education, October 8, 1998

                               EXECUTIVE SUMMARY

        This study describes recruitment and retention challenges faced by
    23 of the 28 Developmental Disabilities (DD) Service Providers in
    Alaska. The agencies in this study employed 468 direct service workers
    (permanent FTEs), 73 first line supervisors and 351 on-call direct
    service workers. Based on these findings, the number of direct service
    workers statewide is estimated at 570, the number of first line
    supervisors is estimated at 89 and the number of on-call workers is
    estimated at 427.
        All respondents reported difficulties recruiting and retaining new
    workers. Approximately 17 percent of the permanent direct service
    worker positions were vacant at the time of the survey. This represents
    an estimated 98 FTE direct service worker vacancies statewide. On an
    annual basis, 948 direct service positions have to be filled to replace
    workers who have left. An additional 114 new workers have to be hired
    to provide direct services to the estimated 458 new people with
    developmental disabilities who begin receiving services each year
    statewide (duplicated count).
        Recruitment and retention costs are large and growing. Respondents
    reported spending $28,112 in advertising to recruit new workers in the
    first half of fiscal year 1998. This translates into estimated annual
    advertising costs of approximately $68,446 across the 28 agencies
    statewide. Survey respondents paid 34,683 hours of overtime during this
    same time period to cover shift vacancies due to unfilled positions.
    This translates into an estimated 84,446 hours annually, statewide and
    an estimated statewide annualized cost of $724,542 in overtime
    expenditures (beyond the straight time expenses). Survey respondents
    spent $131,170 for other recruitment costs (e.g., fingerprinting,
    administrative time, Hepatitis B vaccinations) April 16-June 12, 1998.
    This translates into an estimated statewide-annualized cost of $956,532
    in other recruitment costs.
        Direct service worker positions were vacant for an average of four
    weeks before being filled. When positions were advertised, the average
    agency received eight applications. However, the number of applicants
    who were actually qualified was only 50 percent. These findings suggest
    there is a need for a targeted, systemic workforce development plan to
    address challenges facing the DD service delivery system.
        A majority of respondents reported a number of major problems,
    which included: finding qualified direct service workers (82 percent);
    wage and hour considerations (70 percent); direct service worker
    turnover (68 percent); and staff training and development (65 percent).
    The top three recruitment barriers or disincentives reported were
    compensation and pay (81 percent), hours of work (76 percent) and lack
    of qualified applicants (70 percent).
        These findings indicate recruitment and retention challenges are
    pressing issues that must be addressed in order to ensure the
    maintenance of safe, quality services in the community for Alaskans
    with developmental disabilities. The Governor's Council on Disabilities
    and Special Education made several general recommendations about ways
    to address these challenges. These recommendations include strategies
    related to comparable wages and benefits, recruitment, retention,
    education and training, and efficiency and productivity.
        These strategies provide a starting point for addressing the
    workforce development challenges faced by DD Service Providers. The
    development, implementation and evaluation of an effective workforce
    development program in Alaska will require the cooperation and
    collaboration of a variety of stakeholders, including State agencies,
    provider agencies, consumer and parent advocacy organizations, the
    legislature, the Alaska Mental Health Trust Authority and postsecondary
    educational institutions.

                             BACKGROUND INFORMATION

        Direct Service Workers are employees of agencies serving
    individuals with developmental disabilities. Their primary job
    responsibilities are to provide training, support, supervision and
    personal assistance to these individuals. At least 50 percent of their
    work is spent in direct care tasks. Direct service workers may do some
    supervisory tasks, but their primary job responsibility is direct
    service work. Some direct service workers are hired as on-call workers.
    An on-call worker is any worker who is not guaranteed a certain number
    of hours per week or month.
        Direct service workers assist individuals with developmental
    disabilities to lead self-directed lives and actively participate in
    and contribute to community life. They have a variety of titles and
    positions such as residential counselor, respite worker, job coach,
    paraprofessional and direct care staff. They work in a variety of
    community settings including residential group homes, individual and
    family homes, work sites and parks and recreation settings. Some may
    work in more than one setting. Direct service workers work with people
    with developmental disabilities of all ages who have varying abilities
    and needs.
        The number of individuals and families who receive community-based
    services has increased considerably since 1992. In addition to new
    legislative increments, there are a number of factors contributing to
    this growth. The Home and Community-Based Waiver program was
    implemented in 1994. Harborview Developmental Center was closed in
    December 1997. And finally, core services were implemented in fiscal
    year 1998. In fiscal year 1999, as a result of legislative funding
    increases, Medicaid refinancing and core services, it is anticipated
    that every person on the Developmental Disabilities wait list as of 6/
    30/98 will receive at least some services by 6/30/99.
        However, growth can create problems. If the question is asked, ``Is
    the community prepared to handle this growth?'' the answer is ``No, not
    any longer!'' In Alaska, additional revenues have been allocated
    towards serving new people from the wait list. No increases have been
    allocated for the basic provider infrastructure in many years. As a
    result, the cost of inflation has hit providers hard. Staff turnover is
    high and it is difficult to recruit qualified applicants, affecting the
    quality of care provided to Alaskans with developmental disabilities
    and their families. As services have become more community- based and
    decentralized, the demand for direct service workers has increased,
    training needs have changed and turnover rates have increased.
        Previous studies indicate that recruitment and retention challenges
    experienced by agencies supporting people with developmental
    disabilities are substantial. One federally funded study followed 175
    newly hired direct service workers in 139 small Minnesota group homes
    to determine turnover rates (Larson, 1996 cited in Larson, 1997).
    Turnover rates among direct service workers in this study averaged 47
    percent per year in 1994 and 50 percent per year in 1995. Even worse,
    41 percent had left before completing six months on the job and another
    25 percent left before finishing 12 months on the job. On an annual
    basis almost 50 percent of these position turn over. These statistics
    parallel those experienced by Alaska DD service providers.
        While few studies have focused on the factors associated with
    successful recruitment, ``a lot of research has identified factors
    associated with turnover including:
      --staff characteristics (older staff are less likely to leave, women
            are less likely to leave),
      --pay and benefits (higher paid workers are less likely to leave,
            those with health insurance are less likely to leave, and those
            with paid leave time are less likely to leave),
      --work attitudes (those whose pre-hire expectations are met, who are
            satisfied with their jobs, who are committed to the
            organization are less likely to leave),
      --employment context (turnover is higher when unemployment is lower)
            and
      --agency characteristics (turnover is higher in smaller agencies, in
            newer agencies and newer settings, and in agencies serving
            people with more severe disabilities)''--(Larson, Hewitt &
            Lakin, 1994 in Larson 1997, p.4)
        This study examines salary, recruitment and retention issues in an
    effort to identify solutions that might be helpful in addressing these
    challenges as well as training and staff development issues.

                                    METHODS

        Recognizing the magnitude of salary, recruitment and retention
    issues, the Governor's Council on Disabilities and Special Education,
    in collaboration with the Association on Developmental Disabilities (a
    trade association of Developmental Disabilities (DD) service
    providers), conducted a statewide survey in April 1998. All 28 of the
    DD service providers were surveyed in an effort to quantify the extent
    and type of challenges confronting the DD service delivery system. The
    survey focused on both permanent and on-call direct service worker
    positions.
        The following definitions were used for this study:
        Direct Service Workers (DSW).--People whose primary job
    responsibilities are to provide training, support, supervision and
    personal assistance to individuals with developmental disabilities. At
    least 50 percent of their work are spent in direct care tasks. Direct
    service workers may do some supervisory tasks, but their primary job
    responsibility and more than 50 percent of their hours are spent doing
    direct service work.
        Full Time Equivalency (FTE).--Number of people who work the
    standard workweek of 40 hours (e.g., two workers who each work 20 hours
    per week equal 1.0 FTE).
        On-call Worker.--Any worker who is not guaranteed a certain number
    of hours per week or month.
        The study was conducted between April 16, 1998 and June 12, 1998.
    Surveys were mailed to the Executive Director of each agency. At least
    one telephone call was made to contact non-responding agencies in late
    May and early June. Of the 28 agencies surveyed, 23 returned surveys
    for an overall response rate of 82.1 percent. Follow-up calls were made
    to all agencies whose returned surveys were unclear.
        The Council used the Occupational Employment Statistics (OES) to
    compare the average and median hourly wages of DD direct service
    workers with similar positions in the community. The Alaska Department
    of Labor collects OES wage data as a part of a State-federal
    cooperative program. The data include both private and public
    (government) employers. The OES wage data was weighted according to the
    number of positions in each comparable occupation. DD service provider
    wage data was also weighted according to the number of direct service
    workers each agency employed.

                                SURVEY FINDINGS

    Agency characteristics
        The 23 agency respondents supported 3,000+ people with
    developmental disabilities (duplicated count) to live and participate
    in local communities with 468 FTEs employed as direct service workers,
    73 front line supervisors and 114 support staff and administrators.
    They also employed 351 on-call direct service workers, 3 on-call front
    line supervisors and 24 on-call support staff and administrators (see
    Table 1). The average ratio of direct service workers to the
    individuals supported in the community, excluding on-call workers, is 1
    to 6 and the median ratio is 1 to 7. If on-call workers are included,
    both the average and median ratios are 1 to 4.
        The 23 agencies opened 13 new sites or services in the past 12
    months and expanded the number of sites or services by 18. A total of
    376 new consumers were supported. If the ratio of direct service
    workers to individuals supported is consistent from year to year,
    approximately 94 new direct service workers, including on-call workers,
    were added to these agencies during the same time period.

                 TABLE 1.--CHARACTERISTICS OF SURVEY RESPONDENTS
    ------------------------------------------------------------------------
                                              Total     Average     Median
    ------------------------------------------------------------------------
    Number of People Served (duplicated        3,007      131          58
     count)................................
    Number of New Persons Served in the          376       16           7
     Past Year.............................
    Number of Direct Service Workers (FTEs)      468       21           8
    Number of Front Line Supervisors (also        73        3           1
     have direct service responsibilities).
    Number of Support Staff/Administrators.      114        5            .75
    Number of ``On Call'' Direct Service         351       15           5
     Workers...............................
    Number of ``On Call'' Front Line               3         .13   \1\ NA
     Supervisors...........................
    Number of ``On Call'' Support Staff/          24        1      \1\ NA
     Administrators........................
    Number of New DD Sites/Services........       13         .56   \1\ NA
    Number of Expanded DD Sites/Services...       18         .78   \1\ NA
    ------------------------------------------------------------------------
    \1\ The median is less than 1 in all of these instances.

        A variety of services were provided by the 23 agencies at the time
    they responded to the survey (see Table 2).
        Services included care coordination or case management (91
    percent), respite (83 percent), in-home support (74 percent),
    vocational (70 percent), supported living (65 percent), foster care (61
    percent), shared care (52 percent), personal assistance services (48
    percent), group home (30 percent), and sexual offender treatment (22
    percent). Nine other services were also provided by these agencies. The
    vast majority of respondents provided two or more types of services.
        1,197 people received care coordination or case management
    services. However, this number is somewhat misleading because some
    people only receive care coordination or case management services,
    while others receive them as a part of other services, (e.g.,
    vocational support). Following care coordination or case management,
    the number of people with developmental disabilities and their families
    supported with the following services was: respite (714 people),
    vocational support (394 people), supported living (277 people),
    personal assistance services (234 people), in-home support (188
    people), group home (126 people), foster care (119 people), shared care
    (27 people) and sexual offender treatment (22 people).

                                 TABLE 2.--TYPE OF SERVICES PROVIDED AND NUMBERS SERVED
    ----------------------------------------------------------------------------------------------------------------
                                                                   Number of      Total
                               Service                             providers      served      Average       Median
    ----------------------------------------------------------------------------------------------------------------
    Case Coordination...........................................           21        1,197           57           26
    Foster Care.................................................           14          119            9            3
    Group Home..................................................            7          126           18            5
    In-Home Support.............................................           17          188           11            3
    Personal Assistance Services................................           11          234           21            2
    Respite.....................................................           19          714           38           34
    Shared Care.................................................           12           27            2            1
    Supported Living............................................           15          277           19           12
    Sexual Offender Treatment...................................            5           22            4            5
    Vocational Support..........................................           16          394           25           12
    Other.......................................................            9    \1\ 1,197          133           49
    ----------------------------------------------------------------------------------------------------------------
    \1\ 20 day habilitation, 40 core services, 49 one-time funding, 84 legal advocacy services, 691 Information and
      Referral, 175 Family Resource Project training, 138 family support.

    Staffing challenges
        Of the 23 DD service providers, 82 percent reported that finding
    qualified direct service workers was a major problem (see Table 3).
    Other major problems included wage and hour considerations, staff
    training and development, and direct service worker turnover.
        Staff motivation was a problem for only 23 percent of the
    respondents, although it cut across both urban and rural agencies.

    Table 3.--Major Staffing Problems

                                                      Percent of respondents
    Finding Qualified Direct Service Workers..........................    82
    Wage and Hour Considerations......................................    70
    Direct Service Worker Turnover....................................    68
    Staff Training and Development....................................    65
    Staff Motivation..................................................    23
    Recruitment barriers
        Respondents identified the extent to which several factors were
    barriers or disincentives to their recruitment efforts. Overall the top
    five barriers were: compensation or pay (81 percent), hours of work (76
    percent), lack of qualified applicants (70 percent), lack of applicants
    (62 percent) and workload (55 percent) (see Table 4). At least 25
    percent of the respondents reported that each of the other listed
    barriers caused moderate or severe recruitment challenges for their
    agency. Clearly, recruitment was a significant issue for DD providers
    with the rate of pay and compensation, hours of work and the lack of
    qualified applicants considered major contributors to the problem.

          TABLE 4.--PERCENT OF AGENCIES REPORTING RECRUITMENT BARRIERS
    ------------------------------------------------------------------------
                                        Degree of difficulty (percent)
         Recruitment barrier     -------------------------------------------
                                     None       Mild     Moderate    Severe
    ------------------------------------------------------------------------
    Compensation/Pay............  .........         19         24         57
    Hours of Work (nights,               19          5         62         14
     weekends, holidays)........
    Lack of Qualified Applicants          9         22         35         35
    Lack of Applicants..........          5         33         38         24
    Workload (amount or                  18         27         41         14
     difficulty of work)........
    Severity of Consumers'               24         24         38         14
     Disabilities...............
    Lack of Recruitment                  30         25         30         15
     Resources..................
    Lack of Child Care..........         32         32         32          5
    Applicants Don't Have Work           33         33         29          5
     Ethic......................
    Location (transportation,            33         38         14         14
     commute)...................
    ------------------------------------------------------------------------

    Extent and Cost of Recruitment Challenges
        At the time of this survey, respondents reported 130 (80.5 FTEs)
    direct service worker vacancies (see Table 5). This was 17 percent of
    the full-time permanent direct service workforce or 28 percent of the
    total workforce. Direct service worker positions were vacant for an
    average of four weeks, ranging between 0 and 12 weeks.
        When direct worker positions were advertised, the average agency
    received eight applications (ranging two to 20). However, the number of
    applicants who were actually qualified for the job for which they were
    applying was only 50 percent. When qualified applicants were found,
    they often didn't accept the job once wages and benefits are discussed.
        The agencies surveyed spent $28,112 for advertising in the first
    six months of fiscal year 1998 ($60.07 per direct support worker
    position, excluding on-call positions) (see Table 6). The agencies also
    paid 34,683 hours of unplanned overtime due to staff vacancies during
    that same time period (74.1 hours per direct service worker). The cost
    of unplanned, vacancy overtime is approximately $595,160 per year for
    these 23 agencies or $1,272 per direct service worker.
        In addition to advertising and overtime costs, the DD providers had
    a number of other recruitment costs, including administrative time, the
    hiring process itself, fingerprinting, TB tests, Hepatitis B
    vaccinations, orientation training and other necessary training (e.g.,
    First Aid, CPR and Mandt training). These expenses equated to an
    average statewide cost per hire of $1,009 (see Table 7). Total average
    statewide cost per hire was $2,341.

                     TABLE 5.--STAFF VACANCY CHARACTERISTICS
    ------------------------------------------------------------------------
                                                                     ``On-
                                                           DSW       Call''
                                                                      DSW
    ------------------------------------------------------------------------
    Number of Staff Positions........................       468          351
    Total Number of Vacancies........................   \1\ 130       \2\ 24
    Total Number of Vacant FTEs......................        80.5     \2\ 24
    Percent of FTEs that were Vacant when Survey was         17            7
     Completed.......................................
    Total Number of Applicants for Last Position.....       166           NA
    Total Number of Qualified Applicants.............        83           NA
    Percent Qualified................................        50           NA
    Average Number of Applicants for Last Position...         8           NA
    Average Number of Qualified Applicants...........         4           NA
    Percent Qualified................................        50           NA
    Average Number of Weeks Position was Vacant......         4           NA
    ------------------------------------------------------------------------
    \1\ 31 Full Time and 99 Part Time positions.
    \2\ One respondent indicated that the agency ``hires as many qualified
      applicants as we can.''

    Table 6.--Recruitment Expenses

                                                                   Responses
    Total Spent on Advertising (7/1/97-12/31/97)..................$28,112.00
    Amount Spent on Advertising Per Direct Service Worker--All
        Employees \1\............................................. \1\ 34.32
    Amount Spent on Advertising, Excluding ``On-Call'' Workers....     60.07
    Total Number of Overtime Hours (7/1/97-12/31/97)..............    34,683

    \1\ Includes costs for both the 468 Full Time Employees and the 351
    ``On-Call'' Workers.
    ---------------------------------------------------------------------------

    Table 7.--Cost Per Hire

            Expense                                             Average cost
    Advertising.......................................................   $60
    Overtime.......................................................... 1,272
    Other Recruitment Costs........................................... 1,009
                                                                      ______
          Total....................................................... 2,341

        The cost to fill the 130 positions that were vacant between April
    16 and June 12, 1998 was approximately $304,330. According to both
    Alaskan and national experience, 41 percent (53) of these positions
    will be vacant again in less than six months and another 25 percent
    (33) will be vacant within a year.
    Estimated Statewide Challenge for DD Service Providers
        One primary purpose of this study was to develop statewide
    estimates of the number of staff members and the extent of recruitment
    challenges among DD service providers. This study included 82 percent
    of all Alaska DD service providers. The results of this study suggest
    that the total number of direct service workers statewide is
    approximately 570 (see Table 8). The number of front line supervisors
    is estimated to be 89 and the number of support staff and
    administrators 139. The number of on-call workers is estimated at 427.
        In the two-month period from April 16 to June 12, 1998, 158 direct
    service worker positions were estimated to be vacant statewide (79
    positions per month). This equates to a 166 percent turnover. Given the
    projected statewide increase of 458 new people served by these agencies
    in 12 months and the overall ratio of direct service workers to people
    supported, an additional 114 direct service workers need to be hired.
    Therefore, assuming these numbers remain constant (79 vacancies per
    month and 9.5 new workers hired per month), 1,062 direct service worker
    positions are projected to be refilled or filled annually.
        Statewide estimates of annual recruitment expenses to maintain a
    workforce of 570 permanent workers with a 166 percent turnover rate
    include: $68,446 for advertising; $724,542 for overtime (counting only
    the overtime portion of the costs for a worker earning an average of
    $10.38 per hour plus payroll expenses and benefits); and $956,532 for
    Other Recruitment Costs for a total of $1,749,520. The cost of
    recruitment and hire of the 114 staff position added to the workforce
    are estimated to be $121,866.

             TABLE 8.--STATEWIDE ESTIMATES FOR DD SERVICES PROVIDERS
    ------------------------------------------------------------------------
                                                                  Statewide
                                                    Study total    estimate
    ------------------------------------------------------------------------
    Number of Agencies............................           23           28
    Number of People Served (duplicate number)....        3,007        3,661
    Number of Direct Service Workers..............          468          570
    Number of First Line Supervisors (also have              73           89
     direct service responsibilities).............
    Number of Support Staff and Administrators....          114          139
    Number of On-Call Workers.....................          351          427
    Total DSW workforce vacancies (full-time and            130          158
     part-time) 4/16-6/12/98 \1\..................
    Total annual DSW workforce (full-time and part-         780          948
     time) vacancies..............................
    Total Spent on Advertising 7/1/97-12/31/97....      $28,112      $34,223
    Total Spent on Advertising in 12 Months.......      $56,224      $68,446
    Total Hours of DSW Overtime 7/1/97-12/31/97...       34,683       42,223
    Total Hours of DSW Overtime in 12 Months......       69,366       84,446
    Total Cost of Overtime @ $8.58 (overtime           $297,580     $362,271
     portion of time and one-half costs and
     payroll expenses 7/1/97-12/31/97.............
    Total Spent on DSW Overtime in 12 months......     $595,160     $724,542
    Total Other Recruitment Costs 4/16-6/12/98....     $131,170     $159,422
    Total Other Recruitment Costs in 12 months....     $787,020     $956,532
    Number of New People Supported in 12 Months...          376          458
    Number of New Direct Service Workers Needed...           94          114
    ------------------------------------------------------------------------
    \1\ 29 Full Time and 99 Part Time Positions

    Strategies currently used to address recruitment and retention issues
        Recruitment and retention issues were significant problems for DD
    service providers. Although this study was not intended to provide a
    comprehensive analysis of solutions to these challenges, the survey did
    ask respondents to indicate which, if any, of 12 possible strategies
    they used in recruitment and retention efforts (see Table 9). Overall,
    the most frequently used strategies were to provide flexible hours
    (e.g., flextime, job sharing, part-time work), allow time off without
    pay, offer paid leave time, provide competitive benefits and provide
    competitive wages. While many administrators reported using these
    strategies, they also reported struggling with recruitment and
    retention challenges.
        Respondents reported that wages and benefits were competitive among
    DD service providers. However, they also reported that wages and
    benefits were not competitive with other private and public
    (government) positions. Funding limits prevented agencies from offering
    retirement, and merit, step and cost of living increases as incentives.
    When positions with higher wages and better benefits become available
    in other agencies, staff moved on to those positions.
        Some agencies were able to offer more innovative strategies such as
    enhanced job responsibilities, education support and peer mentoring
    opportunities.
        Although 50 percent were able to offer bonuses for starting or
    completing a certain number of months on the job, they lowered the
    starting wage to offer the bonus after six months or one year of
    employment. It was reported that the lowered starting wages negatively
    impacted recruitment efforts.
        Only two agencies offered bonuses to current employees who
    recruited new workers or provided agency vehicles for staff use. No
    agencies provided childcare. Respondents also mentioned using
    internships as a way to find qualified staff, conducting extensive
    matching of staff and consumer lifestyles to make employment a natural
    of the employee's regular life and allowing independence as to how
    staff and consumers meet the goals of the service plan. The relative
    effectiveness of these various strategies in attracting and retaining
    good employees remains untested within the broader DD service provider
    community.

    Table 9.--Recruitment and Retention Incentives Used by DD Providers

            Incentives                                Percent of respondents
    Flexible Hours (flex time, job sharing, part-time work)...........    91
    Allow Time Off without Pay........................................    87
    Provide Paid Leave Time...........................................    78
    Competitive Benefits..............................................    65
    Competitive Wages.................................................    57
    Bonuses/Raises for Starting or Completing a Certain Number of
        Months on the Job.............................................    48
    Enhanced Job Responsibilities.....................................    48
    Education Support (tuition reimbursement, time off)...............    43
    Peer Mentoring Opportunities......................................    39
    Bonuses to Current Employees for Recruiting Staff who Stay........     9
    Transportation for Employees (agency-owned vehicle for employee
        use)..........................................................     9
    Provide Child Care......................................................

        The three most common benefits provided to direct service workers
    included mileage reimbursement, personal or vacation leave and medical
    insurance (see Table 10). At least 50 percent of the DD service
    providers offered sick leave, dental insurance, life insurance,
    retirement benefits and disability insurance. Less than 50 percent
    offered vision insurance, annuity plans and educational benefits.
    Respondents also mentioned providing a cafeteria plan for employees,
    which allowed employees to choose where to put their benefits (e.g.,
    medical annuity plan). The relative effectiveness of these various
    benefits is unknown.
        Some agencies provide benefits only to full-time staff. Other
    agencies indicated they considered hourly workers to be temporary
    employees and, provided no benefits. These positions turned over very
    frequently. Also, with few exceptions, hourly workers were not
    guaranteed hours.

    Table 10.--Benefits Offered by DD Providers

            Incentives                                Percent of respondents
    Mileage Reimbursement.............................................    83
    Personal or Vacation Leave........................................    83
    Medical Insurance.................................................    83
    Sick Leave........................................................    70
    Dental Insurance..................................................    70
    Life Insurance....................................................    65
    Retirement Benefits...............................................    61
    Disability Insurance..............................................    48
    Educational Benefits..............................................    43
    Vision Insurance..................................................    39
    Annuity Plan......................................................    39
    Other findings
        Twelve respondents elaborated on the recruitment and retention
    issues they faced in the Comments Section of the survey. Primary areas
    of concern centered on the inability to attract and retain qualified
    employees due to wage and budget restrictions. Wage rates and benefit
    packages were not competitive with other private and public
    (government) positions. Services had increased, but funding for such
    budget items as additional staff, travel and adequate office space had
    not.
        Agencies reported that many of these problems were interrelated.
    For example, low wages contributed to staff turnover and the inability
    to attract good qualified workers, as did the level of benefits
    agencies were able to offer. If agencies were able to offer raises to
    staff, it was at the expense of having adequate office space, clerical
    support, bookkeeping, program equipment, etc.

                                  PARITY STUDY

        Alaska Department of Labor (DOL) information was used to prepare a
    market analysis, including a projection of job demand and comparable
    wages. DOL materials indicated continued growth and competition for
    staff should be expected until 2005. The service industry is the
    fastest growing segment of the job market. DOL data was also used to
    compare wages paid for similar jobs.
        DD Service Providers must compete for employees in a segment of the
    labor market composed of largely unskilled workers, despite the level
    of skill needed and the responsibility assigned to direct service
    workers. The average wage paid to DD Respite and Residential Workers
    was $9.14 per hour. Table 11 shows the other occupations seeking
    employees in the same segment of the labor market.

       TABLE 11.--OTHER OCCUPATIONS SEEKING EMPLOYEES IN SAME LABOR MARKET
                                     SEGMENT
    ------------------------------------------------------------------------
                                                                    Amount
                       Occupation                       Average    more than
                                                         wage      DSW wage
    ------------------------------------------------------------------------
    Messenger or Delivery Persons...................      $10.52       $1.38
    Janitors/Cleaners Ex Maids/House Cleaners.......        9.79         .65
    Laborers, Landscaping and Groundskeeping........       10.82        1.68
    Order Clerks....................................       11.47        2.33
    Freight, Stock & Materials Movers: Hand.........       11.98        2.84
    Hand Packers and Packagers......................       11.17        2.03
    Sales Agents (Retail)...........................        9.54         .40
    Stock Clerks (Sales Floor)......................        9.42         .28
    Telemarketers/Door-to-Door Sales Workers........        9.80         .38
    ------------------------------------------------------------------------

        A parity wage for direct service workers was developed as follows:
      --Twelve occupations were selected from the Occupational Employment
            Statistics (OES) maintained by DOL. These occupations focus on
            residential support, care coordination, supervision, medical
            support and technology, teaching, counseling and vocational
            education. The emphasis varies across occupations but that is
            also true across the range of DD service providers.
      --The average hourly and median wages cited in the OES were used for
            comparison and calculation.
      --A ``weighted average'' was used rather than a ``simple average'' to
            increase statistical validity. There was a large difference in
            the number of job orders (i.e. the market demand) among these
            occupations. DD service provider wage data was also weighted
            according to the number of direct service workers each agency
            employed.
        The difference in average hourly wages paid to all DD direct
    service workers was $3.54 per hour (see Table 12). Respite and
    Residential Workers were generally paid less than other direct service
    workers were. As can be seen in Table 13, the difference in average
    hourly wages paid to Respite and Residential Workers was $4.78 per
    hour.

            TABLE 12.--COMPARABLE OCCUPATIONS--HUMAN SERVICE WORKERS
    ------------------------------------------------------------------------
                                                      Average       Median
                      Occupation                    hourly wage  hourly wage
    ------------------------------------------------------------------------
    Residential Counselors........................       $10.36       $10.63
    Human Service Workers.........................        14.10        12.91
    Vocational/Educational Counselors.............        21.86        20.58
    Physical Therapy Aides........................        15.17        11.50
    Recreation Workers............................         9.74         9.85
    All Other Professional, Technical and                 17.97        16.92
     Paraprofessional.............................
    All Other Therapists..........................        15.74        12.93
    Nursing Aides, Orderlies and Attendants.......        12.47        11.92
    Medical Assistants............................        12.34        11.95
    All Other Health Service Workers..............        13.13        12.70
    All Other Service Workers.....................        10.97        10.43
    All Other Health, Professionals, Technicians,         17.70        15.34
     Paraprofessionals............................
    Average.......................................        13.51        12.43
    Weighted According to the Number of Positions.        13.92        14.00
    DD Direct Service Workers.....................    \1\ 10.38    \2\ 10.53
    Difference....................................         3.54         3.47
    ------------------------------------------------------------------------
    \1\ Weighted Average.
    \2\ Weighted Median.

            TABLE 13.--WAGES PAID TO RESPITE AND RESIDENTIAL WORKERS
    ------------------------------------------------------------------------
                                                      Average       Median
                      Occupation                    hourly wage  hourly wage
    ------------------------------------------------------------------------
    Weighted Comparable Human Service Workers.....       $13.92       $14.00
    Respite and Residential Workers...............     \1\ 9.14     \2\ 9.48
    Difference....................................         4.78         4.52
    ------------------------------------------------------------------------
    \1\ Weighted Average.
    \2\ Weighted Median.

        The average wage of $13.92 for comparable human service workers
    represents an increase of $4.78 per hour for on-call respite and
    residential staff and an increase of $3.54 for permanent direct service
    workers. To obtain wage parity for all DD agency direct service workers
    would cost $6,238,084 (see Table 14).

    Table 14.--Amount of Money Needed to Raise DSW Wages to that of
    Comparable Occupations

            Calculation                                        Amount needed
    427 On-Call Respite/Residential Workers  $4.78
         1,000 hrs.......................................$2,041,060
    570 Permanent DSW  $3.54  2,080 hrs......... 4,197,024
                        --------------------------------------------------------------
                        ____________________________________________________

          Grand total............................................. 6,238,084

                         DISCUSSION AND RECOMMENDATIONS

        Despite the obvious cost issues of wage parity, it is an issue that
    must be addressed. The consequences for approximately 2,000+ Alaskans
    and their families who are dependent upon these staff for their care
    should not and cannot be ignored. Staff turnover creates instability
    and emergency situations that require frequent, intensive
    interventions. The cost to respond is far more costly than an across
    the board increase in wages and benefits.
        Qualified, well-trained and satisfied direct service workers are
    the backbone of the DD service delivery system. They are the reason why
    individuals with developmental disabilities remain safe, happy and
    productive community settings. The longevity of DD staff is critical to
    their successful, stable participation in the community.
        DD Service Providers are no longer in a position to increase wages
    and benefits or provide other incentives at the expense of their basic
    administrative infrastructure. Any increase in wages and benefits means
    a reduction in the number of hours of support provided to Alaskans with
    developmental disabilities. Recognition and positive reinforcement can
    only go so far.
        The DD service delivery system has created additional
    complications. Although the DD service providers are committed to
    individualized, consumer- centered services, it is difficult to attract
    and retain qualified staff, given their inability to guarantee hours
    and frequency schedule changes. Costs far exceed the allowable Medicaid
    Waiver limits for services such as care coordination and assisted
    living.
        Training and recordkeeping expectations have increased without a
    concurrent increase in funding. Because services are individualized,
    small agencies often need to hire part-time workers to remain flexible
    for individuals and families. The inability to offer full-time work
    makes it difficult to attract qualified applicants. In addition, it is
    sometimes difficult to hire staff to meet consumers' unique needs
    (e.g., staff fluent in Yupik).
        ``Research and best practices examples have identified several
    types of interventions that might help agencies to address their
    recruitment and retention challenges. These interventions range from
    providing realistic industry previews to high school and vocational
    college students before they enter the workforce, to improving access
    to preferred benefits and paid leave for part time workers, to
    instituting specific recruitment incentive programs, to developing
    welfare to work programs to train and match workers who want and need
    to work with vacancies in human service agencies. The challenge is to
    find ways to share these potential solutions with agencies statewide,
    to test their relative effectiveness, and to implement on a broad scale
    the most effective interventions to address recruitment and retention
    challenges.''--(Larson, 1997, pp. 18-19)
        In order to respond to the pressing workforce development issues
    identified in this study, Alaska must develop an effective workforce
    development program. Whatever workforce development program is
    developed, it must assist in planning and maintaining safe, quality
    community services for all infants and toddlers with disabilities. It
    must be comprehensive and available to all ILP Providers in Alaska. It
    must identify, develop and support specific strategies to address low
    wages, labor shortages, a lack of qualified applicants and high
    turnover rates. It will require the cooperation and collaboration of a
    variety of stakeholders including State agencies, provider agencies,
    consumer and parent advocacy organizations, the legislature, the Alaska
    Mental Health Trust Authority and postsecondary educational
    institutions.
        The Governor's Council on Disabilities and Special Education offers
    the following general recommendations for review and action by key
    stakeholders:

                    COMPARABLE WAGES AND BENEFITS STRATEGIES

        Place particular emphasis on increasing the wages of respite and
    residential workers since these positions have the highest turnover.
        Contact other states (e.g., Oregon) that have been successful in
    receiving wage and/or benefits increases for DD direct service workers
    to learn more about their strategies and applicability to Alaska.
        Decide how to best present the information in this study to members
    of the legislature.
        Develop a comprehensive legislative strategy presented in ``bottom
    line'' business terms as well as human services terms.

                             RECRUITMENT STRATEGIES

        Expand the pool of Direct Service Workers through the Alaska
    School-to-Work, Welfare-to-Work, Return-to-Work and Displaced Worker
    programs.
        Target recruitment, training and support programs to persons in
    specific age, disability and culture groups.
        Improve DSW compensation, benefits, benefits flexibility and
    alternative compensation strategies (e.g., tuition benefits and raises
    upon completion of degree programs).
        Develop a better understanding of DSW roles and characteristics and
    the needs of people filling those roles.
        Consider making the position of recruiter a step in agencies'
    career ladder.
        Share innovative recruitment strategies with other DD Service
    Providers.
        Stress the availability of mentors and peer support during
    interviews.

                              RETENTION STRATEGIES

        Develop realistic job previews.
        Provide training and technical assistance to measure and reduce
    staff turnover.
        Develop a program to enhance the status of Direct Service Workers.
        Share innovative retention strategies with other DD Service
    Providers
        Establish mentor and peer support programs.
        Implement a peer assistance program between consumers to allow for
    staff networking.

                       EDUCATION AND TRAINING STRATEGIES

        Identify DSW training needs.
        Identify DD Service provider training needs.
        Develop an ``Earn as You Learn'' program (competency-based
    training, multi-level degree options).
        Examine the cost and programmatic implications of training people
    for universal worker positions across a variety of employment settings.
        Provide technical assistance, training and support on the delivery
    of training by mentors and supervisors.
        Expand training and career development opportunities for Direct
    Service Workers.
        Develop a competency-based training program for DSW mentors and
    supervisors.

                     EFFICIENCY AND PRODUCTIVITY STRATEGIES

        Implement the Medicaid Waivers Study.
        Examine the DD service delivery system in terms of the wait list
    for services, the use of one-time funds and the allocation of resources
    across communities.
        Examine the cost implications of improving recruitment and
    retention outcomes.
        Promote consumer-directed services.
        Examine the cost and programmatic implications of joint purchasing
    programs for insurance, materials, supplies, equipment; cooperative
    childcare programs, etc., perhaps in collaboration with the United Way
    and other non-profit trade associations.
        Consider establishing a cooperative network to coordinate
    recruitment efforts across all DD service providers in the state (e.g.,
    participation in job fairs, 1-800 number, videotapes, brochures, sales
    portfolios, Internet).
        These strategies provide a starting point for addressing the
    workforce development challenges faced by DD Service Providers. This
    study identified significant needs in this area. These needs must be
    addressed if Alaska is to continue providing safe, quality services in
    the community for individuals with developmental disabilities.

        Senator Stevens. Thank you. Mr. Jessee.

    STATEMENT OF JEFF JESSEE, ALASKA MENTAL HEALTH TRUST
                AUTHORITY

        Mr. Jessee. Thank you, Senator Stevens. For the record, my
    name is Jeff Jessee, and I am from the Mental Health Trust
    Authority, a unique public foundation which uses the income
    from its endowment managed by the Permanent Fund Corporation
    and 1 million acres of land across Alaska to improve the lives
    of our beneficiaries, which include people who experience
    mental retardation and other mental disabilities.
        As the commissioner has said, Alaska has much to be proud
    of, but we have far to go. In many ways, our Special Olympians
    are not that special at all. In fact, in many important ways
    they are not. They want and need many of the things and all the
    things that we all want and need, housing, employment, health
    care, and a place in our community.
        The commissioner talked about our efforts to
    deinstitutionalize people in Alaska. The important thing to
    know is that we did it the right way, not by simply turning
    people out onto the streets, but by developing the community-
    based alternatives that they need to live without institutions.
        Through our partners, such as the Alaska Housing Finance
    Corporation, an organization that has supported the development
    of these housing alternatives for many years, we were able to
    provide these kinds of alternatives.
        It is important also to realize that 70 percent of all of
    these community programs are paid for through the medicaid
    program, one of the most essential programs for our
    beneficiaries.
        In rural Alaska, we face special challenges to help people
    live in their communities, cared for by their families and
    communities. We need to increase the availability of supported
    housing and assisted living facilities in rural communities.
    Not only will this provide services in their homes for our
    Special Olympians and others, but it will provide badly needed
    cash economy jobs in those communities, a situation I know you
    are well aware of.
        In the area of employment, nothing is a bigger barrier to
    employment than the lack of affordable health care coverage. As
    the commissioner stated, that is often the major barrier to
    people becoming employed. In my work at the Disability Law
    Center, I had to recommend that my clients not take jobs
    because they would lose their medicaid eligibility, and the
    kind of jobs they could get would not come with health care
    coverage.
        We need more employers like this hotel, the Sheraton,
    Burger King, Carr's, McDonald's. We all know that the pride and
    joy that we see on the faces of our Olympians as they compete
    successfully in the Games, but I have seen the smiles and the
    pride and the joy of getting that check for a real job well
    done.
        In the area of health care, as the commissioner said, the
    Infant Learning Program is really the starting point of
    maximizing the potential of all people who experience mental
    disabilities. As she also mentioned, the special smile effort
    on the part of the Special Olympics identified one-third of the
    athletes that came through as in need of pain or infection
    management for their dental problems. It makes simply no sense
    to just wait for dental problems to get to that level before
    any care is offered.
        Your efforts to support us and the State with FAS
    prevention programs is absolutely one of the most important
    things that is happening. As many people have said, it is the
    number 1 most preventable cause of mental retardation that we
    know about.
        In rural Alaska, to address these issues we also need a
    network of behavioral health aids, patterned after our very
    successful health aid model which you, Senator Stevens, helped
    pioneer in the State. This would allow the addressing of the
    underlying issues of alcohol abuse, mental health problems, and
    the special support needs of our individuals that are trying
    desperately to live in their home communities with their
    families.
        They also need a place in the community. They need support
    often to live in the community independently, but what does it
    say when the wages of people that we pay to provide the support
    is less than a beginning clerk at a Wal-Mart? We need
    additional workforce development. We need better training for
    our people who are in these communities, and we need a
    recognition that people who experience mental disabilities can
    have a full and complete participation in our community.
        It used to be that we sterilized people with mental
    disabilities. Now, those people have families, and they need
    help to support those families, and the Mental Health Trust,
    among others, is putting out grant money for supporting
    parenting programs to assist them in becoming better parents.
        They have problems with the law, which is why the Trust and
    others have supported the development of the mental health
    courts. Senate bill 1865 passed the Congress last year, but was
    not funded. We need your help with that.

                               PREPARED STATEMENT

        Finally, I want to stress the importance of the
    Developmental Disabilities Act. The DD Act provides a tripod of
    effort that has become the backbone of Alaska's efforts in this
    regard, the Developmental Disabilities Planning Council, the
    university-affiliated program, and the Protection Advocacy
    Agency.
        Thank you, Senator, for your attention, and thank you for
    coming.
        [The statement follows:]

                       Prepared Statement of Jeff Jessee

       Mr. Chairman and members of the Committee on Appropriations, thank
    you for the opportunity to testify today at a special hearing on
    promoting health for persons with Mental Retardation.
        I represent the Alaska Mental Health Trust Authority, a public
    foundation that serves four groups of beneficiaries: people with mental
    retardation and similar disabilities, people with mental illness,
    chronic alcoholics with psychosis, and people with dementia. Our
    mission is to improve the lives and circumstances of Trust
    beneficiaries. The Trust is concerned with the whole person: health,
    safety, economic productivity, housing, and living with dignity in the
    community. I have attached some background information about the Trust
    to these comments.
        The Trust is pleased to have this opportunity to address the
    Committee during the 2001 World Games held here in Anchorage, Alaska.
    In 1999, Anchorage hosted the International People First conference,
    with thousands of visitors with mental retardation and similar
    disabilities from countries around the world. The People First
    Conference and now the World Games helped pave the way for Anchorage to
    be as accessible to people with disabilities as it is today.
        The Special Olympics report on health care brought forward many
    issues that ring true for Alaskans with mental retardation and similar
    disabilities. The Trust, as a foundation that serves the same people as
    does the Special Olympics, has identified several similar issues and
    has partnered with the State of Alaska on many levels to improve the
    health and overall lives of the 11,000 Alaskans with developmental
    disabilities. Our written comments address some of these below.
        For further information, pleas contact me a 550 West Seventh
    Avenue, suite 1820, Anchorage, Alaska 99501 or phone (907) 269-7960.
    You may also find it helpful to contact the Governor's Council on
    Disabilities & Special Education, the Disability Law Center, or the
    Center for Human Development, Alaska's three federally mandated
    agencies to plan, advocate, and educate on behalf of people with
    developmental disabilities.

                            DE-INSTITUTIONALIZATION

        Families of people with mental retardation and similar disabilities
    have been successful in convincing low-population and small states to
    move away from large institutions towards home and community based
    care. ``On June 30, 1998 every state except Alaska, District of
    Columbia, Maine, New Hampshire, New Mexico, Rhode Island, Vermont, and
    West Virginia was operating at least one large state mental
    retardation/developmental disabilities facility.'' (University of
    Minnesota: May 1999) This national trend continues even though Medicaid
    expenditures for home & community based services are far lower than
    payments to institutions. Medicaid programs can be further improved to
    ensure quality community-based care and supports to the families who
    care for their relatives with disabilities.
        We are proud of the work we have done to de-institutionalize people
    with developmental disabilities. The state's Developmental Disabilities
    Planning Council advocated for years to have enough community-based
    services so that individuals with mental retardation did not have to
    move to Valdez or Anchorage and live in an institution. The Council
    worked with Commissioner Perdue's office to first place a moratorium on
    admissions to the state institution, and with the legislature to find
    sufficient community service funding. When the Trust was created in
    1994, one of the first actions the Trust made was to pay for the
    operations of the institutions. This allowed the legislature and
    Commissioner to re-allocate funds to more effective programs across the
    state, and to move residents to community. At the same time, Alaska
    Housing Finance Corporation stepped forward with the capital dollars
    needed to build the accessible housing required by people who then
    lived in institutions.
        The process took three years. Harborview Developmental Center was
    closed December 31, 1997. Institutional funds were re-distributed to
    community-based services, and the Trust ended its funding for the
    institution. The next year, all of Alaska's private institutions were
    de-certified, again with a partnership among the Council, the Trust,
    Alaska Housing Finance Corporation, and providers under the leadership
    of the Department of Health and Social Services.
        The Trust funded a De-institutionalization Impact Study in 1998,
    which found a net savings of $69,122 per person. Former residents and
    their guardians rated quality of life as high in most areas. Community
    based services are meeting their wants and needs, but more than 75
    percent still want jobs.

                                    MEDICAID

        Of people with developmental disabilities surveyed in 1999, 69
    percent have Medicaid; 24 percent receive Medicare. Craciun Research
    Group (1999) The Beneficiary Survey Project: A Marketing Research
    Report Alaska Mental Health Trust Authority, Anchorage, Alaska.
        Medicaid pays for 70 percent of Alaska's home and community-based
    care for people with disabilities. Medicaid waivers have changed the
    lives and circumstances of people with mental retardation and other
    developmental disabilities. Alaska does not have managed care plans in
    the way that other states do, but Medicaid waivers that pay for home
    and community-based care for people with mental retardation and similar
    disabilities act as managed care. Because of this, people with mental
    retardation who are eligible for Medicaid waiver services wait on
    waiting lists for years in Alaska and in other states.
        In 1998, Alaska ranked 31st in the country in terms of community
    services fiscal effort (spending for services per $1,000 of total state
    personal income). Several studies show that a state's size and wealth
    is not a determinant of community spending. Alaska has had difficulty
    participating aggressively in the Home and Community Based Services
    Waiver program. In Alaska, the Trust paid for a review of Medicaid
    waivers, conducted by the state's developmental disabilities planning
    council. The state is in process of streamlining some of the waivers to
    preserve the individualized services yet pay providers more quickly.
    Some federal changes could improve Medicaid home and community based
    service participation as well.

                                  HEALTH CARE

        Of people with developmental disabilities surveyed in 1999, 34
    percent have been refused medical care because of their situation. 44
    percent have trouble getting health insurance. 33 percent went without
    medical care or had to postpone it for lack of money. Craciun Research
    Group (1999) The Beneficiary Survey Project: A Marketing Research
    Report Alaska Mental Health Trust Authority: Anchorage, Alaska.
        Public forums conducted in 2000 by the Governor's Council on
    Disabilities and Special Education brought forward following several
    major health care barriers: (1) communication with health care staff
    (38 percent); (2) cost of services (22 percent); and (3) inadequate (or
    lack of) health insurance. Other health areas they need help with
    included exercise (24 percent), diet/nutrition (22 percent), stress
    management (15 percent), and anxiety (13 percent). Governor's Council
    on Disabilities & Special Education (2000) Anchorage, Alaska.
        People with disabilities living in remote areas of the state have
    particular difficulty accessing health care services. Inadequate and
    unaffordable health care is major barriers to independent living and
    employment. The common needs of people with developmental disabilities
    include durable medical equipment, assistive technology, medicines and
    personal assistance services. These are rarely fully covered by health
    insurance. Appropriate mental health and substance abuse treatment are
    difficult to find because providers rely on cognitive treatment
    approaches that are not appropriate for people who have mental
    retardation and similar disabilities.
        Medicaid buy-in for people with disabilities Health insurance is
    inadequate for people with all kinds of chronic health problems. It is
    particularly difficult for a person who has more than one problem, such
    as mental retardation and depression or alcoholism. Federal laws
    permitting insurance parity have helped somewhat in some states, but
    that has not yet been the case in Alaska. High-risk insurance pools
    have been as helpful as once hoped.
        Alaska is one of the first states to implement the Medicaid buy-in.
    Starting October 2000, Alaskans with disabilities are able to buy into
    the state Medicaid program, enabling them to acquire and maintain jobs
    that do not have sufficient heath insurance to address their disabling
    conditions. This Medicaid innovation has the potential to help hundreds
    of Alaskans with disabilities to get and keep employment.

                                  DENTAL CARE

        47 percent of respondents with developmental disabilities have
    trouble getting eyeglasses, dental work or hearing aids. Craciun
    Research Group (1999) The Beneficiary Survey Project: A Marketing
    Research Report Alaska Mental Health Trust Authority, Anchorage,
    Alaska.
        Currently, Medicaid coverage of adult dental services is limited
    under statute to the minimum treatment for the immediate relief of pain
    and acute infection. This level of service is insufficient to meet the
    needs of adult Medicaid clients, as no preventive and restorative
    services or dentures are covered. Many people with disabilities and
    elders have serious mouth and gum tissue problems due to drug reactions
    from required prescription medication. There are very few payment
    options for adult dental services through state or private resources.
    Tribal health programs have limited resources for the delivery of
    dental services.
        There were 32,384 adults eligible for Medicaid in fiscal year 1999.
    Of these, 5,670 were elderly and close to 8,000 have disabilities
    including mental retardation. About 40 percent of adults require
    periodontal and endodontal work, 25 percent need restorative work
    (crowns and bridges), and over 3,100 need dentures. All of them need
    routine preventive services.

                             FETAL ALCOHOL SYNDROME

        Fetal Alcohol Syndrome is a preventable developmental disability.
    The Trust has invested hundreds of thousands in prevention of FAS
    through treatment for women, as have the state and federal government.
    We need to continue this effort, and we need to increase services for
    individuals who already live with FAS.

                              SUPPORTED PARENTING

        Of people with developmental disabilities surveyed in 1999, 20
    percent had children. Half those families had children living out of
    the home, presumably in state custody. One third of people with mental
    illness had children under 18 who lived out of the family home, and
    over one-third of children of alcoholics were also living away from
    home. Craciun Research Group (1999) The Beneficiary Survey Project: A
    Marketing Research Report Alaska Mental Health Trust Authority,
    Anchorage, Alaska.
        Parents with disabilities, mental health illness, or severe alcohol
    problems often need support in fulfilling their parenting
    responsibilities. Without support, these parents are referred for child
    protective services (CPS). Alaska needs to:
        (1) Prevent child abuse and neglect in families where parents have
    mental retardation and similar disabilities;
        (2) Keep families together with supportive services once a report
    is made to CPS; and
        (3) Work closely with CPS to help reunify the family once a child
    is removed from his or her home.
        With changes in the CPS, it is more important than ever that
    parents receive an adequate amount of support services to help them
    fulfill their parenting responsibilities. All families referred to CPS
    are given a time limit for changing the situation that leading to state
    involvement. Parents with disabilities are often at a disadvantage
    since they often need longer time periods and more intensive services
    that are currently provided.
        For parents who are mentally ill, a recent pilot program aimed at
    diverting them from entering into the CPS is currently underway.
    Parents who experience a developmental disability and their advocates
    have been working hard to identify system barriers that increase the
    risk for having these parents' children removed from their homes.
    Necessary services include intensive case management with a parenting
    focus, training to CPS workers on developmental disabilities and case
    planning.

        SUPPORTING CAREGIVERS: FAMILY SUPPORT AND WORKFORCE DEVELOPMENT

        Family Supports.--Most people with developmental disabilities (66
    percent) receive help from their families. 56 percent have family
    problems. 62 percent have a hard time taking control of their life.
    Craciun Research Group (1999) The Beneficiary Survey Project: A
    Marketing Research Report Alaska Mental Health Trust Authority,
    Anchorage, Alaska.
        Families who care for their disabled members sometimes need support
    themselves. Twenty-four hour care leads to family problems and can lead
    to unnecessary institutionalization. Respite care is a crucial break
    for family members who are doing the right thing. Support groups for
    parents and siblings of people with mental retardation have proved
    helpful in developing better relationships and maintaining home
    situations for people with mental retardation and similar disabilities.
        Workforce Development.--High staff turnover, low social status,
    insufficient training, limited educational and career opportunities,
    and poor wages undermine the commitment of direct service staff and
    make it very difficult to recruit, train and retain qualified and
    committed individuals in direct support roles in disability, mental
    health, substance abuse treatment and aging fields. The persistence of
    these conditions is at crisis level.
        Alaska's reimbursement for all care providers--particularly in
    remote, frontier communities--is so low that very few individuals want
    to take on that kind of job. This demonstrates a very poor regard for
    people with mental retardation and similar disabilities. To that end,
    the Trust is working with the state Developmental Disabilities Planning
    Council and provider groups to develop an industrial consortium, hoping
    for a federal Department of Labor workforce development grant to
    bolster daily support to a variety of individuals who have
    disabilities.
        The Alaska Alliance for Direct Service Careers is an emerging
    coalition of organizations and individuals committed to strengthening
    the quality of disability, mental health, substance abuse treatment and
    aging services by strengthening the direct service workforce. The
    Alliance has developed a state agenda to address those industry-wide
    conditions that are harmful to people who rely on direct services.
    Well-planned workforce development strategies are needed to strengthen
    the direct service workforce.

                              MENTAL HEALTH COURTS

        33 percent of respondents with developmental disabilities have been
    to jail. More than half (57 percent) of those jailed felt they should
    have been given medical care instead. Almost 66 percent of people
    experiencing alcoholism with psychosis, 38 percent of people with
    mental illness, and 10 percent of people experiencing dementia have
    been to jail. Craciun Research Group (1999) The Beneficiary Survey
    Project: A Marketing Research Report Alaska Mental Health Trust
    Authority, Anchorage, Alaska.
        The Alaska Court System instituted the 3rd ``mental health court''
    in the United States in 1999. Two district court judges in Anchorage
    convened a working group with the Alaska State Troopers, Anchorage
    Police Department, district attorney, public defender, public guardian,
    substance abuse treatment agencies, mental health treatment agencies,
    developmental disability service providers, and the Department of
    Corrections to find a way to divert the inordinate number of
    individuals with disabilities from criminal justice instead of
    necessary treatment. The Court System received its first funding for
    the mental health court in November 2000 from the Alaska Mental Health
    Trust.

               DEVELOPMENTAL DISABILITIES ACT AND BILL OF RIGHTS

        The Developmental Disabilities Act and Bill of Rights (DD Act) is
    the only Federal initiative that focuses on people with mental
    retardation and other developmental disabilities. The DD Act has three
    prongs: Developmental Disabilities Planning Councils, Protection and
    Advocacy agencies, and University Affiliated Programs in every state
    and territory. The Protection and Advocacy agencies protect rights in
    the community and access to health care, the University Affiliated
    Programs are our best method to develop personnel to work in the field
    of developmental disabilities. The Developmental Disabilities Planning
    Council has a special relationship with the Trust as it recommends
    Trust funding for people with developmental disabilities. Without the
    Council's guidance, Alaska would not have been the first state in the
    union with no state or private institutions for the mentally retarded.
        The Special Olympics recommendations are a testament to the need
    for more and better research, individual advocacy, and changes in
    services at state and federal levels to improve health care for people
    with developmental disabilities. Many major federal public health
    initiatives such as Healthy People 2010 focus on preventing &
    remediating health problems but do not adequately address populations
    more likely to be affected by the health problems, nor do they
    adequately address living with chronic health problems. The federal
    government can require that federally mandated efforts such as Healthy
    People coordinate with other federally mandated agencies including
    Developmental Disability Planning Councils and state Aging commissions.
        Just over 10 years ago, Congress required states to prepare a
    report on the state of people with developmental disabilities, state-
    by-state. Developmental Disability Planning Councils and University
    Affiliated Programs conducted these research projects, called the 1990
    Report, and the 1990 Report has guided states' disability policy ever
    since. Perhaps it is time to revisit the 1990 Report and again find out
    state-by-state what is working and what needs work in the lives of
    people with mental retardation and similar disabilities.

      MORE INFORMATION ABOUT ALASKANS WITH MENTAL RETARDATION AND SIMILAR
                                  DISABILITIES

    Demographic profile
      --Their median household income is above average at $17,628, but
            their personal income is very low: $7,215 per year.
      --15 percent fish or hunt for subsistence.
      --An average 32 percent are employed, at least part time or
            seasonally.
      --They get out often (73 percent at least once a week); and 75
            percent have activities or hobbies to entertain or express
            themselves.
      --16 percent live in a group home.
      --15 percent live with a spouse or cohabit.
      --Very few live alone (14 percent); and 47 percent did not decide for
            themselves where they would live, but an average 45 percent are
            very satisfied with their living arrangements.
      --Many report being happy (29 percent very happy, 42 percent somewhat
            happy).
    Their problems and concerns
      --An average 28 percent need more help than they are currently
            receiving.
      --67 percent would like to have more education.
      --61 percent receive Social Security.
      --62 percent say finding satisfying work is a problem.
      --68 percent say they have financial needs that are not covered by
            existing services.
      --74.3 percent do not have enough money.
      --55 percent say getting transportation is a problem.
      --65.7 percent have trouble finding out about services, and 72
            percent have trouble finding the right services in the
            community.
      --51.5 percent need help with legal matters.
      --49 percent have trouble finding affordable housing.
      --72 percent feel left out of things.
      --62 percent say they do not have a decent social life.
      --46 percent report physical, emotional, or sexual abuse as a
            problem.
      --49 percent feel unsafe when out and about.
      --68 percent say that prejudice is a problem.
        Craciun Research Group (1999) The Beneficiary Survey Project: A
    Marketing Research Report Alaska Mental Health Trust Authority,
    Anchorage, Alaska.

        Senator Stevens. Thank you very much, Mr. Jessee.
        Dr. Kleinfeld.

    STATEMENT OF JUDITH KLEINFELD, PROFESSOR, UNIVERSITY OF
                ALASKA, FAIRBANKS, AK

        Dr. Kleinfeld. Senator Stevens, we are deeply grateful for
    the $29 million fund that you have provided for fetal alcohol
    syndrome, and to show to you that this investment in Alaska has
    national and worldwide benefit, I want to draw to your
    attention and to that of the Surgeon General and Dr. Shriver
    and to all those here who are working in this area to
    approaches that have been not tried in the rest of the country,
    but are showing enormous promise.
        The first is a program run by a doctoral student of mine,
    Steven Jacquier, aimed at the prevention of fetal alcohol
    syndrome. We can lecture to children all we want, and they do
    not believe us, but they believe what they see with their own
    eye, and what Mr. Jacquier is doing is science experiments in
    classrooms.
        He takes laboratory mice, and he force-feeds pregnant mice
    alcohol with the children. After the pregnancy has reached a
    later point in gestation, the children sacrifice the mice, and
    they see what has happened. They see, for example, that instead
    of eyes, these mice have slits, and sometimes their brains are
    emerging from their skulls, and then they believe what fetal
    alcohol syndrome is, and that they and people they know and
    they love are vulnerable.
        We are testing this program, we are documenting its
    effects, and we think that it offers tremendous advantages not
    only in the prevention of fetal alcohol syndrome, but also in
    science education, in laboratory techniques, to children all
    over the Nation.
        The second program that we have developed at the University
    of Alaska that holds tremendous national promise goes beyond
    the laboratory scientists, the researchers at the university,
    people like me who are usually the recipients of Federal
    grants, and instead taps into the wisdom of people with
    disabilities themselves.
        These two books, which I edited and which I will present to
    Dr. Shriver, have actually been done by people with fetal
    alcohol syndrome, by their parents, by their teachers, and they
    have figured out the most imaginative, the most inventive
    strategies for dealing with this disability. These are people
    who work with this every day, who dearly love the children,
    have done everything in their power and in their lives to
    figure out what works, and sometimes they come up with things
    that are a whole lot better than scientists who are the
    recipients of Federal grants. We need, as a scientific
    community, to enlarge our appreciation of what knowledge and
    wisdom is, and to include what I have termed the wisdom of
    practice.
        I would like to conclude by mentioning one area where there
    is still a tremendous problem, and very little progress, and
    that is young people with fetal alcohol syndrome are very often
    in trouble with the law, and particularly, and I will say it,
    difficult as it is, this terrible area of sexual molestation
    and sexual abuse, and there are reasons for this.
        For one thing, to young people, fetal alcohol syndrome
    means cognitive disability. They cannot predict the results of
    their actions. They have a very difficult time controlling
    their impulses. They are more comfortable with younger people,
    and they can repeat the rules. I have heard them repeat the
    rules, and they do not understand what these rules mean, so the
    authorities think they are just disobeying.
        Our legal system does not have the appropriate categories
    to deal with people with this type of diminished capacity. They
    do not have the type of support or incarceration facilities.
    Frequently, what happens is, the young people are exposed to
    people who just model for them worse things to do, and when out
    on parole, their memory lapses mean they forget to see their
    parole officer.

                               prepared statement

        One of the great areas of need is to bring together the law
    enforcement community and to see what can be done to adjust the
    sentencing guidelines of categories to assist those who deal
    with these people protect themselves and also protect the
    community.
        Thank you.
        [The statement follows:]

                     Prepared Statement of Judith Kleinfeld

                                  INTRODUCTION

        Senator Ted Stevens deserves enormous appreciation from us all for
    his hard work and his foresight in securing a five-year, $29 million
    grant for the state of Alaska to prevent fetal alcohol syndrome and to
    assist those who suffer from it.
        Senator Stevens is helping to prevent what happened to young boys
    like ``Oscar,'' in southwest Alaska, from happening to others. This is
    a terrible tale:
        At 15 years old, Oscar made the high school track team. He was just
    delighted. This was one of his few successes and he was excited.
        His adoptive mother told the coach he had fetal alcohol syndrome,
    and that FAS makes memory come and go. She told the coach never to let
    Oscar walk home alone after track practice without his older brother.
        But Oscar would sometimes forget about practice. He sometimes
    forgot his track shoes. The coach left him alone in the parking lot
    after practice and made no accommodations for his disability.
        Oscar did not feel welcome on the track team. He did not feel
    welcome anywhere. When he was sixteen years old, Oscar committed
    suicide.
        The Alaska Department of Health and Social Services is managing the
    funds for FAS with seriousness and skill. Today I want to draw
    attention to Alaska's pioneering accomplishments in two areas of
    prevention and education so that other states may benefit from them. I
    also want to draw attention to unmet needs:
        Trouble with the Law.--FAS is a significant problem for many
    alcohol-affected individuals accused of crimes because FAS affects
    people's ability to understand the results of their actions and FAS
    affects people's abilities to resist their impulses.
        Supported Employment and Living.--Most adults with FAS can not live
    successfully on their own. They need supported living environments and
    they need job coaching.
        Mental Health Needs.--Many individuals with FAS are angry and
    depressed, sometimes suicidal, and need mental health support.

            THE GOOD NEWS: MANY PEOPLE WITH FAS DO WELL WITH SUPPORT

        While the problems of FAS are severe, we should beware of
    stereotyping people with FAS. Some people with fetal alcohol syndrome,
    with support, are graduating from college and vocational programs and
    holding paying jobs (Kleinfeld, 2000). Many have special strengths, for
    example, in working with animals and succeed in modified jobs in
    veterinary clinics and grooming businesses.
        The ability of people with FAS to live fully in the present is the
    opposite side of their problems in understanding the future. Many of us
    forget to savor the present in our pell-mell rush through life and
    allow the beauty and delights of everyday moments to slip through are
    fingers. People with FAS have something to teach us all.
    fetal alcohol syndrome is the leading known cause of mental retardation
        A person with Fetal Alcohol Syndrome suffers from a permanent birth
    defect that is caused by excessive maternal consumption of alcohol
    during pregnancy. The most destructive form of alcohol abuse during
    pregnancy is binge drinking.
        FAS is characterized by: (1) pre- and post-natal growth
    deficiencies that place a child below the tenth percentile for height
    or weight or both, (2) a distinctive pattern of facial features, and,
    most importantly (3) damage to the central nervous system. A person
    with all three features is considered to have fetal alcohol syndrome. A
    person with one or two of these features, usually the damage to the
    central nervous system, is considered to have Fetal Alcohol Effects.
        FAS is the leading known cause of mental retardation. Twenty-five
    percent of people with FAS and 10 percent of people with FAE have IQ
    scores of 70 or below, in the mentally handicapped range (Streissguth
    1997, p. 103).
        But it is a great mistake to think that people with FAE are better
    off than people with FAS. This point should be underscored. FAE is not
    a less severe form of FAS. In fact, children with FAE often experience
    worse problems because they lack many of the outward signs of FAS and
    people do not understand they are brain damaged. A young person with
    FAE, for example, may be able to repeat a school rule. But he may break
    the rule because he does not really understand what the rule means.

       ALASKA HAS THE HIGHEST INCIDENCE OF FETAL ALCOHOL SYNDROME IN THE
                                     NATION

        The prevalence of Fetal Alcohol Syndrome in Alaska is estimated at
    1.0 to 1.4 per 1000 births, while the national average is estimated as
    0.1 to .7 per births (State of Alaska, 2000). Over 20,000 Alaskan women
    of childbearing age acknowledge that they are heavy drinkers and seven
    percent of new mothers said that they drank alcohol during the third
    trimester of pregnancy (DHSS Report #1, 1997, p. 5, cited in Kleinfeld,
    2000).

     ALASKA HAS PIONEERED WISDOM OF PRACTICE STUDIES THAT REVEAL WHAT WORKS

        At the University of Alaska Fairbanks, my research team has
    pioneered ``wisdom of practice'' studies where we work with parents,
    teachers, counselors, and young people with Fetal Alcohol Syndrome to
    figure out what helps. We have identified a wealth of educational
    techniques that help individuals with FAS (Kleinfeld & Wescott, 1993;
    Kleinfeld, 2000).

        ``Take `Karen' who has FAS and wanted to be a bridesmaid at her
    sister's wedding. She knew her hyperactivity wouldn't let her stay
    still from the ceremony to the wedding pictures. On her own, she came
    up with an idea; Bring sweats and running shoes and run off her energy
    between the wedding and the photographs.''

    ALASKA HAS DEVELOPED A PROMISING ``SCHOOL AND MICE-BASED'' APPROACH TO
                                   PREVENTION

        One of my doctoral students, Steven Jacquier, has developed a
    school-based approach to preventing fetal alcohol syndrome which looks
    very promising.
        As CNN described it:

        ``Where the mouse should have a paw, it has a flipper, with fused
    bones instead of toes. Where the mouse should have an eyeball, it has
    no orb, only a tiny hole in its skull.
        ``Stephen Jacquier's high school science students perform Caesarean
    sections on pregnant lab mice that have been force-fed alcohol. As the
    students dissect the amniotic sacs, they get a startling view of how
    booze can affect the unborn.
        `` `We may also see the brain sticking out of the top of the head,'
    Jacquier says. `You may also see limbs missing.' ''--CNN.com.health.
    December 18, 2000.

        This approach lets students see with their own eyes the effects of
    alcohol during pregnancy and draw their own conclusions. Jacquier is
    documenting large gains in knowledge and positive shifts in attitudes
    and beliefs about drinking.

                     THE FAS FRONTIER: WHERE WE NEED TO GO

    Trouble with the Law
        FAS is a significant problem in criminality because this biological
    condition ``affects a person's ability to plan their conduct or,
    conversely, to resist impulse'' (Dagher-Margosian, 1997, p. 125).
    Currently no information exists on the number of alcohol-affected
    individuals in Alaskan prisons or what special accommodations are being
    made to meet their needs as mentally disabled individuals. Little to no
    research has been conducted into what percentage of repeat offenders
    are alcohol-affected and what can be done to support FAS offenders in
    successfully meeting probation and parole requirements. Many people in
    the criminal justice and corrections system in Alaska are aware of the
    high incidence of FAS but most do not know what needs to be done to
    help clients.
        Recommendation.--A state-wide forum to discuss FAS and the criminal
    justice system needs to take place.
    Supported Employment and Living
        People with FAS need support to manage their daily lives. Some do
    well with help from their parents, siblings, or spouses (Kleinfeld,
    2000). But others need supported living environments where other people
    assist them in meeting the demands of a day (Streissguth, 1997, p.
    203). Currently, no specific assisted living environments for people
    with FAS exist in Alaska.
        Recommendation.--Funding sources and training need to be made
    available for families and communities to explore group homes and other
    forms of supported employment and living.
    Mental Health Needs
        Many individuals with FAS become angry and depressed, sometimes
    suicidal, and need mental health support. Counselors often feel,
    mistakenly that they don't have the skills to deal with clients with
    FAS (Kleinfeld, 2000, p. 340). Many do not realize that insight
    therapies and other strategies they use can be easily adapted to the
    visual, concrete learning styles of people with FAS (Baxter, 2000).
        Recommendation.--More mental health services need to be made
    available, especially to adolescents, to promote better life outcomes
    and especially to prevent suicide.
                                   conclusion
        Alaska is making a difference in the prevention and management of
    FAS and offers a beacon light to other states. Tomorrow holds a great
    deal of promise because of what we are doing together today.

        Senator Stevens. Thank you very much.
        Karen, I hope that you saw the bill that Congress passed
    last year that I authored to start physical education concepts
    again in grades K through 12. There are only five States who
    are going to get provisional grants. I hope you quickly make an
    application.
        But I look forward to working with you, and I think we
    ought to have a counsel group one of these days as sort of a
    get-together of those of us in Washington and some of the State
    legislators that deal with these issues you three have just
    mentioned. I think we might be able to find better coordination
    between the Federal and the State and local efforts in this
    regard if we could.
        So I thank you very much. I had a whole bunch of questions
    in my mind, but I think we had better move on to finish the
    other panels, so thank you all very much for coming.

                  Introduction of Ms. Claiborne and Ms. Marin

        Our next panel is Loretta Claiborne, Rosario Marin,
    councilwoman from Huntington Park, California, and we will have
    two other people who wish to testify, and then we will listen
    to Mr. Schwarzenegger, so let us go with these witnesses first.
        Let me introduce Ms. Claiborne, a native of Pennsylvania, a
    gifted long distance runner, an all-around athlete. She
    completed several marathons, and holds a black belt in karate.
    She has received countless awards and honors, the Arthur Ashe
    Award for Courage, the Athlete of the Quarter Century Award
    from Runner's World, she was selected by the U.S. Olympic
    Committee as a member of its prestigious Project Gold program,
    and she is also a very distinguished speaker. I listened to her
    speak at a luncheon in Washington.
        Ms. Claiborne, please.

    STATEMENT OF LORETTA CLAIBORNE, PA, SPECIAL OLYMPICS
                ATHLETE AND GLOBAL MESSENGER

        Ms. Claiborne. Thank you very much, Mr. Chairman.
        Good morning. My name is Loretta Claiborne. I appreciate
    your willingness to conduct this hearing and to allow me to
    offer testimony about the health needs of persons with mental
    retardation. I want to tell you a little bit about my life,
    because I believe it paints a picture of how difficult it is
    for persons with mental retardation to get good health care.
        You may have seen the Loretta Claiborne Story, which aired
    on ABC last year. This made-for-television film was created by
    Disney. It is a pretty accurate summary of many of the
    challenges I faced while I was growing up. A number of these
    challenges were medical in nature. I remember only too well the
    visits to the clinics and the doctors. I remember being afraid
    of and unsure about what would happen or not happen every time
    I saw a doctor.
        I am going to stop reading this statement at this time,
    because No. 1, if it was not for Special Olympics, I would not
    be sitting here. No. 2, I remember back to when I was a child,
    and my mother took me to a doctor for my feet, and the doctor
    looked at her and said, because she was poor, after we had sat
    in the clinic for hours upon hours--we used to take our lunch,
    and I used to take my knitting--the doctor looked at her and
    said, ``you know what these retarded kids dream. Take her home
    and smack her on the butt and then she won't walk on the side
    of her feet.''
        She brought me back to the clinic again. The doctor looked
    at her and said, Mrs. Claiborne, you have been sitting here for
    5 hours, come back to my room. I'm going to give this child an
    X-ray, and he found out I had bad sesamoid bones and they
    operated on my feet. Years later, I had my eyes operated on. I
    read with my left eye, and I look for distance with my right.
        I grew up, my mother passed away, and here is Loretta, left
    fighting for herself. In 1995, I was diagnosed with a tumor in
    my stomach. The doctor looked at me, and I kept saying to her I
    was gaining weight. I said, Dr. McMillan, how can I gain 20
    pounds in 4 months, with all this running I am doing, I am
    eating right. I am taking care of myself. She said, ``oh,
    you're just getting older.''
        I looked at her and said, I am not going to buy that, and I
    persuaded her. I said, could I please have a physical. She put
    me up on the table, she gave me a pelvic. She looked, she said,
    ``oh my God, Loretta, go to the hospital real quick, as quick
    as you can.'' I went to the hospital, they put me in the
    mother-child clinic. The guy looked at me--he was so rough. He
    didn't understand my needs. I looked at him, put my clothes on,
    I said, I ain't got time for you. I went back to my doctor, and
    I had to fight to go to Hershey Medical Center. Eleven months
    later I had the tumor taken out. I was the size of a 7-month
    pregnant woman when I went to the 1995 Games. That September,
    it was removed. Why didn't they take care of it when it was
    small?
        Doctors listen, people listen. It is a shame what our
    people are going through. As it was said here earlier, if you
    make a couple of pennies over, you lose your medicaid, then you
    end up in what they call HMO's. I have a bad leg; my leg, I
    have hurt it. I have had to come to this State to get an X-ray
    after begging my doctors back home, because they would not do
    it. Here in Alaska, they found out that I had a torn meniscus.
    The doctors from this State told me to go back home and get it
    fixed. My doctor says, he is not going to operate on my leg and
    fix it.
        You know what is going to happen, society is going to pay
    for that leg years later when I have arthritis. Society is
    going to pay for things that we do not take care of for our
    people with mental retardation. One day I went to the clinic
    and I saw a friend of mine, who is incarcerated. He was getting
    his teeth fixed. I have to go to the dentist every 3 months,
    between a dentist and a periodontist, because I need the
    medical care, and I have to take my little food money to pay
    for my teeth. It is a shame in our society. It is a shame in
    our world. It is a shame in the good, old United States that
    this has to happen.
        I have never committed a crime in my life. My people have
    never committed a crime. What are we doing about it? Hardly
    anything. Please, people, be sensitive. We do more for our
    people who are incarcerated than we do for our people who have
    never committed a crime, who are just trying to live out their
    lives the best they can live them out.
        Special Olympics has been my key to my door to take care of
    my health. At my age, my mother had one foot in the grave. At
    63, she was dead, because she smoked. I do not smoke. I do not
    do tobacco. I take care of my body.

                               PREPARED STATEMENT

        The Special Olympics has told me, has gave me a hope and
    thought that, Loretta, you are going to live a long life if you
    take care of your body, and the Special Olympics keeps me
    motivated, because I want to be a good athlete. I have run 26
    marathons, I am a fourth degree black belt and I enjoy life,
    and all I want to do is live in society.
        Thank you very much, good luck, and God bless.
        [The statement follows:]

                    Prepared Statement of Loretta Claiborne

        Good morning. My name is Loretta Claiborne. Mr. Chairman, I
    appreciate your willingness to conduct this hearing and to allow me to
    offer testimony about the health needs of persons with mental
    retardation.
        I am a person with mental retardation. I also am a longtime Special
    Olympics athlete, global messenger and volunteer. As you look at me
    sitting here, you might say that I appear to be reasonably healthy. And
    I would agree with that. I have trained and competed in a number of
    sports since I was a teenager. I have been fortunate enough to win
    numerous medals from my competitions and to even set a few records.
        I want to tell you a little bit about my life, because I believe
    that it paints a picture of how difficult it is for persons with mental
    retardation to get good health care. You may have seen ``The Loretta
    Claiborne Story'' which aired on ABC last year. This made-for-
    television film created by Disney is a pretty accurate summary of many
    of the challenges that I faced while I was growing up. A number of
    these challenges were medical in nature. I remember only too well the
    visits to clinics and doctors. I remember being afraid and unsure about
    what would happen or not happen every time I saw a doctor.
        As a child, in addition to the regular childhood illnesses, I had
    some serious health problems, including a bad foot that barely allowed
    me to walk, let alone run; and, severe problems with my eyes that made
    it difficult for me to understand what was gong on around me. I was shy
    and withdrawn, not speaking until age 4. I was fortunate, however. My
    mother and other people that cared about me fought hard to get me the
    corrective care that I needed. Clearly, that has turned out to be a
    good investment in me and a good investment for society.
        In addition to caring individuals, I must thank Special Olympics
    for being there for me. The organization gave me a chance to feel
    accomplishment and value. Special Olympics gave me a reason to push
    myself to levels of athletic accomplishment and good health that I
    otherwise never would have even attempted.
        I have to say that things have not come easy for me. I was a pretty
    stubborn person when I was young. But, I eventually learned how to turn
    stubbornness into persistence to get what I wanted. Part of what I
    wanted was personal success. Today, I am a recognized athlete. My story
    has motivated others. I have reasonably good health. People care about
    what I have to say and invite me to make motivational speeches. And, my
    contributions count. This may not seem like a lot to some people, but
    it is a lot to me. I want other people with mental retardation to have
    these same opportunities to contribute and succeed, which means that
    they must have good health.
        Today, I am pretty much of a health addict. I run and exercise
    regularly. I watch what I eat, because weight has been an issue for me
    and others in my family. No tobacco or alcohol for me--I am a serious
    athlete. And, I go to the doctor at the early signs of any problem.
    Also, I brush and floss my teeth every day. I am very focused on this
    because I have a tendency to get gum infections.
        But, I still have health challenges and have to fight the system
    every time I need medical attention. I have had a tumor misdiagnosed
    and mistreated. I have ongoing knee problems. These conditions are not
    related to mental retardation; they are common medical problems that
    don't require doctors to be experts in caring for a patient with
    special needs. They are medical problems that just require a doctor to
    want to treat a person with disabilities.
        Mr. Chairman, please understand that all people with mental
    retardation will not have the same level of confidence, capability or
    resolve that I have. Not all people with mental retardation necessarily
    have the support system and advocates that I had. And, unfortunately,
    people with mental retardation still face a lot of intentional and
    unintentional discrimination. We want people to think that it is
    important that we are not just not sick, but to help us to be as
    healthy as we can be.
        This means that people need to have high health expectations for
    each one of us, regardless of our underlying health challenges. It
    means that doctors and dentists and other health providers must
    understand our needs and be willing to give us the type of care we
    need. It means that the people who pay for care must not shortchange
    our health care providers or we will get shortchanged.
        It is my hope and dream, that within the decade, no person with
    mental retardation will live one day less, because they were denied
    some treatment or care that was available to others. And, finally, I
    want everyone to know that while I and others like me may learn slower
    or in different ways, that does not mean that we are stupid or that we
    do not care about our health. When you design health education
    materials, think about us. When you create web pages, think about us.
    When you teach doctors about caring for patients, think about us. And
    when you ask for opinions as to problems and solutions, ask us, just
    like you are doing today.
        God bless you in these efforts and for chairing this hearing.

        Senator Stevens. Thank you very much. It is nice to see you
    again, and I look forward to working with you.
        Ms. Marin is council member for the City of Huntington
    Park, California. She recently completed a term as the city's
    mayor. Councilwoman Marin has served as the chair of the
    California State Council of Developmental Disabilities, and the
    Chief of Legislative Affairs for the State Department of
    Developmental Services, and as Special Education Commissioner
    for the Los Angeles United School District, and it is nice to
    see you here. Thank you very much.

    STATEMENT OF HON. ROSARIO MARIN, COUNCILWOMAN,
                HUNTINGTON PARK, CA

        Ms. Marin. Thank you. Mr. Chairman. I certainly appreciate
    the opportunity to speak with you if only for a few minutes
    about a subject that for the last 15 years has been my life's
    mission, and that being the health needs of people with mental
    retardation.
        First and foremost, I am the mother of a 15-year-old
    handsome young man with Down's Syndrome, who because of serious
    medical conditions cannot participate in Special Olympics.
    Regrettably, it could have been prevented.
        In addition, I am a member of Special Olympics board of
    directors and, as you stated before, I have worked for the
    State of California in different capacities.
        Senator, the arrival of a new child in the family is always
    a highly emotional time. Ninty-seven percent of the time, it is
    a period of enormous joy. Most celebrities cite the birth of a
    child as the happiest event of their lives. As you can only
    imagine, the birth of a child with mental retardation is
    probably one of the most difficult times a family can endure.
    The parents' dreams are shattered in one second.
        Sometimes, as in the case of Down's Syndrome, it is
    apparent right away. Sometimes, with other disabilities, it
    slowly becomes apparent as a child starts school. Nevertheless,
    the confirmation of a diagnosis often triggers feelings of
    immense grief, of hopelessness. Oftentimes, they are
    overwhelming.
        And yet, after the diagnosis, families and their children
    with mental retardation fight an uphill battle all the way.
    While mental retardation affects all stratas of society and all
    countries in the world, its effects lie more heavily on those
    sectors where poverty is most prevalent, the undereducated,
    underemployed, underinsured, malnourished, poorly housed,
    including many people who are ethnic and racial minorities.
        Unhappily, these people generally do not have the resources
    to fight the relentless fight to get attention and support for
    their children, this applies across the board in terms of
    education, social services and effective diagnosis, preventive
    and corrective health services, and just because it is written
    somewhere that a person is eligible for services, this does not
    mean at all that they will receive it.
        Given that they are the most vulnerable to the effects of
    these diseases and conditions, and have limitations in their
    ability to advocate for themselves, we should be providing the
    highest level of care, and caring for them. After all, Senator,
    our goals should not be just to say that there was something in
    place, but rather that something was actually done for them.
        It is my profound belief as a parent and as a public
    official that people with mental retardation have a fundamental
    right to decent treatment in and by our health care system.
    This means health care programs need to be designed to meet the
    needs of patients and families. It means that payment
    mechanisms and payment levels should be adequate to interest
    providers and to motivate them to provide quality care.
        This means that clinical outcomes should be monitored more
    closely than simply cost minimization. If you look into the
    report that Special Olympics developed concerning the health
    status and needs of persons with mental retardation, it is
    clear that both children and adults with mental retardation are
    getting far less in terms of health assessment and health care
    than they need, and that they deserve.
        Given the laws that have been enacted in this country and
    in many countries to prevent people with disabilities from
    being discriminated against, or denied access to basic human
    rights, we clearly have a problem. This is a problem that has
    been shadowed in obscurity long enough. The time has come to
    shed light on what properly could become a scandal. People with
    mental retardation suffer unnecessarily from preventable and
    manageable diseases and conditions. Their lives are shortened.
    Their dignity is diminished, their opportunities unduly denied,
    including meaningful social participation, and their families,
    in many cases, experience feelings of helplessness and
    frustration that go along with it.
        This hearing is a beacon of hope. We need sustained actions
    to follow, Senator, better policies, and more resources at all
    levels, but at a minimum, how about ensuring the provision of
    services for which they are already eligible, the ones they are
    legally entitled. We need better trained health care providers
    who receive didactic and practical experience working with
    patients with mental retardation of all ages, not just
    children.
        In that regard, I believe that the school-based individual
    education plans mandated by law for persons with disabilities
    should include provisions to assure necessary health care. For
    what person, child or adult, can concentrate on learning when
    they are dragged down by a constellation of health problems.

                               PREPARED STATEMENT

        Senator Stevens, I want to thank you for your attention. It
    is my sincere hope that this will be the first step in a true
    commitment to improve the lives of people with mental
    retardation, and with it, the ability of the society to become
    enlightened, for it has been said before that a society is
    judged by how it treats its most vulnerable. I pray to God that
    he gives us the strength to fight the good fight for people
    like my son, Eric, so that at the end of the day we can all be
    proud of our collective good.
        Thank you, Senator.
        [The statement follows:]

                      Prepared Statement of Rosario Marin

        Mr. Chairman, I greatly appreciate the opportunity to speak with
    you, if only for a few minutes, about a subject that for the last 15
    years has been my mission and clearly it is very close to my heart--
    that being the health needs of persons with mental retardation.
        First and foremost, I am the mother of Eric, a 15 year-old handsome
    young man with Down syndrome, who because of a serious medical
    condition cannot participate in Special Olympics. Regrettably, it could
    have been prevented. In addition, I am a member of the Special Olympics
    Board of Directors. And furthermore, I have served the State of
    California in a number of capacities, including a term as Chair of the
    California State Council on Developmental Disabilities. I also served
    as a member of the Special Education Commission for the Los Angeles
    Unified School District.
        Senator, the arrival of a new child in a family is always a highly
    emotional and tumultuous time. Ninety-three percent of the time is a
    period of enormous joy. Most celebrities cite the birth of their child
    as the happiest event of their lives. As you can only imagine, the
    birth of a child with mental retardation, is probably one of the most
    difficult times a family can endure. The parents' dreams are shattered
    in a second. Your whole world is turned upside down. Sometimes as in
    the case with Down syndrome, it is apparent right away, sometimes with
    other disabilities, it slowly becomes apparent as a child starts in
    school. Nevertheless, the confirmation of a diagnosis often triggers
    feelings of immense grief; the helplessness and hopelessness oftentimes
    are overwhelming.
        Families and their children with mental retardation fight an uphill
    battle all of the way. While mental retardation affects all strata of
    society in all countries of the world, its effects fall more heavily on
    those sectors where poverty is most prevalent--the undereducated,
    underemployed, underinsured, malnourished, poorly housed, including
    many ethnic and racial minorities.
        Unhappily, these people generally do not have the resources and
    personal access, connections and confidence to fight the relentless
    fight to get attention and support for their children. This applies
    across the board in terms of education, social services and effective
    diagnostic, preventive and corrective health services. And, just
    because it is written down somewhere that a person is eligible for a
    service, this does not mean that they will receive it.
        I am not a health expert, but I know from the experience that I
    have had with my son and from talking to other parents of children with
    mental retardation that we as a country and our health care system, its
    providers and insurers and payers, are not doing right by these
    individuals.
        Given that they are the most vulnerable to the effects of diseases
    and conditions, and have limitations in their ability to advocate for
    themselves, we should be providing the highest level of care and caring
    for them. After all, our goal should not be just to say that there was
    something in place, but rather that something got done for them.
        It is my profound belief as a parent, public official and advocate
    for individuals with mental retardation and their families that they
    have a fundamental right to decent treatment in, and by, our healthcare
    system.
        This means that care programs need to be designed to meet the needs
    of patients and families first rather than bureaucracies. This means
    that payment mechanisms and payment levels should be adequate to
    interest providers and to motivate them to provide quality care. This
    means that clinical outcomes should be monitored more closely than
    simply cost minimization. This means that providers should have
    expectations for persons with mental retardation in terms of quality
    life years and meaningful health promotion opportunities.
        If you look into the report that Special Olympics has developed
    concerning the health status and needs of persons with mental
    retardation, it is clear that people with mental retardation, both
    children and adults, are getting far less in terms of health assessment
    and health care than they need and deserve. Given the laws that have
    been enacted in this country and in many others to prevent people with
    disabilities from being discriminated against or denied access to basic
    human rights, we clearly have a problem. This is a problem that has
    wallowed in obscurity long enough.
        The time has come to shed the proper light on what properly could
    be called a scandal. People with mental retardation suffer
    unnecessarily from preventable and manageable diseases and conditions.
    Their lives are shortened; their dignity is diminished, their
    opportunities unduly denied, including meaningful social participation.
    And their families deal, in many cases, with the feelings of
    helplessness and frustration that go along with this.
        This hearing is extremely important for bringing critical issues to
    light.
        We need sustained actions to follow--better policies and more
    resources at all levels. But at a minimum, how about assuring the
    provision of services for which they are already eligible, the ones to
    which they are legally entitled?
        We need better-trained health care providers who receive didactic
    and practical experience working with patients with mental retardation
    of all ages.
        We need care managers who see the patient not just through a
    specialty treatment, but toward an integrated clinical and functional
    goal. We need health care for persons with mental retardation viewed as
    a critical mediator of how a life will be lived.
        In that regard, I believe that the school-based individual
    education plans mandated by law for persons with disabilities, should
    include provisions to assure necessary health care. For what person,
    child or adult, could concentrate on learning when they are dragged
    down by a constellation of health problems, including vision deficits,
    dental care needs, hearing problems, hypertension, diabetes, seizures
    and so on?
        Senator Stevens, I want to thank you for your attention. It is my
    sincere hope that this will be the first step in a true commitment to
    improving the lives of persons with mental retardation, and with it,
    the ability of this society to become enlightened. For it has been said
    before that a society is judged by how it treats its most vulnerable. I
    pray to God that he gives us the strength to fight the good fight for
    people like my son Eric, so that at the end of the day, we can be proud
    of our collective good.

                   Introduction of Dr. Perlman and Mr. Ervin

        Senator Stevens. Thank you very much. We are going to add
    two witnesses, Dr. Steven Perlman, and Mr. James Ervin. Would
    you come and join us here, please?
        Dr. Perlman is the global clinical director for the Special
    Olympics Special Smiles program. He is an associate clinical
    professor of pediatric dentistry at Boston University, and has
    asked to make a few comments concerning access to dental care.
        Mr. Ervin, James E. Ervin from Albany, GA, is immediate
    past president and chairman of the board of trustees of the
    International Association of Lions Clubs. Mr. Ervin spent the
    last 5 years as an executive officer traveling around the world
    on behalf of the Lions Clubs International, and he has worked
    in partnerships to enhance the Lions' humanitarian objectives,
    and particularly as it pertains to blindness.
        We are happy to have your testimony, Dr. Perlman. We have
    still got to get to Mr. Schwarzenegger, so please, if you will,
    make your comments as short as possible.

    STATEMENT OF DR. STEVE PERLMAN, GLOBAL CLINICAL
                DIRECTOR, SPECIAL OLYMPICS, SPECIAL SMILES
                PROGRAM

        Dr. Perlman. Mr. Chairman, please allow me to represent the
    health care professionals who do care. For over 25 years we
    have joined forces to fight the battles in our professional
    schools, to increase the training of health care providers in
    treating people with mental retardation.
        As you know, it is nearly impossible to enact curriculum
    changes. We have fought for changes in reimbursement levels
    with medicaid, medicare, and private insurance companies, but
    you know how hard it is and difficult it is to engender change
    there.
        In the words of a Special Olympics slogan at the last World
    Games, it is all about attitude. We have shown that no matter
    how much education that we give providers, no matter how much
    we pay them, it still does not increase access to care. It is
    all about attitude.
        But your presence here at this congressional hearing, and
    Dr. Satcher's presence here, his time over the last 2 days to
    meet our health care providers and listen to the families,
    their athletes, their stories, you have shown the world that
    our elected representatives can and do care. You are giving
    those of us who are health care providers, the biggest
    opportunity to make a change that I have personally witnessed
    in my entire professional career.
        Dr. Satcher's commitment to hold the first-ever Surgeon
    General's conference on health care issues for individuals with
    mental retardation is an unbelievable first step in our long
    road to improving the quality of life for people of the world
    with mental retardation.
        Thank you.
        Senator Stevens. Thank you, Dr. Perlman.
        Mr. Ervin.

    STATEMENT OF JAMES E. ERVIN, ALBANY, GA, LIONS CLUB
                INTERNATIONAL

        Mr. Ervin. Thank you, Mr. Chairman. It certainly is a
    pleasure to be here and have an opportunity to join all of our
    distinguished people at this hearing. Today, I would not only
    like to represent Lions Clubs International, the world's
    largest humanitarian service club, I am here today as a
    volunteer, and I want you and the Surgeon General to understand
    how important it is for us as volunteers to be heard, because
    we are working in our communities not only throughout the
    United States, but around the world, to improve the quality of
    life for people most in need, and that certainly includes all
    of our friends who have mental retardation.
        You mentioned earlier that we have been working in
    blindness prevention, and that is what brings us here as a
    partner in Special Olympics, is the Opening Eyes programs. When
    Dr. Tim Shriver came to us and shared with us the opportunity
    that to become involved with vision care for people with mental
    retardation, we knew it was natural for us to accept this
    challenge, because in 1925, Helen Keller challenged the Lions
    to become Knights of the Blind in the crusade against darkness.
        She also was asked in an interview, could she imagine that
    there was anything worse than being blind, and she said, yes,
    to have sight, but no vision. We are here today because Mrs.
    Eunice Shriver had a vision, a vision to help these athletes
    with mental retardation. We have tried to live up to our vision
    in blindness prevention to help eliminate preventable and
    reversible blindness around the world.
        Dr. Satcher mentioned that he felt it was important to
    create partnerships. We have provided $3.2 million to help
    Special Olympics in funding the Opening Eyes program. Last
    year, our association spent more than $41 million in
    humanitarian services and disaster relief around the world, and
    we are asking you, as Congress, Dr. Satcher, and those, to come
    to the table as our partners, as volunteers, as people working
    in nongovernmental organizations, who are working as volunteers
    to improve the quality of life, to make our communities a
    better place to live and to raise our families.
        We hear every day on the news about the more than $5
    trillion that we are arguing about what we are going to do with
    over the next 10 years, or the surplus. We ask you to consider
    bringing some of that funding to the table with us so that we
    can share in helping those most in need. Thank you.
        Senator Stevens. Thank you. I am pleased you came forward,
    Mr. Ervin. We look forward to working with you, and I have a
    particular reason for working with you, too, so I will be glad
    to talk to you about it.
        Mr. Ervin. Thank you, sir.

                       Introduction of Mr. Schwarzenegger

        Senator Stevens. Thank you very much. We will now ask Mr.
    Schwarzenegger to join us and complete our hearing this
    morning.
        I do not think you need any introduction, but I will tell
    the audience that you served as President George Herbert Walker
    Bush's chairman of the President's Council on Physical Fitness.
    Mr. Schwarzenegger is Special Olympics honorary torch bearer,
    travelling the world to promote Special Olympics sports
    programs.
        Mr. Schwarzenegger's film career I am sure we all know, and
    I am one of your devoted followers, Mr. Schwarzenegger, The
    Terminator, True Lies, Kindergarten Cop, The Twins--I am
    delighted to see you here with your wife Maria, and I thank you
    for all you have done for the Special Olympics. We saw you lead
    the group in last night from Austria, and it is nice of you to
    take the time to be with us. You can terminate the program
    whenever you are ready.

    STATEMENT OF ARNOLD SCHWARZENEGGER, CHAIRMAN,
                PRESIDENT'S COUNCIL ON PHYSICAL FITNESS

        Mr. Schwarzenegger. Thank you very much, Mr. Chairman, and
    I first of all want to just say congratulations, and thank you
    for the outstanding job that you have done, and that your son
    Ben has done here for Special Olympics in Alaska, and
    especially on the opening ceremonies. As I said yesterday, they
    were absolutely mind-blowing. They were fantastic, so
    congratulations.
        Senator Stevens. I will give my son Ben the applause.
        Thank you very much.
        Mr. Schwarzenegger. Mr. Chairman, distinguished members of
    the audience, and most particularly, the Special Olympics
    athletes and their families, I am grateful and honored to
    testify before this committee today. There are two things near
    and dear to my heart: The importance of physical fitness, and
    creating a healthy lifestyle, and Special Olympics. Thanks to
    your vision and leadership, Mr. Chairman, both are the subject
    of this unprecedented hearing on the health status and needs of
    individuals with mental retardation.
        Thirty-five years ago, children born with mental
    retardation were sentenced to institutions, where they were
    often restrained in beds for days at a time. Parents were told
    by medical professionals that their child would never learn,
    could never read, never feed themselves, and never, never would
    they be able to participate in physical activities or in
    exercise, yet one woman with a vision refused to accept these
    expert predictions.
        In spite of the skeptics, and notwithstanding the stigma
    and fear that surrounded this population, Eunice Kennedy
    Shriver instinctively knew that individuals with mental
    retardation could run and jump and throw a ball, and even swim,
    so she invited them to a camp in her backyard, along with
    coaches and college students, and soon these individuals were
    running, riding horses, and playing ball.
        Eunice Shriver's vision extended to the creation of an
    organization whose mission statement calls for year-round
    sports training and athletic competition in a variety of
    Olympic-type sports for children and adults with mental
    retardation, giving them continued opportunities to develop
    physical fitness. Thus, Special Olympics was born, and you
    cannot even begin to imagine how far it has come. Well, we have
    seen it yesterday.
        Today, 1 million people with mental retardation participate
    in Special Olympics around the world. This week, nearly 2,000
    Special Olympics athletes will compete at its World Winter
    Games before a global audience. Everywhere I travel, from
    Southern California to my homeland, Austria, to China, I see
    the power of Eunice Shriver's vision.
        I see athletes completing marathons in less than 3 hours. I
    see athletes bowling perfect games. I see Special Olympics
    athletes speaking out, coaching kids, and officiating at world-
    class events.
        Last year, Special Olympics athletes joined me as we lit
    the flame of hope at the Great Wall in Beijing. Later, I was
    joined by athletes in meeting President Jang Zemin, where we
    asked for Government support of programs intended to improve
    the quality of life for people with mental retardation in
    China, the same country where not long ago, children born with
    mental retardation were often left to die so parents could
    have, a ``normal baby'' pursuant to the one-child-per-family
    policy. President Jang Zemin promised he would help.
        Notwithstanding the life work and vision of my
    inspirational mother-in-law, the harsh statistics and data
    contained in this report are sobering. People with mental
    retardation live an average of 10 to 20 years less than the
    general population. Individuals with mental retardation suffer
    from a wide range of chronic and acute diseases and conditions.
        In many instances, they experience more frequent and severe
    symptoms than the general population, including heart disease,
    diabetes, obesity, respiratory problems, mental illness, vision
    deficits, hearing deficits, and oral health problems.
        Mr. Chairman, we can and must do something to address the
    health deficits of people with mental retardation. We are now
    at a point that virtually all leaders in the health field and a
    large portion of the general public understands that being
    healthy is more than just not being actually ill. We understand
    that regular physical activity reduces the risk of dying from
    coronary heart diseases, and of developing high blood pressure,
    colon cancer, and diabetes.
        We know that for people with disabling conditions, regular
    exercise can improve their stamina and muscle strength, but as
    much as the American public also knows, establishing and
    maintaining fitness is not simple, not short-term activity. It
    is not a short-term challenge. It is a lifelong requirement for
    a healthy, productive life.
        Moreover, despite the increased focus on personal and
    general population health promotion and disease prevention both
    in the United States and elsewhere, this report points out that
    persons with mental retardation have received very little
    consideration. In fact, since this population is more likely to
    encounter secondary health problems like coronary diseases or
    obesity, it makes sense that health promotion and physical
    fitness will particularly benefit people with mental
    retardation.
        Therefore, I believe that a broad public assessment of
    people with mental retardation needs to be undertaken by
    leading public health and professional organizations. The new
    National Center on Birth Defects and Developmental Disabilities
    at the U.S. Center for Disease Control and Prevention should
    have an explicit program focus and added resources to fund
    research and programs on prevention of secondary disabilities
    among persons with mental retardation.
        I also believe that the President's Council on Physical
    Fitness and Sports, which I had the privilege to serve on under
    President Bush, should specifically focus on the needs of
    people with mental retardation. In fact, I call on the new
    President Bush to appoint a person with mental retardation to
    the Physical Fitness Council and, if he needs any suggestions,
    I would recommend very strongly my very dear friend Loretta
    Claiborne, who was testifying here earlier today.
        Sports organizations like Special Olympics should forge
    ahead, too. Too often, lack of appropriate regular exercise and
    physical activity regimes, in spite of participation in Special
    Olympics, leave many athletes far short of desirable personal
    physical fitness standards. Accordingly, I am especially
    pleased that an athletes health promotion center is being
    pilot-tested right here at the Special Olympics World Winter
    Games to teach athletes about wellness and healthy lifestyles.
    I encourage you to stop by the Olympic Town and take a look,
    Mr. Chairman.

                               PREPARED STATEMENT

        In closing, Mr. Chairman, I am ready to help you in any way
    possible to address the findings contained in this report, and
    to work with you to improve the quality and the length of life
    for people with mental retardation. In short, I am here to help
    you terminate the problem.
        Thank you for the opportunity to share my views. Thank you
    very much.
        [The statement follows:]

                  Prepared Statement of Arnold Schwarzenegger

        Mr. Chairman, distinguished members of the audience, and most
    particularly, Special Olympics athletes and their families, I am
    grateful and honored to testify before this Committee today. There area
    two things near and dear to my heart; the importance of physical
    fitness in creating a healthy lifestyle and Special Olympics. Thanks to
    your vision and leadership Mr. Chairman, both are the subject of this
    unprecedented hearing on the health status and needs of individuals
    with mental retardation.
        Thirty-five years ago children born with mental retardation were
    sentenced to institutions where they were often restrained in beds for
    days at a time. Parents were told by medical professionals that their
    child would never learn, could never read, never feed themselves, and
    never, never would be able to participate in physical activity or
    exercise.
        Yet, one woman with a vision refused to accept these ``expert''
    predictions. In spite of the skeptics, and notwithstanding the stigma
    and fear that surrounded this population, Eunice Kennedy Shriver
    instinctively knew that individuals with mental retardation could run
    and jump and throw a ball and even swim. So she invited them to a camp
    in her backyard, along with coaches and college students and soon these
    individuals were running races, riding horses and playing ball. Eunice
    Shriver's vision extended to the creation of an organization, whose
    mission statement calls for year-round sports training and athletic
    competition in a variety of Olympic-type sports for children and adults
    with mental retardation, giving them continuing opportunities to
    develop physical fitness. Thus Special Olympics was born, and you can't
    begin to imagine how far it's come.
        Today one million people with mental retardation participate in
    Special Olympics around the world. This week, nearly 2,000 Special
    Olympics athletes will compete at these World Winter Games before a
    global audience. Everywhere I travel, from Southern California, to my
    homeland of Austria, to China, I see the power of Eunice Shriver's
    vision. I see athletes competing marathons in less than three hours. I
    see athletes bowling perfect games. I see Special Olympics athletes
    speaking out, coaching peers and officiating at world-class events.
        Last year Special Olympics athletes joined me as we lit the Flame
    of Hope at the Great Wall in Beijing. Later, I was joined by athletes
    at a meeting with President Jiang Zemin where they asked for government
    support of programs intended to improve the quality of live for people
    with mental retardation in China; the same country where not long ago,
    children born with mental retardation were often left to die so parents
    could have a ``normal'' baby under the one child per family policy.
    President Jiang promised to help.
        Notwithstanding the life work and vision of my inspirational
    mother-in-law, the harsh statistics and data contained in this report
    are sobering. People with mental retardation live an average of 10-20
    years less than the general population. Individuals with mental
    retardation suffer from a wide range of chronic and acute diseases and
    conditions. In many instances, they experience more frequent and severe
    symptoms than the general population, including: heart disease,
    diabetes, obesity, respiratory problems, mental illness, vision
    deficits, hearing deficits, and oral health problems.
        Mr. Chairman, we can and must do something to address the health
    deficits of people with mental retardation.
        We are now at the point where virtually all leaders in the health
    field, and a large portion of the general public understand that being
    healthy is more than just not being acutely ill. We understand that
    regular physical activity reduces the risk of dying from coronary heart
    disease and of developing high blood pressure, colon cancer, and
    diabetes. We know that for people with disabling conditions, regular
    exercise can improve their stamina and muscle strength.
        But as much of the American public also knows, establishing and
    maintaining fitness is no simple, short-term challenge. It is a
    lifelong requirement for a healthy, productive life. Moreover, despite
    the increasing focus on personal and general population health
    promotion and disease prevention, both in the United States and
    elsewhere, this report points out that persons with mental retardation
    have received little consideration. In fact, since this population is
    more likely to encounter secondary health problems, like coronary
    disease or obesity, it makes sense that health promotion and physical
    fitness would particularly benefit people with mental retardation.
        Therefore, I believe that a broad public health assessment of
    people with mental retardation needs to be undertaken by leading public
    health and professional organizations. The new National Center on Birth
    Defects and Developmental Disabilities at the U.S. Centers for Disease
    Control and Prevention should have an explicit program focus and
    adequate resources to fund research and programs on the prevention of
    secondary disabilities among persons with mental retardation. I also
    believe that the President's Council on Physical Fitness and Sports,
    which I had the privilege to chair for President George Bush, should
    specifically focus on the needs of people with mental retardation. In
    fact, I call on the new President Bush to appoint a person with mental
    retardation to his Physical Fitness Council and if he needs any
    suggestions, I nominate the remarkable Loretta Claiborne seated here
    next to me.
        Sports organizations like Special Olympics should forge ahead too.
    Too often, lack of appropriate, regular exercise and physical activity
    regimens, in spite of participation in Special Olympics, leaves many
    athletes far short of desirable personal physical fitness standards.
    Accordingly, I am especially pleased that an Athlete Health Promotion
    Center is being pilot tested at these Special Olympics World Winter
    Games to teach athletes about wellness and healthy lifestyles. I
    encourage you to stop by Olympic Town to take a look.
        In closing Mr. Chairman, I am ready to help you in any way possible
    to address the findings contained in this report and to work with you
    to improve the quality and length of life for people with mental
    retardation.
        Thank you for the opportunity to share my views.

        Senator Stevens. Okay, we will accept that, and I will talk
    to you about it when we get back to Washington. We ought to be
    able to follow some of those suggestions, and I thank you very
    much for taking the time and for being here, and for helping us
    open these Winter Games.
        Mr. Schwarzenegger. Thank you very much.
        I think, Mr. Chairman, I have heard all the testimony and I
    think the bottom line is that Special Olympics has a program,
    Healthy Athletes, they spend $3 million every year on that. If
    the Government could come in with just 10 times that amount I
    think we could make a major move forward.
        Thank you very much, Mr. Chairman.
        Senator Stevens. I am afraid you sound like another Kennedy
    I know.

                         Special Thanks to Kim Elliott

        Let me thank the Senior Advisor to the President for
    Special Olympics, who was very instrumental in making the
    hearing a reality, and I am sure she is the one who conveyed
    the request to my son, and he conveyed it to me, so we thank
    Kim Elliott for what she has done.

                                CLOSING REMARKS

        And we thank all of you for being here. I am going to read
    the report. It does, I am told, detail what needs to be done to
    further the health and well-being of individuals with mental
    retardation, and I think everyone here heard your messages loud
    and clear.
        I will do my best to assure that Congress begins making
    some decisions concerning the funding recommendations you have
    made to assist people with mental retardation, and we will do
    our best to do everything we can to carry out the oath of the
    Special Olympics.
        Again, all of the statements that we have had here will be
    printed in the record, and we will print all of the testimony.
    We will make that available to those of you--if you would like
    to have a copy of the hearing. Send your requests for a copy of
    the hearing to Tim Shriver at the Special Olympics in
    Washington, DC.
        Thanks to all of you, our very distinguished guests who
    have joined us today to assist in this hearing, and thanks to
    all of the Special Olympians who are here. We wish you a
    wonderful week of Games. I shall not be with you. I have to
    return to the Senate tonight so we can vote tomorrow, but I
    will do my best to work with you, and Bettilou and I will talk
    to some of you about further action as far as our committee is
    concerned, and thanks to you, Bettilou, for coming up and being
    a special help in this hearing.
        I am going to have two reports inserted in the record at
    this point: ``Promoting Health for Individuals with Mental
    Retardation--A Critical Journey Barely Begun'' and ``The Health
    Status and Needs of Individuals With Mental Retardation.''
        [The information follows:]

       PROMOTING HEALTH FOR PERSONS WITH MENTAL RETARDATION--A CRITICAL
                              JOURNEY BARELY BEGUN

                           Special Olympics Overview

        As the largest organization in the world promoting acceptance
    through sport, Special Olympics has a 32-year track record of
    demonstrated success in providing year-round sports training and
    competition opportunities for children and adults with mental
    retardation. Founded in 1968 by Eunice Kennedy Shriver, Special
    Olympics, Inc. (SOI) is incorporatedin the District of Columbia as a
    not-for-profit corporation.
        Special Olympics flourishes in 160 nations and in each of the 50
    states, the District of Columbia, Puerto Rico, Guam, the Virgin
    Islands, and American Samoa. One million people with mental retardation
    annually participate in Special Olympics training and competition
    programs globally. One million volunteers and 250,000 coaches around
    the world support these efforts, training athletes in 22 Olympic-type
    sports and organizing more than 20,000 local, regional, national and
    international sporting events annually. Through regular sports training
    programs, Special Olympics athletes enhance their athletic skills,
    improve their overall physical fitness, and develop increased self-
    confidence and self-esteem. In fact, published research indicates that
    for people with mental retardation, regular participation in Special
    Olympics sports training and competition activities yields all of these
    benefits and often leads to sustained improvement in overall physical
    fitness and emotional well-being.\1\
    ---------------------------------------------------------------------------
        \1\ Dykens E., Cohen D., Effects of Special Olympics International
    on Social Competence in Persons with Mental Retardation. Journal of the
    American Academy of Child & Adolescent Psychiatry; 1996; 35.
    ---------------------------------------------------------------------------
                    Prevalence/Causes of Mental Retardation
        The World Health Organization estimates that there are
    approximately 170 million people with mental retardation worldwide.\2\
    In other words, nearly 3 percent of the world's population has some
    form of mental retardation. Accordingly, mental retardation is 50 times
    more prevalent than deafness; 28 times more prevalent than neural tube
    disorders like spina bifida; and 25 times more prevalent than
    blindness.
    ---------------------------------------------------------------------------
        \2\ World Health Organization (WHO): World Heath Statistics
    Annuals. Vols. 1990-1996. Geneva; United Nations. 1997.
    ---------------------------------------------------------------------------
        A person is diagnosed as having mental retardation based on three
    generally accepted criteria: intellectual functioning level (IQ) is
    below 70-75; significant limitations exist in two or more adaptive
    skills areas (e.g., communication, self-care, functional academics,
    home living); and the condition manifests before age 18. Mental
    retardation can be caused by any condition that impairs development of
    the brain before birth, during birth, or in childhood years. Genetic
    abnormalities, malnutrition, premature birth, environmental health
    hazards, fetal alcohol syndrome, prenatal HIV infection, and physical
    abnormalities of the brain are just some of the known causes of mental
    retardation.

      Need to Assess and Respond to the Health Needs of Individuals With
                               Mental Retardation

        A comprehensive report on the status of the health and well being
    of people with mental retardation worldwide simply does not exist.
    However, anecdotal evidence, media reports, site visits and limited
    health data indicate a dire and urgent need to address the health
    conditions and available health services for this population.
        Special Olympics has led the world aggressively where few
    governments, and certainly not the marketplace, have gone. For more
    than three decades, Special Olympics has developed and implemented
    programs in sports training and competition for individuals with mental
    retardation. The health benefits of sports training and competition for
    those with mental retardation are widely acknowledged by family members
    and professionals in the fields of mental retardation, health and
    sports.
        In recent years, Special Olympics has addressed the health needs of
    its athletes more directly through its Special Olympics Healthy
    Athletes Program and its Research and Evaluation Initiatives. Special
    Olympics Healthy Athletes provides health assessment, health education,
    disease prevention, and in many cases, corrective health care for
    Special Olympics athletes. While the program is experiencing dramatic
    growth, it is still limited in terms of the number of persons who can
    be served.
        Special Olympics is exerting leadership in the area of health for
    persons with mental retardation because, to date, adequate leadership
    has not emerged from the health care or public policy communities.
    Moreover, while there has been some welcome progress in terms of
    increased life expectancy and quality of life for persons with mental
    retardation over the past several decades, major health gaps remain and
    health improvement opportunities remain widely under-addressed.
        To respond to the dearth of data on the health of people with
    mental retardation, Special Olympics commissioned a Special Report on
    the Health Status and Needs of Individuals with Mental Retardation.\3\
    The purpose of this report is to identify opportunities that may be
    available, given current scientific knowledge and technology, to
    improve the quality and length of life for persons with mental
    retardation, and most notably, Special Olympics athletes.
    ---------------------------------------------------------------------------
        \3\ Horwitz, S., Kerker, B., Owens, P., Zigler, E. The Health
    Status and Needs of Individuals with Mental Retardation. Washington,
    D.C.; Special Olympics, Inc., March 2001.
    ---------------------------------------------------------------------------
        In one sense, this report is an in-depth, scientifically supported
    ``report card'' on the health of persons with mental retardation and
    the adequacy of programs, systems, and policies, designed to assist
    those with mental retardation live longer, better, and healthier lives.
    Specifically, the Health Report identifies the current health status
    and needs of persons with mental retardation; describes policy and
    program gaps in health care and physical fitness; and offers
    recommendations to improve access to and the quality of health care for
    people with mental retardation.
        Renowned researchers Dr. Edward Zigler, Dr. Sarah Horwitz, and
    colleagues from Yale University undertook an extensive literature
    review (175 pages, 540 citations, over 1,100 pieces of literature
    screened), which provides a basis for much of the health report. Dr.
    Donald Lollar, Associate Director of the Office for Disability and
    Health at the U.S. Centers for Disease Control and Prevention also
    assisted with preparation of the report.

                         General Public Policy Backdrop

        Length and quality of life are central concerns of numerous high-
    level policy initiatives in many countries, including the United
    States. The recent launch of the Healthy People 2010 \4\ initiative
    marks the third decade of a national commitment to improving the health
    and general wellbeing of Americans. Major goals of the initiative
    include increasing the quantity and quality of life and reducing health
    disparities among various populations. However, if one focuses on the
    health status, needs and opportunities for persons with disabilities,
    the public policy record is much more spartan. The previous Healthy
    People 2000 initiative,\5\ launched by the U.S. Department of Health
    and Human Services in 1990, included little direct focus on the health
    status and needs of persons with disabilities.
    ---------------------------------------------------------------------------
        \4\ U.S. Department of Health and Human Services. Healthy People
    2010 (Vol. I) 2nd ed. Washington, D.C.; GPO, November 2000.
        \5\ U.S. Department of Health and Human Services. Healthy People
    2000. Washington, D.C.; GPO, January 1990.
    ---------------------------------------------------------------------------
        To its credit, the Healthy People 2010 report dedicates a chapter
    and a number of ``developmental objectives'' to persons with
    disabilities. Yet, the chapter does not specifically address the health
    status, needs and access issues confronting millions of Americans with
    mental retardation or other specific disability groups. Further, there
    are notations of ``no available data'', ``inadequate data'', or
    ``unanalyzed data'' concerning persons with disabilities throughout the
    entire document. Similarly, several recent highly visible federal
    reports addressing oral health challenges and lack of access to oral
    health services for several special needs populations, barely mentioned
    the population with disabilities, including individuals with mental
    retardation.\6\
    ---------------------------------------------------------------------------
        \6\ U.S. Department of Health and Human Services. Oral Health in
    America: A Report of the Surgeon General. Rockville, Maryland. U.S.
    Department of Health and Human Services, National Institute of Dental
    and Craniofacial Research, National Institutes of Health, 2000.
        U.S. General Accounting Office. Oral Health--Dental Disease Is a
    Chronic Problem Among Low-Income Populations (Rep #HEHS-00-72). GAO;
    Washington, D.C., April 2000. U.S. General Accounting Office.
        Oral Health--Factors Contributing to Low Use of Dental Services by
    Low-Income Populations. (Rep #HHES-00-149). GAO; Washington, D.C.,
    September 2000.
    ---------------------------------------------------------------------------
        Healthy People 2010 outlines a vision for access to health care for
    every U.S. citizen:

        ``. . . the principle--that regardless of age gender, race,
    ethnicity, income, education, geographic location, disability
    (emphasis added), and sexual orientation--every person in every
    community across the Nation deserves equal access to comprehensive,
    culturally competent, community-based health care systems that are
    committed to serving the needs of individuals and promoting community
    health.''

        Unfortunately, achieving this goal remains a major challenge,
    especially for individuals with mental retardation in the United States
    and elsewhere.

                                 Major Findings

        The major findings, conclusions and recommendations contained
    herein are drawn from several sources, including: an independent,
    comprehensive review of the literature undertaken by scholars at Yale
    University, learned opinions from health and disability experts from
    various countries; administrative data derived from Special Olympics
    programs; and direct experiences of Special Olympics athletes, their
    families, program staff, and volunteers. Consistent with policies of
    Special Olympics, the findings, conclusions and recommendations in this
    report have been shared with and reviewed by a number of Special
    Olympics athletes.
        1. Individuals with mental retardation suffer from a wide range of
    chronic and acute diseases and conditions. In many instances, they
    experience more frequent and severe symptoms than the general
    population. This is not solely a result of the primary disability of
    mental retardation, but reflects more fully the totality of risk
    factors and risk reduction opportunities made available to or denied to
    them.
        Importantly, their life and health experiences can not be
    adequately explained or rationalized solely by the fact that they have
    mental retardation, since they are impacted by secondary conditions and
    persisting environmental factors (social, economic, physical, etc.)
    that fail to ameliorate, or in some cases actually exacerbate their
    risks.
        2. Evaluating isolated categorical health deficits or conditions in
    persons with mental retardation through simple disease/condition
    comparisons with the general population is not, in itself, adequate for
    assessing health status or the need for health improvement. Even where
    there is evidence that the prevalence of a specific disease or
    condition may be similar between the general population and those with
    mental retardation, the adverse impacts can be greater on those with
    mental retardation. Health must be seen in overall functional terms,
    especially for populations with disabilities.
        3. Numerous measures indicate that persons with mental retardation
    experience lower life expectancy and lower quality of life than the
    population in general. The magnitude of these gaps can not be explained
    solely by the existence of the mental retardation condition.
        4. Notwithstanding the increasing focus on personal and population
    health promotion and disease prevention, both in the United States and
    elsewhere, persons with mental retardation have received little
    consideration. Consistent with this finding, the information concerning
    the health status and needs of persons with mental retardation is
    entirely inadequate. Further, there is a scarcity of information on
    specific disease prevention and health promotion interventions that
    could improve the quality and length of life for persons with mental
    retardation.
        5. Even in situations where persons with mental retardation
    experience similar levels of disease to persons without mental
    retardation, access to timely and appropriate health care often is not
    adequate and generally poorer than for the overall population. This
    leads to unnecessary suffering, functional compromise, and costs to
    individuals, families and society.
        6. Although persons with mental retardation need health and health
    financing programs that are responsive to their particular needs, too
    often they are forced into general programs that actually can
    compromise their health. The most recent example of this is the
    movement toward managed care in Medicaid.
        Families have served as principal advocates for the health care of
    their children with mental retardation. While many families are
    fortunate to have private health insurance and/or personal resources to
    help cover health care expenses, too many families and individuals face
    substantial health care costs on their own. While a large percentage of
    the population with mental retardation is covered under state Medicaid
    programs, many of these programs are plagued by a variety of problems,
    including poor reimbursement rates to providers, excessive paperwork
    and delays, limitations and exclusions in benefits, and a generally
    poor reputation among providers.
        As an example, while dental services for many children are covered
    under Medicaid, only one-in-five eligible children receives any dental
    services each year.\7\ In most states, there are limited dental care
    benefits for adults, so that individuals with mental retardation are no
    longer eligible for dental care coverage under Medicaid, once they
    reach the age of maturity. Also, it should be noted that dental care is
    essentially unavailable under Medicare.
    ---------------------------------------------------------------------------
        \7\ U.S. Department of Health and Human Services. Office of
    Inspector General. Children's Dental Services Under Medicaid--Access
    and Utilization. San Francisco; Office of Evaluations and Inspections,
    April 1996.
    ---------------------------------------------------------------------------
        7. The majority of health professionals, who are otherwise
    qualified to treat persons with mental retardation, fail to do so. This
    is largely the result of a lack of appropriate, specific training,
    inadequate reimbursement policies, fear, and prejudice.
        8. Existing federal, state and voluntary programs to meet the
    health needs of persons with mental retardation are inadequate.
    Enhanced and new efforts with supplemented and targeted resources will
    be required. Coordinated and integrated, not piecemeal, efforts must be
    a priority.
        9. Significant additional targeted research is needed to more fully
    characterize and understand the health status and needs of persons with
    mental retardation and to test models for improving health. Still,
    existing data are adequate to conclude that persons with mental
    retardation are woefully under-addressed in terms of national
    (virtually every nation's) health priorities. The Special Olympics
    Strategic Research Plan \8\ can serve as a blueprint for many research
    efforts. However, strong research partners, including funders, will be
    necessary.
    ---------------------------------------------------------------------------
        \8\ Special Olympics, Inc. Strategic Research Symposium Papers.
    Pittsboro, North Carolina, June 24-25, 1999.
    ---------------------------------------------------------------------------
                                Recommendations
        1. All public and private programs, initiatives and reports that
    address the health needs of the general public should explicitly
    examine the unique needs of persons with mental retardation.
        Because of the complex constellation of physical, mental, and
    social variables that combine to challenge the health and wellbeing of
    this population, general conclusions based on individual demographic or
    risk factors are inadequate for designing effective policies and
    programs to help persons with mental retardation. ``One size fits all''
    solutions to the financing and delivery of services will assure that
    persons with mental retardation will continue to be under-served and/or
    receive inappropriate services.
        2. An expert working group should be convened by the Secretary of
    the U.S. Department of Health and Human Services to address equity gaps
    and opportunities that exist to better characterize the health needs of
    persons with mental retardation. If necessary to stimulate action,
    public hearings should be convened by Congress to garner necessary
    focus and priority.
        The goals of the Healthy People 2010 initiative only can be
    achieved when the health status and needs of specific populations are
    well documented, effective community and clinical education programs
    exist, prevention and treatment programs are designed, and adequate
    resources are made available.
        3. The Inspector General of the U.S. Department of Health and Human
    Services, as well as the Association of State Attorneys General, should
    evaluate whether the provisions of publicly funded and private health
    programs are providing equal or equitable protection to persons with
    disabilities, including those with mental retardation.
        The Yale University literature review points out that the health
    care system in the United States, and those in many other nations, are
    often characterized by negligence, indifference and blatant
    discrimination against people with mental retardation. This issue must
    be addressed in the context of civil rights.
        4. Specific health objectives for persons with mental retardation
    should be established, consistent with the overall goals of Healthy
    People 2010--namely, ``to increase quality life years and to reduce the
    gaps in health status.'' Public schools are provided with a great
    opportunity to improve the health of school-aged individuals with
    mental retardation. By law, public schools are required to provide an
    Individualized Education Program (IEP) for every child with mental
    retardation. As part of each IEP, the health needs of children with
    mental retardation should be assessed and appropriate services
    accessed.
        Leadership should come from the U.S. Department of Health and Human
    Services through the Administration on Developmental Disabilities,
    Centers for Disease Control and Prevention (CDC) and the National
    Institutes of Health (NIH), in conjunction with the U.S. Department of
    Education.
        5. The CDC should conduct a comprehensive review of the degree to
    which data collection and analysis regarding the health and wellbeing
    of persons with mental retardation have positively or negatively
    impacted the lives of persons with mental retardation and what
    opportunities exist to redress past shortcomings.
        Substantially enhanced documentation of the health status and needs
    of persons with mental retardation is needed. Currently, too many
    surveillance processes fail to collect adequate information on this
    population and fail to perform relevant data analyses in a timely
    fashion, which then could inform policy development and program design.
        6. A focused effort to create health literacy enhancement
    opportunities for persons with mental retardation needs to be
    undertaken.
        Closing the gap in health literacy has been identified in the
    Healthy People 2010 initiative as a principal strategy for reducing
    health disparities. Persons with mental retardation also need to have
    health information presented to them in ways that may empower and
    motivate them toward seeking higher levels of health. While this will
    not be possible universally, there are tens of millions of persons with
    mental retardation globally who can not simply be categorized as unable
    of taking an active role in their own healthcare. Further, caretakers
    will be more motivated to act in the best health interests of persons
    with mental retardation if they are aware of what appropriate standards
    are.
        7. A broad public health assessment of mental retardation needs to
    be undertaken by leading public health and professional organizations
    that can lead to the formulation of effective organizational policies
    and programs. The new National Center on Birth Defects and
    Developmental Disabilities at CDC should have an explicit program focus
    and adequate resources to fund research, surveillance, and assessments
    on the prevention of secondary disabilities among persons with mental
    retardation.
        The public health community needs to reassess and reprioritize
    mental retardation as an important public health challenge that goes
    beyond simply primary prevention of diseases and conditions that result
    in mental retardation.
        8. The NIH and other federal agencies with a health research
    mission should allocate increased levels of funding to issues critical
    to understanding all dimensions of mental retardation, and where
    research opportunities exist, to pursue the prevention and
    rectification of the primary and secondary effects of mental
    retardation.
        Special Olympics should formally transmit its strategic research
    agenda to these agencies as a basis for consensus development around
    the strategic role of federal agencies in such research.
        9. Special Olympics should convene a blue ribbon corporate health
    advisory group to develop a strategic and integrated corporate strategy
    for maximizing the impact of corporate contributions (intellectual,
    technical assistance, in-kind, cash) for the betterment of persons with
    mental retardation.
        Given the inadequate resources and attention to the health needs
    and possibilities for persons with mental retardation, it is time for
    leading health advocacy organizations, including pharmaceutical
    companies, health equipment and supply companies, health insurers, and
    government and philanthropic organizations to commit resources to
    promoting health and preventing disease in this population, so that by
    2010, clear health gains and realistic health promotion opportunities
    are created for persons with mental retardation.
        Likewise, leading philanthropic organizations need to undertake a
    critical self-examination of the degree to which they have addressed
    the health needs of persons with mental retardation. Organizations with
    weak records of support in this area should make concrete commitments
    to funding programs and projects to improve the health of persons with
    mental retardation.

                         Additional Global Perspectives

        The findings and recommendations contained herein, have as their
    principal basis the comprehensive literature review conducted by
    Horwitz et. al. at Yale University, data and perspectives from Special
    Olympics Programs, and responses from key informants from a number of
    countries who are knowledgeable of, and work in, areas related to
    mental retardation.
        Dr. Stephen Corbin and Dr. Donald Lollar asked professional
    colleagues in several countries to respond to a survey instrument
    (available from Special Olympics upon request) containing items
    addressing the existence of data, policies, laws, and programs for
    individuals with mental retardation. The key informant responses were
    solicited after completion of the other portions of the report so that
    they might serve a validation function. Responses came from individuals
    in Kenya, India, Australia, and the Czech Republic. These responses did
    indeed validate the findings and recommendations that had been
    articulated in the Yale University literature review.
        To date, health data collection and analysis for the population
    with mental retardation has not been a priority in these countries.
    Representative country data were not available to characterize the
    health status and needs of persons with mental retardation in any
    comprehensive way. Data that are available are not collected on an
    ongoing or periodic, scheduled basis. The tendency is for official data
    collection sources to seek data on disability in general or to rely on
    general population data which are of limited utility for understanding
    the health needs of persons with mental retardation.
        Some institutional data are available (Czech Republic), but the
    depth of information varies significantly. It was noted that in
    Australia, de-institutionalization of persons with mental retardation
    has interrupted not only the availability of health services to these
    persons, but also negatively impacted the collection of information
    about the health needs and health service access for much of this
    population.
        All respondents indicated that access to necessary health care
    services for individuals with mental retardation is a problem. Even in
    countries where medical care is made available by law to all citizens,
    persons with mental retardation have difficulty receiving needed care
    from qualified providers. Children with mental retardation tend to fare
    better than do adults with mental retardation. Those living in cities
    generally receive inadequate care and those in villages are even worse
    off. Non-Governmental Organizations (NGOs) provide some assistance
    (Kenya), but this is not sufficient. It was pointed out that in
    Australia, many conditions could be ameliorated and/or prevented by
    early intervention, but periodic screening is not a well-established
    part of the system. Disease prevention and health promotion services
    for persons with mental retardation do not appear in any systematic way
    through government or private sources and are not a public priority.
        Further, bias against persons with mental retardation is reported
    to exist still, even among health care providers, and most persons with
    mental retardation are not in a strong position to communicate their
    health needs and desires. Several respondents indicated that
    individuals with mental retardation may be eligible for a level of
    services similar to those provided to individuals with other
    disabilities, but in actuality, they usually end up with poorer access
    to care. For example, in India, individuals with visual impairments and
    individuals who are orthopedically challenged have better access to
    health services than do individuals with mental retardation. Lack of
    adequate resources to pay for needed care is a consistent problem and,
    in the case of institutions (Czech Republic), adequate resources to
    provide appropriate staffing levels is a challenge.
        The greatest barriers to the improvement in health status for
    persons with mental retardation include negative attitudes among the
    public, governments, service providers, and, in some instances, even
    among family members. The health needs of persons with mental
    retardation do not register high enough on the priority scale to
    attract the resources and attention that they merit. Even where
    policies and laws exist that should provide a basis for needed services
    for persons with mental retardation, there is little attention to
    surveillance and enforcement.
        Informants made a number of suggestions about the most important
    actions that could be taken over the next decade in order to increase
    life expectancy and quality of life for persons with mental
    retardation. These include:
      --Earlier, more adequate and more frequent health screening;
      --A more responsive general health system;
      --Additional training and strong encouragement for health
            professionals to meet the needs of people with mental
            retardation;
      --The development of a network of specialized tertiary referral
            health clinics to support the general health services and to
            provide a base for research and training;
      --Adequate national data bases;
      --Implementation of existing laws;
      --Implementation of a mass market public awareness program through
            print and electronic media, including the internet, to better
            sensitize the public as to the nature and needs of persons with
            mental retardation;
      --A stabile health insurance system with adequate financing;
      --Standardized, periodic screening targeting prevention and needed
            care;
      --Better communication about the lives of persons with mental
            retardation, coupled with training in communications and ethics
            for care providers;
      --Governments that recognize mental retardation as a health care
            specialty and subsequently enact policies favorable to people
            with mental retardation; and,
      --Support of National Special Olympics Programs through which
            governments, the general public, professionals, and
            organizations can assist in health promotion and disease
            prevention efforts on behalf of persons with mental
            retardation.
     Special Olympics Healthy Athletes--An Initial Approach to Addressing
              the Health Needs of Persons With Mental Retardation
        Special Olympics has provided year round sports training and
    competition opportunities for persons with mental retardation for more
    than three decades. Over a million athletes of all ages participate in
    a variety of summer and winter Olympic-type sports.
        Special Olympics was started by Eunice Kennedy Shriver in 1968
    because persons with mental retardation consistently were excluded from
    societal opportunities, including sports and recreation. She recognized
    that persons with mental retardation could accomplish significant
    things through sport, while, at the same time, finding meaning in their
    lives. Since that time, the public record of service and opportunity
    provided to persons with mental retardation through Special Olympics
    has been documented through extensive print and electronic media and a
    continuing stream of highly visible public events.
        In recent years, Special Olympics has expanded its interest in the
    health of its athletes by supporting research activities, organizing
    medical symposia, and collaborating with international organizations on
    prevention issues.
        Beginning in 1989, the health needs of persons with mental
    retardation were highlighted as a result of vision screening clinics
    initiated through the Sports Vision Section of the American Optometric
    Association. These initial clinics demonstrated that Special Olympics
    athletes had significant and highly prevalent vision impairments and
    that they were woefully lacking in quality vision care opportunities.
        In the early 1990s, an additional program, Special Olympics Special
    Smiles, was created to address the unmet oral health needs of Special
    Olympics athletes. Like Special Olympics Opening Eyes, Special Olympics
    Special Smiles demonstrated that Special Olympics athletes had a
    significant unmet need for oral health care. Boston University's
    Goldman School of Graduate Dentistry provided the founding
    institutional home for Special Smiles and enabled the program to grow
    quickly.

                   What is Special Olympics Healthy Athletes?

        Special Olympics Healthy Athletes is a diverse program of health
    assessment, professional training, service provision, and health
    referral services for Special Olympics athletes. Special Olympics
    Healthy Athletes screening clinics are conducted in conjunction with
    sports competitions at local, state, national, regional, and global
    levels. These programs are elective for Special Olympics Programs and
    Games Organizing Committees. Despite the non-mandatory aspect, Special
    Olympics Healthy Athletes programs have been expanding rapidly, based
    on the recognition that they provide a new and valuable range of
    services and resources to Special Olympics athletes. Special Olympics
    Healthy Athletes is not intended to be a comprehensive health care
    system, but rather is a short-term, limited, yet practical means for
    bringing a range of health services to Special Olympics athletes in a
    welcoming, respectful, and non-discriminatory setting.
        Special Olympics Healthy Athletes programming includes:
      --Delivery of direct health care services to Special Olympics
            athletes;
      --Health education services for athletes;
      --Athlete referral for needed follow-up health care;
      --Documentation of the health status and needs of athletes;
      --Recruitment and training of health personnel in treating people
            with mental retardation;
      --Advocacy for improved public policies in support of the health
            needs of people with mental retardation; and,
      --Advancing knowledge about the delivery of health care to persons
            with mental retardation.

                           Range of Services Provided

        The Special Olympics Healthy Athletes program components offer the
    following range of health care services, varying by discipline and
    specific screening protocols:
      --Screening assessment;
      --Clinical examination;
      --Health education/counseling;
      --Preventive services;
      --Corrective services;
      --Personal preventive supplies;
      --Referral for follow-up care; and,
      --Interaction between athletes and specially trained and motivated
            health care providers.
        Qualified experts from the health disciplines within the Special
    Olympics Healthy Athletes program determine the appropriate contents
    and standards for their screening and service offerings, based on the
    state of science and clinical practice, with adaptations for the
    special population that is being served. Special Olympics Program
    leaders along with the Special Olympics Global Medical Advisory
    Committee and legal staff monitor and approve overall program scope and
    practices.
        In 2001, more than 100 Special Olympics Healthy Athletes screening
    clinics will be conducted. This includes screening events at local,
    state, national, and international levels. Also, beginning in 1999,
    several additional health disciplines were pilot tested for the first
    time as Special Olympics Healthy Athletes components. They include:
    hearing; physical therapy; dermatology; and orthopedics. Screening
    clinics in these disciplines have been conducted at a number of Games
    in the U.S. and abroad, and further growth in these and other medical
    disciplines is anticipated.

               Special Olympics Healthy Athletes Program Findings

        In addition to the health services that Special Olympics athletes
    receive through the Special Olympics Healthy Athletes program, valuable
    insights have been gained as to the health status and needs for this
    population. As reflected in the Yale University literature review,
    Healthy People 2010, and feedback by key informants from different
    countries, there is a general lack of information as to the health
    status and needs of persons with mental retardation. Further, available
    data generally are from small institutionally based studies or from the
    administrative records of public agencies.
        Specific advantages of the data derived from Special Olympics
    Programs is that the population served is substantial and includes
    athletes of all ages from around the world. Literally tens of thousands
    of Special Olympics athletes have been screened through the Healthy
    Athletes program to date. Further, the data have been collected using
    standardized protocols developed by experts in the field (e.g., U.S.
    Centers for Disease Control and Prevention).
        Limitations in the data that must be recognized include the large
    number of examiners involved, the limited sensitivity of the survey
    instrument in some cases to detect quantitative differences in levels
    of disease (e.g., oral health screening instrument), and the
    convenience aspects of the population being reported on (e.g., athletes
    participating in Special Olympics events may not be fully
    representative of the larger community of institutionalized and non-
    institutionalized persons with mental retardation worldwide.
        As pointed out in the Yale University literature review, there
    appear to be certain health advantages or disadvantages based on an
    individual's residential status. A number of disease conditions may be
    more prevalent among individuals with milder retardation living in
    freer environments where they must make conscious choices to avoid
    health risks (e.g. tobacco use) or to practice healthy habits on their
    own (e.g. oral hygiene, physical exercise, etc.). Nevertheless, there
    is little doubt that that Special Olympics Healthy Athletes data make a
    valuable contribution toward understanding the health status and needs
    of persons with mental retardation and planning programs and policies
    to address unmet needs.

                   Vision Health of Special Olympics Athletes

        Nearly 10,000 athletes have received vision assessments through
    Special Olympics Opening Eyes program since its inception. It is
    anticipated that in 2001, due to program expansion facilitated by a
    major, multi-year grant from the Lions Clubs International Foundation,
    an additional 6,000-7,000 athletes will directly receive such
    screenings.
        Findings have been fairly consistent over several years of
    assessments. Special Olympics athletes had not received adequate vision
    care in terms of timeliness and many require corrective services. Over
    60 percent had not received a vision assessment in the past three
    years. Between one-fifth and one-third of athletes required glasses for
    the first time or replacement glasses. In many instances, athletes were
    wearing prescriptions that were found to be grossly inaccurate. The
    prevalence of astigmatism (44.2 percent) and strabismus (17.8 percent)
    were high. A high percentage of athletes examined would be classified
    as legally blind according to World Health Organization criteria.
        Many anecdotal reports identified athletes who, after receiving
    eyewear through the Special Olympics Opening Eyes program, could, for
    the first time, see the finish line and their friends and families
    cheering for them. In a number of instances, coaches and family members
    reported that the new eyewear literally changed the personality of
    individual athletes and immediately enhanced their quality of life,
    while reducing certain risks (e.g. injury from falls or collisions).
    Additionally, many athletes received prescription swim goggles and
    prescription or plano safety sports glasses intended to prevent sports
    injuries.

                    Oral Health of Special Olympics Athletes

        Oral health assessments have been provided to approximately 20,000
    athletes through the Special Olympics Special Smiles program over the
    past seven years. Most screening clinics have been conducted in the
    United States, although it is anticipated that major program growth,
    starting in 2001, will take place outside the United States.
        Special Olympics Special Smiles utilizes an assessment instrument
    developed by the CDC especially for Special Olympics. The instrument
    was designed to be reliable when used by a variety of trained examiners
    under varying conditions. This comes at the expense of providing
    elaborate quantitative detail. For example, an athlete might be
    assessed for obvious dental decay in at least one tooth. If such were
    the case, the assessment form would be marked ``yes.'' However, if
    several teeth for an athlete had obvious decay, the ``yes'' category
    likewise would be marked. Thus, there is no apparent distinction when
    examining data as to the extent of dental disease in an individual
    athlete. This protocol differs from more sophisticated epidemiological
    studies conducted periodically by federal and state governments, which
    precisely quantify the presence of dental disease down to relatively
    small caries lesions on individual tooth surfaces. The limitations of
    government studies, however, is that they fail to include an adequate
    number of individuals with mental retardation to provide meaningful
    results or they fail to identify individuals by disability category.
        Notwithstanding the limitations in the data derived from the
    Special Olympics Special Smiles screenings, a good overall picture
    emerges of the oral health status and needs of Special Olympics
    athletes. The 1999 Special Olympics World Summer Games in Raleigh,
    North Carolina are representative. For the over 2,200 athletes of all
    ages examined, nearly 20 percent reported pain in the oral cavity, the
    vast majority attributed to tooth pain. Much untreated dental decay
    exists in Special Olympics athletes. Nearly one-in-three had active
    dental decay (untreated) in molar teeth and more than one-in-ten had
    active decay in pre-molar or anterior (front) teeth. Fewer than one-in-
    ten of the athletes screened had preventive dental sealants present on
    any molar teeth.
        There is a clear need for more professional dental care to be made
    available to this population. More than 40 percent of screened athletes
    were in need of professional care beyond the level of routine,
    maintenance care; more than one-third of these needed urgent care.
    There were substantial differences between U.S. and non-U.S. athletes
    in terms of the oral health care needed. Nearly half of non-U.S.
    athletes were in need of care beyond routine maintenance care compared
    to 28.4 percent of U.S. athletes. Urgent care was required nearly three
    times as often (19.9 percent) for non-U.S. athletes as for U.S.
    athletes (7.1 percent).
        During 2000, 35 Special Olympics Special Smiles screening clinics
    were conducted, serving nearly 10,000 athletes. While the results from
    site to site demonstrated some variations in individual measurement
    categories, overall the data were consistent with the data gathered at
    the 1999 Special Olympics World Summer Games.

                  Hearing Health of Special Olympics Athletes

        The Special Olympics Healthy Hearing program is much newer than the
    Special Olympics Opening Eyes or Special Smiles programs. The first
    hearing screening was conducted as part of the Special Olympics World
    Summer Games in 1999. A second large-scale event was conducted at the
    2000 Special Olympics European Games in Groningen, the Netherlands.
        During the European Games, 529 athletes were screened at the
    Special Olympics Healthy Hearing venue. The athletes were from 61
    countries. Screenings included otoscopic examination of external ear
    canals, otoacoustic emissions (OAE) hearing tests, pure tone
    audiometry, and tympanometry to screen middle ear function. Twenty-six
    percent (26 percent) of the athletes failed the hearing screening as
    compared to a general population rate expected to be less than 5
    percent. Of this group, 52 percent did not pass tympanometric
    screening, suggesting the presence of a conductive (probably medically
    correctable) hearing loss. Conversely, 48 percent passed the
    tympanometric screen, which implies that they failed the hearing
    screening due to a sensorineural (permanent) hearing loss.
        Of the nearly three-quarters of the screened athletes who passed
    the screening protocol, one-in-five had ear canals blocked or partially
    blocked with cerumen (ear wax), reflecting a lack of ear hygiene and
    professional care. The results from the Groningen screening were
    similar to those compiled at the 1999 Special Olympics World Summer
    Games.

             Obesity as a Risk Factor for Special Olympics Athletes

        According to Healthy People 2010, the prevalence of overweight
    individuals is on the rise with 11 percent of school age children and
    23 percent of adults being classified as obese. The prevalence of
    obesity in the population with mental retardation has been reported as
    more common than in the general population. Obesity has been implicated
    as a major preventable health risk factor for the general population.
    These risks include a higher prevalence of cardiovascular disease,
    cerebrovascular disease, diabetes mellitus, and certain types of
    cancer.
        In 1999, during the Special Olympics World Summer Games,
    nutritional assessment and education were included in the Healthy
    Athletes program for the first time. Adding this assessment to the
    Healthy Athletes clinics was a response to the increasing focus on the
    nutritional status among the general population. For Special Olympics
    athletes who train and enter athletic competition, being under-weight
    or over-weight, (representing poor nutritional status in both cases)
    may affect general wellbeing and performance. One thousand and sixty-
    six (1,066) Special Olympic athletes were assessed by anthropometric
    measurements. These included height and weight used to calculate a Body
    Mass Index (BMI) which equals weight (Kg)/ht (m\2\)) for each athlete.
    There were 421 athletes from the United States and 645 from other areas
    of the world.
        The BMI measurements were standardized for age using the NHANES III
    BMI values. BMI values for children and adults have been standardized
    in the U.S. for the general population, but presently there are no
    available established BMI values for children and adults with mental
    retardation. Each athlete who volunteered was evaluated
    anthropometrically by obtaining height and weight. BMI percentile
    ranges across ages were then compared. BMI below the 5th percentile
    represented malnutrition and between the 5th and 15th percentile a risk
    of under nutrition. BMI greater than 85th percentile represented
    obesity and greater than 95th super obesity with significant health
    risk factors.
        For U.S. athletes, 3.3 percent were below the 5th percentile
    compared to 5.2 percent of athletes from other countries. The 5th to
    15th percentile included 5 percent of U.S. athletes and 7.1 percent of
    athletes from other countries. There were 11.2 percent of U.S. athletes
    between the 15th and 50th percentile and 30.9 percent from other
    countries. For the 50th to 85th percentiles, there were 27.6 percent of
    athletes from the U.S. and 36.6 percent of other athletes. Fifty three
    percent (53 percent) of U.S. athletes and 20 percent of athletes from
    other countries were greater than the 85th percentile BMI, with 33
    percent of American athletes and 7 percent of athletes from other
    countries greater than 95th percentile.
        These findings reflect that the majority of U.S. athletes competing
    at the 1999 Special Olympics World Summer Games were above the 85th
    percentile and thus, were obese. Further, 33 percent would be
    considered in a group with significant health risks because of super
    obesity. More data for specific age, sex, living conditions and
    diagnoses for nutritional status in the population with mental
    retardation need to be obtained. Also, the percentage of patients with
    Down syndrome relative to the general population with mental
    retardation is generally thought to be more obese and may need to be
    studied separately.
        Thus, it is apparent that increased efforts to work with athletes,
    coaches, families, teachers, health care providers, and program
    administrators in the area of diet, nutrition, weight control, and
    fitness are needed.

     Training Health Professionals to Treat Persons With Mental Retardation

        It stands to reason that for individuals with mental retardation to
    have their health needs met, there must be trained, willing health care
    providers available to do so. As reflected in the Yale University
    literature review, a number of reports indicate that health care
    providers overall feel ill prepared and minimally motivated to treat
    persons with mental retardation, even for conditions found routinely in
    the general patient population. Health professional students receive
    little didactic exposure to the health needs of persons with mental
    retardation during their training and even fewer have meaningful
    clinical experiences with such patients.
        Accordingly, Special Olympics has made it a priority to train
    health professional volunteers and to provide them with hands-on
    experience in serving persons with mental retardation. Typically,
    health professional volunteers for the Special Olympics Healthy
    Athletes program receive didactic training as to the nature of mental
    retardation, special health and social challenges faced by persons with
    mental retardation, special aspects of their own discipline relating to
    mental retardation, and effective techniques for rendering quality
    clinical services to this population. Volunteers additionally receive
    actual experience, lasting from several hours to several days,
    depending on the nature of the event, to provide service to, and
    interact with, Special Olympics athletes. They are accorded continuing
    professional education credit for this experience.
        Consistently, health professional volunteers report their Special
    Olympics Healthy Athletes experience in extremely positive terms. Many
    individuals characterize the experience as the most meaningful
    professional encounter of their careers. Students typically become
    highly motivated to seek additional experience with special needs
    populations. Research conducted by Special Olympics clinical
    consultants on health professional volunteers indicates that volunteer
    optometrists have a reasonably high expectation for the capabilities of
    persons with mental retardation prior to their Special Olympics Healthy
    Athletes experience, and, that after their experience, they report even
    more positively in terms of what persons with mental retardation can
    accomplish in life and contribute to society. Oral health providers
    (dentists, dental students, dental hygienists) evaluated using the same
    instrument showed similar, albeit less consistent, results.

                                 Legacy of Care

        While the health services provided to Special Olympics athletes in
    conjunction with Special Olympics Games are valuable in their own
    right, they are minimal in the context of the overall health needs of
    persons with mental retardation on a year round basis.
        The ultimate goal of the Special Olympics Healthy Athletes program
    is to create a legacy of care for persons with mental retardation. The
    practicality of such a goal will only be apparent after additional
    research is conducted to determine whether, in addition to improved
    health professional attitudes, active commitments to outreach and the
    care of persons with mental retardation can be realized in providers'
    home clinics, hospitals and practices. Another important question is
    whether health professionals who have had such experiences subsequently
    reach out and encourage colleagues to become providers of care to
    persons with mental retardation. Only when this happens to a
    significant degree, will the goals espoused in Healthy People 2010 be
    achieved for all people.

                                  Contributors

        Paul Berman, O.D., Global Clinical Director, Special Olympics-Lions
    Clubs International Opening Eyes Program, Hackensack, New Jersey;
    Sandra S. Block, O.D., M.Ed., Research Director, Special Olympics-Lions
    Clubs International Opening Eyes Program, Chicago, Illinois; Robert
    Cooke, M.D., Senior Medical Advisor, Special Olympics, Inc., Vero
    Beach, Florida; Stephen B. Corbin, D.D.S., M.P.H., (Project Director),
    Dean, Special Olympics University, Washington, D.C.; Sue Danberg, O.D.,
    Executive Director, Special Olympics-Lions Clubs International Opening
    Eyes Program, Glastonbury, Connecticut; Kimberly Elliott, M.A., Senior
    Advisor to the President, Special Olympics, Inc., Washington, D.C.;
    Gilbert Herer, Ph.D., Global Clinical Director, Special Olympics
    Healthy Hearing, Washington, D.C.; Harry Holden, U.S. Centers for
    Disease Control and Prevention, Atlanta, Georgia; Sarah M. Horwitz,
    Ph.D., Associate Professor, Department of Epidemiology and Public
    Health, Yale University School of Medicine, New Haven, Connecticut;
    Bonnie D. Kerker, M.P.H., Graduate Student, Department of Epidemiology
    and Public Health, Yale University School of Medicine, New Haven,
    Connecticut; Charles M. Kivindu, M.B.ch.B., M. Med., M.P.H., Member,
    Special Olympics Global Medical Advisory Committee, Nairobi, Kenya;
    Kathy Lituri, Boston University Goldman School of Dentistry, Boston,
    Massachusetts; Donald Lollar, Ed.D., Associate Director for Disability
    and Health, Division of Birth Defects, Child Development and Disability
    and Health, National Center for Environmental Health, U.S. Centers for
    Disease Control and Prevention, Atlanta, Georgia; Trevor R. Parmentor,
    Ph.D., Director, Center for Developmental Disability Studies, Ryde,
    Australia; Steven Perlman, D.D.S., M.S., Global Clinical Director,
    Special Olympics Special Smiles, Boston, Massachusetts; Judith
    Montgomery, Ph.D., Assistant Clinical Director, Special Olympics
    Healthy Hearing, Orange, California; Pamela L. Owens, Ph.D., Graduate
    Student, Department of Epidemiology and Public Health, Yale University
    School of Medicine, New Haven, Connecticut; Alan Rosenberg, M.D., Brody
    School of Medicine, Pediatric Gastroenterology, Greenville, North
    Carolina; Eunice Kennedy Shriver, Founder and Board Member, Special
    Olympics, Inc., and President, Joseph P. Kennedy, Jr. Foundation,
    Washington, D.C.; Timothy P. Shriver, Ph.D., President and CEO, Special
    Olympics, Inc., Washington, D.C.; Riva Tougher-Decker, Ph.D., Program
    Director and Associate Professor, School of Health Related Professions,
    University of Medicine & Dentistry of New Jersey, Newark, New Jersey;
    Uma Tuli, Ph.D., M.Ed., M.A., Member, Special Olympics Global Medical
    Advisory Committee, Delhi, India; Hana Valkova, Ph.D., Faculty of
    Physical Culture, Palacky University, Olomouc, Czech Republic; Mark
    Wagner, D.D.S., M.P.H., Director of Health and Research Initiatives,
    Special Olympics, Inc., Washington, D.C.; Barry Waldman, D.D.S.,
    M.P.H., Ph.D., Professor, Dental Health Services, State University of
    New York at Stony Brook, Stony Brook, New York; Edward Zigler, Ph.D.,
    Sterling Professor of Psychology, Department of Psychology, Yale
    University, New Haven, Connecticut.
        Appreciation is extended to the following individuals who reviewed
    and provided comment on this report during its development:
        Francis Dashnaw, Special Olympics Coach and Parent of a Special
    Olympics Athlete, Fredericksburg, Virginia; Francis Dashnaw, Jr.,
    Special Olympics Athlete, and Employee, Special Olympics, Inc.,
    Washington, D.C.; Renee Dease, Special Olympics Athlete, and Employee
    Special Olympics, Inc., Washington, D.C.; Robert Jones, Special
    Olympics Athlete, and Employee Special Olympics, Inc., Washington,
    D.C.; Marty Wyngaarden Krauss, Ph.D., Professor of Social Welfare &
    Director, Starr Center for Mental Retardation, Brandeis University, and
    Special Olympics Board Member, Waltham, Massachusetts; The Honorable
    Rosario Marin, Councilwoman, City of Huntington Park, and Special
    Olympics Board Member, Huntington Park, California; Mehmet Oz, M.D.,
    Cardiologist, and Irving Assistant Professor of Surgery, Columbia
    University, New York, New York; Courtney Pastorfield, Manager, Special
    Olympics Healthy Athletes, Special Olympics, Inc., Washington, D.C.;
    The Honorable Sargent Shriver, Chairman, Special Olympics, Inc.,
    Washington, D.C.; Joanne Simons, President, National Down Syndrome
    Congress, Redding, Massachusetts; The Honorable Sue Swenson,
    Commissioner, Administration on Developmental Disabilities, U.S.
    Department of Health and Human Services, Washington, D.C.; Joseph B.
    Warsaw, M.D., Dean, College of Medicine, University of Vermont,
    Burlington, Vermont.
                                     ______

       THE HEALTH STATUS AND NEEDS OF INDIVIDUALS WITH MENTAL RETARDATION

                            Chapter 1.--Introduction

                                    PURPOSE

        In recognition of the need to improve the quality of life of
    individuals with mental retardation (MR), Special Olympics Inc. (SOI)
    commissioned this report to examine the health needs of children and
    adults with MR. The purpose of this report is three-fold: (1) to
    identify the current health status and needs of individuals with MR,
    (2) to identify services gaps in supporting these needs and (3) to
    propose specific recommendations to address the unmet health care needs
    of individuals with MR.
        Early in the 20th century, individuals with MR were generally
    isolated, rather than encouraged to lead fulfilling and healthy lives
    (David, 1970; Rix, 1986, Campbell, 1999). The last 40 years, however,
    have seen dramatic changes in sentiments regarding those with MR,
    resulting in a turn in public policy towards an emphasis on
    normalization and inclusion (Rowitz, 1992; Kauffman and Hallahan, 1995;
    Parmenter, 1999). Other developed countries, such as Canada, the United
    Kingdom (U.K.), the Scandinavian countries and Australia, have seen
    similar movements (Malin, 1981; Rowitz, 1990; Parmenter, 1999).
        As a result of these changes in developed countries, much debate
    and research has focused on the prevention of MR,
    deinstitutionalization, and the education and employment of individuals
    with MR (Tizard, 1971; Clarke, 1991; Anderson et al., 1998). In the
    U.S., these themes are reflected in court cases, legislative actions
    and federal initiatives, including Wyatt v. Stickney (1972), Public Law
    94-142 and its successor, the Individuals with Disabilities Education
    Act (IDEA), the Americans with Disabilities Act (1990) and reports by
    the President's Committee on Mental Retardation (Anderson et al.,
    1998). Globally, a variety of international organizations, such as the
    International Association of Scientific Studies on Intellectual
    Disability, have been developed to support and study both the
    prevention of MR and the public education concerning individuals with
    MR (Clarke, 1991). The health status and health service needs of
    individuals with MR, however, have received little attention over the
    past four decades.
        This lack of attention to health status is surprising, particularly
    in light of the tremendous gains in life expectancy which have resulted
    from medical and public health advances. The life expectancy of
    individuals in the U.S. increased 27.26 years between 1900 and 1990
    (NCHS, 1999), and in 1997, the average life expectancy was 76.5 years
    (Anderson, 1999). Similarly, the life expectancy for individuals in
    Western Europe increased in the past century, resulting in a current
    average life expectancy of 74.0 years (Population Division, 1998).
    Increased longevity is evident not only in the general population, but
    also among individuals with MR (Rowitz, 1992; Janicki and Breitenbach,
    2000). Currently, the average life expectancy of older adults with MR
    is 66.1 years, but younger adults with MR are expected to live as long
    as their peers without MR (Janicki et al., 1999). With improved
    assistive technology and effective public health programs that control
    most infectious diseases, not only are individuals with mild MR living
    longer but some individuals with more severe MR also have increased
    life expectancies (Eyman et al., 1988). As a result, these individuals
    have recently been faced with the same chronic diseases, including
    cardiovascular disease, cancer and diabetes, which confront the general
    adult population (Moss and Turner, 1995 in Barr et al., 1999).
        Although effective health prevention strategies and treatments
    exist for many diseases (Bunker et al., 1995; U.S. Preventive Services
    Task Force, 1996), not everyone benefits equally from these medical
    interventions. The poor, minorities and the socially disadvantaged
    disproportionately have poor health outcomes and lack access to
    adequate health care services (Hertzman et al, 1994). Individuals with
    MR are particularly vulnerable to having unmet health care needs, as
    they are faced with many challenges in understanding and maintaining
    their health (President's Committee on Mental Retardation, 1999).
    Individuals with MR may have difficulties understanding the effects of
    behavior on health, the risks and benefits of medical treatment, and
    the process of accessing appropriate and necessary health services
    (Barr et al, 1999; President's Committee on Mental Retardation, 1999).
    In addition, when health care services are utilized by this population,
    health providers may have difficulties recognizing and treating various
    diseases, obtaining accurate medical histories and communicating with
    patients who have cognitive and language disabilities (Schor et al.,
    1981; Minihan and Dean, 1990; Lennox et al., 1997)
        The lack of access to appropriate health care services also may be
    a relatively new problem for individuals with MR, resulting, at least
    in part, from the deinstitutionalization of the 1970s and 1980s.
    Between 1967 and 1997, as individuals with MR were mainstreamed into
    the community, there was a 71 percent reduction in the number of
    individuals in state MR/developmental disability facilities (Anderson
    et al., 1998). Trends of declining populations in MR facilities also
    are evident in other developed countries, such as Great Britain, where
    there was a 36 percent reduction in the number of individuals in long-
    stay hospitals between 1980 and 1990 (Hart, 1998). As a result of
    deinstitutionalization, all but the most severely disabled individuals
    with MR are expected to function in the community environment. Many of
    these individuals can and do achieve levels of functioning that were
    not previously thought possible (President's Committee on Mental
    Retardation, 1999). Not all, however, have their health care needs
    adequately addressed in the community, due to a limited availability of
    community resources and a lack of access to both knowledgeable care
    providers and a continuity of care (Savino et al., 1973; Saenger et
    al., 1979; Newacheck et al., 2000). In addition, the recent increase in
    managed care, and its emphasis on cost-containment, may exaggerate the
    impact that poor access to quality medical care has on this population
    (Kastner, 1991; Department of Health, 1995 in Jones and Kerr, 1997,
    President's Committee on Mental Retardation, 1999). As a result, unmet
    health care needs may be an unintended consequence of
    deinstitutionalization. Although controversy remains regarding the
    quality of care received in institutions (Landesman and Butterfield,
    1987; Lowe et al., 1995), individuals in residential centers were at
    least likely to have a usual source of care and be seen by providers
    experienced in the treatment of individuals with MR (Durkin, 1996).
        Consequently, to develop a coherent set of recommendations for the
    improvement of the health of individuals with MR, a thorough review of
    the literature on the current health status of those with MR was
    commissioned by SOI. In preparation for this report, several steps were
    taken to ensure a thorough review of academic and public policy
    documents. Researchers searched Medline and PsycInfo for peer-reviewed
    articles on the physical, mental, dental and ocular health of people
    with MR, as well as the availability and accessibility of health care
    services for these individuals. Many of these studies utilized
    administrative data accessed from service delivery databases. In
    addition, publications and reports were obtained from national and
    international organizations focusing on MR, including the American
    Association for Mental Retardation (AAMR), The Arc of the United
    States, and the International Association for the Scientific Study of
    the Intellectual Disabilities (IASSID). Based on a search of GPO Access
    and the Internet, government documents that relate to the health and
    health service use of individuals with MR also were obtained. Further,
    individuals from several federal agencies (including the Centers for
    Disease Control and Prevention, the National Council on Disability, the
    President's Committee on Mental Retardation, the U.S. Bureau of Census
    and the U.S. Department of Health and Human Services) were contacted
    and interviewed. Although numerous articles exist regarding the health
    status and needs of individuals with MR, not all are scientificially
    rigorous or pertinent to this manuscript. Therefore, while
    approximately 1,100 articles were considered, only 548 were admitted
    into this review.
        Individuals from academic institutions and those involved in
    programs for individuals with MR through SOI, including Drs. Paul
    Berman, Sandra Block, Steve Corbin, Matthew Janicki, Steven P. Perlman,
    and H. Barry Waldman, also provided additional information. National
    U.S. datasets, including the National Health Interview Survey (NHIS),
    the National Health Expenditure Survey and the Survey of Income and
    Program Participation, also were reviewed to determine the availability
    of data related to individuals with MR.
        Following a review of the definition and prevalence of MR, this
    report examines the physical, ocular, mental and dental health needs of
    individuals with MR. Next, the health care services available and
    accessible to this population are discussed. The report concludes with
    a list of recommendations, proposed to improve the health of
    individuals with MR.

                        DEFINITION OF MENTAL RETARDATION

    Introduction
        Valid measurement is the cornerstone of reliable epidemiological
    studies. Inappropriate measurement can result in a misclassification of
    either exposures or outcomes (in the case of this review, the
    classification of individuals with or without MR), which may lead to
    inconsistent or biased results (Armstrong et al., 1992; Kelsey et al.,
    1996; Rothman and Greenland, 1998). To ensure the correct
    classification of individuals into the categories of interest,
    definitions should be precisely specified from the outset of any study
    (Rothman, 1986). This is particularly important when examining social,
    psychological or cognitive impairments, such as MR, because often no
    objective biological measurement of these conditions exists (Kelsey et
    al., 1996).
        An accurate and consistent definition of mental retardation is
    critical because of its impact on the prevalence, or count, of those
    with MR. However, despite the importance of consistency, MR is not
    always defined in the same way across research studies or service
    agencies, even within the same state (Koller et al., 1984; Borthwick-
    Duffy et al., 1994). While some definitions rely on IQ scores alone to
    classify individuals with MR, some only use adaptive behaviors for
    classification, and others include both IQ scores and measures of
    adaptive skills (Whitman et al., 1990; Borthwick-Duffy et al., 1994).
    In addition, many studies are based on broad categories of either
    severity (using labels such as mild, moderate, severe and profound MR)
    or etiology (utilizing the terms cultural/familial and organic MR).
    Definition of Mental Retardation
        The most commonly cited definition of MR comes from the AAMR. Most
    recently (1992), the AAMR has defined MR as the onset of significant
    limitations in both general intellectual and adaptive functioning
    during the developmental period (18 years and under). Intellectual
    limitations refer to an Intelligence Quotient (IQ) which falls two
    standard deviations below the population mean of 100 (<70), and
    adaptive functioning limitations refer to impairments in at least two
    out of ten skill areas (AAMR, 2000). MR is also defined in the
    Diagnostic and Statistical Manual of Mental Disorders, 4th edition
    (DSM-IV) by the American Psychiatric Association (APA). Similar to the
    AAMR definition, the DSM-IV has three diagnostic criteria for MR,
    including sub-average intellectual functioning (IQ <70), impairments in
    adaptive functioning and onset before age 18 (APA, 1994).
        Although the core criteria for MR are similar between the AAMR and
    the DSM-IV definitions, there are important differences between the
    two. First, while the DSM-IV definition of MR has a strict IQ cutoff of
    70, the 1992 AAMR definition indicates that if an individual presents
    with other signs of MR, the IQ cutoff may be raised to 75 (Schalock et
    al., 1994; Reiss, 1994). Second, although both definitions include a
    sub-classification system, the bases of the two sub-classification
    systems differ. The AAMR definition includes a scale measuring the
    extent of support needed to function in the environment, focusing on an
    individual's strengths, support systems, capabilities and interaction
    with the environment (Schalock et al., 1994; King et al., 1997). In
    contrast, the DSM-IV definition specifies the degrees of MR severity
    based on the level of IQ (mild=50-55 to 70, moderate=34-40 to 50-55,
    severe=20-25 to 35-40 and profound <20-25) (APA, 1994). Further,
    although not formally part of the definition of MR, the APA includes MR
    in the DSM-IV, thereby classifying MR as a mental disorder. The AAMR,
    however, explicitly states that MR is neither a medical nor a mental
    disorder (AAMR, 2000).
        Considerable controversy exists over the use of the 1992 AAMR
    definition, however. While the definition was intended to broaden the
    definition of MR so that more individuals would be eligible for
    services (Reiss, 1994; MacMillan et al., 1995), several researchers
    believe that the 1992 definition compromises the conceptual and
    psychometric integrity of the 1983 definition of MR (MacMillan et al.,
    1995). Prior to 1992, for example, the AAMR definition focused on
    deficits at each developmental stage, using a severity scale (similar
    to that used by the APA) to emphasize IQ scores and expected age-
    appropriate behaviors (AAMD, 1983). In 1992, however, the AAMR
    increased the possible upper IQ score to 75, set general adaptive
    behaviors as a criterion and developed a sub-classification system
    based on levels of needed supports (MacMillan et al., 1993). Critics of
    the new definition believe that setting the IQ score limit to 75 may
    result in a classification of MR for individuals who have skills
    similar to their peers without MR, and may lead to an over-
    classification of minorities as having MR. Further, reliance on IQ has
    been criticized because of the cultural biases inherent in this measure
    (Hobbs, 1975; Zigler et al., 1984). Additional concern revolves around
    the measurement of adaptive behaviors and needed supports, which are
    thought to be poorly defined and to ignore developmental factors,
    thereby increasing the potential for misclassification. Consequently,
    some authors believe that a sub-classification system of MR should rely
    on etiology rather than poorly measured levels of supports (MacMillan
    et al., 1993).
        The definitions of MR discussed thus far, however, ignore etiology.
    In contrast, Zigler and colleagues (1967; 1984; 1986; 1987a; 1991)
    argue that an appropriate classification of MR employs both IQ score
    and etiology of the retardation. Consequently, they suggest
    categorizing MR into cultural/familial and organic groups, based on the
    presence or absence of a known organic etiology. This two-group
    approach is one of the most well documented distinctions in the mental
    retardation literature over the last century.
        Cultural/familial MR refers to individuals with IQs of 50-70, who
    do not have any identifiable physiological or genetic deficit. Although
    individuals with cultural/familial MR have lower intelligence than
    individuals without MR, the stages of cognitive development do not vary
    between these two groups. Those with cultural/familial MR, however,
    cognitively develop at a slower rate and do not reach the same
    cognitive levels as the general population. Consequently, individuals
    with the same mental age (or cognitive ability), regardless of
    chronological age, should perform similarly on cognitive-linguistic
    tasks. Emotional and motivational factors, however, influence the
    performance of individuals, and may account for certain behavioral
    differences between those of the same mental age (Zigler, 1967; Zigler
    et al., 1984; Zigler and Hodapp, 1986; Zigler and Hodapp, 1991).
        In contrast, organic MR is attributable to an identifiable
    physiological deficit. Individuals in this group typically have IQ
    scores below 50, although individuals with IQ scores between 50 and 70
    also can be classified as having organic MR. The cognitive development
    of individuals in this group is generally not thought to be comparable
    to those either without MR or with cultural/familial MR. The behavior
    of individuals in this group, then, is primarily the result of their
    physiological deficit (Zigler, 1967; Zigler et al., 1984; Zigler and
    Hodapp, 1986; Zigler and Hodapp, 1991). Some researchers, in fact,
    believe that all individuals with MR should be classified in the
    organic group. As science advances, they argue, physiological deficits
    will be discovered even among those with no present known organic
    etiology (Knobloch and Pasamanick, 1961 in Zigler and Hodapp, 1986;
    Richardson, 1981 in Zigler and Hodapp, 1986).
        Even the two-group approach, however, may be too broad a
    classification system to adequately account for the heterogeneity of
    each group. While the cultural/familial group is thought to have at
    least 3 different subtypes (Zigler and Hodapp, 1986), there are
    hundreds of identified etiologies of organic MR (Lubs and Maes, 1977;
    Grossman, 1983). It is inaccurate, then, to view individuals with MR as
    fitting into one of two homogenous classes (Burack, 1990), particularly
    because many experts in the area embrace the theory of polygenic
    inheritance (for a description of the theory, see Zigler and Hodapp,
    1986).
        Although these different definitions of MR do overlap, and are
    therefore somewhat comparable, multiple classification systems can make
    comparisons across studies difficult. In addition, the consistency of
    MR classification has been further complicated by the use of imprecise
    labeling. In the U.S., for example, many individuals with mild MR have
    adopted the label ``learning disabled,'' in order to avoid the stigma
    associated with ``mental retardation'' (Palfrey, 1994). The label
    ``learning disabled,'' however, technically refers to individuals of
    normal intelligence who are not performing at their maximum ability
    level (AAMD, 1983). Moreover, in England, the term ``learning
    disabled'' is used to identify individuals with mental handicaps
    (Bhrolchain, 1989). This term, then, has become non-specific and
    includes individuals with a variety of conditions, including those both
    with and without MR. This type of imprecise labeling can be
    problematic, because it can lead to difficulties in conducting needs
    assessments and allocating services, as well as interpreting studies
    that use this classification.

    Non-Categorical Classification of Mental Retardation
        In addition to being defined inconsistently, MR is often grouped
    together with other conditions. For example, mental retardation is one
    of many conditions included in non-categorical classifications, such as
    ``disability,'' which encompass conditions and diseases of different
    etiologies. In general, this approach has been adopted because it
    focuses on the similar medical, behavioral and cognitive problems found
    across illnesses, classifying individuals together based on
    functioning, rather than diagnosis. In contrast, the categorical
    approach uses diagnostic labels that do not convey the variability of
    morbidity within specific diseases (Stein et al., 1993; Stein and
    Silver, 1999). Eligibility for Social Security Income (SSI), for
    instance, was previously based on categorical diagnoses. As a result,
    SSI was denied to those who did not meet severity criteria with a
    single diagnosis, ignoring the cumulative functional effects of many
    conditions (Stein et al., 1993). Thus, the non-categorical approach is
    particularly beneficial for individuals with comorbid conditions,
    because it increases their likelihood to be eligible for a range of
    services. Consequently, the non-categorical approach is widely used in
    legislative initiatives, such as recent education- and employment-
    related amendments (Stein et al., 1993), and in policy initiatives put
    forth by agencies such as the National Policy Center for Children with
    Special Health Care Needs (Ireys et al., 1999).
        Nevertheless, there are problems associated with the non-
    categorical approach. When different conditions are grouped together,
    it is difficult to determine the specific medical and social needs of
    an individual with a certain diagnosis. Disability, for example, is
    defined broadly to include several conditions, including MR,
    developmental disabilities, serious emotional disturbances, ongoing
    orthopedic disorders, genetic disabilities and chronic illnesses (Ireys
    et al., 1999). Since the needs associated with these different
    conditions vary greatly, using this term to represent any one of these
    groups gives very little information about the needs of an individual
    with a specific condition.

    Summary and Implications
        Because the definitions of MR used across research efforts vary,
    this report indicates the definition employed when describing study
    results. Although some research efforts focus on conditions such as
    Cerebral Palsy and Autism, these studies are not included in this
    review, since individuals with these conditions do not uniformly have
    MR. Data on individuals with Down Syndrome (the one condition for which
    MR is a criterion) however, are presented. Further, although
    individuals with MR are included within non-categorical
    classifications, such as developmental disabilities, utilizing these
    terms in research makes it difficult to conclude anything specific
    about MR. Thus, in this report, efforts were made to avoid studies
    employing non-categorical definitions.

                        PREVALENCE OF MENTAL RETARDATION

    Introduction
        As mentioned above, prevalence data are crucial to the allocation
    of funding and the development of services, as well as to the
    comparison of findings between different research efforts. The
    prevalence of mental retardation is affected by many factors, including
    the definition of MR, the population studied and advances in medical
    technology. As discussed in the previous section, the definition of MR
    is an integral part of the determination of MR prevalence in the
    population. In addition, the population studied influences the
    prevalence found and indicates how generalizable that count may be.
    Most research uses either population-based or service use-based
    (administrative) data. While many European countries maintain
    registries of individuals with MR (making population-based studies
    common in those countries), no such registry or comprehensive national
    survey exists in the U.S. One national survey of the U.S. population,
    the NHIS, did have one question regarding MR, but because of the low
    prevalence found in 1981, the question was dropped in 1988 (Boyle et
    al., 1994). In addition, in 1994, a supplement to the NHIS (NHIS-D) was
    employed to collect population-based data regarding disabilities. The
    definition of MR used in the NHIS-D, however, was not consistent with
    either the AAMR or the APA definition; rather, the NHIS-D
    classification focused on previously diagnosed MR, conditions
    frequently associated with MR, and functional limitations in learning.
    Further, although MR involves disabilities of development, individuals
    with MR did not necessarily meet the criteria (three or more functional
    limitations) to be classified with a developmental disability, as
    defined by Public Law 98-527, in the NHIS-D (Research and Training
    Center on Community Living and Institute on Community Integration,
    2000).
        Since 1990, the Survey of Income and Program Participation (SIPP),
    another U.S. population-based survey, has documented MR among those
    households randomly selected for participation. It does not, however,
    make a specific effort to sample households of individuals with MR or
    other disorders. As a result, given the low probability of identifying
    individuals with MR in a randomly selected population, the SIPP cannot
    be considered a comprehensive account of those with MR (U.S. Bureau of
    the Census, 1999). In addition, both the NHIS and the SIPP
    underestimate the prevalence of disabilities among children and adults,
    because individuals living in institutions or group homes are excluded
    from the surveys (U.S. Bureau of the Census, 1999). In contrast to many
    European studies, then, most research efforts in the U.S. do not use
    population-based samples; rather, they rely on the number of
    individuals who utilize special services to estimate the prevalence of
    MR in the overall population.
        Advances in medical technology have had a great impact on the
    prevalence of MR as well. Throughout the century, medicine's ability to
    treat the comorbid conditions of individuals with MR, and thus increase
    their survival time, has improved (Primrose 1984; Whitman et al.,
    1990). For example, individuals with Down Syndrome tend to suffer from
    thyroid and heart conditions, which can be better detected and treated
    today than in the past (U.S. Preventive Services Task Force, 1996;
    Saenz, 1999; Singer et al., 1995). Therefore, the increased life
    expectancy of these individuals results in a higher prevalence at any
    one point in time.
        Further, several factors potentially affect the number of
    individuals who are actually born with MR. The rise in prenatal care,
    increased genetic screening and improvements in neonatal testing, for
    example, tend to increase the likelihood that children are born
    healthy. In contrast, other factors, such as increased prenatal
    substance use, tend to counter-act these effects and increase the
    prevalence of MR (Grossman et al., 2000). In sum, it is difficult to
    predict how the synergy of these factors affects the ultimate
    prevalence of MR.

    U.S. Prevalence of Mental Retardation
        It is estimated that as many as 2.0-7.5 million Americans of all
    ages may have MR, and that 1 in 10 families are directly affected by
    mental retardation (President's Commission on Mental Retardation, 1997;
    Grossman et al., 2000). Many reports have suggested that the population
    prevalence of MR in the U.S. is as high as 3.0 percent (Tarjan et al.,
    1973; Zigler and Hodapp, 1986; President's Commission on Mental
    Retardation, 1997). A U.S. study using administrative data, however,
    found the prevalence among children to range from 0.3 percent to 3.1
    percent in different regions of the country, with a national average of
    1.1 percent (King et al., 1997). Similarly, the Metropolitan Atlanta
    Developmental Disabilities Surveillance Program, a population-based
    study which only used IQ score as the criterion for MR, found an
    overall prevalence of 0.9 percent among 3-10 year-old children (Boyle
    et al., 1996). Further, although the NHIS-D used its own definition of
    MR, it reported that .78 percent of the population had MR, with a
    prevalence of .45 percent for children 0-5 years, 2.0 percent for
    children 6-17 years, and .52 percent for individuals 18 years or older
    (Research and Training Center on Community Living and Institute on
    Community Integration, 2000).
        Further, because teachers are often the first to notice mild
    developmental problems, most identified mild MR is initially detected
    during school years. The Atlanta population-based study, for example,
    indicated that while the prevalence of mild or moderate MR was only 0.5
    percent for children 3-4 years of age, the prevalence rose to 1.2
    percent, when older, school-aged children were studied (Boyle et al.,
    1996). It has been suggested, however, that only 50 percent of children
    with MR are identified at a young age because the failure to adapt
    normally and grow intellectually may not become apparent until later in
    life. Early identification may be further hampered by the fact that
    most pediatricians do not generally use standardized instruments to
    detect developmental delays (Grossman et al., 2000). In addition,
    because of their high level of functioning, those with mild MR are
    often unknown to special services once they leave school, and so, as
    adults, these individuals may not be counted as having MR in studies
    using administrative data. Moreover, many diagnosed children do not
    meet criteria when tested later in life. This suggests that either
    childhood or adult diagnoses are not adequately evaluating adaptive
    functioning (Forness, 1972 in King et al., 1997), or that IQ scores and
    functioning may vary over time (Zigler et al., 1984; Zigler and Hodapp,
    1986; Loveland and Kelley, 1988 and Dykens et al., 1994 in King et al.,
    1997).
        The majority of individuals with MR have historically been
    classified as having mild, cultural/familial MR. In the Atlanta
    population-based study 0.84 percent of 10 year-olds had IQs between 50
    and 70 (mild MR), and 0.36 percent had IQs less than 50 (moderate to
    profound MR) (Yeargin-Allsopp et al., 1997). In addition, Boyle et al.
    (1996) reported that two-thirds of the children with MR in this study
    were classified as mild. Further, the prevalence and type of MR found
    in this study varied with race and gender, with Black males having
    percentages of mild, moderate and severe MR 3.1 times as high as those
    for White females. Percentages of profound MR (most likely organic),
    however, did not vary by race in this study (Boyle et al., 1996).
        Part of the variation in the U.S. reported prevalence of MR is
    clearly due to differences between research efforts. For example,
    researchers making extrapolations based on birth estimates may report a
    higher prevalence than the number of cases counted in studies using
    either population-based or administrative data (Tarjan et al., 1973).
    The results of these latter studies, however, consistently indicate a
    prevalence of 1.0 percent.

    International Prevalence of Mental Retardation
        In other developed countries, the prevalence of mild MR appears to
    be lower than it is in the U.S. Percentages of MR or mental handicap in
    Sweden, for instance, have been estimated to be between 0.3 percent and
    0.7 percent (Grunewald, 1979; Golding, 1982; Halldin, 1984, Zigler and
    Hodapp, 1986). Interestingly, although the prevalence of mild MR has
    been found to be lower in Sweden than in the U.S., the two countries
    have reported comparable percentages of severe MR (Zigler and Hodapp,
    1986). Sweden's low prevalence of mild MR may seem surprising, given
    that at least some of the Swedish studies use a higher IQ cutoff (<80)
    to define this condition. However, Sweden has few psychologists, and
    testing is not as widespread there as it is in the U.S. (Zigler et al.,
    1984). Additionally, Swedish prevalence estimates of MR are based on
    the subjective opinions of teachers and clinicians, who are reluctant
    to label mildly cognitively impaired children (Zigler, 1987b). Further,
    since Sweden keeps a registry of individuals with MR, many Swedish
    studies are population-based, which may lead to a more accurate
    population prevalence than that estimated in the U.S. In addition,
    Sweden is a welfare state, and has many programs available for those
    with mild MR. As a result, many of these individuals are cared for in
    the community, and may never even be thought of as having MR until
    their IQs (at least males) are formally tested for entry into military
    service (Zigler et al., 1984; Zigler and Hodapp, 1986; Zigler, 1987b).
    When estimates from the community are combined with estimates from
    armed forces testing, the prevalence estimates for MR increase to 2.21
    percent, similar to that found in other countries (Zigler, 1987b).
        Other developed countries also have registries of mental
    retardation, which makes population-based studies more feasible than in
    the U.S. The overall prevalence of moderate and severe MR, arrested
    development or severe abnormality among children and adults in England
    has been found to range between 0.3 percent and 0.5 percent (Wing,
    1971; Holt et al., 1973; Elliot et al., 1981; Goh et al., 1994). A
    study using a surveillance registry in British Columbia found the
    overall MR prevalence rate to be similar (0.4 percent), with 0.1
    percent mild, 0.1 percent moderate, 0.05 percent severe, 0.04 percent
    profound and 0.01 percent unspecified MR (Herbst and Baird, 1983). In
    Ireland, using an IQ cutoff of 50 (severe MR), the rate of MR among
    adults 20-29 was found to range from 0.4 to 0.6 percent (Mallon et al.,
    1991).
        In less developed countries, percentages of MR are generally found
    to be higher, from 1.6 percent-3.0 percent (Islam et al., 1993).
    However, several recent studies have found the prevalence of MR to be
    quite low. For example, in The People's Republic of China, the use of
    intelligence tests in several districts found a prevalence that ranged
    between 0.4 percent and 0.7 percent (Kuo-Tai, 1988). Similarly, a study
    in Cape Town, South Africa, using administrative data, found the
    prevalence of severe MR to be 0.3 percent (Finedlander et al., 1982),
    and a population-based study of prevalence in Bangladesh found a rate
    of 0.6 percent for severe MR and 1.4 percent for mild MR (Islam et al.,
    1993). Further, a study that went door-to-door in India, using the
    Binet-Simon scale to define MR as an IQ<80, has indicated a prevalence
    rate of 0.4 percent in the general population and 1.0 percent among
    children (Satapathy et al., 1985).

    Summary and Implications
        Most prevalence studies, then, utilize IQ alone to define MR. In
    the U.S., while the range of MR prevalence has been reported to be
    between 0.3 percent and 3.0 percent, most studies using administrative
    or population-based data have found a prevalence of 1.0 percent. In
    contrast, international studies, using population-based registries and
    somewhat different definitions of MR, report the prevalence to be less
    than 1.0 percent. The U.S. prevalence of severe MR, however, is
    comparable to that of other countries; in fact, some studies have found
    lower percentages of severe MR in the U.S. than in other countries.
    Since most mild or moderate MR is identified among school children in
    the U.S., the discrepancy in the prevalence of those conditions may due
    to international differences in school-based testing and services
    requirements (Palfrey, 1994), as well as mainstreaming practices.
    Further, the low prevalence of MR in some countries may be due to
    socio-cultural factors. In China, for example, there is a one child per
    family policy (Kane and Choi, 1999) and a strong preference for
    terminating pregnancies with genetic abnormalities (Mao and Wertz,
    1997), both of which may affect the number of children born with MR.
        These comparisons indicate that the international discrepancies in
    prevalence may, in part, be due to the different populations,
    definitions of MR, and methods of identification used in research
    studies. Moreover, cultural and political differences among countries
    may influence both the number of individuals with MR and the numbers
    that are counted in research studies. Despite these discrepancies,
    however, individuals with MR are present in all countries, and their
    needs, including their health needs, merit attention.

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    dilemma. Science. 1967;155:292-298.
        97. Zigler E, Balla D, Hodapp R. On the definition and
    classification of mental retardation. Am J Ment Def. 1984;89:215-230.
        98. Zigler E, Hodapp R. Understanding Mental Retardation. 1986.
        99. Zigler E. The Definition and Classification of Mental
    Retardation. Upsala J Med Sci. 1987a;Suppl.:1-10.
        100. Zigler E. Concluding Remarks to Section II. Upsala J Med Sci
    Supp. 1987b;44:38-40.
        101. Zigler E, Hodapp R. Behavioral functioning in individuals with
    mental retardation. Ann Rev Psychol. 1991;42:29-50.

     Chapter 2.--Physical Health Conditions Contributing to the Morbidity
              and Mortality of Individuals With Mental Retardation

                                  INTRODUCTION

        For the purpose of this report, physical health conditions refer to
    chronic conditions that are common causes of death (such as
    cardiovascular diseases, cancer, diabetes, lung diseases, and
    unintentional injuries), risk conditions related to these chronic
    diseases, and childhood conditions and prevention measures that
    influence the long-term health and functioning of individuals (such as
    otitis media, pediatric asthma, child maltreatment and immunizations).
    Other physical health conditions, such as ocular and oral health
    conditions, are not included in this definition, and will be discussed
    in separate chapters.
        Lacking large population-based studies, evidence documenting the
    prevalence of these physical health conditions among individuals with
    MR comes primarily from small community registries or administrative
    data from outpatient clinics or residential facilities. Since many
    individuals with MR do not receive services on a regular basis
    (Howells, 1986; Singer et al., 1986), however, studies using outpatient
    samples may underreport the prevalence of health conditions that do not
    always prompt medical interventions. Conversely, prevalence estimates
    from institutions may overreport the prevalence of certain health
    conditions, because those in hospitals or long-term residential
    settings are generally the most severely physically impaired and are
    likely to be monitored at regular intervals (Eyman et al., 1986).
        Prevalence estimates are also affected by the identification of
    symptoms, either by the individuals with MR or by the caregiver. Often
    limited in communication skills, individuals with MR rely on caregivers
    to identify symptoms and report them to providers. Providers, then,
    must detect clinical manifestations of disease among individuals who
    lack communication skills to provide descriptions of symptoms.
    Consequently, syndromes based largely on reported symptoms rather than
    physical signs or specific routinely administered tests may also be
    underidentified.

                            MORTALITY AND MORBIDITY

        Despite overall gains in life expectancy, gaps still exist between
    individuals with MR and individuals in the general population. In
    Western Europe and the United States, the overall life expectancy at
    birth is 74.0 to 76.5 years and life expectancy at 65 years is 81.7 to
    82.7 years (Hoyert et al., 1997; WHO, 1997). In contrast, individuals
    with mild or moderate MR have an average life expectancy at 45 of 66.1
    years, while those with severe MR have an average life expectancy at 45
    of 53.6 years. Thus, the life expectancy of individuals with MR
    decreases with increased severity of MR and increased severity of
    physical impairments (Janicki et al., 1999; Eyman et al., 1990; O'Brien
    et al., 1991; Eyman et al., 1993), suggesting that those with mild or
    moderate MR have different health trajectories than those with severe
    or profound MR.
        Further, life expectancy may be related to place of residence,
    although the results of the research are inconsistent. Hayden (1998)
    points out that some researchers have documented higher mortality rates
    among individuals with MR in institutions compared with those in the
    community, while others have suggested that individuals in the
    community have higher mortality rates (Strauss et al., 1998).
        Living longer than individuals with severe MR, those with mild or
    moderate MR are more likely to have age-related health conditions
    similar to the general population. With a few exceptions, the
    prevalence of physical health problems (including cardiovascular
    disease, cancer, cerebrovascular disease, lung conditions and diabetes)
    of individuals with MR is similar to that of the general population.
    This chapter will focus on the health conditions of adults and children
    with MR and specific health problems prevalent in individuals with Down
    Syndrome. The health problems selected for review were based on the
    leading causes of death in the U.S. population and the health
    priorities of Healthy People 2000 and Healthy People 2010 (U.S. DHHS
    1990, U.S. DHHS 2000a).
    Adult Health Conditions
        According to the National Center for Health Statistics (NCHS), the
    most common causes of death in the United States include cardiovascular
    diseases, malignant neoplasms or cancer, cerebrovascular diseases, lung
    diseases, diabetes and unintentional injuries (Hoyert et al., 1999).
    Not surprisingly, the U.S. has made the prevention and treatment of
    these conditions a priority in Healthy People 2000 and Healthy People
    2010 (U.S. DHHS 1990, U.S. DHHS 2000a). These same conditions also
    impair the health of individuals with MR. The most common causes of
    death among individuals with MR are cardiovascular diseases,
    respiratory illness and neoplastic conditions (Thase, 1982; Carter and
    Jancar, 1983; Dupont et al., 1987; O'Brien et al., 1991; Hayden 1998;
    Strauss et al., 1998; Janicki et al., 1999; Chaney and Eyman, 2000).
    This section will review the prevalence of these conditions among
    adults with MR.

                Cardiovascular Disease

        Cardiovascular disease is the leading cause of death in the U.S.
    and internationally, accounting for 31.4 percent of deaths in the U.S.
    general population and 30.9 percent of deaths in World Health
    Organization (WHO) member states (Hoyert et al., 1999; Turner and Moss,
    1996; WHO, 1999). Manifestations of cardiovascular disease, including
    myocardial infarction, angina pectoris and sudden death, affect nearly
    59.7 million individuals or 21.9 percent of the U.S. population each
    year (U.S. DHHS, 2000b). Consequently, Healthy People 2000 and Healthy
    People 2010 have heart disease as a priority area for health
    improvement in the U.S. (U.S. DHHS, 1990; U.S. DHHS 2000a).
        As individuals with MR age, they suffer the same risk of
    cardiovascular disease as the general population. Cardiovascular
    disease is one of the most common causes of death among individuals
    with MR, accounting for 10.3 percent to 50.0 percent of deaths
    depending on the population studied (Carter and Jancar, 1983; Dupont et
    al., 1987; O'Brien et al., 1991). Prevalence estimates of
    cardiovascular disease in individuals with mild or moderate MR living
    in the community range from 6.7 percent to 55.2 percent, with
    individuals being at increased risk of disease as they age (Minihan,
    1986; Minihan and Dean 1990; Janicki and Jacobson, 1986 and Badry et
    al., 1989 in Day and Jancar, 1994; Beange et al., 1995; Hand and Reid,
    1996; van Schronjenstein Lantman-de Valk et al., 1997; Cooper 1998;
    Kapell et al., 1998). In addition, individuals with Down Syndrome are
    three to four times more likely to have cardiac conditions compared
    with individuals without Down Syndrome (Thase 1982; van Schronjenstein
    Lantman-de Valk et al., 1997; Kapell et al., 1998).
        The prevalence estimates of cardiovascular disease, however, are
    lower among individuals with profound MR living in institutions
    (O'Brien et al., 1991; Turner and Moss, 1996). For example, O'Brien et
    al. (1991) found that 30 percent of all deaths among individuals with
    profound MR were related to heart disease compared with 44.4 percent
    among individuals with mild to moderate MR. If the lower prevalence is,
    in fact, real, it may be related to either lifestyle factors that
    influence blood pressure, cholesterol levels, obesity, cigarette
    smoking and physical activity (Pitetti and Campbell, 1991; Turner and
    Moss, 1996), or the fact that among the institutionalized, those who
    live longer are healthier. Alternatively, the difference may be due to
    incomplete measurement of the conditions under study. For example,
    Ziring et al. (1988) pointed out that 8.9 percent of those recently
    deinstitutionalized had previously undetected cardiac conditions,
    suggesting that cardiac conditions may be underdiagnosed among
    individuals in institutions.

                Cancer

        The second leading cause of death in the U.S. and the United
    Kingdom (U.K.) is cancer, accounting for 23.3 percent of deaths in the
    U.S. and 25.0 percent of deaths in the U.K. (Hoyert et al., 1999;
    Turner and Moss 1996). Cancer deaths are primarily attributable to lung
    cancer (49.5 per 100,000), breast cancer (25.6 per 100,000 women),
    prostate cancer (25.4 per 100,000 men) and colorectal cancer (17.6 per
    100,000) (Ries et al., 2000). In the U.S., nearly 40 percent of
    individuals are diagnosed with cancer during their lifetime (U.S. DHHS,
    1998). The most commonly diagnosed cancers are prostate (149.7 per
    100,000 men), breast (109.7 per 100,000 women), lung (55.2 per 100,000)
    and colorectal (43.9 per 100,000) (Ries et al., 2000). Because cancer
    affects so many individuals in the U.S., the Surgeon General made early
    detection, treatment and prevention of cancer a national priority in
    Healthy People 2000 and Healthy People 2010 (U.S. DHHS, 1990, U.S.
    DHHS, 2000a).
        Cancer is also a health concern among individuals with MR. Cancer
    is among the most common causes of death among individuals with MR,
    with estimates ranging from 7.4 percent to 34.0 percent depending on
    the population studied (Carter and Jancar, 1983; Dupont et al., 1987).
    In fact, after adjusting for age, the prevalence of most cancers among
    individuals with MR living in the community is thought to be similar to
    that found in the general population. For example, in a study of the
    prevalence of cancer among older community residents with MR in the
    Netherlands, Evenhuis (1997) found cancer prevalence estimates similar
    to those in the Dutch population. He found that 22.9 percent of
    individuals with MR were diagnosed with cancer, including breast,
    prostate, lung, gastrointestinal and skin cancers.
        One exception to these similar trends is among individuals with
    Down Syndrome (Jancar and Jancar, 1977; Turner and Moss 1996; Scholl et
    al., 1982; Baird and Sadovnick, 1988; Franceschi et al, 1991; Hasle et
    al., 2000). For example, in a recent study examining the prevalence of
    leukemia and solid tumors in the Danish Cancer Registry, Hasle et al.
    (2000) found that children with Down Syndrome are more likely to have
    leukemia compared with children of the same age in the general
    population (children ages 0-4 years, standardized incidence ratio:
    56.4; children ages 5-19 years, standardized incidence ratio: 7.7).
    Individuals with Down Syndrome, however, were half as likely to have
    solid tumors compared with the general population, even after adjusting
    for age.
        In contrast to community-based studies, in one institution in
    England, Cooke (1997) found that 13.6 percent of all deaths were due to
    cancer, an overall prevalence rate that was lower than the 26 percent
    found in the general population in England during the same time period.
    Although age- adjusted estimates were not presented, the prevalence of
    cancer among individuals with MR declined during a time when longevity
    increased in this population, suggesting that decreased life expectancy
    did not explain the lower prevalence of cancer among individuals with
    MR. Another important finding from this study was that the types of
    cancer varied between individuals with MR in the institution and those
    in the general population. In contrast to the leading cancer deaths in
    the general population, they found very few deaths due to lung, breast
    or prostate cancer; rather this study found a high proportion of
    gastrointestinal cancer among individuals with MR (55 percent in the MR
    population versus 26 percent in the general population). The high
    prevalence of gastrointestinal cancer was thought to be related to
    gastrointestinal reflux and chronic constipation that is common among
    individuals with MR living in institutions. Others have also documented
    a high prevalence of gastrointestinal cancer among individuals with MR
    in institutions (Jancar and Jancar, 1977).
        The prevalence of cancer is also associated with severity of MR. In
    the U.S., O'Brien et al. (1991) found that among those individuals
    living in one southeastern residential facility, those with mild or
    moderate MR were more likely to die of cancer than individuals with
    profound MR. Additional studies examining the prevalence of cancer in
    the U.S. are limited. One study that examined mortality in 14
    individuals with MR in the community provided anecdotal evidence that
    one of the 14 individuals died of undetected cervical cancer, a
    potentially avoidable cause of death (Kastner et al., 1993).

                Cerebrovascular Disease

        Cerebrovascular disease is a common term to describe ischemic and
    hemorrhagic strokes or transient ischemic attacks that result in a lack
    of blood flow to the brain. This disease is the third leading cause of
    death in the U.S. (Hoyert et al., 1999), with an estimated 731,000
    incident (first time) strokes each year (Sacco et al., 1999). It is one
    of the most prevalent conditions among individuals 65 and older in the
    U.S. (NSA, 1999; U.S. DHHS, 2000a). In fact, more than 4 million or 4.3
    percent of Americans 45 years and older are living with the effects of
    stroke (NSA, 1999). Like cardiovascular disease, the detection,
    prevention and treatment of cerebrovascular disease has been a national
    priority in Healthy People 2000 and Healthy People 2010 (U.S. DHHS,
    1990; U.S. DHHS, 2000a).
        Since the population of individuals with MR is aging, the risk of
    cerebrovascular disease, like that of cardiovascular disease and
    cancer, is increasing in this population (Turner and Moss, 1996). Few
    studies, however, have examined the prevalence of stroke among
    individuals with MR. In a community-based study in England, Cooper
    (1998) documented a cerebrovascular disease prevalence of 9.0 percent
    among individuals with MR 65 years and older, which she noted to be
    greater than that of the general population (although general
    population estimates were not provided). No individuals with MR under
    65 years of age who participated in the study had a cerebrovascular
    disease. In another community-based study of 70+ year olds in the
    Netherlands, Evenhuis (1997) found that 2.8 percent of individuals with
    MR reported a history of stroke, a prevalence estimate similar to that
    in the general population. Although it is unclear whether individuals
    with MR are more likely to have a stroke compared with the general
    population, it is clear that the aging MR population faces a serious
    risk of cerebrovascular disease.
                Chronic Obstructive Pulmonary Disease (COPD) and Other
                        Respiratory Conditions
        Chronic obstructive pulmonary disease (COPD) is used to describe
    two respiratory conditions, chronic bronchitis and emphysema. Both
    conditions cause a shortness of breath and coughing that gets worse
    over time. COPD and other respiratory conditions, such as pneumonia and
    influenza, are the fourth and sixth leading causes of death in the
    U.S., respectively. COPD accounts for 4.7 percent of all deaths and
    pneumonia and influenza account for 3.7 percent of all deaths in the
    U.S. (Hoyert et al., 1999). According to the U.S. National Heart, Lung
    and Blood Institutes, over 13.5 million Americans report having COPD
    (5.1 percent of the U.S. population) (U.S. DHHS, 1995). Pneumonia and
    influenza have seasonal variations reaching their peak prevalence in
    winter. They are more commonly reported among the elderly and
    individuals with chronic health problems than among young, healthy
    individuals (CDC, 2000). In the year 2000, the U.S. Centers for Disease
    Control and Prevention reported a prevalence of 33 percent of
    individuals infected with influenza (CDC, 2000). Western European
    studies find a similar prevalence of COPD, pneumonia and influenza
    (Lung and Asthma Information Agency, 1995; WHO, 1999).
        Most of the reviewed studies of individuals with MR report
    prevalence estimates of general respiratory conditions, inclusive of
    COPD and respiratory infections, although a few research efforts have
    focused on COPD or other specific respiratory conditions. Increased
    prevalence of respiratory conditions, and infections in particular,
    have been shown to be associated with increased age, institutional
    residence, severity of MR and severity of physical impairment. For
    example, studies conducted in the community and in institutions have
    shown that the probability of having a respiratory condition increases
    linearly with age (Janicki and Jacobson, 1986 in Day and Jancar, 1994);
    Day, 1987 in Day and Jancar, 1994).
        Additionally, there is a higher prevalence of respiratory
    conditions among individuals 45 years and older living in institutions
    (1.1 percent to 33 percent) (Nelson and Crocker, 1978; Rubin, 1987;
    Day, 1987 in Day and Jancar, 1994; Minihan, 1986; van Schronjenstein
    Lantman-de Valk et al., 1997; Evenhuis, 1997), compared with those
    living in the community (1.5 percent to 5.1 percent) (Janicki and
    Jacobson, 1986 in Day and Jancar, 1994). Specifically, individuals with
    MR living in institutions are highly susceptible to respiratory
    infections. In fact, nearly one-half of all deaths in institutions are
    accounted for by pneumonia and influenza, with a disproportionate
    number of individuals having severe or profound MR (Polednak, 1975;
    O'Brien et al., 1991; Turner and Moss, 1996).
        Differences between the prevalence of individuals living in the
    community and the prevalence of individuals with severe MR living in
    institutions are most likely related to the severity of both MR and
    physical impairments, as well as the associated limitations in physical
    activity. Among individuals living in residential facilities, for
    example, individuals with moderate or severe MR have been found to be
    more likely to have COPD compared with individuals with mild MR (van
    Schronjenstein Lantman-de Valk et al., 1997). Further, individuals
    living in institutions are more likely to be immobile and/or have
    difficulties swallowing and, thus, are more susceptible to respiratory
    infections (Turner and Moss, 1996; Kennedy et al., 1997). In addition,
    as a result of their congregate living arrangement, individuals with
    severe MR have greater exposure to infectious agents.
        Individuals with severe MR are not the only subpopulation of
    individuals with MR to suffer from high rates of respiratory
    infections. Researchers have also suggested that young individuals with
    Down Syndrome are susceptible to such infections (Baird and Sadovnick,
    1988), because of accelerated immunologic aging (Nespoli et al., 1993)
    and physical malformations that may hinder drainage of sinuses (Saenz,
    1999).

                Diabetes Mellitus

        Diabetes mellitus is a disease in which the body has an inadequate
    supply of insulin, a hormone needed to metabolize food into energy.
    Obesity is a major risk factor of diabetes (CDC, 1998), and individuals
    with this disease are at higher risk of heart disease, stroke, high
    blood pressure, blindness, kidney disease, amputations and dental
    disease (CDC, 1998). Diabetes is the seventh leading cause of death in
    the U.S. (Hoyert et al., 1999), accounting for 2.7 percent of all
    deaths. Additionally, over 15.7 million individuals in the U.S. (5.9
    percent of the population) and over 1.4 million in the U.K. (3.0
    percent of the population) have diabetes mellitus (CDC, 1998; Diabetes
    UK, 2000). With a high prevalence of the disease in the U.S., Healthy
    People 2000and Healthy People 2010 have made preventing and reducing
    diabetes a priority in the nation's health (U.S. DHHS, 1990; U.S. DHHS,
    2000a).
        Although not a major cause of death among individuals with MR,
    diabetes and its associated risks are important health concerns.
    Individuals with MR have similar prevalence estimates of diabetes as
    individuals in the general population. In community studies in the U.S.
    and in Western Europe, the prevalence of diabetes among individuals
    with MR has been found to be 1.6 percent to 9.1 percent, with those
    over 65 having a two-fold increase in the risk of diabetes compared
    with those less than 65 years (van Schronjenstein Lantman-de Valk et
    al., 1997; Cooper, 1998; Kapell et al., 1998). Further, studies
    examining the prevalence of diabetes among those with MR residing in
    institutions found a lower prevalence than that found in community-
    based studies of individuals with MR (.8 percent-2.8 percent) (Hogg et
    al., 1988 in Day and Jancar, 1994; Minihan and Dean, 1990).
        In addition, compared with the general population, individuals with
    Down Syndrome have an increased probability of being obese (Cronk et
    al., 1985 in Fujiura et al., 1997; Bell and Bhate, 1992). Perhaps as a
    result, there is some evidence to suggest that individuals with Down
    Syndrome have a higher probability of having diabetes and of having the
    disease at a younger age than individuals without Down Syndrome (Burch
    and Milunsky, 1969; Farquhar, 1969; Van Goor et al., 1997; Kapell et
    al., 1998).

                Unintentional Injuries

        Unintentional injuries (e.g., motor-vehicle, drowning, residential
    fires, poison consumption, falls) are the leading cause of death among
    young people (ages 1-34 years) and the fourth overall leading cause of
    death in the U.S., accounting for 4.1 percent of all deaths (Hoyert et
    al., 1999). The WHO also reports that 6.5 percent of deaths in WHO
    member states are attributed to unintentional injuries (WHO, 1999).
    Additionally, the NCHS reports that 31 million visits to the emergency
    room result from unintentional injuries each year (Burt and Fingerhut,
    1998). The risk of injury is so great that most individuals will
    experience an unintentional injury at some point in their life. As a
    result of the high prevalence of injury, the Surgeon General has made
    reduction in mortality and morbidity due to unintentional injuries a
    national priority in Healthy People 2000 and Healthy People 2010 (U.S.
    DHHS, 1990, U.S. DHHS, 2000a).
        Individuals with MR are at least as, if not more, likely to die
    from an unintentional injury compared with the general population. In a
    British Columbia study of the causes of death among individuals with
    Down Syndrome aged 30 and younger, Baird and Sadovnick (1988) reported
    that injuries occurred in the Down Syndrome population as frequently as
    in the general population (prevalence estimates ranging from <.1
    percent to 8.2 percent). In a population-based study of deaths in
    Denmark, however, Dupont et al. (1987) found that individuals with mild
    or moderate MR aged 15-34 years were at increased risk of death due to
    accidents compared with the general population of the same age.
        Although no studies could be found examining non-fatal accidents
    and injuries among adults with MR in the population, a few studies have
    examined sports-related injuries at Special Olympics, Inc. (SOI)
    events. Perlman (1994) summarizes the prevalence of sports-related
    injuries from SOI events in 12 states and the previous four world
    games, with a total of 701,988 participants. He reported an overall
    injury claim prevalence of .05 percent, with estimates ranging from .01
    percent to .21 percent depending on the sporting event, although
    comparison to the general population is not possible since there are no
    comparable data for individuals without MR. McCormick et al. (1990)
    found a slightly higher prevalence of sports-related injuries at the
    Special Olympics competition in Galveston, Texas, with 3.5 percent of
    777 athletes requiring medical care for sports-related injuries. Thus,
    like the general population, unintentional injuries and accidents are
    an important health concern among those with MR.

    Health Behaviors
        The prevalence of certain health behaviors, such as poor
    nutritional habits leading to obesity, decreased physical activity and
    smoking, has become a major concern to policy makers and researchers
    interested in the overall health of the nation. Obesity, physical
    activity and tobacco consumption are primary modifiable risk factors
    for most chronic diseases, and, as such, are listed among the leading
    health indicators for health in Healthy People 2000 and Healthy People
    2010 (U.S. DHHS, 2000a).

                Obesity

        Obesity is associated with cardiovascular disease, breast, prostate
    and colon cancers, cerebrovascular disease and diabetes (National Task
    Force, 2000). According to Healthy People 2010, the number of
    overweight individuals has risen in the past four decades, with 11
    percent of children ages 6 to 19 years being overweight or obese and 23
    percent of adults being obese between 1988-1994 (U.S. DHHS, 2000a).
        Obesity is more common among individuals with MR than in the
    general population, with overall prevalence estimates ranging from 29.5
    percent to 50.5 percent (Simila and Niskanen, 1991; Bell and Bhate,
    1992, Rimmer et al., 1993; Rubin et al., 1998). In fact, in a
    convenience sample of select participants, Touger-Decker and Matheson
    (2000) found that more than 66.0 percent of children with MR who
    participated in the New Jersey 2000 Special Olympic Games were
    overweight. The prevalence of obesity in the MR population has been
    found to vary with living situation and etiology of MR. Individuals
    living at home have the highest prevalence of obesity (55.3 percent)
    followed by those living in a group home (less than 16 residents) (40.9
    percent), while individuals living in institutions (more than 100
    residents) have the lowest prevalence of obesity (16.5 percent) (Rimmer
    et al., 1993; Prasher, 1995). In addition, individuals with Down
    Syndrome are 1.5 times more likely to be obese compared with
    individuals with other etiologies of MR (Bell and Bhate, 1992). With
    the majority of individuals with MR living in the community, it is
    imperative that obesity be considered a major health problem facing
    individuals with MR.

                Physical Activity

        Regular physical fitness is an important health maintenance
    activity that is associated with decreased body fat, decreased risk of
    cardiovascular disease and diabetes and enhanced psychological well-
    being (U.S. DHHS, 2000a). The U.S. Surgeon General has made regular
    physical activity a national health priority in Healthy People 2000 and
    Healthy People 2010(U.S. DHHS, 1990, U.S. DHHS, 2000a). Among adults in
    the general population, only 15 percent participate in regular physical
    activity of 30 minutes per day and 40 percent engage in any leisure
    physical activity (U.S. DHHS, 2000a).
        Like individuals in the general population, individuals with MR are
    unlikely to participate in physical activities, either because they
    lack the motivation or the opportunity to be involved in fitness
    programs (Rimmer, 2000). Few studies, however, exist on the prevalence
    of individuals with MR participating in routine physical activity. One
    study examined the leisure activities of 207 adults with MR living at
    home in Dublin, Ireland. In this study, McConkey et al. (1981) found
    that most individuals with MR ages 15-64 participated in activities
    that were sedentary, such as watching television (73.4 percent) and
    listening to the radio or records (41.1 percent). The prevalence of
    individuals with MR participating in outdoor sports ranged from 21.1
    percent to 47.5 percent, with those more physically and mentally
    impaired being less likely to participate in outdoor sports. Although
    comparison to the general population is difficult given the lack of
    age-stratified information presented in the study, McConkey et al.
    (1981) reported the prevalence of physical exercise among non-retarded
    children 16-24 years as 44.0 percent. No information was presented on
    the prevalence of participation in outdoor sports. In a more recent
    U.K. health screening study of 120 individuals with MR living in the
    community, Martin et al. (1997) found that 48.2 percent had done some
    physical activity over the past four weeks compared with 93.5 percent
    in the general population.
        More research has been done on cardiovascular fitness among
    individuals with MR (Beasley, 1982; Pitetti and Campbell 1991; Pitetti
    et al., 1993; Fernhall, 1993; Fernhall et al. 1998; Lancioni and
    O'Reilly, 1998). Cardiovascular fitness, an important aspect of
    physical activity, is related to the ability to perform light to
    moderate levels of physical labor. Fernall (1993), in a review of
    physical fitness among individuals with MR, reports that adults with MR
    have lower cardiovascular fitness levels than the general population,
    suggesting that individuals with MR may lead more sedentary lifestyles.
    Others have also found that individuals with MR have lower
    cardiovascular fitness levels compared with those in the general
    population (Pitetti and Campbell; 1991).
        SOI has recognized the need for individuals with MR to have the
    opportunity to participate in physical activities, including team and
    individual sports. SOI provides year-round opportunities for
    individuals with MR to participate in sports training and athletic
    competition, with one of the explicit goals being development of
    physical fitness (SOI, 2000). Besides the primary athletic competition
    program, SOI also has developed basic fitness guides and training
    materials for SOI coaches to raise awareness of proper diet and
    nutrition among athletes. Further, these guides encourage athletes to
    participate in daily exercise not only during SOI programs but also in
    their own home (Todd, personal communication). Additionally, SOI has
    developed four specific programs to encourage individuals at increased
    risk for sedentary lifestyles to participate in physical activities.
    These programs include a motor activities training program for
    individuals with severe MR, a unified sports program integrating
    individuals with mild MR with their peers without MR, a play activities
    program for young children with MR ages 6 and 7 years and an athlete
    leadership training program (Sharkey and Hunt, 1999).

                Smoking

        Cigarette smoking is a major preventable cause of disease and death
    in the U.S. and internationally (U.S. DHHS, 2000a; WHO, 2000). Smoking
    is a major risk factor for most of the major health conditions
    discussed above, including cardiovascular disease, cancer,
    cerebrovascular disease and lung disease. In 1997, 24 percent of adults
    in the U.S. reported smoking cigarettes (U.S. DHHS, 2000a). As a
    result, the Surgeon General and the WHO has made reduction in tobacco
    consumption a national and international health priority (U.S. DHHS,
    2000a; WHO, 2000).
        Prevalence estimates of tobacco consumption by individuals with MR
    vary by living condition and severity of MR. In a community-based study
    in the southern area of Melbourne, Australia, Tracy and Hosken (1997)
    found that 36 percent of individuals with MR sampled indicated that
    they smoked cigarettes compared with 26 percent in the general
    population. In a clinic-based study conducted in New Jersey, Hymowitz
    et al. (1997) found that 30 percent of 64 adults with mild MR reported
    that they were current smokers, which is only slightly higher than the
    smoking prevalence estimate for the U.S. general population. Burtner et
    al. (1995) examined the consumption of tobacco in a Florida residential
    facility for individuals with MR. With a prevalence estimate similar to
    that of the general population in 1995, they found that 20.5 percent of
    individuals with mild or moderate MR used tobacco products, including
    cigarettes, chewing tobacco, cigar and snuff. In comparison, only 4.3
    percent of individuals with severe or profound MR used tobacco
    products. In a study of cardiovascular risk factors, Rimmer et al.
    (1994) examined the prevalence of smoking 10 cigarettes a day among
    individuals with MR living in a residential facility, living in a group
    home and living at home with family. They found that individuals with
    MR in the group home had the highest prevalence of smoking (20.8
    percent of men and 6.7 percent of women) compared to individuals with
    MR living at home (6.9 percent of men and 2.1 percent of women) and
    individuals with MR living in an institution (3.8 percent of men, 0.0
    percent of women). These studies suggest that individuals living in
    institutions and individuals with more severe MR are less likely to
    smoke, while individuals living in group homes and individuals with
    less severe MR have smoking habits similar to the general population.
        The prevalence of smoking also has been studied in select SOI
    populations, with prevalence estimates below those observed in
    community-based and institution-based studies. Among 704 Special
    Olympic athletes who participated in the 1996 New Jersey Special
    Olympic Special Smiles program, 7.0 percent reported that they
    currently smoked (Feldman et al., 1997). A similar smoking prevalence
    of 4.3 percent was found among Special Olympic athletes who
    participated in the 1997 San Francisco Bay Area Special Olympics
    Special Smiles program (White et al., 1998). There is some evidence,
    however, that smoking status may not be accurately measured by self-
    report among individuals with MR. In a recent study at the 2000 New
    Jersey Special Olympic Games, 70 SOI atheletes aged 18 to 78 were asked
    to identify their smoking status and to complete a carbon monoxide (CO)
    test of smoking status. Among those who identified themselves as
    smokers, 27 percent had negative CO test results. Among those who
    identified themselves as non-smokers, 18 percent had positive CO test
    results (Giniger, 2000). Thus, although some studies have shown a lower
    prevalence of smoking among select populations of individuals with MR,
    the self-reported data from these studies may not adequately reflect
    the true prevalence of the population.
        Many of the studies reported here suggest that individuals with
    mild or moderate MR and individuals living in group homes are as likely
    to consume tobacco products as individuals in the general population.
    Therefore, smoking education and prevention efforts are as essential
    for this population as it is in the general population.
    Child Health Conditions and Prevention Measures
        Otits media, asthma, child maltreatment and immunizations, were put
    forth as research priorities in the children's health arena by the
    Agency for Health Care Policy and Research, now called the Agency for
    Healthcare Research and Quality (U.S. DHHS, 1997a). Although these
    conditions and prevention measures are areas of concern among children
    in the general population, and, thus, among children with MR, little
    information is available on the prevalence and long-term consequences
    of these illnesses and behaviors among children with MR.

                Otitis Media

        Young children are particularly susceptible to otitis media, or
    middle ear infections, because they have developing immune systems that
    have difficulty fighting infections, immature eustachian tubes that
    prevent optimal fluid drainage, and may have enlarged adenoids that
    interfere with the eustachian tube opening. Otitis media not only can
    cause severe pain, but, if left untreated, also can cause permanent
    hearing loss (U.S. DHHS, 1997b). Additionally, recurrent otitis media
    can have a negative impact on speech and language development,
    cognitive achievement and social and emotional development (Evenuis and
    Nagtzaam, 1997). Otitis media is one of the most prevalent childhood
    conditions, affecting 75 percent of children under the age of 3 years
    at least once (U.S. DHHS, 1997b). An estimated 17 percent to 29 percent
    of infants have one episode of acute otitis media and an estimated 26
    percent of preschool children in the United States have recurrent
    otitis media (Lanphear et al., 1997).
        The prevalence of otitis media among children with MR has not been
    adequately explored. There are some reasons to believe that children
    with Down Syndrome are at increased risk of middle ear infections due
    to midfacial malformations and increased susceptibility to infections
    (Saenz, 1999). Although not focused specifically on otitis media, one
    study of 293 residents of an English institution found that 40 percent
    of individuals with Down Syndrome and 29 percent of individuals with MR
    without Down Syndrome had ear, nose and throat conditions (Donague and
    Abbas, 1972). Dahle and McCollister (1986) compared the prevalence of
    ear problems in children with Down Syndrome to children with other
    forms of MR. They found that hearing impairment and infections were
    more prevalent among children with Down Syndrome. Given the potential
    impact of otitis media on development (Whiteman et al., 1986), early
    identification of middle ear infections among children with MR, who are
    already at risk for delays, is important.

                Pediatric Asthma

        Asthma is characterized by recurrent breathing problems brought on
    by inflammation of the lining of the lungs. The severity of asthma, as
    with most conditions, varies by individual. While some individuals are
    severely limited in their activities by the condition, others have only
    periodic symptoms of the disease. The negative consequences of asthma,
    however, can be avoided with appropriate disease management. Since
    1980, the prevalence of asthma has been on the rise in all age, race
    and sex groups. In 1980, 4.2 percent of children were affected by
    asthma, but by 1994 the prevalence of asthma rose to 7.4 percent of
    children, a 74 percent increase over a 24-year period (U.S. DHHS,
    2000c).
        Little research has been done on the prevalence of asthma among
    children with MR. In a study of health status and needs of children
    with MR, Ackland and Wade (1995) reported the prevalence of medical
    conditions of 249 students in Victoria, Australia. With a prevalence
    estimate similar to that in the U.S. population of children, asthma was
    diagnosed among 6.4 percent of the children with MR.
        No research exists on the negative consequences of asthma (such as
    reluctance to participate in physical activities) or on asthma
    management among children with MR, although one British study examined
    deaths from asthma in individuals less than 45 years old with MR.
    Reviewing death certificates of all residents in Southmead Health
    Authority, Stuart et al. (1990) found a high prevalence of asthma
    mortality among 5-44 year olds, with a morality rate twice that of the
    general U.K. population. Making confidential inquiries into the factors
    associated with the deaths, they found that several factors contributed
    to the high mortality rate, including communication difficulties
    between the patient and caregiver or provider, and delays in providers
    responding to an asthma attack. Given that disease management may be
    more difficult with children with MR who have limited communication
    skills compared with their peers without MR, increased attention should
    be given to self and caregiver management of this common childhood
    disease.

                Child Maltreatment

        Maltreatment is an all too common childhood condition in the U.S.,
    with approximately 984,000 children being victims of substantiated or
    indicated abuse or neglect in 1997 (U.S. DHHS, 1999). The most common
    form of maltreatment is neglect (54 percent of victims), followed by
    physical abuse (24 percent), sexual abuse (13 percent), emotional
    maltreatment (6 percent) and medical neglect (2 percent). It is
    estimated that 1,196 of nearly one million victims of child
    maltreatment died from abuse or neglect in 1997 (U.S. DHHS, 1999).
    These estimates are based on reports by child protective services,
    which only account for those select cases that are known to agencies,
    and, therefore, may under-represent the true prevalence of child
    maltreatment.
        Children with MR also face serious consequences from abuse and
    neglect, although there is limited research on overall prevalence
    estimates of maltreatment in this population. As Waldman et al. (1999)
    point out, children who are abused are over four times as likely to
    have MR compared with non-abused children (Sullivan and Knutson, 1994
    in Mansell et al., 1998). The causal direction in the association of
    child maltreatment and MR, however, is not clear. Physical abuse and
    neglect may result in MR (due to brain damage) or individuals with MR
    may be more likely to be abused and neglected.
        In a study of 445 intellectually handicapped children in Castilla-
    Leon, Spain, Verdugo et al. (1995) interviewed professionals about
    signs of abuse and/or neglect. They found that 11.5 percent of children
    with an intellectual handicap aged 0-19 years had some evidence of
    maltreatment compared with 1.5 percent of children with no intellectual
    handicap. Among those who had evidence of maltreatment, 92 percent
    experienced physical neglect, 82 percent experienced emotional neglect,
    65 percent experienced emotional abuse and 31 percent experienced
    physical abuse and 2 percent experience sexual abuse.
        In addition, sexual abuse appears to be more prevalent among
    children with MR compared with children in the general population.
    Although not strictly focused on children with MR, Crosse et al. (1993)
    reported that children with disabilities are 1.8 times more likely to
    experience sexual abuse compared with children without disabilities (in
    Mansell et al., 1998). Other researchers have also found an increased
    prevalence of sexual abuse among children with disabilities (Sobsey and
    Varnhagen, 1989; Sobsey and Doe 1991; Sobsey 1994 and Valenti-Hein and
    Schwartz, 1995 in Reynolds, 1997).
        Several researchers have speculated about the reasons for the
    increased prevalence of abuse among individuals with MR, and have cited
    stress and strain on the family, unrealized parental expectations of
    the child, emotional and social isolation of caregivers, children's
    inability to report abusive experiences, children's dependency on
    caregivers and lack of awareness about abusive situations as potential
    contributors (Solomons, 1979; Reynolds 1997; Waldman et al., 1999).
    Although there may exist a detection bias in who is identified as a
    victim, it is clear that individuals with MR are at least as, if not
    more, likely to experience maltreatment compared with their peers
    without MR.

                Immunizations

        Vaccines which prevent infectious diseases and death are considered
    one of the most important public health achievements of the 20th
    century (U.S. DHHS, 2000a). As such, vaccinations of children has
    remained a national health initiative in both Healthy People 2000 and
    Healthy People 2010 (U.S. DHHS, 1990; U.S. DHHS, 2000a). In 1998, 73
    percent of children in the U.S. received routine vaccinations,
    including immunizations against Hepatitis B, diphtheria, tetanus,
    pertussis, polio, measles, mumps, rubella and Haemophilus influenzae
    type b (U.S. DHHS, 2000a; American Academy of Pediatrics, 2000).
        Information on the immunization status for children with MR is
    sparse. In an early study of the medical care received by previously
    institutionalized children, Schor et al. (1981) found that 77.0 percent
    had up to date immunizations compared with 91.0 percent of children in
    the general population. Another study has examined the prevalence of
    routine immunizations among children with MR living in the community.
    McLaughlin et al. (1977) examined the immunization records of 134
    children in a large northwestern school district, a sample population
    that may be generalizable only to the enrolled school population of
    children with MR and not to the institutionalized MR population. They
    found no statistical difference in the prevalence of completed
    immunizations between the 67 children with MR and the 67
    age-, sex- and socioeconomic status-matched peers without MR (91
    percent versus 81 percent, respectively).
        Several studies have been conducted examining the prevalence and
    effectiveness of the Hepatitis B vaccine among children and adults with
    MR (Vajro et al, 1992; Arulrajan et al., 1992; Vellinga et al., 1999).
    These studies suggest that individuals with MR, specifically those with
    Down Syndrome and those residing in institutions, are at increased risk
    of Hepatitis B infection (Vellinga et al., 1999). Vajro et al. (1992)
    examined the seroconversion rate (the antibody response to a vaccine,
    which indicates that the vaccine was effective and that an individual
    is immune to the disease) of preschool children with Down Syndrome
    compared with children with other forms of MR. Despite prior evidence
    suggesting that individuals with Down Syndrome are more likely to lack
    an anti-Hepatitis B response compared with general population controls,
    they found that children in both groups had a complete seroconversion.
    Given that children with MR, in particular those with Down Syndrome and
    those in institutions, are at increased risk of infection,
    administration of routine vaccines in this population is imperative.
    Health Conditions Among Those with Down's Syndrome and Rationale for

            Increased Prevalence

        Certain health conditions are particularly prevalent among
    individuals with Down Syndrome and warrant further discussion. For
    example, conditions such as orthopedic anomalies, congenital heart
    defects and thyroid disease, although relatively infrequent in the
    general population, can be life-threatening conditions for individuals
    with Down Syndrome.

                Atlantoaxial Instability

        Individuals with Down Syndrome have many orthopedic anomalies, but
    few are as life threatening as atlantoaxial instability. Atlantoaxial
    instability is a laxity in the movement between the first and second
    cervical vertebrae and, thus, increases the risk of spinal cord injury
    (Msall, 1999). It occurs in 10 percent to 40 percent of individuals
    with Down Syndrome, depending on the child's age and definition of
    instability (Tishler and Martel, 1965 and Alvarez and Rubin, 1986 in
    Cremers et al., 1993; Cope and Olson, 1987; Rubin, 1987; Pueschel and
    Scola, 1987; Pueschel, 1998). Despite the relatively high prevalence of
    atlantoaxial instability, there is no information about the prevalence
    of screening among individuals with MR, which may be due in part to the
    controversy surrounding the safety of the radiograph screening process
    and the questionable diagnostic value of the procedure (Pueschel,
    1998). Therefore, effective and safe health screening procedures for
    asymptomatic atlantoaxial instability is an important consideration, in
    need of further exploration. Some researchers and providers, in fact,
    believe that atlantoaxial instability may limit an individual's ability
    to participate safely in sports (Saenz, 1999; Msall, 1999), while
    others have found restriction of activity based on the possibility of
    increased instability to be unnecessary for most children with Down
    Syndrome (Cremers et al., 1993; Morton et al. 1995).

                Congenital Heart Defects

        Children with Down Syndrome are significantly more likely to have a
    congenital heart defect than individuals in the general population.
    Approximately 40 percent to 60 percent of children with Down Syndrome
    have a heart defect (Spicer, 1984; Pueschel, 1990; Martin, 1997)
    compared with 0.8 percent in the general population (Mitchell et al.,
    1971; March of Dimes, 1999). Due to advancements in medical technology,
    however, survival for children with heart defects has dramatically
    improved (March of Dimes, 1999). Consequently, some physicians
    recommend that infants with Down Syndrome have electrocardiogram and
    echocardiogram screenings so that those in need can be referred to a
    specialist for medical management (Pueschel, 1990; Saenz, 1999). No
    studies were found that determine the screening rate of congenital
    cardiac conditions among individuals with Down Syndrome, however.

                Thyroid Disease

        Diseases of the thyroid, the organ that regulates the body's
    metabolism, can lead to blood pressure disturbances, fatigue, changes
    in appetite, weight disturbances, difficulty with concentration and
    changes in gastrointestinal regulation (Thyroid Society, 2000). Thyroid
    disease affects nearly 20 million or 1.4 percent of Americans (Thyroid
    Society, 2000). Compared with the general population, individuals with
    Down Syndrome have an increased probability of having a thyroid
    disorder, including hypothyroidism or hyperthyroidism, with prevalence
    estimates ranging from 3 percent to 50 percent depending on the
    population studied and criteria for diagnosis (Rubin, 1987; Pueschel,
    1990; Dinani and Carpenter, 1990; Ali et al., 1999). Unlike individuals
    in the general population, who are at increased risk of thyroid disease
    with increased age, individuals with Down Syndrome are more likely to
    have thyroid disease at an earlier age. Those with Down Syndrome are
    thought to be at increased risk of thyroid disease because they often
    have autoimmune abnormalities (Kennedy et al., 1992; Ali et al., 1999)
    and accelerated immunologic aging (Nespoli et al., 1993).
        Only one study could be found that examined the screening rate of
    thyroid disease among children with Down Syndrome. In an interview with
    Australian parents who attended a conference on Down syndrome,
    Selikowitz (1992) found that 64.7 percent of 132 school-aged children
    with Down Syndrome had been tested for hypothyroidism within the past
    18 months. Even within this highly motivated and, presumably, informed
    population, then, the screening rate of thyroid disease was relatively
    poor. Because thyroid disease is so common among children with Down
    Syndrome, regular screening and early detection of thyroid conditions
    is essential (Murdoch et al., 1977 in Martin, 1997; Noble et al.,
    2000).

                            SUMMARY AND IMPLICATIONS

        Similar to individuals in the general population, individuals with
    MR are at risk for chronic medical conditions, including cardiovascular
    disease, cancer, cerebrovascular disease, lung conditions and diabetes.
    Individuals with MR are also susceptible to the primary risk factors of
    chronic diseases including obesity, decreased physical activity and
    smoking. As in the general population, the risk of disease among those
    with MR increases with age. In addition, the disease prevalence varies
    by severity of MR. Individuals with mild or moderate MR are more likely
    to have cardiovascular disease and diabetes compared with individuals
    with severe or profound MR, while those with severe or profound MR
    living in institutions are more likely to have respiratory conditions
    compared with individuals with mild or moderate MR.
        Further, one group of individuals with MR, those with Down
    Syndrome, who have autoimmune abnormalities, are at increased risk of
    cardiovascular disease, leukemia, respiratory disease and diabetes. Not
    surprisingly, the risk factors associated with these diseases are more
    prevalent among those with Down Syndrome, namely obesity and decreased
    physical activity. Besides the common adult health conditions,
    individuals with Down Syndrome are also more likely to have diseases
    that are less common among individuals in the general population,
    including atlantoaxial instability, congenital cardiac conditions and
    thyroid disease.
        Although common childhood conditions, such as otitis media, asthma
    and child abuse, have also been reported among children with MR, very
    little information exists about the prevalence or manifestations of
    these conditions in children with MR. The research that does exist
    suggests that children with MR are at increased risk of otitis media
    and of being maltreated.
        Despite these increased risks of health conditions, however, little
    research exists on effective prevention programs and treatment
    strategies for this group of children and adults. One example of this
    lack of attention is the paucity of information on the immunization
    status of children with MR, one important public health measure. In
    addition, as will be discussed in a subsequent chapter, although
    individuals with MR have similar physical health problems as those in
    the general population, they are less likely to receive adequate
    medical services compared with those in the general population.

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       Chapter 3.--Mental Health Disorders Among Individuals With Mental
                                  Retardation

                                  INTRODUCTION

        Individuals with MR, like their peers without MR, also suffer from
    considerable morbidity due to mental health problems. Since MR is a
    diagnosable mental health condition, the presence of both MR and
    another mental health disorder is known as dual diagnosis. Similar to
    the prevalence of MR and physical health conditions among those with
    MR, the prevalence of dual diagnosis varies with the populations
    studied (AACAP, 1999).
        Although some large scale, population-based research exists, most
    studies of dual diagnosis are conducted with small sample sizes and use
    administrative data (e.g. hospital admission data) (Ineichen, 1984;
    Borthwick-Duffy and Eyman, 1990; Szymanski, 1994). The use of
    administrative data, however, may under- or over-estimate the
    prevalence of dual diagnosis in the population, depending on the
    sampling strategy used. For example, since many individuals with mild
    MR do not use services in the mental health care system (Borthwick-
    Duffy and Eyman, 1990), the reported dual diagnosis prevalence based on
    administrative data may under-represent the true prevalence of MR and
    mental health problems (Borthwick-Duffy and Eyman, 1990, King et al.,
    1997). Conversely, since those with psychiatric impairments are more
    likely to use services than those without impairments, these
    administrative estimates may over- estimate the prevalence of dual
    diagnosis. Research studying individuals referred to psychiatric
    services, for instance, may over-represent the population prevalence of
    individuals with mental health disorders (Borthwick-Duffy, 1994).
        In addition to methodological constraints regarding sampling
    strategies, research on mental health disorders among individuals with
    MR also suffers from inconsistent diagnostic methods and difficulties
    diagnosing these conditions in this population. Nevertheless, the
    research presented in this chapter indicates a high prevalence of dual
    diagnosis.

         DIAGNOSIS OF MENTAL HEALTH DISORDERS AMONG INDIVIDUALS WITH MR

        In addition to sampling strategies, the methods used to diagnose
    mental health disorders influences the prevalence of such conditions
    among individuals with MR (i.e., dual diagnosis). While some research
    uses diagnoses noted in medical records (chart reviews), others use
    structured diagnostic assessments to identify dual diagnosis. When
    chart reviews are used, however, the prevalence of dual diagnosis has
    been found to be much lower than the prevalence as determined by the
    use of specific diagnostic tools (Reiss, 1990).
        Further, while some researchers study mental health conditions as
    defined in the APA's Diagnostic and Statistical Manual of Mental
    Disorders, others use different scales and interview instruments for
    diagnosis (Crews et al., 1994). In addition, some professionals prefer
    the term ``psychiatric illness,'' while others use the term
    ``behavioral disorder'' to indicate general mental health conditions
    (Szymanski 1994; Emerson et al, 1999; Moss, 1999). In this report, the
    term ``mental health disorder'' will be used to encompass both
    psychiatric conditions and behavioral problems.
        In addition to the methodological issues involved in documenting
    dual diagnosis, there are two main challenges to the process of actual
    diagnosis of mental health disorders among individuals with MR. First,
    providers are often reluctant to diagnose mental health conditions
    among those with MR and second, there are often difficulties involved
    in identifying symptoms in this population. Historically, mental health
    conditions rarely were diagnosed in individuals with MR because many
    behavioral and emotional problems were thought to be either
    characteristic of MR (Eaton and Menolascino,1982; Zigler and Burack,
    1989) or due to institutionalization (Day, 1993; Moss et al., 1997).
        Although today it is recognized that mental health conditions exist
    in individuals with MR, and are separate from MR (Eaton and
    Menolascino, 1982; Borthwick-Duffy and Eyman, 1990), the presence of MR
    often diminishes the diagnostic significance of behavior that would
    otherwise be considered indicative of a mental health disorder. In
    other words, symptoms of a mental health disorder are often attributed
    to the MR, rather than evaluated as a potentially separate condition.
    Reiss et al. (1992), who termed this phenomenon overshadowing, provide
    an example of this in research conducted among psychiatrists evaluating
    hypothetical cases. Clinicians in this study were more likely to give
    the diagnosis of mental health disorder to an individual without MR
    than to a patient with the same case description plus the diagnosis of
    MR.
        Symptoms of mental health conditions among individuals with MR,
    however, may be difficult to identify. Although, in principle, the
    diagnosis of mental health problems in individuals with MR is similar
    to that of individuals without MR (Tuiner and Verhoeven, 1993),
    diagnosis in this population can actually be quite difficult (Gabriel,
    1994; Borthwick-Duffy and Eyman, 1990; Sturmey, 1999; Moss, 1999;
    Weissblatt, 1994; Moss et al., 1997; Prosser et al., 1998; AACAP,
    1999), particularly among individuals with severe MR (Reiss and
    Valenti-Hein, 1994). Because of cognitive limitations, different
    developmental trajectories and limitations in lifestyle, individuals
    with MR will often present with different symptoms of mental health
    disorders, compared with those without MR (Reiss, 1982; Menolascino et
    al., 1986).
        The most difficult conditions to diagnose among individuals with
    severe MR are psychosis and cognitive disorders (Weissblatt, 1994). For
    example, it is often hard to distinguish the effects of prolonged
    institutional care from symptoms of schizophrenia among those with
    severe MR (Ineichen, 1984). Further, severe cognitive limitations
    (known asbaseline exaggeration), are common among those with severe MR,
    and make the identification of additional cognitive disorders
    challenging, if not impossible (Sovner, 1986 in Crews et al., 1994;
    Sturmey, 1999). Those with severe MR also may present with bland
    symptomatology, a phenomenon know as psychosocial masking, that makes
    diagnosis difficult as well (Sovner, 1986 in Crews et al., 1994;
    Sturmey, 1999).
        In addition, those with severe MR may have limited communication
    skills, (referred to as intellectual distortion[Sovner, 1986 in Crews
    et al., 1994; Sturmey, 1999]) or maladaptive behaviors (referred to
    ascognitive disintegration[Sovner, 1986 in Crews et al., 1994; Sturmey,
    1999]) due to their disability, and are often passive and compliant.
    Any of these conditions or behaviors may obscure or confound symptoms,
    making diagnosis difficult (Reiss et al., 1982; Gabriel, 1994;
    Borthwick-Duffy and Eyman, 1990; Crews et al., 1994; Prosser et al.,
    1998). For example, those with severe MR are frequently non-verbal,
    making conditions such as obsessive compulsive disorder difficult to
    diagnose (AACAP, 1999). As a result, diagnoses may depend on
    caregivers' abilities to identify symptoms and clinicians' observations
    (Brothwick-Duffy and Eyman, 1990; AACAP, 1999), rather than patients'
    accounts.
        Since older children, adolescents and adults with mild MR are less
    likely to have trouble communicating, the process of diagnosis is much
    less difficult among these groups than among younger children or those
    with severe MR (Reiss and Valenti-Hein, 1994). As a result, individuals
    with mild MR may be more likely to be given a mental health diagnosis
    than those with more severe MR, although it is unclear whether those
    with more severe MR are less likely to have such problems or merely
    less likely to be identified with a problem (Borthwick-Duffy and Eyman,
    1990; Crews et al., 1994).
        Given these difficulties and the limited training that most
    clinicians have in working with individuals with MR, many providers
    prefer not to work with these patients. Consequently, when clinicians
    do treat individuals with MR, they are generally not experienced enough
    to make accurate diagnoses (Moss, 1999). An Australian study of
    psychiatrists, for instance, found that 75 percent of those surveyed
    felt that they hadn't received sufficient training in dual diagnosis,
    and 39 percent preferred not to treat the dually diagnosed (Lennox and
    Chaplin, 1996).

                     RATIONALE FOR MENTAL HEALTH MORBIDITY

        Despite these diagnostic difficulties and ambiguities, higher rates
    of mental health impairments have been found among individuals with MR
    than in the general population (Zigler and Burack, 1989; Dosen, 1993;
    Moss, 1994; Moss et al., 1997; Embregts, 2000; Reiss, 1990). As Zigler
    and Burack (1989) point out, individuals with MR are capable of
    experiencing the same disappointments and difficulties as those without
    MR. Due to their increased sensitivity, however, an episode of
    ``failure'' may affect an individual with MR more than it would someone
    in the general population (Zigler and Burack, 1989).
        Further, low intelligence may actually increase the risk of mental
    health problems for those who are aware of their limitations, as such a
    recognition may lead to self-concept problems and depressive reactions
    (Reiss et al., 1982; Crews et al., 1994). Similarly, parental and peer
    rejection, negative social relationships, limited supports and exposure
    to degrading situations may all make functioning in the community
    difficult (Siperstein et al., 1997, Eaton et al., 1982; Reiss and
    Benson, 1984; Taylor et al., 1987; Borthwick-Duffy and Eyman, 1990),
    and increase the likelihood of having mental health problems (Gabriel,
    1994). Since individuals with mild or moderate MR are more likely to be
    living with their families and to be aware of their limitations, these
    individuals may be at higher risk than those with severe MR. Children
    with moderate MR, in fact, have been shown to be more likely to be
    rejected by parents than individuals with profound MR (Eaton et al.,
    1982; Eaton and Menolascino, 1982), and children with mild MR have been
    found to be more rejected by peers and express more dissatisfaction and
    anxiety about peer relations than those without MR (Taylor et al.,
    1987). As a result, both adults and children with mild or moderate MR
    may be at a higher risk of reacting to stressful life events with an
    affective disorder than those with severe or profound MR.
        In addition, mental health conditions may be more common among
    individuals with MR due to biological risk factors (Reiss et al.,
    1993). Those with MR, for example, may suffer from more genetic
    abnormalities and brain damage than the general population (Moss et
    al., 1997), which may be associated with a higher prevalence of mental
    health conditions. For example, central nervous system damage, which is
    common among those with MR, may increase the vulnerability of
    individuals to develop other mental health disorders (Eaton and
    Menolascino, 1982).

                     PREVALENCE OF MENTAL HEALTH MORBIDITY

    General Mental Health Morbidity
        Mental health disorders in individuals with MR have been estimated
    to occur at a rate 3-6 times greater than that in the general
    population (Eaton and Menolascino, 1982; Walters et al., 1995; Maino,
    1996). Research studies among individuals without MR have reported a
    prevalence of mental health disorders ranging from 7 percent-26 percent
    (Bergeron et al., 1992; Surgeon General, 1999). The prevalence of dual
    diagnosis reported in both the U.S. and international literatures,
    however, is extremely inconsistent. In fact, a review of the literature
    done by Borthwick-Duffy (1994) indicates that studies using different
    definitions and sampling strategies estimate the prevalence of dual
    diagnosis to range from less than 10 percent to more than 80 percent.
    Lower prevalence estimates, however, are obtained when client records
    are examined, while higher prevalence estimates are documented from
    clinical evaluations. Reiss (1990), for instance, found the prevalence
    of mental disorders in a community-based day program to vary from 12
    percent, using chart reviews alone, to 39 percent using screening
    surveys and 60 percent using clinical evaluations.
        Among adults, the Surgeon General (1999) reports that 21 percent of
    those in the general population suffer from a mental health condition.
    Similarly, research using administrative data in the U.S. has found
    percentages of dual diagnosis to range from 17 percent to 36 percent
    (Reiss, 1990; Jacobson, 1982; Iverson and Fox, 1989 in Borthwick-Duffy,
    1994). Further, European studies estimate the prevalence of dual
    diagnosis to range from 12 percent of individuals with severe MR, using
    administrative data (Kushlick, 1975 in Borthwick-Duffy, 1994), to 27
    percent, using population- based data (Lund, 1985 in Borthwick-Duffy,
    1994). Given that much of the literature indicates a higher prevalence
    of specific mental health disorders among individuals with MR, this
    reported similarity in prevalence estimates between adults with and
    without MR may be due to the methodologies used or the specific
    conditions studied in these research efforts.
        Among children, 5 percent-21 percent of the general population have
    been reported to have mental health conditions (Bergeron et al., 1992;
    Szymanski, 1994; Costello 1999; Friedman et al., 1998; Surgeon General,
    1999). Conversely, studies using administrative data in the U.S. have
    found the prevalence of dual diagnosis to range from 14 percent to 60
    percent (Jacobson, 1982; Menaloscino, 1965 and Chess and Hassibi, 1970
    in Borthwick-Duffy, 1994). As described above, research using
    populations referred to psychiatric services report a higher prevalence
    of dual diagnosis (87 percent) (Phillips and Williams, 1975 in
    Borthwick-Duffy, 1994).
        Further, studies using administrative data in Europe have found a
    prevalence of dual diagnosis among children similar to that reported in
    the U.S., ranging from 9 percent to 43 percent (Kushlick, 1975,
    Haracopos and Kelstrup, 1978 and McQueen et al., 1987 in Borthwick-
    Duffy, 1994). In addition, while Rutter et al.'s (1970) British
    population-based study reported a prevalence of mental health disorders
    of about 7 percent among children without MR (Borthwick- Duffy, 1994),
    European population-based studies report a prevalence of childhood dual
    diagnosis of 30 percent to 64 percent (Rutter, 1970 in Borthwick-Duffy,
    1994; Gillberg et al., 1986).

    Mental Health Morbidity and Severity of MR
        As with other health conditions described in this report, the
    prevalence of diagnosed mental health disorders tends to vary with
    severity of MR. Many studies have found that the prevalence of mental
    health disorders is highest among individuals with mild MR (Iverson and
    Fox, 1989 in Borthwick-Duffy, 1994; Borthwick-Duffy and Eyman, 1990;
    Jacobson, 1982). For example, administrative data from California
    indicates that 16 percent of individuals with mild MR are
    psychiatrically diagnosed, while only 5.7 percent of those with severe
    or profound MR have a dual diagnosis (Borthwick-Duffy and Eyman, 1990).
    These findings are consistent with the notions that MR is easier to
    diagnose among those with mild or moderate MR, and that because of
    their living situations and awareness, those with mild or moderate MR
    are more prone to mental health disorders than individuals with severe
    or profound MR.
        International studies, however, indicate a different association.
    Many population studies in Europe have found that individuals with more
    severe MR have a higher prevalence of dual diagnosis (Rutter, 1970 in
    Borthwick-Duffy; Gillberg et al, 1986; Gostason, 1985 in Borthwick-
    Duffy, 1994; Goh and Holland, 1994). For example, one European study
    reported prevalence estimates of such disorders to be 60 percent among
    those with an IQ<60, and just over 20 percent among those with an IQ
    between 60 and 69 (Birch et al., 1970).
        The discrepancy between American and European research has several
    potential explanations. First, the inconsistent finding may suggest
    that there is no association between severity of MR and dual diagnosis
    (McCaren and Bryson, 1987 in Borthwick-Duffy, 1994). Second, the
    inconsistencies may be due to research methodology. Studies based on
    administrative data found more dual diagnosis among individuals with
    mild MR, while studies using population-based data reported a higher
    prevalence among those with severe MR. This may be because those with
    severe MR and a mental health condition may be more likely to be
    institutionalized, and thus less likely to be captured in
    administrative data.
        Third, studies that examined specific conditions indicate that the
    association may vary with condition (Corbett et al., 1975 and Koller,
    1983 in Borthwick-Duffy, 1994; Reid, 1980). For example, based on a
    survey of individuals referred to an outpatient clinic for those with
    developmental disabilities, Reiss (1982) reports that 20 percent of
    individuals with mild MR were diagnosed with depression, compared with
    none of those with severe MR. As discussed above, individuals with mild
    MR may have difficulties ``fitting in'' with their peers and feel
    unaccepted and thus unsatisfied with their lives, which may lead to
    depression. Those with severe MR, however, may not be as aware of their
    social situation, and thus may not be as depressed.
        This same study, however, found schizophrenic symptomatology to be
    more frequently diagnosed among those with severe MR (46.7 percent)
    than among individuals with mild MR (16.7 percent). Although a
    psychotic diagnosis is more difficult among individuals with severe MR
    than those with mild MR, individuals with severe MR are more likely to
    live in institutions, where experienced mental health providers are
    more accessible than they are in community settings. In fact, those
    living in institutional care have been reported to have a higher
    prevalence of dual diagnosis (18.6 percent) than individuals living
    with their families (5.1 percent) (Borthwick-Duffy and Eyman, 1990).
    The higher prevalence among those with severe MR in Europe, then, may
    be due to the distribution of individuals among residential settings,
    with individuals in institutions receiving more comprehensive
    diagnostic assessments than those living in the community.

                              SPECIFIC CONDITIONS

    Adult Mental Health Conditions
        The types of mental health disorders found in those with MR are
    similar to those found in their peers without MR (Reiss et al., 1982;
    Eaton and Menolascino, 1982). Among adults in the general population,
    the most common mental health disorders consist of anxiety disorders,
    affective disorders and substance abuse. Although schizophrenia is not
    very prevalent, it merits attention due to its severity and persistence
    (Surgeon General, 1999). The most common disorders cited among adults
    with MR and intellectual disabilities in both the U.S. and Australia
    are anxiety disorders, psychotic disorders and personality disorders
    (Reiss, 1990; Lennox and Chaplin, 1996; Moss et al., 1997). As
    discussed above, affective disorders are important, albeit less common,
    conditions among individuals with MR, and thus warrant attention here
    as well. Further, individuals with Down Syndrome report a high
    prevalence of dementia. In contrast, there has been a much lower
    prevalence of substance abuse reported among individuals with MR than
    in the general population (Reiss, 1990; Moss et al., 1997). The
    prevalence of the above mentioned conditions will be presented in this
    chapter.

                Anxiety Disorders

        Although earlier research studied the condition ``neurotic
    disorder,'' this term, which closely resembles the presently used term
    ``anxiety disorder,'' is no longer used in the mental health
    literature. For the purposes of this report, ``anxiety disorder'' will
    be used to refer to both anxiety and neurotic disorders.
        Anxiety disorders usually present as clinically significant
    unpleasant emotions, such as fear, dread and alarm, in the presence of
    stressors. The Surgeon General (1999) reports that between 13.1 percent
    and 18.7 percent of the general population suffers from an anxiety
    disorder. In contrast, Reiss (1990) found that 31.4 percent of
    individuals at a community-based day program for individuals with MR
    suffered from an anxiety problem, and that for 6.4 percent, anxiety was
    a major problem.
        Although the prevalence of anxiety among individuals with MR is
    higher than that in the general population, anxiety disorders have been
    found to be difficult to diagnose in individuals with severe MR. In
    fact, although Day (1983) reports a prevalence of anxiety disorders of
    28 percent among individuals with MR, only 4 percent of these cases
    were among moderately and 0 percent were among severely mentally
    handicapped individuals (Fraser and Nolan, 1994).
        Obsessive-compulsive disorder (OCD), one of many anxiety disorders,
    is characterized by recurrent obsessions or compulsions that are severe
    enough to be time-consuming or cause marked distress or significant
    impairment (APA, 1994). This condition generally manifests itself in
    adolescents or young adulthood (Surgeon General, 1999); its prevalence
    in the general population is estimated to range from 1 percent-2.4
    percent (Surgeon General, 1999).
        Among individuals with MR, the prevalence of OCD has been reported
    to be 3.5 percent (Fraser and Nolan, 1994). OCD may present atypically
    among individuals with MR, with hand washing, self-injury, sterotypic
    movements and anxiety dominating the symptomatology (King, 1993 in
    Verhoeven and Tuiner 1999; Stavrakaki, 1999). In contrast, the most
    common symptoms in the general population include concern over order,
    symmetry or contamination with germs or bodily fluids, doubts, or loss
    of control of violent or sexual impulses (Surgeon General, 1999).
        Anxiety is important to understand, as severe cases can be violent
    and disruptive, and interfere with functioning (Stavrakaki, 1999).
    Acting out may be particularly problematic among individuals with MR,
    as a result of the frustrations associated with an inability to
    verbally communicate (Fraser and Nolan, 1994). While some believe that
    this condition is associated with the same pathology that causes the
    intellectual disability, others associate anxiety disorders with trauma
    and abuse (Stavrakaki, 1999).

                Affective Disorders

        Affective disorders include states of abnormally low mood
    (depressive disorders) and states of abnormally elevated mood (manic
    states) (Clarke, 1999). In the general population, the one-year
    prevalence of affective disorders is reported to be 7 percent (Surgeon
    General, 1999). In comparison, the point prevalence among
    institutionalized individuals with MR has been reported to be 8.9
    percent (Crews et al, 1994). As discussed above, this percentage among
    institutionalized individuals with MR may reflect the low prevalence of
    depression diagnosed among those with severe MR. Crews et al. (1994),
    however, did find that over half of those with dual diagnosis (57
    percent) suffer from an affective disorder. The most common mood
    disorders include major depression and bipolar disorder (Surgeon
    General, 1999).
        Depression is an affective disorder characterized by low mood and
    decreased energy (Clarke, 1999). In the general population, the
    prevalence has been estimated to be between 5 percent and 25 percent
    (Stavrakaki, 1999; Kessler et al., 1996). Among adults with MR,
    depressed mood is the most common psychological symptom (Laman and
    Reiss, 1987; Fraser and Nolan, 1994). The administratively determined
    prevalence of diagnosed depression among individuals with MR, however,
    has been estimated only to be between 3 percent and 6 percent (Reiss,
    1990). In fact, among individuals with mild MR receiving disability
    benefits from New York State, 6.2 percent were found to have depressed
    mood (Laman and Reiss, 1987). Although these percentages may seem low
    compared with the general population prevalence, they may underestimate
    the true prevalence of depression in the population with MR because
    they are derived from service-based data. Further, experts in the field
    believe depression to be underdiagnosed among those with MR (Reiss,
    1994), due in large part to an atypical presentation, including
    aggressive behavior, self-injury, psychomotor agitation and irritable
    mood (Meins, 1995 in Verhoeven and Tuinier, 1999).
        The causes of depression among individuals with MR are thought to
    be the same as among those in the general population, and include
    biological and genetic factors, as well as stressful life events, which
    may be numerous in this population (Stavrakaki, 1999). In addition,
    depression is often associated with the low levels of social support
    and poor social skills often experienced by individuals with MR
    (Schloss, 1982 in Benson et al., 1985; Reiss and Benson, 1983; Laman
    and Reiss, 1987). The impact of depression on individuals with MR is
    significant, as it has been shown to be associated with aggressive
    behavior, anger, irritability, antisocial behavior and conduct problems
    (Laman and Reiss, 1987).
        Bipolar disorder consists of manic behavior or the combination of
    both mania and depression, and is not as common as depression. The
    Surgeon General Report (1999), in fact, reports about 1.7 percent of
    the general population (age 18 to 54) to have a bipolar disorder. Among
    individuals with MR, bipolar disorder is rarely reported. This may be
    due to the atypical symptomatology, namely perplexity, lability and
    irritability, associated with bipolar disorder in this population. In
    fact, whether this symptomatology should be characterized in this
    domain is a matter of debate (Verhoeven and Tuinier, 1999).

                Psychotic Disorders

        Psychotic disorders have been defined as disturbances of
    perceptions and thought processes (Surgeon General, 1999). While the
    Surgeon General (1999) estimates the prevalence of nonaffective
    psychosis in the general population to be 0.2 percent, Reiss (1990)
    found a prevalence of psychosis among individuals with MR attending a
    community day program to be 5.8 percent.
        Schizophrenia, one type of psychotic disorder, is characterized by
    distortions in thinking and perception, and inappropriate or flat mood
    states (Clarke, 1999). In general, schizophrenia is believed to occur
    in only 1.0 percent of the general population, compared with 3.0
    percent of the population with MR (Clarke, 1999; Weissblatt, 1994;
    Fraser and Nolan, 1994; Surgeon General, 1999). Using administrative
    data, however, Eaton and Menolascino (1982) found the prevalence of
    schizophrenia to be 21 percent, and Reiss (1982) reported it to be 30.3
    percent, among adults with MR.
        In the past, stereotypic behaviors seen in individuals with severe
    MR were thought to be indications of schizophrenia (Hayman, 1939). Due
    to the degree of language skills necessary to diagnose schizophrenia,
    however, this view is no longer accepted. In fact, as described above,
    schizophrenia is currently rarely diagnosed among individuals with
    severe MR, and some do not believe that it is even possible to make
    such a diagnosis among individuals in this group (Reid, 1993). Rather,
    a less specific diagnosis of psychotic disorder, not otherwise
    specified, is often made among individuals with severe MR (AACAP,
    1999).

                Personality Disorders

        Personality disorders consist of long-term problems in adjustment
    (Reiss et al., 1993). The Surgeon General (1999) reports an anti-social
    personality prevalence of 2.1 percent among the general population, and
    Kassen et al. (1999) report that 23.6 percent of their community sample
    of young adults were diagnosed with a personality disorder.
        Although some debate exists as to whether personality disorders can
    be observed among individuals with low mental age (such as children or
    those with MR) (Reiss, 1994), these disorders have been cited as some
    of the most common psychiatric diagnoses among individuals with MR
    (Day, 1985 in Fraser and Nolan, 1994; Emerson et al., 1999). Reid and
    Ballinger (1987), for example, found that among individuals in a
    hospital for the mild/moderately handicapped, 56 percent had abnormal
    personalities and 22 percent suffered from personality disorders
    (Fraser and Nolan, 1994). Similarly, Duncan et al. (1936) found 33
    percent of institutionalized individuals with MR to have a personality
    disorder, and Eaton and Menaloscino (1982) reported that 27.1 percent
    of individuals at a community-based program had one of these
    conditions.

                Dementia

        Individuals with MR are now surviving long enough to be at risk for
    age-associated conditions such as dementia of the Alzheimer type
    (Tuinier and Verhoeven, 1993). Adults with Down Syndrome, for example,
    experience a higher rate of dementia at a relatively earlier age than
    those without Down Syndrome (Janicki and Dalton, 2000). In fact, most
    individuals with Down Syndrome who live past 35 years show Alzheimer-
    like neuropathology (Holland, 1994).

                Substance Abuse

        Substance use has not been found to be as common among individuals
    with MR as in the general population (Koller et al., 1982 and
    MacEachron, 1979 in Edgerton, 1986). The general population prevalences
    for illicit drug use and alcohol use have been reported to be 11.9
    percent and 66.4 percent, respectively (SAMSHA, 1998). In contrast, of
    the 205 participants at a community- based day program for individuals
    with MR, Reiss (1990) found that no individuals suffered from alcohol
    or drug abuse, and Glick and Zigler (1995) reported that 3.5 percent of
    112 psychiatric inpatients with mild MR were substance abusers. In
    addition, Edgerton (1986) reported that among four samples of adults
    with MR living in a variety of community settings, individuals were
    less likely to use alcohol or other drugs than a comparison group of
    individuals without MR. This is somewhat surprising, since studies in
    both the U.S. and the U.K. have found large numbers of
    deinstitutionalized individuals with other mental health disorders, who
    may face the same adaptation problems as those with MR, to be substance
    users (Arce et al., 1983, Wynee, 1984 and Melick et al, 1979 in
    Edgerton, 1986).

    Child Mental Health Conditions
        Due to the changing nature of children's environments and brain
    development, the sociocultural environment in which they live affects
    their mental health even more than it does that of adults (Surgeon
    General, 1999). Among children in the general population, the most
    common mental health disorders are anxiety disorders, affective
    disorders, and attention deficit and disruptive disorders. These same
    disorders, with the addition of schizophrenia, are also the most
    commonly reported mental health disorders among children with MR (Chess
    and Hassibi, 1970 in Borthewick-Duffy, 1994 Embrets, 2000; Szymanski,
    1994; AACAP, 1999).

                Anxiety Disorders

        The combined prevalence of anxiety disorders is higher than that of
    virtually all other mental disorders of childhood and adolescence
    (Costello et al., 1996 in Surgeon General, 1999). The Surgeon General
    (1999) reports the one-year prevalence of anxiety among 9-17 year olds
    to be 13 percent. In contrast, a small study of a psychiatric clinic
    for children with mental handicaps under the age of 16 reported 22
    percent to suffer primarily from an anxiety disorder (Reid, 1980).
    Since children with MR are more dependent on their caregivers than
    children without MR, they may be more likely to react to changes in
    their routine, resulting in higher prevalence estimates of anxiety in
    this population.

                Affective Disorders

        Depression in childhood differs from depression among adults.
    Children with major depression, for example, do not experience
    psychotic features as often as depressed adults do, and when they do,
    the features are not presented in the same manner. Further, major
    depression is more likely to be associated with an anxiety disorder in
    children than in adults. In fact, two- thirds of children and
    adolescents with major depressive disorder also suffer from another
    disorder (Surgeon General, 1999).
        In the general population, the prevalence of depression has been
    estimated to be 6.2 percent for children 9-17 (Surgeon General, 1999).
    As with adults, the prevalence of depression is lower among individuals
    with MR, and it is easier to diagnose among children with mild MR than
    those with more severe MR. In Sweden, the prevalence of depression has
    been reported to be 1.5 percent among children with severe MR and 4
    percent among children with mild MR. Again, this may be due to the lack
    of family and peer support felt by children with mild MR, who are often
    expected to function ``alone'' in the general society to a greater
    extent than other subgroups of MR (Stavrakaki, 1999).
        One reason that depression is important to consider among children
    is that it increases the risk of suicide. In fact, over 90 percent of
    children who commit suicide are believed to have had a mental disorder.
    Among children in the general population, the prevalence of suicide is
    1.6 per 100,000 among 10-14 year olds and 9.5 per 100,000 among 15-19
    year olds (Surgeon General, 1999). Although many people do not
    associate suicidality with MR, in a study of a psychiatric hospital, 21
    percent of admissions for dual diagnosed youth demonstrated suicidal
    behavior either before or during the hospitalization (Walters et al.,
    1995).

                Attention Deficit and Disruptive Disorders

        The most common attention deficit and disruptive disorders include
    attention deficit/hyperactivity disorder (ADHD) and conduct disorder.
    In the general population, the prevalence of ADHD is estimated to be 3
    percent to 5 percent (APA, 1999). Among children with MR, poor
    attention and hyperactivity, the hallmarks of ADHD, are common reasons
    for mental health referrals (AACAP, 1999). Since most of the criteria
    used to diagnose ADHD are based on behavioral observation, not verbal
    communication, this disorder can be diagnosed fairly easily among non-
    verbal individuals with MR (AACAP, 1999). Consequently, the prevalence
    of ADHD among those with MR, 4 percent-11 percent, has been found to be
    somewhat similar to that in the general population (Feinstein and
    Reiss, 1996 in AACAP, 1999; APA, 1999).
        Further, among children with Down Syndrome, Green et al. (1989)
    found that even between the ages of 2 and 4 years, a discrete group
    could be identified as showing measurable attention deficit. Although
    this study was small, the authors concluded that the deficit was not
    associated with mental age, parenting style or medical factors; rather,
    they believed it to be intrinsic to Down Syndrome (Stores et al.,
    1998). ADHD is important to recognize because although many children
    outgrow their symptoms, children with ADHD often develop other
    disruptive disorders in their teenage years (Surgeon General, 1999).
        Children or adolescents with conduct disorder behave aggressively
    by fighting, bullying, intimidating, physically assaulting, sexually
    coercing, and/or being cruel to people or animals (Surgeon General,
    1999). Conduct disorder among children in the general population has
    been reported to range from 6 percent-16 percent among boys and 2
    percent-9 percent among girls (APA, 1999).
        Among individuals with MR, a Swedish population-based study found
    that 4.5 percent of those with severe MR and 12 percent of those with
    mild MR suffered from conduct disorder (Gillberg et al., 1986).
    Similarly, reports by Gath and Gumley (1986; 1987) indicate that 11
    percent of school children were rated to have conduct disorder by
    parents and teachers. A much smaller study of a psychiatric clinic for
    children with MR, however, reported that as many as 45 percent of the
    study population primarily manifested a conduct disorder (Reid, 1980),
    and Richardson et al. (1985) reported that 33 percent of children and
    adolescents with mild MR suffer from this disorder (AACAP, 1999).
    Although the prevalence, then, is not clear, a significant percentage
    of children with MR do suffer from conduct disorder. Given that rates
    of depression, suicidal thoughts, suicide attempts, and suicide itself
    are all higher in children diagnosed with a conduct disorder (Shaffer
    et al., 1996 in Surgeon General, 1999) than in children in the general
    population, this is an important condition to consider.

                Psychotic Disorders

        Since schizophrenia tends to develop during adolescence and young
    adulthood, the appearance of schizophrenic symptoms before age 12 is
    rare (APA, 1999; Rapoport, 2000). Schizophrenia develops very slowly in
    children, so that most children with schizophrenia show delays in
    language and other functions long before their psychotic symptoms
    appear (Rapoport, 2000).
        Perhaps because of its rarity, no reports of the prevalence of
    schizophrenia among children in the general population were identified
    for this report. The classification of children with schizophrenia
    among children with MR may be more frequent because some believe that
    children with psychosis often function at a mentally retarded level
    (Eaton and Menolascino, 1982). Eaton and Menolascino (1982), in fact,
    found the prevalence of schizophrenia to be 5 percent among children
    (<21 years) with MR, and 9 percent of children with Down Syndrome have
    been reported by parents and teachers to be classified as psychotic
    (Gath and Gumley, 1986; Gath and Gumley, 1987). A Swedish population-
    based study, however, found a lower prevalence of schizophrenia among
    children, with 1.5 percent among individuals with severe MR and 1
    percent among those with mild MR (Gillberg et al., 1986).

                Other Disorders

        Since MR can be a feature of pervasive developmental disorder
    (PDD), children with both of these conditions usually are not
    considered to be dually diagnosed. Because of its prevalence among
    individuals with MR, however, PDD deserves mention here. PDD is
    indicated by disordered cognition or thinking, difficulty in
    understanding and using language and difficulty in understanding the
    feelings of others or the world around them (Surgeon General, 1999).
    Autism, the combination of social, communication and imagination-
    behavior restriction (Wing and Gould, 1979 in Gillberg, 1999), is the
    most common form of PDD. Autism has been reported in .05 percent-.17
    percent of children in the general population, in 5 percent among those
    with mild MR, and in 15 percent among individuals with moderate or
    profound MR (Bryson et al., 1998 in Gillberg, 1999; APA, 1999).
        In addition, many studies report the prevalence of behavioral
    disorders, although the definition of this term is not clear.
    Nevertheless, this ``condition'' certainly represents functional issues
    and thus merits attention in this report. In the U.K., the prevalence
    of severe behavioral disorder among children with severe MR has been
    reported to be 20 percent among children and adolescents (Wing, 1971
    and Kushlik and Cox, 1973 in Holt, 1994).
        Further, among children with Down Syndrome, about 30 percent have
    been rated by their parents and teachers as behaviorally disordered
    (Gath and Gumley, 1986; Gath and Gumley, 1987). Although a British
    study of children indicated that those with Down Syndrome had a higher
    prevalence of behavioral disturbance than those without Down Syndrome,
    however, children with other intellectual disabilities showed a higher
    prevalence than either of these groups (Stores et al., 1998).

                            SUMMARY AND IMPLICATIONS

        Due to differences in methodology and diagnoses, comparisons of the
    prevalence of mental health disorders between individuals with MR and
    the general population are challenging at best. Further, given that
    dual diagnosis tends to be difficult, if not impossible, among
    individuals with severe MR, the percentages of mental health conditions
    reported here may underestimate the true percentages in this
    population. Nevertheless, the studies highlighted here indicate a high
    prevalence of dual diagnosis.
        The mental health conditions reported among individuals with MR are
    very similar to those found in the general population. Adults with MR
    tend to suffer less from substance abuse than those in the general
    population, but are more often diagnosed with anxiety disorders,
    psychotic disorders and personality disorders. Although affective
    disorders are less often diagnosed in adults with MR than in the
    general population, the prevalence of these conditions is believed to
    be higher than the cited studies indicate. In addition, individuals
    with Down Syndrome suffer from dementia as they age, and children with
    MR tend to suffer from anxiety disorders, affective disorders,
    psychotic disorders, ADHD and conduct disorder.
        Most U.S.-based studies find a higher prevalence of depression
    among individuals with mild or moderate MR than those with more severe
    MR. Schizophrenia, however, has been found to be more prevalent among
    individuals with severe MR. These associations may be due to the nature
    of the disorders. Since individuals with mild MR are more likely to
    live with their families, and experience and be aware of every-day
    stressors, they may be more susceptible to affective disorders than
    those with severe MR. In addition, the relationship between
    schizophrenia and severity of MR may be due to difficulties in
    diagnosing certain mental health conditions among individuals with MR.
    Because those with severe MR are more likely to live in institutions
    than those with mild MR, the former group may have greater access to
    experienced mental health care providers, who are capable of making
    difficult diagnoses.
        Further, European studies have found more mental health disorders
    among individuals with severe MR. This may be due to the types of
    populations and disorders studied, differences in diagnostic practices
    or the distribution of individuals among residential settings. For
    example, since in the U.S. dually diagnosed individuals with severe MR
    are more likely to live in institutions than with their families, they
    may not be captured in research using administrative data. Given that
    European studies tend to use population-based samples, they may be more
    likely to diagnose mental health disorders among individuals with
    severe MR than administrative studies conducted in the U.S.
        While in the past most individuals with MR in the U.S. received
    mental health care in the institutions in which they lived, most
    Americans with MR currently live in community or family settings. As a
    result, accessible and appropriate community-based services are
    imperative in order to identify and treat mental health disorders in
    this population.

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         Chapter 4.--Ocular Impairments Among Individuals With Mental
                                  Retardation

                                  INTRODUCTION

        As previously discussed, the prevalence of a condition will vary
    with changes in the population studied. Most research on ocular
    anomalies among individuals with MR analyzes administrative data,
    examining individuals who use services in the community. Depending on
    the population sampled, however, administrative studies may under- or
    over-estimate the true prevalence of ocular impairments among
    individuals with MR.

                                   PREVALENCE

        Available data suggest that ocular impairments (refractive errors,
    strabismus, cataracts, keratoconus, nystagmus and poor visual acuity)
    are more common among individuals with MR than those without MR
    (Polcar, 1983; Levy, 1984; Ronis, 1989; Maino, 1996). While 25 percent
    of children in the general U.S. population are reported to be
    ophthalmologically impaired, as many as 72 percent of children with MR
    have been so categorized (Lawson and Schoofs, 1971). A similar, if not
    more striking pattern can be seen among older adults. For example,
    while in the general population 0.6 percent of those between age 60 and
    69, and 9.0 percent of those over 80 have been reported to have ocular
    impairments (Thielsch et al., 1990 in Evenhuis, 1995), research in the
    Netherlands has found a prevalence of 18 percent-20 percent of
    moderate, and 8 percent of severe, visual impairment among
    institutionalized individuals over 60 years of age. Other studies have
    reported percentages of ocular impairments in individuals with MR over
    50 years to range from 8 percent to 50 percent (Janicki and Jacobson,
    1986, Day, 1987, Moss, 1991 and Van Schrojenstein Lantmann-de Valk et
    al., 1992 in Evenhuis, 1995).
        The most common cause of decreased vision in individuals with MR is
    uncorrected refractive errors (Maino, 1996), such as astigmatism,
    farsightedness and nearsightedness. While 15 percent-30 percent of the
    general population has a refractive error (Sullivan, 1988 and
    Regenbogen, 1985 in Gnadt and Wesson, 1992), 20 percent -60 percent of
    individuals with MR in the U.S. and Canada have been reported to
    require correction of refractive anomalies (Levy 1984; Woodruff et al.,
    1980; Gnadt and Wesson, 1992; Maino, 1996).
        Similarly, British research of administrative data on individuals
    with MR found the prevalence of refractive errors to be 30 percent
    (Aitchison et al., 1990), and an administrative study in Japan reported
    the prevalence of such impairments to be even higher. In this study,
    Kuroda et al. (1987) found that more than 80 percent of children with
    MR had refractive errors (Kuroda et al., 1987).
        International research on specific sub-populations of those with
    MR, however, has found slightly lower prevalence estimates of
    refractive errors. A Swedish study of institutionalized individuals
    with MR, for example, reported that 23 percent had a considerable
    refractive error in the best eye (Jacobson, 1988), and in Hong Kong,
    the prevalence of refractive errors among those with profound MR
    (IQ<25) has been reported to be 24 percent (Kwock et al., 1996).
        In addition, research has examined the prevalence of specific types
    of refractive errors, including astigmatism, hyperopia (farsightedness)
    and myopia (nearsightedness). Woodruff et al. (1980), for example,
    found the prevalence of astigmatism among institutionalized Canadian
    individuals with MR to exceed 30 percent. Further, Levy (1984) found
    higher percentages of hyperopia/astigmatism than myopia/astigmatism
    among Canadian adults with MR, although the difference was more
    pronounced among males than females, and a similar pattern can be seen
    among individuals without MR. In contrast to most Western studies
    indicating that hyperopia is more prevalent among individuals with MR
    than myopia, however, Kwok (1996) found myopic and hypermetropic
    astigmatisms to be equally prevalent in Hong Kong.
        Further, strabismus (the inability of both eyes to fixate on a
    target simultaneously because of ocular muscle imbalance) has been
    attributed to uncorrected refractive errors (Woodruff, et al., 1977).
    Similar to other visual impairments, the prevalence of strabismus among
    individuals with MR exceeds that of the general population (Woodruff,
    1977). While the prevalence of strabismus in the general population has
    been found to range from 3.7 percent to 9.5 percent (Levy, 1984; Block
    et al., 1997), the prevalence ranges from 21 percent to 41 percent
    among American and Canadian individuals with MR (Lawson and Schoofs,
    1971; Woodruff et al., 1980). Similarly, Aitchison et al. (1990) found
    the prevalence of strabismus to be 31 percent in a British
    administrative sample.
        The prevalence of cataracts (opacity of the lens of the eye, the
    capsule or both) and keratoconus (swelling and scaring of the cornea)
    among individuals with MR also has been reported to be much higher than
    that in the general population (Woodruff, 1977; Levy, 1984). For
    example, while the percentage of lens anomaly reported for adults
    without MR has been 1.42 percent, administrative data in the 1980's
    indicated that between 2.68 percent (females) and 5.36 percent (males)
    of Canadian adults with MR suffered from cataracts. In this same study,
    keratoconus also was reported to be more common among males than
    females with MR (Levy, 1984). British administrative data, however,
    indicates the prevalence of cataracts to be as high as 11 percent
    (Aitchison et al., 1990). These high prevalence estimates among
    individuals with MR may be due to the association between cataracts,
    keratoconus and Down Syndrome (see below).
        Severity of MR has also been found to be associated with the
    prevalence of visual impairments, with individuals with severe MR
    having more ocular problems than those with mild or moderate MR.
    Woodruff (1980), for example, found higher percentages of astigmatism
    among institutionalized Canadian individuals with severe MR than among
    those with mild or moderate MR, but reported no difference in corneal
    power between these categories. Further, Hirsch (1959) reported that
    individuals with higher intelligence tend to be more myopic, and those
    with lower intelligence to be more hyperopic (Manley and Schuldt,
    1970). In contrast, McCulloch et al. (1996) did not find a significant
    trend between severity of disability and refractive error among
    Scottish individuals with MR. They did, however, find a relationship
    between severity of MR and visual acuity (clearness or distinctness of
    vision). While 88 percent of institutionalized individuals with mild
    intellectual disability had good visual acuity, only 60 percent of
    those with severe disability and none of those with profound disability
    achieved this level. Similarly, the prevalence of strabismus in this
    study ranged from 25 percent among those with mild MR to 60 percent
    among those with profound MR.

                  OCULAR CONDITIONS AMONG SPECIFIC POPULATIONS

        When the Special Olympics, Inc. (SOI) population was studied at the
    1995 International Summer Games, the prevalence of overall ocular
    problems (29 percent) was comparable to that found in institutions
    (Block et al., 1997; Woodruff, 1980). Specifically, 27 percent suffered
    from poor visual acuity, 85 percent had refractive errors, 28 percent
    suffered from astigmatism, and 18.5 percent had strabismus (Block et
    al., 1997). Further, at the 1999 World Summer Games, the Special
    Olympics Opening Eyes Vision Health Program found as much as 25 percent
    of the screened population to have some form of strabismus (SOI, 1999).
        Individuals with Down Syndrome are at a particular risk for ocular
    anomalies as they age (Aitchison et al., 1990). In fact, among older
    adults, ocular impairments tend to occur at an earlier age among
    individuals with Down Syndrome than in the general population (Flax et
    al., 2000). Visual impairments, then, are of growing concern due to the
    increased longevity of patients with Down Syndrome (Aitchison et al.,
    1990).
        A Swedish study conducted in the late 1980's highlights the
    association between age and ocular impairment among individuals with
    Down Syndrome. Among 50 institutionalized patients with Down Syndrome,
    Jacobson (1988) found that 22 had a visual impairment, and 14 of the 22
    (64 percent) had acquired the impairment as adults. Further, although
    Lyle and Jaeger (1972) reported the prevalence of keratoconus to range
    in the literature from 1 percent to 8 percent among children with Down
    Syndrome, Jacobson found a prevalence of 30 percent among
    institutionalized adults with Down Syndrome (Jacobson, 1988).
        Generally, those with Down Syndrome are more likely to suffer from
    strabismus, nystagmus (constant, involuntary, cyclical movement),
    cataracts and keratoconus (Woodruff, 1977; Hestness et al., 1991;
    Millis, 1985 in Woodhouse et al., 1997), compared with individuals
    without Down Syndrome. The prevalence of strabismus has been reported
    to range from 22 percent to 43 percent among individuals with Down
    Syndrome (Berk et al., 1996 in Block et al., 1997; Shapiro and France,
    1985; Pires Da Chuna et al., 1996). In addition, the prevalence of
    cataracts, which tends to increase as individuals with Down Syndrome
    age (Jacobson, 1988), has been found to range from 13 percent to 54
    percent (Shapiro and France, 1985; Jaeger, 1980 in Pires Da Chuna et
    al., 1996), and the prevalence of keratoconus has been reported to be
    15 percent (Shapiro and France, 1985), among individuals with Down
    Syndrome.
        Further, despite the association between age and ocular anomalies
    in this population, children with Down Syndrome tend to have a high
    prevalence of ocular impairments. For example, one study found that
    among children with severe MR, 70 percent of those with Down Syndrome
    had poor visual acuity, compared with 30 percent of children without
    Down Syndrome (Gardiner, 1967). Additionally, a Brazilian study found a
    high prevalence of strabismus (38 percent) among children with Down
    Syndrome, although this condition was significantly more frequent among
    older children (Pires Da Chuna et al., 1996). Moreover, refractive
    errors have been reported in over 40 percent of children with Down
    Syndrome (Gardiner, 1967).
        Not surprisingly, then, Welsh researchers have reported that
    children with Down Syndrome have a higher prevalence of astigmatism
    compared with children without Down Syndrome, although this difference
    was only statistically significant among older children (Woodhouse et
    al., 1997). The Brazilian study mentioned above also found a high
    percentage of astigmatism (60 percent), compared with strabismus (38
    percent), among children with Down Syndrome (Pires Da Chuna et al.,
    1996). Further, a British study found more myopia than hypermetropia
    among children with Down Syndrome. Gardiner (1967) reports that among
    children with severe MR, 50 percent of the children with Down Syndrome
    were myopic and 15 percent were hypermetropic, while only 3 percent of
    children without Down Syndrome were myopic, and as many as 40 percent
    were hypermetropic.

                       RATIONALE FOR INCREASED PREVALENCE

        Part of the increased prevalence of ocular impairments among
    individuals with MR may result from the proportion of aging people with
    intellectual disabilities, which has grown due to medical and social
    advances (Flax et al., 2000). In fact, as detailed above, older
    individuals with MR, particularly those with Downs's syndrome, report a
    higher prevalence of visual impairments than individuals of the same
    age in the general population.
        In addition, the high prevalence of visual impairments among
    individuals with organic MR may be due to the condition that caused the
    MR, which may actually restrict ocular growth (Woodruff, 1980).
    According to Gardiner (1967), for example, most eye anomalies among
    individuals with Down Syndrome are due to a lack of coordination of the
    eye during its growth. Further, as mentioned above, Down Syndrome is
    often associated with cataracts, which can cause visual loss (Evehuis
    et al., 1997). In other cases, however, visual impairment may result
    from long-term medication use, which often has ocular side effects
    (Bartlett, 1987; Polcar, 1983; Maino, 1996). Since individuals living
    in institutions are often prescribed more drugs than those in the
    community, this may account for the higher prevalence of visual
    impairments among individuals with severe MR, who are more likely to be
    institutionalized than those with mild or moderate MR (Woodruff et al.,
    1980; Polcar, 1983). Additionally, as will be discussed in chapter 6, a
    loss of visual efficiency and acuity may occur over time due to
    inadequate detection and treatment.

                            SUMMARY AND IMPLICATIONS

        The prevalence of ocular deficits among individuals with MR, then,
    varies, depending on the population studied. Nevertheless, most
    research efforts have found high percentages of visual problems within
    this population. The most common conditions among individuals with MR,
    both in the U.S. and internationally, appear to be refractive errors
    and strabismus, although the distribution of hyperopia and mypoia tends
    to vary with the population studied. In addition, individuals with
    severe MR tend to have more visual anomalies than those with mild MR.
    While this observation may be due to the etiology of the MR, it may
    also be due to the increased medication use associated with the
    institutionalization of individuals with severe MR. Further, those with
    Down Syndrome are highly likely to have strabismus, cataracts and
    keratoconus, particularly as they age.
        Identifying ocular impairments in childhood is important because
    early correction can prevent further impairments over time. Further,
    visual impairment can limit the range of experiences and information
    available to a child, and thus, have a significant impact on a child's
    emotional, neurological and physical development (Mervis et al., 2000).
    This may be particularly important for children with MR. Combined with
    their other impairments, untreated or mistreated visual deficits may be
    a more devastating obstacle to children with MR (who may rely greatly
    on good functional vision) than to other children (who may be better
    able to compensate for visual impairments in other ways) (Gardiner,
    1965; Krekling and Anderson, 1974; Markovits, 1975; Ronis, 1989; Maino,
    1996; Evenhuis and Nagtzaam, 1997). Correcting ocular anomalies, then,
    can lead to both better functioning in society and educational and
    social benefits for children, adults and their families. Given this, it
    is crucial that ocular problems are identified early and, when
    possible, corrected.

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      Chapter 5.--Dental Health Among Individuals With Mental Retardation

                                  INTRODUCTION

       Poor oral health can have dramatic effects on an individual's
    quality of life. In fact, it can cause difficulties with eating, speech
    impediments, pain, sleep disturbances, missed days of work or school
    and decreased self-esteem (Locker et al., 1987; Hollister et al., 1993
    and Broder et al., 1994 in Perlman and Broder, 1996). In recognition of
    the importance of oral health to individuals, the U.S. Surgeon General
    and the World Health Organization have made oral health a national and
    international priority (U.S. DHHS, 1990; U.S. DHHS, 2000a; U.S. DHHS
    2000b; WHO, 2000).
        The overall oral health of a population can be described by DMFTs,
    which characterize the lifetime prevalence of dental caries in an
    individual or population by summing the number of decayed teeth (D),
    the number of missing teeth (M) and the number of filled teeth (F)
    (WHO, 2000). DMFTs range from 0 to 28 or 32 (depending on the inclusion
    or exclusion of wisdom teeth), with 28 or 32 indicating that all teeth
    have problems related to dental caries. Among 12-year old U.S.
    children, the average DMFT is 1.4 (WHO, 2000), while the average DMFT
    among U.S. adults aged 35-44 years is 13.6. Among Western European
    countries, DMFTs for 12-year old children range from .9 to 6.1 with a
    mean DMFT of 2.6. Adults from Western European countries have DMFTs
    between 8.8 to 22.9 (WHO, 2000).
        Besides dental caries and tooth loss, other oral health concerns
    include gingivitis (inflammation of the gums) and other periodontal
    diseases (loss of connective and bone tissue that support the teeth).
    According to the National Health and Nutrition Examination Survey III,
    48 percent of the U.S. adult population had gingivitis and 22 percent
    had other periodontal disease between 1988-1994 (U.S. DHHS, 2000a).
        Although the overall oral health of the population is improving,
    disparities still exist in oral health needs among subpopulations
    (Waldman, 1996; U.S. DHHS, 1999; U.S. DHHS, 2000a; U.S. DHHS 2000b).
    Individuals with MR, for example, have poorer overall oral health and
    oral hygiene compared with the general population (Haavio, 1995;
    Feldman et al., 1997; Waldman et al., 1998). The oral health and
    hygiene of individuals with MR is associated with severity of MR,
    etiology of MR, residential arrangements and age of the individual
    (Gabre and Gahnberg, 1997). The prevalence estimates among those with
    MR reported in the literature, however, are subject to the some of the
    same problems as the prevalence estimates of other health conditions.
    Namely, oral health prevalence estimates are based on administrative
    data or small community registries that may not adequately reflect the
    true prevalence in the population. Additionally, the methodologic rigor
    with which some of these published studies were conducted is somewhat
    questionable, in that they provide little information about the
    measurement of MR or its severity among individuals, inconsistent
    information about a comparison group and few, if any, statistical tests
    for comparison between groups of individuals.

                                   PREVALENCE

        Dental problems are among the top ten limiting secondary conditions
    among individuals with MR (Traci et al., in press; Szalda-Petree et
    al., in press). According to a recent pilot study of consumers of
    Montana Developmental Disability services (79.8 percent of whom had
    mental retardation), Traci et al. (in press) found that the estimated
    prevalence rate of oral hygiene problems was 451 per 1000 individuals
    with developmental disabilities. Like the general population, one of
    the most common oral health problems of children and adults with MR is
    dental caries. National and international studies, however, do not
    provide definitive data on the prevalence of dental caries among those
    with MR relative to the general population (Haavio, 1995; Shapira et
    al., 1998; Waldman et al., 2000a). The majority of authors have found
    that individuals with MR have similar prevalence estimates of dental
    caries to those of the general population (Pollack and Shapiro, 1971;
    Svatun and Heloe, 1975; Brown and Schodel, 1976; Tesini, 1981; Pieper
    et al., 1986; Costello 1990; Whyman et al., 1995; Gizani et al., 1997;
    Cumella et al., 2000). Some researchers, however, have found lower
    prevalence estimates of dental caries among individuals with MR, and
    others report higher prevalence estimates of untreated carries in this
    population (Tesini, 1981; Girgis, 1985; Forsberg et al., 1985; Barnett
    et al., 1986; Kendall, 1991).
        Nowak (1984), for example, examined the dental health of 3,622
    disabled individuals aged 0-16+ years living in the community. Based on
    examinations by dental hygienists, they found an average DMFT score of
    6.44 among individuals with Down Syndrome, and an average DMFT score of
    6.73 among individuals with other etiologies of MR, compared with an
    average DMFT score of 6.68 among individuals in the general population.
    They found, however, that the proportion of missing teeth (M) to filled
    teeth (F) was much higher among individuals with MR compared with the
    general population, suggesting that extraction, rather than
    restoration, is the primary treatment of dental problems among those
    with MR (Svatun and Heloe, 1975; Nowak, 1984).
        Alternatively, other researchers have found that those with MR have
    a lower prevalence of dental caries (0.4 caries per individual)
    compared with the general population (Girgis, 1985; Forsberg et al.,
    1985, Barnett et al., 1986). This low prevalence of dental caries is
    primarily found among individuals with severe MR living in institutions
    (Gabre and Gahnberg, 1994; Shapira et al., 1998). In fact, Butts (1967)
    found that children with severe MR living in institutions had fewer
    dental caries than children with mild or moderate MR. It is likely that
    the low prevalence of dental caries found among those with severe MR
    living in institutions relative to the general population results from
    the prior removal of decayed teeth and the low sugar diet served in
    institutions (Tesini, 1981). Some authors, however, have focused on the
    prevalence of untreated caries, rather than DMFT scores, which quantify
    the number of both treated and untreated caries. These studies report
    that both children and adults with MR have more untreated caries than
    the general population (Costello 1990; Cumella et al., 2000).
        Another common oral health problem among children and adults with
    MR is gingivitis, with prevalence estimates of 1.2 to 1.9 times the
    estimates of the general population. Studies on the oral health of
    individuals with MR, conducted in communities in the U.S. and
    internationally, report prevalence estimates of gingivitis in the range
    of 60 percent to 97 percent among individuals with MR compared with an
    estimates of 28 percent to 75 percent in the general population (Murray
    and McLeod, 1973; Sturmey and Hinds, 1983; Vignehsa et al., 1991;
    Kendall, 1991; Cumello et al., 2000; Tesini, 1981; American Dental
    Association, 2000). Those who are older, those living in institutions
    and those with Down Syndrome tend to have higher prevalence estimates
    of gingivitis (Murray and McLeod, 1973; Svatun and Gjermo, 1977;
    Tesini, 1981; Forsberg et al., 1985; Vigild, 1985; Kendall, 1991). For
    example, Shapira et al. (1998) suggested that the increased prevalence
    of gingivitis among institutionalized individuals may be related to the
    mouth dryness associated with certain medications commonly used among
    individuals with MR living in such settings. Increased prevalence may
    also be related to the increased surveillance of gingivitis and poor
    oral hygiene among individuals living in institutions.
        Other periodontal disease also has been shown to be more prevalent
    among individuals with MR, especially those living in institutions,
    compared with the general population. Sturmey and Hinds (1983) examined
    the dental hygiene of 26 U.S. adult residents with profound MR. They
    found that 33 percent had bruxism (wear on teeth due to grinding) and
    20 percent lacked mastication (ability to close the mouth to chew
    food). In addition, Oilo et al. (1990) examined the wear of teeth among
    individuals with MR living in a Norwegian residential placement
    setting. They found that 5.3 percent of men and 2.8 percent of women
    had unacceptable tooth wear that required treatment compared with 1.2
    percent in the general population.

                  DENTAL CONDITIONS AMONG SPECIFIC POPULATIONS

       The dental health of two unique populations, including Special
    Olympics athletes and individuals with Down Syndrome, deserve special
    attention. Special Olympics Inc. (SOI) has taken an active interest in
    the oral health needs of individuals with MR (Shriver, 1998; Perlman,
    2000). Consequently, several studies have reported the prevalence of
    oral health screenings at Special Olympics events (Feldman et al, 1997;
    White et al., 1998; SOI, 1999). Feldman et al. (1997), for example,
    documented the results of a screening program of Special Olympic
    athletes who participated in the New Jersey Special Olympic Games in
    1996. They found that 6-8-year old children with MR had similar
    patterns of dental caries as children of the same age in the general
    population (56 percent versus 53 percent, respectively). Adolescent
    athletes 15 years and over, however, were less likely to have dental
    caries than adolescents in the general population (54 percent versus 78
    percent, respectively). Further, there appeared to be no difference
    between athletes aged 35 to 44 years and individuals of the same age in
    the general population who had tooth loss due to periodontal disease or
    dental caries (62 percent versus 69 percent, respectively). In
    contrast, athletes aged 65 years and older were more likely to have
    lost all of their natural teeth compared with their peers without MR
    (50 percent versus 36 percent, respectively). Additionally, preliminary
    evidence from SOI national and international administrative data
    collected in 2000 suggests that the overall prevalence of untreated
    dental decay among Special Olympic athletes in the U.S. is 24.6
    percent, which is higher than the prevalence estimates in the U.S.
    general population (20.0 percent among school-aged children, 14.2
    percent among working adults) (Kaste et al., 1996 and Winn et al., 1996
    in SOI, 1999; SOI, 2000).
        Further, the increased prevalence of gingivitis among Special
    Olympic athletes has been documented to be higher than that in the
    general population. Data from the 1996 New Jersey Special Olympic Games
    suggested that 68 percent of athletes aged 35-44 years had gingivitis
    compared with 42 percent in the general population (Feldman et al.,
    1997). In addition, recently compiled SOI administrative data from 1999
    and 2000 found high overall prevalence estimates of gingivitis among
    Special Olympic athletes in the U.S. (42.0 percent), with estimates
    ranging from 23.5 percent to 73.0 percent (SOSS, 1999; SOI, 1999; SOI,
    2000). In sum, SOI athletes tend to have an increased prevalence of
    untreated caries and gingivitis compared with the general population,
    while only older athletes have been shown to have an increased
    prevalence of tooth loss.
        Individuals with Down Syndrome may be more susceptible to
    gingivitis and other periodontal diseases because they are thought to
    have underlying abnormal immunologic responses (Nespoli et al., 1993;
    Barr-Agholme et al., 1992 and Yavuzyilmaz et al., 1993 in Feldman et
    al., 1997; Beck et al., 1996). In a study of 120 children, Amano et al.
    (2000) found that children with Down Syndrome were more likely to have
    oral pathogens (or microorganisms capable of causing disease)
    associated with gingivitis compared with children without MR.

                       RATIONALE FOR INCREASED PREVALENCE

        Since oral health is dependent on oral hygiene (U.S. DHHS, 2000b),
    the increased prevalence of oral health problems among individuals with
    MR may be related to their oral health habits (Waldman et al., 2000b).
    In fact, the oral hygiene among individuals with MR has been shown to
    be consistently poor compared with individuals in the general
    population (SOI, 1999). Among individuals with MR, those with moderate
    or severe MR have been found to brush their teeth more regularly than
    those with mild MR (Gizani et al. 1997). Those with moderate or severe
    MR, however, often have impaired physical coordination and cognitive
    sequencing skills that limit independence in task completion (Sturmey
    and Hinds, 1983). Consequently, they generally need assistance from
    caregivers to complete oral hygiene tasks.
        Studies of oral health behavior also have been completed among
    athletes participating in Special Olympics Games. White et al. (1998)
    documented the results of a study of self-reported oral health habits
    of participants in the 1997 San Francisco Bay Area Special Olympics
    Special Smiles program. They found that 71.5 percent of athletes
    reported brushing their teeth at least once per day, 27.1 percent
    reported brushing their teeth two to six times per week and 0.8 percent
    reported brushing their teeth once per week. Estimates varied by age of
    participants. Younger athletes (9-20 year olds) were more likely to
    report brushing their teeth two to six times per week, while older
    athletes (21-49 year olds) were more likely to report brushing their
    teeth once per day. Even among this relatively high functioning
    population of individuals with MR, in which there is expected to be an
    over-reporting of positive health behaviors (SOI, 1999), over one-
    fourth did not maintain oral hygiene habits on a daily basis, providing
    evidence for the importance of instruction and reinforcement of daily
    oral hygiene among individuals with MR (Waldman et al., 2000c).

                            SUMMARY AND IMPLICATIONS

        The available data suggest that the oral health of individuals with
    MR is poorer than that of their peers without MR. Although there are
    inconsistent findings on the prevalence of dental caries among
    individuals with MR compared with the general population, the majority
    of evidence suggests that individuals with MR have more untreated
    caries than those in the general population. Given that treatment of
    caries is a prevalent and accepted part of good health behavior for
    much of the world, this lack of treatment, even in developed countries,
    suggests problems in access to dental services.
        Likewise, there is evidence that individuals with MR are likely to
    have a higher prevalence of gingivitis and other periodontal diseases
    compared with the general population. The prevalence of these oral
    health conditions among individuals with MR, however, is dependent on
    age, etiology of MR and living situation. Older individuals with MR are
    at higher risk for poor oral health compared with younger individuals
    with MR and those in the general population. Further, individuals with
    Down Syndrome are more likely to have gingivitis compared with
    individuals in the general population. Additionally, although increased
    surveillance may influence the prevalence of disease detected,
    individuals living in institutions are at increased risk for gingivitis
    and other periodontal diseases compared with individuals in the general
    population.
        As in the general population, good oral hygiene is an important
    measure to prevent oral diseases among individuals with MR.
    Interestingly, those with mild MR appear to have poorer oral hygiene
    when compared with those with moderate or severe MR, chiefly due to the
    increased supervision of those with more severe MR. This suggests that
    efforts to improve the oral hygiene of individuals with mild MR may be
    a particularly effective intervention.

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    Chronic Disease Prevention and Health Promotion/CDC, Office of
    Disability and Health/Center for Environmental Health/CDC. Oral health
    status and needs of special olympics athletes World summer games,
    Raleigh, North Carolina June 26 July 4, 1999. Special Olympics
    International: Unpublished report. 1999.
        36. Special Olympics, Inc. (SOI). Special Olympics Administrative
    Data derived from 34 Special Smiles events during 2000. Unpublished
    data. 2000.
        37. Special Olympics, Special Smiles (SOSS). Special Olympics
    Administrative Data derived from 20 Special Smiles United States events
    during 1999. Unpublished data. 1999.
        38. Sturmey P and Hinds JV. Management of dental hygiene for
    mentally handicapped people in residential settings. Dent Health.
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        39. Svatun B, Gjermo P. Oral hygiene, periodontal health and need
    for periodontal treatment among institutionalized mentally subnormal
    persons in Norway. Acta Odontol Scand. 1977;36:89-95.
        40. Svatun B, Heloe LA. Dental status and treatment needs among
    institutionalized mentally subnormal persons in Norway. Comm Dent Oral
    Epidemiol. 1975;3:208-213.
        41. Szalda-Petree A, Traci MA, Seekins T, Ravesloot C. The life
    quality and health of adults with developmental disabilities scale:
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    Disabilities, University of Montana. Manuscript in press.
        42. Tesini DA. An annotated review of the literature of dental
    caries and periodontal disease in mentally retarded individuals. Spec
    Care Dentist. 1981;1:75-87.
        43. Traci MA, Seekins T, Szalda-Petree A, Ravesloot C. Assessing
    secondary conditions among adults with developmental disabilities: A
    preliminary study. Missola, MT: Rural Institute of Disabilities,
    University of Montana. Manuscript in press.
        44. U.S. Department of Health and Human Services (U.S. DHHS).
    Healthy People 2000. Washington, DC: January 1990.
        45. U.S. Department of Health and Human Services (U.S. DHHS). HP
    2000 Oral Health Progress Review. Washington, DC: National Center for
    Health Statistics, December 1999.
        46. U.S. Department of Health and Human Services (U.S. DHHS).
    Healthy People 2010 (Conference Edition, in Two Volumes). Washington,
    DC: January 2000a.
        47. U.S. Department of Health and Human Services (U.S. DHHS). Oral
    Health in America: A Report of the Surgeon General. Rockville, MD: U.S.
    Department of Health and Human Services, National Institute of Dental
    and Craniofacial Research. National Institutes of Health: 2000b.
        48. Vigild M. Periodontal conditions in mentally retarded children.
    Comm Dent Oral Epidemiol. 1985;13:180-182.
        49. Vignehsa H, Soh G, Lo GL, Chellappah NK. Dental health of
    disabled children in Singapore. Austral Dent J. 1991;36:151-156.
        50. Waldman HB, Perlman SP, Swerdloff M. Use of pediatric dental
    services in the 1990s: Some continuing difficulties. J Dent Child.
    2000a;67:59-63.
        51. Waldman HB, Perlman SP, Swerdloff M. Orthodontics and the
    population with special needs. Am J Orthod Dentofacial Orthop.
    2000b;118:14-17.
        52. Waldman HB, Swerdloff M, Perlman SP. You may be treating
    children with mental retardation and attention deficit hyperactive
    disorder in your dental practice. J Dent Child. 2000c;67:241-245.
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    status of special athletes in the San Franciso Bay area. Can Dent Assoc
    J. 1998;26:347-353.
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    Chapter 6.--Health Services use for Individuals With Mental Retardation
                          and Summary Recommendations

                                  INTRODUCTION

        Despite the high prevalence of health problems among individuals
    with MR, very little is known about the quantity and quality of
    services they receive to treat their health conditions. Similar to
    research on health status, most research conducted in this area relies
    on administrative-based data, taken from service providers, or small
    community registries, rather than large population-based data. Although
    individuals with MR commonly reside in the community and receive
    services there, the available data may not be representative of the
    overall population of community dwellers with MR.
        In spite of the limitations of existing data, research indicates
    that most individuals with MR do not receive the services that their
    health conditions require. In fact, research on the access and quality
    of physical, mental, ocular and dental health care demonstrates that
    individuals with MR receive little medical care, compared with the
    general population (Howells, 1986; Wilson and Haire, 1990). Further,
    researchers have suggested that individuals with MR have four times
    more preventable mortality than individuals in the general population
    (Dupont and Mortenson, 1990 in Barr et al., 1999), suggesting that
    medical care may alter the health trajectories of individuals with MR.
        Since the studies reviewed here are based primarily on health
    service data collected in the 1980s and early 1990s, they may not
    reflect current health services use, which has been shaped by the major
    health care reforms that took place in the 1990s. Given that
    individuals in the general population have indicated a reduction of
    preventive and specialty health care service use due to these new
    initiatives (Hurley et al., 1993 in Szilagyi, 1998), the service use
    documented in this chapter most likely overestimates the current use of
    services among individuals with MR.
        In light of the health needs of individuals with MR described
    earlier in this report, the low health services utilization of this
    population certainly represents an under-utilization of care. To
    explain this phenomenon, this chapter reviews the available research on
    access to health services for individuals with MR, using a framework
    based on a modified version of Andersen's behavioral model of access to
    care (Andersen and Davidson, 1996). In this framework, health service
    use is influenced by factors in the environment, as well as
    characteristics of individuals in the population. Environmental factors
    include health care delivery system characteristics (namely, the
    structure and integration of systems), the coordination of delivery
    systems (including provider factors) and the continuity and
    documentation of care. Individual characteristics are conceptualized in
    terms of predisposing factors (personal characteristics that existed
    prior to onset of disease), enabling resources (factors that permit an
    individual to get health care, such as health insurance) and need for
    care (either evaluated by professionals or perceived by the individual
    or caregiver).
        Each of these factors can facilitate or impede health service
    utilization. After briefly reviewing the literature suggesting that
    health services are under-utilized by individuals with MR, this chapter
    focuses on the environmental factors and individual characteristics
    that serve as barriers to care for this population, and describes some
    efforts being made to overcome such constraints.

            HEALTH CARE SERVICE UTILIZATION FOR INDIVIDUALS WITH MR

        Despite the previously documented need for physical, mental, ocular
    and dental health services for individuals with MR, adequate services
    in this population are not frequently utilized. Individuals with MR,
    for example, have been shown to consult general practitioners less than
    others with special needs, including those less than 5 years of age or
    those 75 years of age and older (Jones and Kerr, 1997). Similarly,
    those with both mental health and MR diagnoses may be one of the most
    underserved populations in the U.S. (Reiss et al., 1982). Services for
    the dually diagnosed have been found to be deficient in availability,
    accessibility and adequacy in the U.S. (Jacobson, 1998), and a great
    need to increase access to special psychiatric services for those with
    MR has been documented (Menolascino et al., 1986; Reid, 1972, Hucker et
    al., 1979, Wright, 1982 and Sovner, 1986 in Day, 1994).
        Specifically, studies suggest that between 50 percent and 80
    percent of individuals with MR have had contact with their primary care
    provider in the previous 12 months (Singer et al., 1986; Howells, 1986;
    Wilson and Haire, 1990; Howells, 1991; Lennox and Kerr, 1997; Piachaud
    et al., 1998). Among those who do seek medical care for physical health
    conditions, researchers have found that, on average, those with MR have
    2.7 medical visits per year, which is similar to the general population
    of men (3.0 visits per year), but less than the general population of
    women (5.0 visits per year) and populations of vulnerable groups such
    as children and the elderly (5.7 visits per year) (Wilson and Haire,
    1990).
        Moreover, small community-based studies have found that only 30
    percent to 47 percent of individuals with MR receive care from
    specialists (Singer et al., 1986; Allison et al., 2000; Piachaud et
    al., 1998), despite the finding in another small community study by
    Minihan (1986) that 92 percent of individuals with MR had medical needs
    that required specialty medical care. Tonge (1999), for instance, found
    that while 41 percent of young people with developmental disabilities
    had disruptive antisocial behavior, only 10 percent received specialty
    mental health services. Similarly, among adults with moderate to
    profound MR in England, 75 percent of those with psychiatric illnesses
    have been found to receive no treatment (Cooper, 1997).
        Further, referrals to psychiatric services tend to vary with
    severity of MR, with referrals decreasing as the severity of disability
    increases and functioning decreases (Borthwick-Duffy and Eyman, 1990;
    Driessen et al., 1997). Other patient characteristics have been
    associated with referral rates as well. Older individuals living alone,
    for instance, are more likely to receive psychiatric treatment than
    younger individuals living with others (Driessen et al., 1997).
        Similarly, despite the clear benefits to early and frequent visual
    and oral assessments, research shows that individuals with MR receive
    less appropriate ocular and dental services than those without MR
    (Levy, 1984; Haavio, 1995). For example, at the SOI 1999 World Summer
    Games, the Special Olympics Opening Eyes Vision Health Program found
    that 32 percent of athletes had never had an eye exam, and almost 20
    percent had not had their last eye exam within the two previous years
    (SOI, 1999a). Further, a study of Scottish hospitals indicated that 56
    percent of patients with disabilities had no record of any past eye
    examination, and a disproportionate number of those who did have eye
    exams had only mild or moderate disabilities (McCulloch et al., 1996).
        In addition, although Piachard et al. (1998) reported that 92
    percent of individuals with Down Syndrome living in a borough of London
    used dental services in the past year, most researchers have documented
    that only 70.1 percent to 82.0 percent of individuals with MR use
    dental care services each year (Feldman et al., 1997; Manley and Pahl
    1989; Allison 2000; Cumella et al., 2000). For example, in a Special
    Olympics, Special Smiles screening program at the 1996 New Jersey
    summer games, Feldman et al. (1997) found that 70.1 percent of athletes
    saw a dentist in the past year and an additional 8.2 percent of
    athletes saw a dentist within the last two years. Additionally,
    screening data from the 1999 Special Olympics Games in North Carolina
    suggests that 41.8 percent of athletes required dental care beyond
    routine cleaning (SOI, 1999b).
        The quality of health services received by those individuals with
    MR who do access care, however, may not be optimal. For example,
    despite the fact that individuals with MR have an increased prevalence
    of certain health conditions, such as thyroid disease, diabetes and
    obesity, many of these conditions are not addressed by primary care
    providers (Howells, 1986; Wilson and Haire, 1990; Jones and Kerr,
    1997). Jones and Kerr (1997), in fact, found that 50 percent of
    individuals with Down Syndrome from five general practices in Wales
    never had a thyroid screening test. In addition, despite the
    establishment of screening tools and low threshold referral systems for
    the diagnosis and management of impairments, several researchers have
    noted that individuals with MR do not receive preventive or health
    maintenance activities, such as annual health screenings (Ineichen and
    Russell, 1987; Beange and Bauman, 1990a; Wilson and Haire 1990; Kerr et
    al., 1996; Jones and Kerr, 1997; Evenhuis et al., 1997).
        Similarly, individuals with MR who receive mental health services
    often do not receive quality care. As discussed in a previous chapter,
    many mental health professionals lack training in providing care to
    individuals with MR (Moss, 1999). Given that individuals in this
    population may present with atypical symptoms (King, 1993 in Verhoeven
    and Tuinier, 1999; Stavrakaki, 1999, Meins,1995 in Verhoeven and
    Tuinier, 1999; Verhoeven and Tuinier, 1999) and have difficulties
    communicating with providers (Sovner, 1986 in Crews et al., 1994;
    Sturmey, 1999), the care they receive from inexperienced professionals
    may be compromised.
        In addition, both the detection and the treatment of ocular
    anomalies are often inadequate among individuals with MR. This is
    particularly important because many ocular deficits are correctable. In
    fact, Woodruff found that 49 percent of institutionalized individuals
    with MR had a correctable spherical refractive error, and 37 percent
    had a correctable astigmatism (Woodruff, 1980). Even among individuals
    who receive correction, however, a study of the 1995 Special Olympics
    World Summer Games found that many athletes were not using an adequate
    lens (Block et al., 1997). Similarly, McCulloch et al. (1996) found
    that 38 percent of Scottish hospital patients with disabilities did not
    have appropriate correction of refractive errors.
        Early diagnosis and frequent assessments and intervention, however,
    can prevent the long-term effects of this increased prevalence of
    uncorrected visual anomalies (Woodruff, 1977; Woodruff et al., 1980;
    Bartlett, 1987). For instance, since the onset of most cases of
    strabismus is before five years of age, early intervention may prevent
    the loss of visual efficiency over time. Further, studies have shown
    that glasses are generally utilized by individuals for whom they are
    prescribed (Warburg, 1964 and Warburg 1970 in Jacobson, 1988; Jacobson,
    1988). For example, Jacobson (1988) found that after 16-18 months, 74
    percent of institutionalized individuals were still wearing their
    prescribed glasses, and Gardiner (1965) reports that 50 percent of
    those for whom glasses were prescribed in a school for children with MR
    were wearing the glasses after 3 months. This high utilization rate
    indicates the helpfulness of corrective lenses. In fact, correcting
    poor vision with appropriate glasses can have an enormous impact on
    children's functioning. In general, individuals receiving and using
    appropriate glasses show improvements not only in reading, writing and
    fine motor skills, but also in other areas, such as social
    interactions, challenging behavior and general achievement (Bader and
    Woodruff, 1980 in Polcar, 1983; Levy, 1984; Bartlett, 1987; Ronis,
    1989; McCulloch et al., 1996; Evenhuis and Nagtzaam, 1997). Kuroda et
    al (1987), for example, showed that Japanese children with MR became
    more active and lively after using appropriate glasses.
        Additionally, individuals with MR do not receive adequate dental
    care, despite the findings that they have poor oral health. One
    preventive measure against dental decay is the use of dental sealants.
    Recognizing the importance of this measure of preventive dental care,
    the U.S. Surgeon General set a target of 50 percent of school-children
    to receive dental sealants by the year 2000. To date, only 23 percent
    of 8-year old children in the U.S. have received dental sealants, but
    fewer children with MR have received such care (CDC, 2000; SOI, 1999b).
    Feldman et al. (1997) found that 14 percent of 1996 New Jersey Special
    Olympic athletes aged 8 years old had received a protective sealant,
    and 16 percent of adolescent athletes had received a protective
    sealant. Similarly, data from 32 Special Olympic Games indicate that
    only 13.9 percent of Special Olympic athletes in the United States
    (including both adults and children) have dental sealants (SOI, 2000).

                                BARRIERS TO CARE

        There are numerous reasons, including both environmental factors
    and individual characteristics, why the health needs of individuals
    with MR are not being met. Both nationally and internationally, current
    systems of health care rely on an individual's ability to recognize the
    need for care, seek care when necessary and, to some extent, coordinate
    the provision of care. Even in Western Europe, where systems of care
    are designed to be coordinated, individuals are commonly left to manage
    their own care. Those with MR, however, often lack the ability to
    recognize health problems, and when they do identify the need for
    services, many environmental and individual barriers prevent them from
    receiving necessary care (Wilson and Haire, 1990).

    Environmental Factors
        The way in which health care is organized creates an environment
    that can either increase or impede access to services. In the past,
    individuals with MR received health services through contained systems
    of care within the institutions where they lived (Minihan, 1986).
    Deinstitutionalization, however, has forced individuals with MR to rely
    on community-based health providers for their health service needs
    (Garrard, 1982; Minihan, 1986; Waldman and Perlman, 2000). In response
    to this reliance, communities have developed different service delivery
    models to care for individuals with MR, largely based on the structure
    of the country's pre-existing health system for the general population.
    Health systems in the U.S. and Western Europe, for example, vary in the
    degree to which service sectors are financially integrated and
    bureaucratically organized, which has a direct impact on the
    coordination, continuity and documentation of care. In turn, these
    aspects of health services influence both access to and the quality of
    health care services for individuals with MR.

    Health Care Delivery System
        In the U.S., individual medical care (e.g., physical, mental,
    ocular and dental health care services), community preventive health
    services (e.g., immunization and screening programs) and health-related
    social supports (e.g., respite care and crisis intervention through
    social service agencies) (Halfon et al., 1996) are separate entities
    that are operated through different agencies. As a result, distinct
    sectors of care with different agendas, philosophies and funding
    streams have developed, leading to an overall fragmentation of health
    care for Americans (Halfon et al., 1996; Savino et al., 1973). In fact,
    few American communities have comprehensive health care that integrates
    services both between and within each sector of care (Davidson et al.,
    1995).
        In an attempt to decrease the fragmentation of services and contain
    costs, health care financing recently has been reorganized into various
    managed care arrangements. Under managed care, the primary point of
    entry into the U.S. health care system is the primary care physician
    (Birenbaum, 1995 in Tyler et al., 1999), who has been designated the
    gatekeeper and, thus, to some extent the coordinator of care between
    and within all sectors (Kastner, 1991; Birenbaum, 1995). In addition to
    gatekeeping, managed care plans use utilization management and practice
    guidelines to encourage primary care service utilization and discourage
    the use of preventive care and specialty services. In fact, in many
    states, specialty care services such as dental care are not covered by
    state Medicaid managed care plans (Waldman and Perlman, 2000). Thus,
    managed care has resulted in a decreased access to preventive and
    specialty health services among individuals in the general population.
    Under the care of health maintenance organizations (HMOs), for example,
    individuals generally must endure longer waiting periods for care and a
    limited use of specialist providers (Kastner, 1991). Further, as HMOs
    have increasingly gained responsibility in the behavioral health
    sector, concerns regarding the access of individuals to psychiatric
    services has increased (Jacobson, 1998).
        Like the general population, many individuals with MR who receive
    Medicaid have been transitioned into managed care plans (Kastner et
    al., 1997 in Walsh and Kastner, 1999; Hemp and Braddock, 1998). The
    current system of managed care, however, is particularly detrimental
    for individuals with MR, because these individuals have unique health
    care needs that often require coordination by providers experienced
    with MR (Ashbaugh and Smith, 1996; Birenbaum and Cohen, 1998). As
    discussed below, however, coordination of care or case management by
    the primary care provider is frequently ineffective in this population
    because these providers do not view themselves as having the primary
    responsibility for the health care of individuals with MR (Barr et al.,
    1999).
        In contrast to the fragmented health care system found in the U.S.,
    Australian and Western European countries, such as Sweden, France and
    Great Britain, have opted for more integrated health service systems,
    in which health care is an insured and guaranteed consumer good or
    service financed through private insurers or state-supported systems.
    Since health, developmental and social service sectors of care have
    similar funding streams, and are organized primarily by local health
    authorities that track population needs (Rodwin, 1999), the
    coordination of health services may be less fragmented in these systems
    than in sector-based health care systems. Unlike the sector-based
    system of care, individuals with MR in more integrated health care
    systems rely on the advice of two MR teams (primary care and
    community), which are designed to liaise available health and social
    community resources with the needs of individuals with MR (Griffin,
    1989; Lennox and Kerr, 1997). Since the general practitioner is the
    most frequent provider of health care for individuals with MR, he or
    she is an essential part of the primary care team (Howells, 1991;
    Lennox and Kerr, 1997). Community teams, in countries such as the
    United Kingdom (U.K.), provide disabled individuals with social service
    needs assessments, from which individualized care packages are devised.
    Multidisciplinary teams in London, in fact, currently plan the
    management of the dually diagnosed, integrating specialty psychiatric
    services and generic mental health services (Golding, 1982; Bouras et
    al., 1994).
        In theory, these integrated systems of care are better able to
    manage the care of individuals with MR than sector-based systems of
    care. In practice, however, these Australian and European systems of
    care have been shown to fall short of providing adequate health care
    for individuals with MR. (Shapiro, 1974; Rodgers, 1994 in Bond et al.,
    1997; Cooper, 1997). Using one region in the U.K. as an example, Myers
    (1982) suggested that inconsistencies in the philosophies and policies
    of the health and local authorities prevents true integration of care,
    and consequently results in poor overall health care of individuals
    with MR.

    Coordination of Care through Primary Care Providers
        Part of the difficulty in coordinating care between sectors is due
    to the assumption that the primary care provider will be the gatekeeper
    of care. Primary care providers, however, tend to avoid the role of
    care manager for individuals with MR because of a lack of training,
    financial disincentives and time constraints. For example, national and
    international research suggests that primary care providers often lack
    training on how to interact with individuals with MR, as well as the
    specialized medical, preventive and social service needs of individuals
    with MR and the resources available to this population (Fremont, 1968;
    Shonkoff et al., 1979; AACAP, 1999; Garrard, 1982; Greenhalgh 1994 in
    Barr et al., 1997; Davidson et al., 1995; Davidson, 1995; Martin et
    al., 1997; AACAP, 1999; Allison et al., 2000). In a study of family
    practice medical programs in the U.S., for example, Tyler et al. (1999)
    found that 84 percent of programs that responded provided residents
    with one or more experiences with individuals with MR and 60 percent of
    programs instructed residents on MR. Additionally, providers indicate a
    need to broaden their training (Holt and Huntley, 1973; Dobos Jr. et
    al., 1994; Lennox and Chaplin, 1996; Lennox et al., 1997). For example,
    in a study of general practitioners in Australia, Lennox et al. (1997)
    found that 69 percent of providers had experience with individuals with
    MR, but 93 percent of general practitioners felt that they would
    benefit from additional training on MR. Similarly, Lennox and Chaplin
    (1996) found that 79 percent of psychiatrists surveyed stated that they
    had not received sufficient training in the general or behavioral
    management of those with dual diagnoses.
        Dental schools have also reported minimal exposure of dental
    students to individuals with MR (Waldman and Perlman, 2000). Waldman
    and Perlman (1997) reported the results of a recent study that found
    that 47 percent of dental schools had eight or fewer didactic hours on
    the treatment of developmental disabilities and 65 percent of dental
    schools had 10 or fewer hours on clinical activities associated with
    individuals with developmental disabilities. Similarly, a study of the
    dental health providers who volunteered to provide dental screenings at
    the 1996 Special Olympic Games in Massachusetts found that 75 percent
    of dental health students and professionals had never worked with
    individuals with MR prior to the Games (Perlman and Broder, 1996). Not
    surprisingly, then, Perlman and Broder (1996) found that prior to the
    Games, only 45.9 percent of providers reported that they were very
    comfortable with individuals with MR, while 29.8 percent reported that
    they were somewhat comfortable and 16.2 percent reported neutral
    feelings about individuals with MR.
        This lack of training and experience, then, may influence
    providers' willingness to provide treatment to individuals with MR as
    well as influence their attitudes and beliefs about individuals with
    MR. Waldman et al. (1999), for example, report that only 29 percent of
    dentists nationally participated in Medicaid managed care, the
    predominant health insurance for individuals with MR. Additionally,
    many authors have noted that health care providers have negative
    attitudes and stereotypes about individuals with MR and their ability
    to maintain their health status (Garrard 1982; Murdoch et al., 1984 in
    Lennox et al., 1997; Barker and Howells, 1990; Minihan, 1993;
    Greenhalgh 1994 in Barr et al., 1999; Martin et al., 1997; Lennox et
    al., 1997). Lennox and Chaplin (1996), for example, found that 39
    percent of psychiatrists surveyed would prefer not to treat people with
    both MR and mental health conditions. Beange (1996) points out that
    some doctors are concerned about disrupting their other patients if
    individuals with MR are kept waiting too long in the reception area.
    Further, Garrard (1982) notes that physicians make value judgments
    about the worth of individuals with MR in making diagnostic and
    treatment decisions, suggesting that physicians with negative attitudes
    may withhold treatment. Surveys of providers, in fact, have suggested
    that physicians have lower expectations and more pessimistic views on
    the roles of individuals with MR than other professionals and family
    members (Siperstein et al., 1994; Nursery et al., 1990 in Lennox and
    Kerr, 1997). As a result of these attitudes, many providers are
    reluctant to spend time managing the care of individuals with MR.
    Moreover, due to certain stereotypes, providers that do assume the role
    of coordinator may not refer these individuals to needed specialty care
    (Fischler and Tancer, 1984; Goodman and Cecil, 1987; Kelly and
    Menolascino, 1975 in Minihan et al., 1993; Bickley 1990; Minihan et al.
    1993; Burtner and Dicks, 1994 in Perlman and Broder 1996).
        Further, research indicates that present health care systems do not
    adequately reimburse providers (including dental) for the care given to
    individuals with MR, creating a disincentive to treat these individuals
    (Waldman et al., 1999). In fact, Hemp and Braddock (1998) documented
    that the majority of Medicaid managed care programs for individuals
    with disabilities use a risk- based plan in which primary care
    physicians are responsible for costs that exceed standard payments.
    Additionally, under most health systems, providers are reimbursed at
    the same rate for all patients regardless of case complexity, yet
    treatment consultation time is greater for individuals with MR than
    individuals in the general population (Lennox et al., 1997). As a
    result, when an individual with MR has co-existing conditions (Bouras
    and Szymanski, 1997), the primary care provider and another provider
    may each view the other as taking responsibility for the management of
    care. This diffusion of responsibility (Fletcher et al., 1999) can be
    particularly problematic for dually diagnosed individuals, when care is
    sought from both a primary care physician and a psychiatrist (Reiss,
    1994 in Fletcher et al., 1999). Since it is generally not to the
    financial advantage of either the mental health or the physical health
    care system to take primary responsibility for a patient's needs,
    neither may want to establish the ``primary diagnosis'' (Menolascino et
    al., 1986), which would indicate responsibility for coordination of
    care.
        Additionally, the U.S. managed health care system is structured so
    that primary care physicians generally lack the time necessary to
    devote to the complex medical, preventive and social needs of
    individuals with MR (Department of Health, 1995; Lennox et al., 1997),
    making providers an overburdened and inefficient source of case
    management. Rather than providing comprehensive case management, then,
    primary care providers focus on the medical needs of individuals with
    MR with which they are most familiar, often overlooking or not
    examining important preventative and social needs (Beange and Bauman,
    1990a; Wilson and Haire, 1990; Councilman, 1999).
        As a result of poor coordination between service sectors, then,
    individuals with MR often have limited access to certain services,
    which leads to a poor quality of overall health care. In addition,
    researchers have documented that when individuals are referred for
    specialty care, the collaboration between primary care providers and
    specialists about the health of individual patients is limited (Cumella
    et al., 1992; Lennox and Chaplin 1995; Lennox and Chaplin, 1996 in
    Lennox et al,. 1997).
    Continuity and Documentation of Care
        Even when individuals with MR are able to access care, other
    organizational factors, such as a lack of continuity of care and
    insufficient documentation present barriers to the quality of care
    received by this population (Parker and Hirst, 1987; Haavio 1995;
    Crocker et al., 1987; Greenhalgh 1994 in Barr et al., 1999; Martin et
    al., 1997 in Barr et al., 1999; Cumella et al., 1992; Lennox and
    Chaplin 1995; Lennox and Chaplin, 1996 in Lennox et al., 1997; Wilson
    1992 in Perlman and Broder 1996; Garrard, 1982; Crocker, 1988, Beange
    and Bauman, 1990b; Minihan and Dean, 1990, Minihan et al., 1993;
    Benage, 1996 in Lennox et al., 1997; Waldman and Perlman, 1997; Gordon
    et al., 1998). Health care for individuals with MR, for instance, lacks
    a continuity of providers. This was exemplified by a small study of
    individuals with MR living in the community, which found that only 17.7
    percent of individuals had seen the same physician or been to the same
    clinic twice (Edgerton et al., 1994). The majority of individuals with
    MR did not have a regular source of care. Concern has also been
    expressed about the continuity of care when individuals with MR make
    transitions in their life, such as moving from pediatric to adult
    medical care (Parker and Hirst, 1987). Because individuals with MR have
    difficulty adjusting to unfamiliar surroundings and thrive in
    structured routines, consistent and familiar providers are particularly
    important to the treatment of these individuals.
        Further, researchers have noted that access to health care is
    compromised for individuals with MR because there are insufficient
    tracking systems to inform individuals with MR when it is time for a
    routine checkup (Haavio, 1995). Documentation problems also are evident
    in the lack of available medical records recording case histories of
    individuals with MR (Crocker et al., 1987; Greenhalgh 1994; Martin et
    al., 1997 in Barr et al., 1999). In a study by Lennox et al. (1997), 89
    percent of general practitioners agreed with the statement that they
    had difficulty obtaining access to the medical history of a patient
    with MR. Despite the global emphasis on mainstreaming and
    normalization, then, both nationally and internationally, most
    community health care systems have been unprepaed to meet the health
    needs of individuals with MR outlined earlier in this report (Garrard,
    1982; Minihan, 1986; Howells, 1991; Howells, 1996; Minihan and Dean,
    1990; Hand and Reid, 1996; Birenbarum, 1995 in Tyler and Bourguet,
    1997).

                Individual Characteristics

        Many characteristics of those with MR may prevent these individuals
    from receiving adequate health care services. While predisposing
    factors and the prevalence of enabling resources might hinder the
    ability to seek and receive quality health care once need has been
    established, the inability to identify the need for care may prevent
    individuals from ever even recognizing that such care is necessary.

    Predisposing Factors
        Individuals with MR may be reluctant to seek medical care because
    they are frightened of new surroundings and treatment procedures
    (Gordon et al., 1998; Evenhuis et al., 2000). In a survey of members of
    the Association of Retarded Citizens, for example, Gordon et al. (1998)
    found that 27.9 percent of individuals with MR were anxious about
    dental visits.
        Once health care is obtained, several characteristics of
    individuals with MR may negatively affect the quality of care received.
    These constraints include poor communication between individuals with
    MR and providers, physical and behavioral difficulties in treating
    individuals with MR and an inability of individuals with MR to
    understand the importance of adherence to treatment regimens. Most
    researchers, clinicians and patients recognize that communication
    between patients and medical providers is an essential component of
    quality care. Poor communication, however, is a significant barrier to
    quality health care for individuals with MR (Diamond, 1982; Howells,
    1986; Barker and Howells, 1990; Bickley, 1990; Beange and Bauman,
    1990b; Cumella et al., 1992; Minihan et al., 1993; Beange et al. 1995;
    Beange, 1996; Lennox et al., 1997). Because many individuals with MR
    have limited communication skills, providers must rely on caregivers'
    reports and observations to obtain accurate medical histories, to
    understand the health complaints of individuals with MR, and to
    communicate treatment regimens (Beange, 1996; Lennox and Kerr, 1997;
    Evenhuis et al., 2000).
        Physical and behavioral impairments can also impede individuals
    with MR from receiving adequate medical care (Gardiner, 1965; Mayer et
    al., 1983; Gnadt and Wesson, 1992; Haavio, 1995). Individuals with MR
    may have comorbid neurological conditions, which may be heightened in
    unfamiliar situations, and thus make sitting through and cooperating
    with medical examinations and procedures difficult. This is exemplified
    in the problems of dental care delivery described by the Missouri Elks
    Mobile Dental Program (Dane, 1990). Dane (1990) notes that individuals
    with athetoid cerebral palsy, who have an increase in involuntary
    movements during stressful situations, often require restraints or
    general anesthesia to receive dental treatment. In addition, women with
    cerebral palsy with and without MR have been noted to have difficulty
    obtaining dental and gynecologic care as a result of neurological
    impairments (Turk et al., 1997 in Evenhuis et al., 2000).
        Individuals with MR also may have difficulty adhering to treatment
    regimens (Lennox et al., 1997; Webb and Rodgers, 1999). As a direct
    result of their cognitive impairments, individuals with MR frequently
    have difficulty understanding the benefits to treatment adherence.
    Additionally, perhaps due to the lack of continuity of care mentioned
    above, individuals with MR often do not develop a therapeutic
    relationship with medical providers, which would increase the
    likelihood of adhering to a treatment regimen.

    Enabling Resources
        Individual resources, such as health insurance,can also influence
    access to care. Although individuals with MR are entitled to Social
    Security Disability Income (SSDI) and Medicaid, not everyone in this
    population utilizes these benefits, and thus many face financial
    barriers to care. Dental care, for example, is not covered by most
    state Medicaid plans, and in those states where dental care is covered,
    reimbursement rates are low (Waldman and Perlman, 2000; Waldman and
    Swerdloff, 1999). Further, in a national study, Birenbaum and Cohen
    (1993) reported that 4 percent of those with severe or profound MR had
    no insurance coverage. Not surprisingly, the percentage of the
    uninsured who did not visit a physician in the 12-month study period
    was three times higher than that for insured individuals. Further, 20
    percent of the sample parents of children with severe or profound
    mental retardation had experienced refusals or limitations in the
    health insurance they could purchase for their child, and about 15
    percent of those with private insurance had policies that specifically
    excluded coverage for some of the child's health care. Consequently,
    the families of these children spent an average of 7 percent of their
    income on health care, and 10 percent spent over 15 percent of their
    total income on these services. For those with limited incomes, who are
    not receiving government benefits, health care costs can be an
    insurmountable barrier to services.

    Need for Care
        As documented previously in this report, individuals in this
    population have many health needs. Individuals with MR, however, often
    have difficulty determining when they are in need of medical assistance
    and rely heavily on caregivers to recognize signs of health problems or
    to schedule routine health care appointments (Wilson and Haire, 1990;
    Lennox et al., 1997; Webb and Rodgers, 1999). Caregivers, though, have
    been shown to have a poor understanding of symptoms and are often
    reluctant to seek care for individuals with MR, particularly when their
    health problems seem mild compared with their more complex medical
    conditions (Lennox and Kerr, 1997; Lennox et al, 1997). Additionally,
    perhaps because of a low availability of respite care, which can
    provide important support to caregivers, high caregiver turnover can
    prevent caregivers from recognizing changes in the health of
    individuals with MR or knowing the past medical histories of
    individuals with MR (Lennox et al., 1997; Hoare et al., 1998; Waldman
    and Perlman, 2000).

                         EFFORTS TO ADDRESS UNMET NEED

        In response to the barriers faced by individuals with MR to receive
    quality health care services, many have suggested changes in the
    primary care physician's role in the treatment of individuals with MR
    (Pearson, 1968; Fremont, 1968; Adams, 1972; Merker and Wernsing, 1984;
    Crocker et al., 1987; Councilman, 1999). Despite physicians' general
    reluctance to treat those with MR, some advocates insist that primary
    care providers should assume responsibility for the health management
    of individuals with MR over a long period of time. According to these
    proponents, providers, including physicians and nurse practitioners,
    should make medical and preventive care readily available, coordinate
    referrals to specialty care (including dental), educate family members
    or caregivers and coordinate with education and social service
    agencies.
        Further, in order to address the lack of care for the dually
    diagnosed, some have suggested that clinicians provide services based
    on need, rather than primary diagnosis (Fletcher et al., 1999), thereby
    avoiding the diffusion of responsibility. Others have advocated that
    community mental health centers be opened to the dually diagnosed, who
    often have no place else to go (Reiss et al., 1990), and some have
    indicated that psychiatrists should be responsible for the assessment
    of those with MR (Reid, 1980), or at least take the role of educating
    physicians (McCreary, 1991).
        In addition, countries and communities have responded differently
    to the unmet health care needs of individuals with MR. Some countries
    have actively evaluated the care of individuals with MR and provided
    guidance to local communities in service delivery for individuals with
    MR. For example, in the U.K., the Department of Health examined the
    health service needs and adequacy of the health system for individuals
    with MR in the 1995 report entitled, Health of the Nation: Strategy for
    People with Learning Disabilities (Department of Health, 1995).
    Further, general practitioners in the U.K. provided guidance to the
    care of individuals with MR with an Occasional Paper entitled, Care of
    People with Mental Handicap (Barker and Howells, 1990 in Howells,
    1991).
        In the U.S., a group of physicians organized the Sterling D.
    Garrard symposium on community health services for individuals with MR
    in 1986. From this workshop, Crocker et al. (1987) outlined ten
    essential components in health services for individuals with MR,
    including multiple options for the delivery of health care, usual
    source of care through a primary care provider, health care networks,
    coordination of care, comprehensive personal medical record, standards
    for health service delivery, adequate reimbursement for providers,
    training of providers, and health service research and evaluation.
        Further, recognizing that the U.S. health system is not designed to
    meet the unique health care needs of individuals with MR, demonstration
    projects and research programs have been developed that use a more
    integrated health care model either through case management or
    multidisciplinary teams (Perrin et al., 1972; Fujimoto et al., 1978;
    Cole, 1987; Schor et al., 1981; Griswold et al., 1987; Tesini, 1987;
    Ziring et al., 1987; Ziring et al., 1988; Chicoine et al., 1994;
    Criscione et al., 1995; Davidson et al., 1995; Pulcini and Howard,
    1997; Braddock and Hemp, 1997). Despite the published research
    suggesting that care coordination is the key to effective health care
    service for individuals with MR (Gregg, 1967; Grossman, 1968; Davidson
    et al., 1995; Walsh et al., 1997; Evenhuis et al., 2000), however, no
    widespread integrated systems of care have been created for individuals
    with MR in the U.S.
        In part, this may be because the U.S. government has not shown
    adequate leadership in the effort to increase health care utilization
    among individuals with MR. Most government resources focus on the
    prevention of MR, deinstitutionalization, and housing, education and
    employment of individuals with MR. Little information is even available
    at the federal level on the quality of health care and service
    utilization of individuals with MR.

                            SUMMARY AND IMPLICATIONS

        Similar to studies on the prevalence of MR and other health
    conditions, research efforts on health care service use by individuals
    with MR are scarce. Studies that do address service use in this
    population tend to focus on non-representative samples of the
    population, and indicate that individuals with MR do not receive
    adequate physical, mental, ocular or dental health care.
        Many barriers to care have been cited to explain the low
    utilization of services and poor quality of care among individuals with
    MR. The most compelling constraints include uncoordinated systems of
    health care, providers' lack of training and caregivers' lack of
    knowledge and abilities. Despite the influx of managed care in the
    U.S., American health care remains fragmented and difficult to access.
    Further, although Western Europe is thought to have a more centralized
    system of care, health care systems abroad have been shown to have
    problems with care coordination as well.
        Within these fragmented systems of care, primary health care
    providers in the U.S. have been given the responsibility to coordinate
    care for individuals with MR. As a result of insufficient training,
    however, health care providers often resist treating such patients and
    are ineffective coordinators of care. Thus, individuals with MR must
    navigate themselves through a disorganized and disjointed system of
    care, without assistance in the overall management of the complex
    services essential to a comprehensive regimen of care. Health care for
    those with MR, however, cannot be maintained unless and until providers
    are willing and able to manage and treat the health care of this
    population.
        Further, caregivers play a large role in ensuring that those with
    MR receive proper health care. Despite good intentions, however,
    caregivers often are not able to recognize when health care is needed,
    are not knowledgeable enough to access adequate care, and do not have
    adequate resources to relieve caregiver burden.
        When individuals with MR were deinstitutionalized and entered the
    community, the responsibility of providing health care to this
    population entered the community as well. In order to meet accepted
    standards for adequate health care for these individuals, the health
    care system will need to adapt to their diverse needs. Until that
    happens, however, providers and caregivers can play a large role in
    improving the health care of individuals with MR.

                            SUMMARY RECOMMENDATIONS

        Individuals with MR are susceptible to many of the same health
    conditions as individuals in the general population, but may experience
    more access and quality of care challenges than individuals without MR.
    Although this report identified a considerable volume of studies on the
    health of individuals with MR, most research efforts in this area are
    laden with methodological constraints. Consequently, to remediate the
    problems identified in this report, we recommend the following actions:

    Policy
        1. The U.S. federal government and national organizations must take
    a leadership role in turning the nation's attention towards the health
    of individuals with MR. For example, the President's Committee on

    Mental Retardation or the U.S. Surgeon
        General should produce a periodic report detailing the current
    health status and needs of individuals with MR. Agencies, such as the
    Arc, can play a large role in lobbying for such efforts.
        2. Presently, many individuals with MR may not be receiving health
    services because they are under-insured. To ensure that individuals
    with MR can and do access necessary services, eligibility for
    publically funded health insurance programs (e.g.,
        SSDI, CHIP and Medicaid) must be determined, and qualified
    individuals must be enrolled.
        3. Public schools are provided with a great opportunity to improve
    the health of children with MR. By law, these schools are required to
    provide an Individualized Education
        Program (IEP) to every child with MR. As part of each IEP, the
    health needs of such children should be assessed and appropriate
    services accessed.

    System of Care
        4. Individual providers are often relied on to manage the health
    care of individuals with MR. Because of the fragmented delivery of care
    in the U.S., health care payors must reimburse for integrated service
    teams with case managers, capable of managing all aspects of care over
    a long period of time.
        5. Currently, the health care system provides financial
    disincentives to work with patients with MR. The present reimbursement
    system must be modified to encourage providers to treat individuals
    with MR, and financially reimburse those who choose to work with this
    population.
        6. Providers are often ill prepared to treat individuals with MR
    because patients may not be capable of describing their medical
    histories, and the medical record system is not equipped to provide
    such information. The record system is in need of reform in order to
    address the lack of continuity of care received by this population. One
    way to do this would be to initiate a health passport system, where
    individuals with MR and their caregivers keep an ongoing record of
    their care, and are able to present it to their providers at each
    visit.

    Clinical Care
        7. One reason that the health care system does not adequately
    provide care to individuals with MR is that providers (e.g.,
    physicians, nurses, psychologists, opthamologists and dentists) do not
    feel equipped to treat them. The curricula and training for all health
    care providers should be reviewed and updated to include specific
    education on MR. This should include not only classroom hours, but also
    clinical experience with this population.
        8. Guidelines help to ensure the quality of care and to raise
    providers' confidence that they are providing appropriate care.
    Specific screening and health supervision guidelines should be
    developed for individuals with MR, addressing their special health care
    needs.

    Individuals with MR and Their Caregivers
        9. Given the shortcomings of our present health care system,
    caregivers are often relied on to coordinate the care of their charges.
    Caregivers should be provided with training, in order to help them
    understand how to recognize health problems and access appropriate
    care. Organizations such as the Arc should be enlisted as partners in
    the development of educational programs for caregivers.
        10. The viewpoint of individuals with MR is lacking in the
    discussion of the health needs of this population. Individuals with MR
    should be given the opportunity (e.g., in focus groups) to express
    their views about the health care system and ways to improve access to
    quality care.
        11. Individuals with MR should be educated about disease
    prevention, recognition of symptoms of health conditions and health
    maintenance. Developmentally appropriate teaching materials should be
    utilized with this population to promote self-sufficiency and human
    dignity.
    Research
        12. Because of the inconsistent definitions of MR used to identify
    individuals in this population, it is difficult to estimate accurately
    the number of people with MR, the health conditions that this
    population endures, or the individuals eligible for special services.
    The U.S. federal government must take the lead in developing a valid
    and reliable definition of MR, to be used for both research purposes
    and service eligibility criteria for this population.
        13. Population-based data are necessary to determine accurately the
    health needs of the whole population of individuals with MR. These data
    can be obtained by reinstituting the National Health Interview Survey
    (NHIS) question regarding MR that was removed in 1988. Consideration
    also should be given to the development of a national registry of
    individuals with MR to track their health and health care issues.
        When individuals with MR were deinstitutionalized and entered the
    community, providing health services for this population was not
    adequately planned. Individuals with MR, however, have many special
    health care needs, which increase in prevalence as they age. In order
    to improve the quality of life for individuals with MR, health care,
    among other, services, must adequately and appropriately be provided to
    this population.

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                         Additional Prepared Statements

        Senator Stevens. The subcommittee has received two prepared
    statements that will be placed in the record.
        [The statements follows:]

       Prepared Statement of Jane V. White, President, American Dietetic
                                  Association

        The American Dietetic Association (ADA) is pleased to submit
    written testimony on the health status and needs of persons with mental
    retardation. With nearly 70,000 members, ADA is the world's largest
    organization of food and nutrition professionals. Our members are
    dedicated to serving the public through the promotion of optimal
    nutritional health and well being.
        It is the position of the American Dietetic Association that
    program planning for persons with mental retardation should include
    comprehensive nutrition services as part of the health care, vocational
    and other programming offered to this population. Individuals with
    mental retardation live in and work in the community. They face the
    same problems (i.e. poverty, employment challenges and access to
    quality health care) that others in the community face. However, they
    have the additional challenge of mild to severe cognitive limitation.
    Because they may not appreciate the full implication that poor health
    practices have on health and well being, they are at increased risk for
    receiving inadequate services which can negatively impact health status
    throughout life.
        Changes in services offered to this population have limited the
    scope of and availability of nutrition services, which vary widely
    throughout the nation. With the shift to a managed care environment and
    movement from institutional to community settings, the individual with
    mental retardation often is left without the support system to
    accomplish simple tasks such as meal planning and the preparation of
    nutritious meals for themselves.

                               NUTRITION CONCERNS

        Mental retardation may be the result of identified etiologies (e.g.
    chromosomal abnormalities, anomalies, inherited metabolic disorders, or
    specific syndromes) or may be associated with a diagnosed disease or
    condition. Occasionally, persons may have two or more conditions such
    as Downs syndrome and congenital heart disease. Selected disabilities
    associated with frequently reported nutrition problems are noted in the
    table that appears on page 2.

                                                    NUTRITION PROBLEMS ASSOCIATED WITH SELECTED DISABILITIES
    --------------------------------------------------------------------------------------------------------------------------------------------------------
                                                                                                        Altered
                                                                            Altered       Altered      nutrient                                     Drug-
                                 Disability                                 growth,       energy        needs,     Constipation/     Feeding      nutrient
                                                                         underweight,      needs       nutrient       diarrhea      problems    interactions
                                                                            obesity                    deficient
    --------------------------------------------------------------------------------------------------------------------------------------------------------
    Downs Syndrome.....................................................            X             X             X              X             X
    Prader-Willi Syndrome..............................................            X             X                                          X
    Seizure Disorder...................................................                                        X                                          X
    Mental retardation of unknown etiology.............................            X             X                            X             X             X
    --------------------------------------------------------------------------------------------------------------------------------------------------------

        Healthy People 2010, the federal government's health objectives for
    the nation, notes the concerns about the nutritional status of persons
    with disabilities, including physical, mental, and developmental
    disabilities, in community settings. The nutrition objectives in
    Healthy People 2010 contain indicators for the population with
    disabilities. However, in some key areas the data on healthy food
    consumption and use of nutrition assistance programs (i.e. food stamps)
    is not available. The data is insufficient to accurately make
    projections and evaluate the status of the food assistance needs of
    this population on a national basis.
        Overweight and obesity have reached epidemic proportions in the
    United States. Individuals with mental retardation are at higher risk
    for obesity than the population as whole. Nutrition screening conducted
    by ADA members during the 1999 Special Olympics World Summer Games
    revealed that 53 percent of American athletes participating in these
    games had a body mass index (BMI) that indicated overweight and 33
    percent had a BMI that indicated obesity and were at risk for
    significant health problems. BMI is a screening tool to determine
    nutrition status and overall health and correlates with measures of
    subcutaneous and total body fat.
        Data reported from the New Jersey 2000 Special Olympics indicated
    that 33.5 percent of the adults participating in these games had a BMI
    that indicated overweight and 32.6 percent had a BMI that indicated
    obesity. In the same survey, almost two-thirds (64.4 percent) of the
    participating children screened were overweight. The children who were
    overweight were significantly more likely to have dental caries (66.7
    percent) when compared to those who were not overweight.
        The recent public forums conducted by the Alaska Governor's Council
    on Disabilities and Special Education identified diet/nutrition as one
    of the several health care barriers with which this population needed
    assistance. Inappropriate eating practices, limited mobility,
    characteristics of certain syndromes, and alteration in body
    composition are contributors of obesity. The high level of obesity in
    this population makes them particularly at risk for high blood
    pressure, type 2 diabetes, coronary heart disease, stroke, gallbladder
    disease, osteoarthritis, sleep apnea, respiratory problems and some
    types of cancer. In addition to these risks, the negative social
    consequences of obesity contribute to the quality of life challenges
    for individuals with mental retardation.
        The recent experiences of our members who participated in the
    Special Olympics World Games in Anchorage, Alaska indicate that the
    problem of obesity is not limited to the population in the United
    States, but is a problem around the globe. As our members completed
    heights and weights measurements on many of the athletes, we were asked
    by coaches not to discuss or even share the weight with the athlete.
    The concern here is the stigma associated with overweight as it impacts
    the individual's self-confidence and the chance that the individual may
    adopt a much less healthy eating behavior such as anorexia or bulimia.
    Clearly, there is a role for nutrition education in this population.
    Education on healthy eating behaviors, the importance of physical
    activity and in some situations medical nutrition therapy for
    individuals with more complicated diet-related diseases/conditions is
    required. Such services can be provided in a variety of settings, but
    should be a component of seamless health and social services offered to
    this population.
        To meet the multiple needs of persons with mental retardation
    throughout the lifespan, the American Dietetic Association recommends
    the following measures:
      --Provide nutrition services as an essential component of all
            services offered to the population with mental retardation.
      --Maintain a strong national nutrition monitoring program to provide
            accurate, reliable, timely, and comparable data to assess
            status and progress and to be responsive to unmet data needs
            and emerging issues. The national data sources (i.e. National
            Health and Nutrition Examination Survey and the Continuing
            Survey of Food Intakes by Individuals) should seek to include a
            valid sample size among the population with mental retardation.
      --Include a registered dietitian who has experience in the nutrition
            needs of persons with mental retardation in agencies developing
            policy in the areas of education, vocation, and health services
            at the federal and state levels.
      --Collaborate with providers to endure that there are policies in
            place that promote family-centered, interdisciplinary,
            coordinated, community-based and culturally competent services.
      --Encourage participation of qualified dietetics professionals on
            primary and specialty care teams and vocation, education, and
            residential programs that serves this population throughout the
            life cycle.
      --Provide the opportunity for increasing the level of nutrition
            knowledge among all health care and service providers.
      --Obtain reimbursement for Medical Nutrition Therapy, enteral/oral
            nutrition products, and feeding equipment as part of
            comprehensive health care for persons with mental retardation,
            regardless of diagnosis or living environment.
      --Enhance opportunities for individuals with mental retardation to
            participate in nutrition assistance programs (i.e. Food Stamps,
            Congregate Meal Sites)
      --Develop improved referral mechanisms between tertiary care centers
            and community-based providers programs.
      --Develop and implement content and /or field experience that
            addresses the nutrition needs of persons with mental
            retardation in undergraduate and graduate nutrition programs
            and provide specialized interdisciplinary nutrition training
            for registered dietitian.
      --Encourage a climate of health and wellness for persons with mental
            retardation throughout the lifespan.
      --Promote nutrition research in an effort to continuously improve the
            quality of care provided to those with mental retardation.
        Thank you for the opportunity to provide testimony on this
    important issue.
                                     ______

     Prepared Statement of Paul Berman, Global Clinical Director, Special
                Olympics Lions Clubs International Opening Eyes

        As the Founder and Global Clinical Director of Special Olympics
    Lions Clubs International Opening Eyes I was asked to testify before
    your committee in Alaska. However, due to time constraints, I was
    unable to do so. I thought I would share some of my experiences and
    ideas with you and your committee.
        As Global Clinical Director of Special Olympics Lions Clubs
    International Opening Eyes for the past 10 years I have witnessed the
    development of our program. We have examined 10,830 athletes, donated
    3,854 pairs of glasses and trained 1,078 eyecare providers. It has been
    a tremendous learning experience. We know that people with mental
    retardation receive inadequate vision and eye health care. Our research
    indicates that 66 percent of the athletes who we see have not had their
    eyes examined in three years. We know that 37 percent need new or
    different glasses and we even find that 18 percent of the athletes are
    wearing clinically incorrect glasses. We have also found that 18
    percent experience eye health difficulty. Approximately one-third of
    these are serious.
        Unfortunately many athletes get what we call ``the quick and
    dirty''. I am not sure that this is only the case for optometry and
    ophthalmology but also in other areas of healthcare. I, therefore, feel
    that the model that we have created which has been designed to provide
    care to the athletes has another equally important goal and that is the
    transformation of attitudes and the improvement of care. Our volunteer
    optometrists and other Healthy Athlete practitioners go back to their
    communities and become a resource for people with mental retardation
    where they are welcomed and treated with respect.
        We know that people with mental retardation receive inadequate
    vision and eye health care. One of the things that we have learned, and
    actually Dr. Block and Dr. Siperstein (their study is prepared for
    publication) have proven, is that the attitudes of healthcare
    professionals are transformed when they volunteer for a Special
    Olympics Healthy Athletes event. This is critically important because
    the attitudes of healthcare professionals effect treatment.
        If one doesn't think it matters, it doesn't matter. If one doesn't
    feel it is important to take time to ask that additional question to
    understand the person with mental retardation, one doesn't ask it.
    Because of poor attitudes and limited expectations of people with
    mental retardation many healthcare providers want them in and out
    quickly. One of the things that we know and I guarantee all of our
    volunteer optometrists is that after volunteering for a Special
    Olympics Healthy Athletes event they will never look at a person with
    mental retardation in the same way.
        One of the topics that came out in the testimony was that it is
    very important for health care professionals to have an improved
    attitude toward people with mental retardation. As far as I know no one
    can do this better than Special Olympics. I, therefore, suggest that
    the Federal Government consider funding a program enabling Healthy
    Athletes to become part of the curriculum of Healthcare Professional
    schools. By experiencing the didactic portion on clinical techniques
    and communication skills and then volunteering to be part of Healthy
    Athletes the healthcare professional will not only improve clinical and
    communication skills but they will also experience an improved
    attitude. I believe if this was a standard part of the program between
    the 3rd and 4th year of the healthcare professionals education this
    could be invaluable and really achieve some of the goals of improving
    the quality of healthcare for people with, mental retardation.
        Obviously additional work has to be done but quality is effected by
    attitude and attitude is something that can be improved by Special
    Olympics. One of the things that I guarantee all of our volunteers when
    I am giving my initial presentation is that they will never, ever look
    at a person with mental retardation in the same way after volunteering
    for one of our events. After training over 1,000 healthcare
    professionals throughout the United States, I have yet to have one of
    them say to me that this is not the case. I, therefore, think we have
    found a model that can be helpful in improving attitudes and encourage
    the government to support this program not only within the optometric
    field but also throughout all healthcare disciplines.
        Naturally, if you need a more concrete proposal I would be glad to
    do so but I just wanted to share some of my thoughts with you and the
    committee. Wishing you and all those involved in improving healthcare
    to people with mental retardation much success.

                         Additional committee questions

        Senator Stevens. Thank you very much. There will be some
    additional questions which will be submitted for your response
    in the record.
        [The following questions were not asked at the hearing, but
    were submitted to the witnesses for response subsequent to the
    hearing:]

                   Questions Submitted by Senator Ted Stevens

                       Questions Submitted to James Ervin

        Questions. The Lions Clubs International are to be commended for
    the tremendous philanthropic work that they perform internationally,
    and particularly for their support of the Special Olympics Opening Eyes
    Program. If a federal matching grant program could be created, would
    the Lions be interested in participating so that the vision care
    programs for persons with mental retardation could indeed be extended
    globally?
        Answer. It was a great honor to have the opportunity to speak
    before your subcommittee on Monday, March 5, in Anchorage. And I'm
    delighted to provide ideas on how Lions Clubs International can expand
    its vision care programs in both the USA and internationally, to focus
    on the unmet needs of mentally retarded children and adults.

                                  INTRODUCTION

        We are very excited about the clinical model used at Lions-
    sponsored Opening Eyes events at Special Olympic games. It's a highly
    replicable model that can be incorporated into our existing vision care
    programs worldwide. Additionally, our Lions Clubs International
    Foundation (LCIF) has a long history of providing grants to institutes
    serving developmentally disabled children and adults, in both the
    developing world and the USA. This means we have the immediate
    opportunity to increase vision care services for this particularly at-
    risk population through our worldwide network of projects.

                                 RECOMMENDATION

        To expand eye care services for this population, we propose
    ``Special Vision for Special People,'' a program that will combine
    Lions' existing sight services and our work with special needs
    organizations into one initiative. The key components would include:
        Expansion of Opening Eyes Model.--Lions Clubs International
    presently supports the work of more than 250 institutes and programs
    worldwide that serve mentally and physically-challenged populations.
    These include sheltered workshops and vocational training centers in
    the USA, residential institutes for disabled children in developing
    countries, as well as various special education schools. The clinical
    model used at the Opening Eyes events, including the personnel already
    trained in that program, can be scaled up to provide vision care
    services at these institutes. Funding to train additional optometrists
    and eye care workers on the special techniques, and equipment, would be
    the only needed outlays.
        Expand Opening Eyes Model to Lions camps for the disabled.--In
    nearly all 50 states and in more than a dozen countries, Lions operate
    summer camps for persons with mental and physical disabilities. More
    than 15,000 children attend these camps each year, and like the data
    uncovered on Special Olympic athletes, most are not receiving
    appropriate eye care services. These camps would provide a ready-made
    channel to reach more children in need if additional funding was
    available.
        Expand vision care for families with special needs in the USA.--At
    present, virtually all our 14,000 Lions clubs in the USA are
    underwriting eye exams and eyeglasses for the needy and working poor.
    Since most private insurance programs and even many state-assisted
    programs do not fund general eye care and eyeglasses, Lions clubs are
    often the only safety net for these people, many of whom are children.
    We can quickly expand the efforts of these 14,000 Lions clubs to
    subsidize eye exams and eyeglasses for children and adults who have a
    verified developmental disabilities and who do not qualify for other
    assistance. This can be done through a voucher-type program
    administered by LCIF without any need to increase or invest in new
    vision care services--it's simply a matter of these persons gaining
    access to existing services.
        Expand Low Vision Services for the disabled.--LCIF recently stepped
    up its grant-making in the area of low vision services and
    rehabilitation to deal with the increased incidence of vision
    impairment among children and seniors. Advances in life-expectancy have
    increased the number of people with permanent vision impairment
    stemming from diabetic retinopathy, glaucoma and macular degeneration--
    diseases which are among the major causes of disability in older
    adults. The need to expand low vision services for children is being
    driven by increased survival rates of premature infants, the vast
    majority of whom are plagued by vision disorders and other
    developmental delays.
        We are presently funding state-wide expansion of low vision
    services in Illinois, Oregon, Washington State, West Virginia and are
    also funding similar projects in the Dominican Republic and India. We
    could double or triple our impact, and expand this effort to other
    states/countries, with the help of federal matching funds. We
    collaborate with the best agencies in the world for this work,
    including the Lighthouse for the Blind in New York and with Johns
    Hopkins University, where a major Lions Low Vision Clinical Center is
    located.

      JUSTIFICATION FOR REQUEST--WHY WORK WITH LIONS CLUBS INTERNATIONAL?

        Lions Clubs International presently runs the world's largest global
    blindness prevention program, called the SightFirst initiative, which
    focuses on eliminating the causes of avoidable blindness--presently, 4
    out every 5 cases of blindness are unnecessary (World Health
    Organization, 1997). LCIF raised $146 million for this initiative from
    Lions between 1991-94, of which $105 million has been granted to 509
    projects in 76 countries. Our technical partner is the World Health
    Organization and some key project partners include The International
    Agency for the Prevention of Blindness and The Carter Center. Thus far,
    the SightFirst program has strengthened eye care delivery systems
    throughout the developing world and the results have been noteworthy:
      --2.5 million cataract surgeries have been performed on the needy
      --9 million people suffering from river blindness are receiving the
            drug Mectizan annually, which is \1/3\ the total of people
            being treated worldwide
      --4 regional ophthalmic training centers have been developed at
            leading eye hospitals and public health institutes in Africa,
            South Asia and SE Asia. More than 2,900 eye care workers have
            been trained thus far
      --82 eye hospitals have been built or expanded
      --250+ eye centers have received technical assistance and upgraded
            training
        Senator Stevens, we have the experience and the technical know-how
    to expand eye services to developmentally-disabled populations. We have
    been doing this since 1917, often without recognition and rarely with
    government funding. We sincerely hope that President Bush's emphasis on
    funding faith-based and community-based organizations, and ``putting
    trust in local people,'' applies to civic groups such as Lions Clubs
    International.
        We are the world's largest volunteer service club organization with
    1.4 million members, including 453,000 in the USA. We have a track
    record of commitment to protecting the eyesight of those in need and
    have the capability of scaling up these programs with minimal overhead.
    The Lions Clubs International Foundation has administrative expenses
    that average only 9 percent over the last five years, a ratio which is
    among the best in the nonprofit industry. The majority of any federal
    matching funds would be directly invested in service delivery, not in
    administration. We would not only match federal funding dollar-for-
    dollar but would add extensive in-kind resources through our volunteer
    base.

                                   NEXT STEPS

        We would be pleased to present a formal proposal and would welcome
    any direction from your committee. We are also prepared to meet with
    your committee or staff members in Washington to discuss this
    opportunity in more detail. Thanks again for the opportunity to share
    our ideas and for your interest in the work of Lions Clubs
    International.
                                     ______

                   Questions Submitted to Dr. Timothy Shriver

        Question. Special Olympics has unique experience in working with
    people with mental retardation relative to their participation in
    sports and to their receiving certain needed health care services. What
    could be accomplished toward meeting the health care needs of persons
    with mental retardation if an additional $3 million could be made
    available for programs and/or services to support this population? What
    could be achieved over five years if sustained additional resources
    could be brought to bear?
        Answer. As I mentioned in my testimony, Special Olympics has been
    compelled to take a lead role in promoting the health of persons with
    mental retardation because others in the health and disability sectors
    have not made it a high priority. For more than three decades, Special
    Olympics has developed and implemented programs in sports training and
    competition for individuals with mental retardation. The health
    benefits of sports training and competition for those with mental
    retardation are widely acknowledged by family members and professionals
    in the fields of mental retardation, health and sports.
        In recent years, Special Olympics has addressed the health needs of
    its athletes more directly through its Special Olympics Healthy
    Athletes Program and its Research and Evaluation Initiatives.
        The objectives of the Special Olympics Healthy Athletes Program are
    threefold: To improve access and health care for Special Olympics
    athletes at event-based health screening clinics; to train health care
    professionals and medical students about the needs and care of people
    with mental retardation; and to collect and analyze data on the health
    conditions of people with mental retardation. Special Olympics Healthy
    Athletes provides health assessment, health education, disease
    prevention, and in many cases, corrective health care for Special
    Olympics athletes
        So although we are a sports organization, we also believe that our
    role is to help define the health challenges of persons with mental
    retardation, to participate in the development of health promotion
    polices for them, to serve an advocacy role, to implement health
    screening and prevention programs that our athletes can readily access;
    and to make competent referrals to established sources who will
    willingly provide quality follow up care.
        Specifically, if a single year appropriation of $3 million were
    made available, Special Olympics would undertake the following:
        Expansion of the Special Olympics Special Smiles Program in all
    states, and down to the sub-state (regional) and metropolitan level. It
    costs $50 to screen each athlete for oral health. Accordingly, we could
    make oral health services available to approximately 60,000 additional
    athletes in dozens of additional locations.
        Establishment of innovative community based models to enhance the
    delivery of definitive oral health services to Special Olympics
    athletes needing follow up care. In Egypt, our Healthy Athletes Program
    is delivered in part, by a specially outfitted van that travels to
    training and competition sites. We should pilot that delivery system in
    the United States.
        Training of approximately 400 health professionals about the health
    needs of persons with mental retardation and special approaches for
    delivering quality care.
        Creation of a web based provider registry of health professionals
    who are willing and qualified to provide health services to persons
    with mental retardation, so that persons with mental retardation, their
    families and advocates could identify accessible, appropriate sources
    of care.
        Expansion of the Special Olympics Healthy Hearing ($110 per athlete
    screened) and Fun Fitness ($25 per athlete screened) programs beyond
    the pilot stage so that in the majority of states, such services would
    be available to Special Olympics athletes.
        Development of a targeted, appropriate health promotion program for
    persons with mental retardation and stage one testing in six pilot
    states.
        Targeted studies to better characterize the specific health care
    needs of sub-populations of persons with mental retardation, as well as
    studies to elucidate the barriers to persons with mental retardation
    receiving needed care.
        If such funding could be sustained over a five-year period, with
    adjustments for maintaining newly expanded services, a full range of
    Special Olympics Healthy Athletes screening programs could be
    established in all states. Additionally, a cadre of thousands of health
    professionals would have been created through specialized training
    offered through Special Olympics. In short, the situation for tens of
    thousands of persons with mental retardation relative to accessing
    needed health care services would have been dramatically enhanced.
        Question. How large a role would Special Olympics be prepared to
    play in such an undertaking?
        Answer. Because of the importance of health issues to the
    functioning, dignity and quality of life for persons with mental
    retardation, and to their ability to have a healthy sports experience,
    Special Olympics would willingly commit to expending our Healthy
    Athletes programs with passion and a commitment to excellence. We
    believe that we bring unique knowledge, skills and perspectives to the
    service of persons with mental retardation at the grass roots level. In
    truth, we have not been able to identify a more likely source of
    leadership for these issues. With federal resources, we would improve
    the quality and length of life for people with mental retardation in a
    cost-effective, manner.
        Question. Do you believe that there is a role for the public
    schools in addressing the health deficits of school-aged children with
    mental retardation?
        Answer. I do believe that there is a role for the public schools in
    addressing the health deficits of school-aged children with mental
    retardation. First we need to identify the specific health needs for
    such students. Including a health assessment as part of an Individual
    Education Plan (IEP) would be a logical approach, since such plans
    already are mandated by law, schools are familiar with them, and health
    and the readiness and ability to learn are clearly linked. Because
    children with mental retardation who attend public schools may have
    extremely challenging home situations, linking students needing health
    care services to providers through school mediated mechanisms may be
    quite practical and cost effective.
        Further, there are disturbing trends nationally regarding the
    health and fitness of school aged children. In fact, numerous health
    leaders, including the Surgeon General have declared overweight and
    obesity in American youth to be an epidemic that will produce dire
    health consequences for our population in the coming years. Moreover,
    there has been a continuing decline in participation in regular school
    based physical activity by students in all grades.
        I would suggest that schools are an ideal setting for establishing
    Special Olympics sports programs that could produce sports
    opportunities for youth with and without mental retardation. Special
    Olympics Unified Sports is an innovative community based
    approach that could benefit schools, students and the nation. I
    recommend that such an approach be considered in addition to the health
    screening and associated approaches I identified in my previous
    responses. Consistent with this, a separate funding stream would be
    appropriate. One might consider challenge grants to schools willing to
    partner with a local Special Olympics Program on a matching formula
    basis--i.e. the Special Olympics Program would receive a grant and the
    partner school would receive a grant. Both programs would offer in-kind
    and other available resources to the partnership.
                                     ______

                    Questions Submitted to Dr. Steve Perlman

                               IMMEDIATE ACTIONS

        Question. What are the most important actions that could be taken
    immediately in order to have the greatest impact on the oral health of
    persons with mental retardation?
        Answer. Dental care reimbursement rates for children with mental
    retardation should be indexed to rates that are market relevant.
    Several recent federal studies document that Medicaid dental rates in
    the states are so low that most dentists will not seriously consider
    participating. OBRA 1989 had provision for certain types of essential
    health services to be reimbursed at rates that can be demonstrated to
    produce desired outcomes--namely, receipt of certain types of services
    (did not include dental) by at-risk individuals.
        Ultimately, rates that parallel local Usual and Customary (UCR)
    plus an incentive factor (say 5-10 percent) for additional time and
    costs that may be involved will be necessary to attract providers. This
    could be characterized as a case complexity adjustment factor, a time
    requirement adjustment factor, or simply a targeted incentive to
    address underutilization. The impact of rate enhancement could be
    tracked readily. Alternatively or additionally, Medicare, which
    includes virtually every health service other than dental, could add
    dental services for individuals with mental retardation at rates that
    are more market relevant than current Medicaid rates. States set
    Medicaid rates and have a long history of underpaying, resulting in few
    providers participating and only one-in-five eligible children
    receiving any dental services per year. The Medicare approach
    additionally could prevent people with mental retardation/disabilities
    from aging out of dental care, which is the unfortunate case with
    current state Medicaid programs.
        Provide incentive funds for hospitals to establish special patient
    care programs.
        Support targeted training programs in dental schools to properly
    train and indoctrinate students regarding the care of persons with
    metal retardation. Also, clinic support grants should be offered if the
    schools treat a certain volume of patients with mental retardation. If
    appropriate, given Special Olympics' unique experience, these grants
    could be funneled through Special Olympics, Inc.
        A high level meeting with organized dentistry (ADA) or a targeted
    congressional hearing to secure their acknowledgement of the inadequacy
    of available care for persons with mental retardation and to gain their
    commitment to study the problem and develop specific solutions.
    Currently there is little evidence of their direct interest and
    investment in this issue.
        For individuals who are being de-institutionalized into a group
    home or community residence, laws should mandate that an oral
    assessment and necessary follow-up care be arranged prior to the
    outplacement so that individuals do not drift out of a system of care
    already at risk.

                     DENTAL EDUCATION/DENTAL PROFESSIONALS

        Question. What specifically needs to be done with dental
    professionals and dental schools to address your concerns?
        Answer. Currently there are no requirements in predoctoral dental
    education for the care of patients with special needs. Studies in 1993
    and 1999 demonstrated a woeful inadequacy in the number of hours of
    both didactic and clinical experience that dental schools offer to
    students. The same holds true for dental hygiene students. Efforts to
    secure a response to this issue have been futile, therefore
    establishing minimum requirements in predoctoral education for the care
    of patients with special needs for dental and hygiene schools as a
    component for accreditation is essential.
        Establish dentistry as a mandated discipline for all federally
    funded University Affiliated Programs (UAP).
        Expand accreditation requirements for the care of patients with
    special needs in General Practice Residency (GPR) and Advanced
    Education in General Dentistry (AEGD) programs to all specialties
    programs.
        Provide incentive funds for dental schools to establish predoctoral
    programs for the care of patients with special needs.
        Fund residency (post-doctoral training) programs for the care of
    patients with special needs (including stipends for fellows).
        Offer student educational debt reduction in return for care of
    patients with special needs. This could be implemented through the
    states.
        Given that pediatric dentists are the principal providers of dental
    care for most children and many adults with mental retardation, the two
    decade decline in graduate pediatric training slots for individuals
    intending to practice in the U.S. must be reversed. Targeted grants to
    dental schools will be required.

                                   RESOURCES

        Question. If additional resources could be directed toward
    resolving the oral health concerns raised before this Committee, how
    and where should they be directed?
        Answer. We have to acknowledge that most practitioners have not
    been willing to treat patients with disabilities. As an example, in the
    past year, a survey was sent to all dentists in Massachusetts
    describing the crisis in access to care and whether they would be
    willing to treat people with disabilities. Over 5,000 requests were
    sent and several follow-up mailings were carried out. Only 249 positive
    responses were obtained. Out of these, only 61 would accept MassHealth
    (Medicaid). Therefore, we need to develop locations, facilities, and
    clinics committed to providing care for people with special needs.
        Establish programs to develop and/or improve dental education
    programs for staff of community residential facilities (realizing staff
    turnover in group homes can be 80 percent per year).
        State Boards of Dentistry should mandate that practitioners take
    some courses in special patient care as with other high priority
    continuing professional education areas (e.g. infection control, CPR,
    child abuse, etc.).
        Fund projects that will:
        1. Improve access to care, including transportation programs to get
    people to sources of care; and,
        2. Provide information about the specific oral health problems that
    people with disabilities face.
        That is what Special Olympics Special Smiles is trying to address.
    We are working on establishing and maintaining a data base of providers
    willing to treat people with disabilities. Our screening program
    collects standardized data utilizing a Centers for Disease Control and
    Prevention Protocol. This will provide us with the knowledge of
    specific oral health problems of people with mental retardation. With
    this knowledge and additional resources, including improved
    reimbursement rates for providers, we can begin to seriously address
    the unmet need for dental care for persons with mental retardation.
                                     ______

                    Questions Submitted to Dr. David Satcher

        Question. I am pleased that you have decided to convene a Surgeon
    General's conference on the health status and needs of persons with
    mental retardation and to produce a conference report. What other
    programs and agencies should be lead participants in this undertaking
    and when do you anticipate this conference will take place?
        Answer. We are developing the SG's workshop on the Issues of
    Persons with Mental Retardation. The conference will include input from
    a broad cross section of interested parties from federal, state and
    local organizations. In addition to representatives from DHHS, the
    Department of Education will be invited. Those concerned about the
    health needs of people with mental retardation including youth and
    family members, professional organizations and associations, advocacy
    groups, faith-based organizations, clinicians, educators, healthcare
    providers, and members of the scientific community will also be
    invited.
        Question. Do we need specific national health objectives for
    persons with mental retardation for the Year 2010? How will you go
    about establishing such objectives?
        Answer. At this time, Healthy People 2010 does not include specific
    measures for people with mental retardation. Baseline data is used to
    develop each objective in HP 2010. As baseline data become available
    for objectives on mental retardation, new measures could be considered
    for HP 2020. Developmental objectives can be initiated as a product of
    our workshop.
        Question. What role can you play with the professional disciplines
    in order to get them to respond to the various issues that have been
    raised concerning the barriers that health care providers place in the
    way of persons with mental retardation being healthier?
        Answer. There is a clear need to better train physicians to address
    the needs of children with mental retardation. The first step in
    educating health care professionals about the health care needs of
    people with mental retardation will be our upcoming workshop in which
    key professional organizations or disciplines will be represented. We
    anticipate the workshop will result in a Workshop Report or Call to
    Action, which will include specific recommendations to eliminate the
    barriers to health care services experienced by people with mental
    retardation.
        Question. Healthy People 2010 calls for closing the gap in health
    literacy as a principal strategy for reducing health disparities. How
    can we create opportunities to increase the health literacy of people
    with mental retardation?
        Answer. This will be one of the topics discussed at the Surgeon
    General's workshop. One of the goals of the Special Olympics is to
    increase health literacy among competing athletes through its healthy
    athletes program, which includes oral, hearing, and vision screenings
    and information on maintaining a healthy lifestyle. One of our workshop
    goals will be to find ways to build on the success the Special Olympics
    has already achieved and to develop better communication strategies for
    working with persons with mental retardation.
        Question. The Children's Health Act established a National Center
    on Birth Defects and Developmental Disabilities at the CDC. In your
    opinion, is it adequately funded? If not, what funding level would you
    recommend based the needs identified in the report?
        Answer. We would like to assist states and/or universities working
    with CDC to collect and report data on the prevalence of mental
    retardation at the state or regional level and to use this data as a
    foundation for collaborative studies into causes of and risk factors
    for mental retardation. When preventable causes are known, these states
    or universities should work with CDC to develop, test, and implement
    prevention strategies and evaluate the effectiveness of these
    strategies.
        To that end, the President's budget request, which includes a $10
    million programmatic increase for CDC's Birth Defects and Developmental
    Disabilities Account for fiscal year 2002, will permit CDC to begin to
    address these challenges.
        Question. The report finds that the health care system provides
    financial disincentives for physicians and other care givers to work
    with patients with mental retardation. Do you agree? What can be done
    to rectify this situation?
        Answer. This will be one of the topics discussed at the SG's
    workshop. We need to find ways to minimize the complexity of paper work
    required and adequately reimburse physicians for their services. We
    would like to get input from relevant stakeholders on this topic and to
    identify incentives for improving care.
        Question. Special Olympics commissioned the Yale study because
    there is a woeful lack of data on the health status and needs of people
    with mental retardation. What can the U.S. Public Health Service do to
    remedy the lack of information on the health of this population?
        Answer. A large barrier to addressing the specific health needs of
    people with mental retardation is the lack of available data. The
    Public Health Service, through the new Center on Birth Defects and
    Developmental Disabilities at CDC, has begun to work with a limited
    number of states to develop systems to monitor and track the health
    status of persons with mental retardation and other disabilities.

                             CONCLUSION OF HEARING

        Senator Stevens. Thank you all very much for being here,
    that concludes our hearing.
        [Whereupon, at 11:55 a.m., Monday, March 5, the hearing was
    concluded and the subcommittee was recessed, to reconvene
    subject to the call of the Chair.]