[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


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                                 senate

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                      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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 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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other mentally handicapped children. Br J Ophthalm. 1967;51:469-474.
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developmentally disabled and multi-handicapped in University Affiliated 
Programs (UAPs). J Am Optom Assoc. 1992;63:619-625.
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correction of refractive errors among mentally retarded adults in a 
central institution. Acta Ophthalmologica Scandinavica. 1995;73:129-
132.
    16. Hestnes A, Sand T, Fostad K. Ocular findings in Down's 
Syndrome. J Ment Defic Res. 1991;35:194-203.
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and intelligence test scores. Am J Optom and Rch Am Acad Optom. 
1959;36(1):12-21.
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Pediatr Ophthalmol Strabismus. 1985;22:231-233.
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1989;66(1):12-16.
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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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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.]

                                  
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