[Senate Hearing 107-92]
[From the U.S. Government Publishing Office]
S. Hrg. 107-92
SPECIAL OLYMPICS REPORT
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HEARING
before a
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE
ONE HUNDRED SEVENTH CONGRESS
FIRST SESSION
__________
SPECIAL HEARING
MARCH 5, 2001--ANCHORAGE, ALASKA
__________
Printed for the use of the Committee on Appropriations
Available via the World Wide Web: http://www.access.gpo.gov/congress/
senate
______
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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
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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
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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
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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.
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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.
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\2\ World Health Organization (WHO): World Heath Statistics
Annuals. Vols. 1990-1996. Geneva; United Nations. 1997.
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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.
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\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.
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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.
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\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.
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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\
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\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.
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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.
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\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.
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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.
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\8\ Special Olympics, Inc. Strategic Research Symposium Papers.
Pittsboro, North Carolina, June 24-25, 1999.
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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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94. Wyatt v. Stickney, 325 F. Supp. 781 (M.D., Ala. 1971).
95. Yeargin-Allsopp M, Murphy CC, Cordero JF, Decoufle P, Hollowell
JG. Reported biomedical causes and associated medical conditions for
mental retardation among 10-year old children, Metropolitan Atlanta,
1985-1987. Dev Med Child Neuro. 1997;39:142-149.
96. Zigler E. Cultural/familial mental retardation: A continuing
dilemma. Science. 1967;155:292-298.
97. Zigler E, Balla D, Hodapp R. On the definition and
classification of mental retardation. Am J Ment Def. 1984;89:215-230.
98. Zigler E, Hodapp R. Understanding Mental Retardation. 1986.
99. Zigler E. The Definition and Classification of Mental
Retardation. Upsala J Med Sci. 1987a;Suppl.:1-10.
100. Zigler E. Concluding Remarks to Section II. Upsala J Med Sci
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101. Zigler E, Hodapp R. Behavioral functioning in individuals with
mental retardation. Ann Rev Psychol. 1991;42:29-50.
Chapter 2.--Physical Health Conditions Contributing to the Morbidity
and Mortality of Individuals With Mental Retardation
INTRODUCTION
For the purpose of this report, physical health conditions refer to
chronic conditions that are common causes of death (such as
cardiovascular diseases, cancer, diabetes, lung diseases, and
unintentional injuries), risk conditions related to these chronic
diseases, and childhood conditions and prevention measures that
influence the long-term health and functioning of individuals (such as
otitis media, pediatric asthma, child maltreatment and immunizations).
Other physical health conditions, such as ocular and oral health
conditions, are not included in this definition, and will be discussed
in separate chapters.
Lacking large population-based studies, evidence documenting the
prevalence of these physical health conditions among individuals with
MR comes primarily from small community registries or administrative
data from outpatient clinics or residential facilities. Since many
individuals with MR do not receive services on a regular basis
(Howells, 1986; Singer et al., 1986), however, studies using outpatient
samples may underreport the prevalence of health conditions that do not
always prompt medical interventions. Conversely, prevalence estimates
from institutions may overreport the prevalence of certain health
conditions, because those in hospitals or long-term residential
settings are generally the most severely physically impaired and are
likely to be monitored at regular intervals (Eyman et al., 1986).
Prevalence estimates are also affected by the identification of
symptoms, either by the individuals with MR or by the caregiver. Often
limited in communication skills, individuals with MR rely on caregivers
to identify symptoms and report them to providers. Providers, then,
must detect clinical manifestations of disease among individuals who
lack communication skills to provide descriptions of symptoms.
Consequently, syndromes based largely on reported symptoms rather than
physical signs or specific routinely administered tests may also be
underidentified.
MORTALITY AND MORBIDITY
Despite overall gains in life expectancy, gaps still exist between
individuals with MR and individuals in the general population. In
Western Europe and the United States, the overall life expectancy at
birth is 74.0 to 76.5 years and life expectancy at 65 years is 81.7 to
82.7 years (Hoyert et al., 1997; WHO, 1997). In contrast, individuals
with mild or moderate MR have an average life expectancy at 45 of 66.1
years, while those with severe MR have an average life expectancy at 45
of 53.6 years. Thus, the life expectancy of individuals with MR
decreases with increased severity of MR and increased severity of
physical impairments (Janicki et al., 1999; Eyman et al., 1990; O'Brien
et al., 1991; Eyman et al., 1993), suggesting that those with mild or
moderate MR have different health trajectories than those with severe
or profound MR.
Further, life expectancy may be related to place of residence,
although the results of the research are inconsistent. Hayden (1998)
points out that some researchers have documented higher mortality rates
among individuals with MR in institutions compared with those in the
community, while others have suggested that individuals in the
community have higher mortality rates (Strauss et al., 1998).
Living longer than individuals with severe MR, those with mild or
moderate MR are more likely to have age-related health conditions
similar to the general population. With a few exceptions, the
prevalence of physical health problems (including cardiovascular
disease, cancer, cerebrovascular disease, lung conditions and diabetes)
of individuals with MR is similar to that of the general population.
This chapter will focus on the health conditions of adults and children
with MR and specific health problems prevalent in individuals with Down
Syndrome. The health problems selected for review were based on the
leading causes of death in the U.S. population and the health
priorities of Healthy People 2000 and Healthy People 2010 (U.S. DHHS
1990, U.S. DHHS 2000a).
Adult Health Conditions
According to the National Center for Health Statistics (NCHS), the
most common causes of death in the United States include cardiovascular
diseases, malignant neoplasms or cancer, cerebrovascular diseases, lung
diseases, diabetes and unintentional injuries (Hoyert et al., 1999).
Not surprisingly, the U.S. has made the prevention and treatment of
these conditions a priority in Healthy People 2000 and Healthy People
2010 (U.S. DHHS 1990, U.S. DHHS 2000a). These same conditions also
impair the health of individuals with MR. The most common causes of
death among individuals with MR are cardiovascular diseases,
respiratory illness and neoplastic conditions (Thase, 1982; Carter and
Jancar, 1983; Dupont et al., 1987; O'Brien et al., 1991; Hayden 1998;
Strauss et al., 1998; Janicki et al., 1999; Chaney and Eyman, 2000).
This section will review the prevalence of these conditions among
adults with MR.
Cardiovascular Disease
Cardiovascular disease is the leading cause of death in the U.S.
and internationally, accounting for 31.4 percent of deaths in the U.S.
general population and 30.9 percent of deaths in World Health
Organization (WHO) member states (Hoyert et al., 1999; Turner and Moss,
1996; WHO, 1999). Manifestations of cardiovascular disease, including
myocardial infarction, angina pectoris and sudden death, affect nearly
59.7 million individuals or 21.9 percent of the U.S. population each
year (U.S. DHHS, 2000b). Consequently, Healthy People 2000 and Healthy
People 2010 have heart disease as a priority area for health
improvement in the U.S. (U.S. DHHS, 1990; U.S. DHHS 2000a).
As individuals with MR age, they suffer the same risk of
cardiovascular disease as the general population. Cardiovascular
disease is one of the most common causes of death among individuals
with MR, accounting for 10.3 percent to 50.0 percent of deaths
depending on the population studied (Carter and Jancar, 1983; Dupont et
al., 1987; O'Brien et al., 1991). Prevalence estimates of
cardiovascular disease in individuals with mild or moderate MR living
in the community range from 6.7 percent to 55.2 percent, with
individuals being at increased risk of disease as they age (Minihan,
1986; Minihan and Dean 1990; Janicki and Jacobson, 1986 and Badry et
al., 1989 in Day and Jancar, 1994; Beange et al., 1995; Hand and Reid,
1996; van Schronjenstein Lantman-de Valk et al., 1997; Cooper 1998;
Kapell et al., 1998). In addition, individuals with Down Syndrome are
three to four times more likely to have cardiac conditions compared
with individuals without Down Syndrome (Thase 1982; van Schronjenstein
Lantman-de Valk et al., 1997; Kapell et al., 1998).
The prevalence estimates of cardiovascular disease, however, are
lower among individuals with profound MR living in institutions
(O'Brien et al., 1991; Turner and Moss, 1996). For example, O'Brien et
al. (1991) found that 30 percent of all deaths among individuals with
profound MR were related to heart disease compared with 44.4 percent
among individuals with mild to moderate MR. If the lower prevalence is,
in fact, real, it may be related to either lifestyle factors that
influence blood pressure, cholesterol levels, obesity, cigarette
smoking and physical activity (Pitetti and Campbell, 1991; Turner and
Moss, 1996), or the fact that among the institutionalized, those who
live longer are healthier. Alternatively, the difference may be due to
incomplete measurement of the conditions under study. For example,
Ziring et al. (1988) pointed out that 8.9 percent of those recently
deinstitutionalized had previously undetected cardiac conditions,
suggesting that cardiac conditions may be underdiagnosed among
individuals in institutions.
Cancer
The second leading cause of death in the U.S. and the United
Kingdom (U.K.) is cancer, accounting for 23.3 percent of deaths in the
U.S. and 25.0 percent of deaths in the U.K. (Hoyert et al., 1999;
Turner and Moss 1996). Cancer deaths are primarily attributable to lung
cancer (49.5 per 100,000), breast cancer (25.6 per 100,000 women),
prostate cancer (25.4 per 100,000 men) and colorectal cancer (17.6 per
100,000) (Ries et al., 2000). In the U.S., nearly 40 percent of
individuals are diagnosed with cancer during their lifetime (U.S. DHHS,
1998). The most commonly diagnosed cancers are prostate (149.7 per
100,000 men), breast (109.7 per 100,000 women), lung (55.2 per 100,000)
and colorectal (43.9 per 100,000) (Ries et al., 2000). Because cancer
affects so many individuals in the U.S., the Surgeon General made early
detection, treatment and prevention of cancer a national priority in
Healthy People 2000 and Healthy People 2010 (U.S. DHHS, 1990, U.S.
DHHS, 2000a).
Cancer is also a health concern among individuals with MR. Cancer
is among the most common causes of death among individuals with MR,
with estimates ranging from 7.4 percent to 34.0 percent depending on
the population studied (Carter and Jancar, 1983; Dupont et al., 1987).
In fact, after adjusting for age, the prevalence of most cancers among
individuals with MR living in the community is thought to be similar to
that found in the general population. For example, in a study of the
prevalence of cancer among older community residents with MR in the
Netherlands, Evenhuis (1997) found cancer prevalence estimates similar
to those in the Dutch population. He found that 22.9 percent of
individuals with MR were diagnosed with cancer, including breast,
prostate, lung, gastrointestinal and skin cancers.
One exception to these similar trends is among individuals with
Down Syndrome (Jancar and Jancar, 1977; Turner and Moss 1996; Scholl et
al., 1982; Baird and Sadovnick, 1988; Franceschi et al, 1991; Hasle et
al., 2000). For example, in a recent study examining the prevalence of
leukemia and solid tumors in the Danish Cancer Registry, Hasle et al.
(2000) found that children with Down Syndrome are more likely to have
leukemia compared with children of the same age in the general
population (children ages 0-4 years, standardized incidence ratio:
56.4; children ages 5-19 years, standardized incidence ratio: 7.7).
Individuals with Down Syndrome, however, were half as likely to have
solid tumors compared with the general population, even after adjusting
for age.
In contrast to community-based studies, in one institution in
England, Cooke (1997) found that 13.6 percent of all deaths were due to
cancer, an overall prevalence rate that was lower than the 26 percent
found in the general population in England during the same time period.
Although age- adjusted estimates were not presented, the prevalence of
cancer among individuals with MR declined during a time when longevity
increased in this population, suggesting that decreased life expectancy
did not explain the lower prevalence of cancer among individuals with
MR. Another important finding from this study was that the types of
cancer varied between individuals with MR in the institution and those
in the general population. In contrast to the leading cancer deaths in
the general population, they found very few deaths due to lung, breast
or prostate cancer; rather this study found a high proportion of
gastrointestinal cancer among individuals with MR (55 percent in the MR
population versus 26 percent in the general population). The high
prevalence of gastrointestinal cancer was thought to be related to
gastrointestinal reflux and chronic constipation that is common among
individuals with MR living in institutions. Others have also documented
a high prevalence of gastrointestinal cancer among individuals with MR
in institutions (Jancar and Jancar, 1977).
The prevalence of cancer is also associated with severity of MR. In
the U.S., O'Brien et al. (1991) found that among those individuals
living in one southeastern residential facility, those with mild or
moderate MR were more likely to die of cancer than individuals with
profound MR. Additional studies examining the prevalence of cancer in
the U.S. are limited. One study that examined mortality in 14
individuals with MR in the community provided anecdotal evidence that
one of the 14 individuals died of undetected cervical cancer, a
potentially avoidable cause of death (Kastner et al., 1993).
Cerebrovascular Disease
Cerebrovascular disease is a common term to describe ischemic and
hemorrhagic strokes or transient ischemic attacks that result in a lack
of blood flow to the brain. This disease is the third leading cause of
death in the U.S. (Hoyert et al., 1999), with an estimated 731,000
incident (first time) strokes each year (Sacco et al., 1999). It is one
of the most prevalent conditions among individuals 65 and older in the
U.S. (NSA, 1999; U.S. DHHS, 2000a). In fact, more than 4 million or 4.3
percent of Americans 45 years and older are living with the effects of
stroke (NSA, 1999). Like cardiovascular disease, the detection,
prevention and treatment of cerebrovascular disease has been a national
priority in Healthy People 2000 and Healthy People 2010 (U.S. DHHS,
1990; U.S. DHHS, 2000a).
Since the population of individuals with MR is aging, the risk of
cerebrovascular disease, like that of cardiovascular disease and
cancer, is increasing in this population (Turner and Moss, 1996). Few
studies, however, have examined the prevalence of stroke among
individuals with MR. In a community-based study in England, Cooper
(1998) documented a cerebrovascular disease prevalence of 9.0 percent
among individuals with MR 65 years and older, which she noted to be
greater than that of the general population (although general
population estimates were not provided). No individuals with MR under
65 years of age who participated in the study had a cerebrovascular
disease. In another community-based study of 70+ year olds in the
Netherlands, Evenhuis (1997) found that 2.8 percent of individuals with
MR reported a history of stroke, a prevalence estimate similar to that
in the general population. Although it is unclear whether individuals
with MR are more likely to have a stroke compared with the general
population, it is clear that the aging MR population faces a serious
risk of cerebrovascular disease.
Chronic Obstructive Pulmonary Disease (COPD) and Other
Respiratory Conditions
Chronic obstructive pulmonary disease (COPD) is used to describe
two respiratory conditions, chronic bronchitis and emphysema. Both
conditions cause a shortness of breath and coughing that gets worse
over time. COPD and other respiratory conditions, such as pneumonia and
influenza, are the fourth and sixth leading causes of death in the
U.S., respectively. COPD accounts for 4.7 percent of all deaths and
pneumonia and influenza account for 3.7 percent of all deaths in the
U.S. (Hoyert et al., 1999). According to the U.S. National Heart, Lung
and Blood Institutes, over 13.5 million Americans report having COPD
(5.1 percent of the U.S. population) (U.S. DHHS, 1995). Pneumonia and
influenza have seasonal variations reaching their peak prevalence in
winter. They are more commonly reported among the elderly and
individuals with chronic health problems than among young, healthy
individuals (CDC, 2000). In the year 2000, the U.S. Centers for Disease
Control and Prevention reported a prevalence of 33 percent of
individuals infected with influenza (CDC, 2000). Western European
studies find a similar prevalence of COPD, pneumonia and influenza
(Lung and Asthma Information Agency, 1995; WHO, 1999).
Most of the reviewed studies of individuals with MR report
prevalence estimates of general respiratory conditions, inclusive of
COPD and respiratory infections, although a few research efforts have
focused on COPD or other specific respiratory conditions. Increased
prevalence of respiratory conditions, and infections in particular,
have been shown to be associated with increased age, institutional
residence, severity of MR and severity of physical impairment. For
example, studies conducted in the community and in institutions have
shown that the probability of having a respiratory condition increases
linearly with age (Janicki and Jacobson, 1986 in Day and Jancar, 1994);
Day, 1987 in Day and Jancar, 1994).
Additionally, there is a higher prevalence of respiratory
conditions among individuals 45 years and older living in institutions
(1.1 percent to 33 percent) (Nelson and Crocker, 1978; Rubin, 1987;
Day, 1987 in Day and Jancar, 1994; Minihan, 1986; van Schronjenstein
Lantman-de Valk et al., 1997; Evenhuis, 1997), compared with those
living in the community (1.5 percent to 5.1 percent) (Janicki and
Jacobson, 1986 in Day and Jancar, 1994). Specifically, individuals with
MR living in institutions are highly susceptible to respiratory
infections. In fact, nearly one-half of all deaths in institutions are
accounted for by pneumonia and influenza, with a disproportionate
number of individuals having severe or profound MR (Polednak, 1975;
O'Brien et al., 1991; Turner and Moss, 1996).
Differences between the prevalence of individuals living in the
community and the prevalence of individuals with severe MR living in
institutions are most likely related to the severity of both MR and
physical impairments, as well as the associated limitations in physical
activity. Among individuals living in residential facilities, for
example, individuals with moderate or severe MR have been found to be
more likely to have COPD compared with individuals with mild MR (van
Schronjenstein Lantman-de Valk et al., 1997). Further, individuals
living in institutions are more likely to be immobile and/or have
difficulties swallowing and, thus, are more susceptible to respiratory
infections (Turner and Moss, 1996; Kennedy et al., 1997). In addition,
as a result of their congregate living arrangement, individuals with
severe MR have greater exposure to infectious agents.
Individuals with severe MR are not the only subpopulation of
individuals with MR to suffer from high rates of respiratory
infections. Researchers have also suggested that young individuals with
Down Syndrome are susceptible to such infections (Baird and Sadovnick,
1988), because of accelerated immunologic aging (Nespoli et al., 1993)
and physical malformations that may hinder drainage of sinuses (Saenz,
1999).
Diabetes Mellitus
Diabetes mellitus is a disease in which the body has an inadequate
supply of insulin, a hormone needed to metabolize food into energy.
Obesity is a major risk factor of diabetes (CDC, 1998), and individuals
with this disease are at higher risk of heart disease, stroke, high
blood pressure, blindness, kidney disease, amputations and dental
disease (CDC, 1998). Diabetes is the seventh leading cause of death in
the U.S. (Hoyert et al., 1999), accounting for 2.7 percent of all
deaths. Additionally, over 15.7 million individuals in the U.S. (5.9
percent of the population) and over 1.4 million in the U.K. (3.0
percent of the population) have diabetes mellitus (CDC, 1998; Diabetes
UK, 2000). With a high prevalence of the disease in the U.S., Healthy
People 2000and Healthy People 2010 have made preventing and reducing
diabetes a priority in the nation's health (U.S. DHHS, 1990; U.S. DHHS,
2000a).
Although not a major cause of death among individuals with MR,
diabetes and its associated risks are important health concerns.
Individuals with MR have similar prevalence estimates of diabetes as
individuals in the general population. In community studies in the U.S.
and in Western Europe, the prevalence of diabetes among individuals
with MR has been found to be 1.6 percent to 9.1 percent, with those
over 65 having a two-fold increase in the risk of diabetes compared
with those less than 65 years (van Schronjenstein Lantman-de Valk et
al., 1997; Cooper, 1998; Kapell et al., 1998). Further, studies
examining the prevalence of diabetes among those with MR residing in
institutions found a lower prevalence than that found in community-
based studies of individuals with MR (.8 percent-2.8 percent) (Hogg et
al., 1988 in Day and Jancar, 1994; Minihan and Dean, 1990).
In addition, compared with the general population, individuals with
Down Syndrome have an increased probability of being obese (Cronk et
al., 1985 in Fujiura et al., 1997; Bell and Bhate, 1992). Perhaps as a
result, there is some evidence to suggest that individuals with Down
Syndrome have a higher probability of having diabetes and of having the
disease at a younger age than individuals without Down Syndrome (Burch
and Milunsky, 1969; Farquhar, 1969; Van Goor et al., 1997; Kapell et
al., 1998).
Unintentional Injuries
Unintentional injuries (e.g., motor-vehicle, drowning, residential
fires, poison consumption, falls) are the leading cause of death among
young people (ages 1-34 years) and the fourth overall leading cause of
death in the U.S., accounting for 4.1 percent of all deaths (Hoyert et
al., 1999). The WHO also reports that 6.5 percent of deaths in WHO
member states are attributed to unintentional injuries (WHO, 1999).
Additionally, the NCHS reports that 31 million visits to the emergency
room result from unintentional injuries each year (Burt and Fingerhut,
1998). The risk of injury is so great that most individuals will
experience an unintentional injury at some point in their life. As a
result of the high prevalence of injury, the Surgeon General has made
reduction in mortality and morbidity due to unintentional injuries a
national priority in Healthy People 2000 and Healthy People 2010 (U.S.
DHHS, 1990, U.S. DHHS, 2000a).
Individuals with MR are at least as, if not more, likely to die
from an unintentional injury compared with the general population. In a
British Columbia study of the causes of death among individuals with
Down Syndrome aged 30 and younger, Baird and Sadovnick (1988) reported
that injuries occurred in the Down Syndrome population as frequently as
in the general population (prevalence estimates ranging from <.1
percent to 8.2 percent). In a population-based study of deaths in
Denmark, however, Dupont et al. (1987) found that individuals with mild
or moderate MR aged 15-34 years were at increased risk of death due to
accidents compared with the general population of the same age.
Although no studies could be found examining non-fatal accidents
and injuries among adults with MR in the population, a few studies have
examined sports-related injuries at Special Olympics, Inc. (SOI)
events. Perlman (1994) summarizes the prevalence of sports-related
injuries from SOI events in 12 states and the previous four world
games, with a total of 701,988 participants. He reported an overall
injury claim prevalence of .05 percent, with estimates ranging from .01
percent to .21 percent depending on the sporting event, although
comparison to the general population is not possible since there are no
comparable data for individuals without MR. McCormick et al. (1990)
found a slightly higher prevalence of sports-related injuries at the
Special Olympics competition in Galveston, Texas, with 3.5 percent of
777 athletes requiring medical care for sports-related injuries. Thus,
like the general population, unintentional injuries and accidents are
an important health concern among those with MR.
Health Behaviors
The prevalence of certain health behaviors, such as poor
nutritional habits leading to obesity, decreased physical activity and
smoking, has become a major concern to policy makers and researchers
interested in the overall health of the nation. Obesity, physical
activity and tobacco consumption are primary modifiable risk factors
for most chronic diseases, and, as such, are listed among the leading
health indicators for health in Healthy People 2000 and Healthy People
2010 (U.S. DHHS, 2000a).
Obesity
Obesity is associated with cardiovascular disease, breast, prostate
and colon cancers, cerebrovascular disease and diabetes (National Task
Force, 2000). According to Healthy People 2010, the number of
overweight individuals has risen in the past four decades, with 11
percent of children ages 6 to 19 years being overweight or obese and 23
percent of adults being obese between 1988-1994 (U.S. DHHS, 2000a).
Obesity is more common among individuals with MR than in the
general population, with overall prevalence estimates ranging from 29.5
percent to 50.5 percent (Simila and Niskanen, 1991; Bell and Bhate,
1992, Rimmer et al., 1993; Rubin et al., 1998). In fact, in a
convenience sample of select participants, Touger-Decker and Matheson
(2000) found that more than 66.0 percent of children with MR who
participated in the New Jersey 2000 Special Olympic Games were
overweight. The prevalence of obesity in the MR population has been
found to vary with living situation and etiology of MR. Individuals
living at home have the highest prevalence of obesity (55.3 percent)
followed by those living in a group home (less than 16 residents) (40.9
percent), while individuals living in institutions (more than 100
residents) have the lowest prevalence of obesity (16.5 percent) (Rimmer
et al., 1993; Prasher, 1995). In addition, individuals with Down
Syndrome are 1.5 times more likely to be obese compared with
individuals with other etiologies of MR (Bell and Bhate, 1992). With
the majority of individuals with MR living in the community, it is
imperative that obesity be considered a major health problem facing
individuals with MR.
Physical Activity
Regular physical fitness is an important health maintenance
activity that is associated with decreased body fat, decreased risk of
cardiovascular disease and diabetes and enhanced psychological well-
being (U.S. DHHS, 2000a). The U.S. Surgeon General has made regular
physical activity a national health priority in Healthy People 2000 and
Healthy People 2010(U.S. DHHS, 1990, U.S. DHHS, 2000a). Among adults in
the general population, only 15 percent participate in regular physical
activity of 30 minutes per day and 40 percent engage in any leisure
physical activity (U.S. DHHS, 2000a).
Like individuals in the general population, individuals with MR are
unlikely to participate in physical activities, either because they
lack the motivation or the opportunity to be involved in fitness
programs (Rimmer, 2000). Few studies, however, exist on the prevalence
of individuals with MR participating in routine physical activity. One
study examined the leisure activities of 207 adults with MR living at
home in Dublin, Ireland. In this study, McConkey et al. (1981) found
that most individuals with MR ages 15-64 participated in activities
that were sedentary, such as watching television (73.4 percent) and
listening to the radio or records (41.1 percent). The prevalence of
individuals with MR participating in outdoor sports ranged from 21.1
percent to 47.5 percent, with those more physically and mentally
impaired being less likely to participate in outdoor sports. Although
comparison to the general population is difficult given the lack of
age-stratified information presented in the study, McConkey et al.
(1981) reported the prevalence of physical exercise among non-retarded
children 16-24 years as 44.0 percent. No information was presented on
the prevalence of participation in outdoor sports. In a more recent
U.K. health screening study of 120 individuals with MR living in the
community, Martin et al. (1997) found that 48.2 percent had done some
physical activity over the past four weeks compared with 93.5 percent
in the general population.
More research has been done on cardiovascular fitness among
individuals with MR (Beasley, 1982; Pitetti and Campbell 1991; Pitetti
et al., 1993; Fernhall, 1993; Fernhall et al. 1998; Lancioni and
O'Reilly, 1998). Cardiovascular fitness, an important aspect of
physical activity, is related to the ability to perform light to
moderate levels of physical labor. Fernall (1993), in a review of
physical fitness among individuals with MR, reports that adults with MR
have lower cardiovascular fitness levels than the general population,
suggesting that individuals with MR may lead more sedentary lifestyles.
Others have also found that individuals with MR have lower
cardiovascular fitness levels compared with those in the general
population (Pitetti and Campbell; 1991).
SOI has recognized the need for individuals with MR to have the
opportunity to participate in physical activities, including team and
individual sports. SOI provides year-round opportunities for
individuals with MR to participate in sports training and athletic
competition, with one of the explicit goals being development of
physical fitness (SOI, 2000). Besides the primary athletic competition
program, SOI also has developed basic fitness guides and training
materials for SOI coaches to raise awareness of proper diet and
nutrition among athletes. Further, these guides encourage athletes to
participate in daily exercise not only during SOI programs but also in
their own home (Todd, personal communication). Additionally, SOI has
developed four specific programs to encourage individuals at increased
risk for sedentary lifestyles to participate in physical activities.
These programs include a motor activities training program for
individuals with severe MR, a unified sports program integrating
individuals with mild MR with their peers without MR, a play activities
program for young children with MR ages 6 and 7 years and an athlete
leadership training program (Sharkey and Hunt, 1999).
Smoking
Cigarette smoking is a major preventable cause of disease and death
in the U.S. and internationally (U.S. DHHS, 2000a; WHO, 2000). Smoking
is a major risk factor for most of the major health conditions
discussed above, including cardiovascular disease, cancer,
cerebrovascular disease and lung disease. In 1997, 24 percent of adults
in the U.S. reported smoking cigarettes (U.S. DHHS, 2000a). As a
result, the Surgeon General and the WHO has made reduction in tobacco
consumption a national and international health priority (U.S. DHHS,
2000a; WHO, 2000).
Prevalence estimates of tobacco consumption by individuals with MR
vary by living condition and severity of MR. In a community-based study
in the southern area of Melbourne, Australia, Tracy and Hosken (1997)
found that 36 percent of individuals with MR sampled indicated that
they smoked cigarettes compared with 26 percent in the general
population. In a clinic-based study conducted in New Jersey, Hymowitz
et al. (1997) found that 30 percent of 64 adults with mild MR reported
that they were current smokers, which is only slightly higher than the
smoking prevalence estimate for the U.S. general population. Burtner et
al. (1995) examined the consumption of tobacco in a Florida residential
facility for individuals with MR. With a prevalence estimate similar to
that of the general population in 1995, they found that 20.5 percent of
individuals with mild or moderate MR used tobacco products, including
cigarettes, chewing tobacco, cigar and snuff. In comparison, only 4.3
percent of individuals with severe or profound MR used tobacco
products. In a study of cardiovascular risk factors, Rimmer et al.
(1994) examined the prevalence of smoking 10 cigarettes a day among
individuals with MR living in a residential facility, living in a group
home and living at home with family. They found that individuals with
MR in the group home had the highest prevalence of smoking (20.8
percent of men and 6.7 percent of women) compared to individuals with
MR living at home (6.9 percent of men and 2.1 percent of women) and
individuals with MR living in an institution (3.8 percent of men, 0.0
percent of women). These studies suggest that individuals living in
institutions and individuals with more severe MR are less likely to
smoke, while individuals living in group homes and individuals with
less severe MR have smoking habits similar to the general population.
The prevalence of smoking also has been studied in select SOI
populations, with prevalence estimates below those observed in
community-based and institution-based studies. Among 704 Special
Olympic athletes who participated in the 1996 New Jersey Special
Olympic Special Smiles program, 7.0 percent reported that they
currently smoked (Feldman et al., 1997). A similar smoking prevalence
of 4.3 percent was found among Special Olympic athletes who
participated in the 1997 San Francisco Bay Area Special Olympics
Special Smiles program (White et al., 1998). There is some evidence,
however, that smoking status may not be accurately measured by self-
report among individuals with MR. In a recent study at the 2000 New
Jersey Special Olympic Games, 70 SOI atheletes aged 18 to 78 were asked
to identify their smoking status and to complete a carbon monoxide (CO)
test of smoking status. Among those who identified themselves as
smokers, 27 percent had negative CO test results. Among those who
identified themselves as non-smokers, 18 percent had positive CO test
results (Giniger, 2000). Thus, although some studies have shown a lower
prevalence of smoking among select populations of individuals with MR,
the self-reported data from these studies may not adequately reflect
the true prevalence of the population.
Many of the studies reported here suggest that individuals with
mild or moderate MR and individuals living in group homes are as likely
to consume tobacco products as individuals in the general population.
Therefore, smoking education and prevention efforts are as essential
for this population as it is in the general population.
Child Health Conditions and Prevention Measures
Otits media, asthma, child maltreatment and immunizations, were put
forth as research priorities in the children's health arena by the
Agency for Health Care Policy and Research, now called the Agency for
Healthcare Research and Quality (U.S. DHHS, 1997a). Although these
conditions and prevention measures are areas of concern among children
in the general population, and, thus, among children with MR, little
information is available on the prevalence and long-term consequences
of these illnesses and behaviors among children with MR.
Otitis Media
Young children are particularly susceptible to otitis media, or
middle ear infections, because they have developing immune systems that
have difficulty fighting infections, immature eustachian tubes that
prevent optimal fluid drainage, and may have enlarged adenoids that
interfere with the eustachian tube opening. Otitis media not only can
cause severe pain, but, if left untreated, also can cause permanent
hearing loss (U.S. DHHS, 1997b). Additionally, recurrent otitis media
can have a negative impact on speech and language development,
cognitive achievement and social and emotional development (Evenuis and
Nagtzaam, 1997). Otitis media is one of the most prevalent childhood
conditions, affecting 75 percent of children under the age of 3 years
at least once (U.S. DHHS, 1997b). An estimated 17 percent to 29 percent
of infants have one episode of acute otitis media and an estimated 26
percent of preschool children in the United States have recurrent
otitis media (Lanphear et al., 1997).
The prevalence of otitis media among children with MR has not been
adequately explored. There are some reasons to believe that children
with Down Syndrome are at increased risk of middle ear infections due
to midfacial malformations and increased susceptibility to infections
(Saenz, 1999). Although not focused specifically on otitis media, one
study of 293 residents of an English institution found that 40 percent
of individuals with Down Syndrome and 29 percent of individuals with MR
without Down Syndrome had ear, nose and throat conditions (Donague and
Abbas, 1972). Dahle and McCollister (1986) compared the prevalence of
ear problems in children with Down Syndrome to children with other
forms of MR. They found that hearing impairment and infections were
more prevalent among children with Down Syndrome. Given the potential
impact of otitis media on development (Whiteman et al., 1986), early
identification of middle ear infections among children with MR, who are
already at risk for delays, is important.
Pediatric Asthma
Asthma is characterized by recurrent breathing problems brought on
by inflammation of the lining of the lungs. The severity of asthma, as
with most conditions, varies by individual. While some individuals are
severely limited in their activities by the condition, others have only
periodic symptoms of the disease. The negative consequences of asthma,
however, can be avoided with appropriate disease management. Since
1980, the prevalence of asthma has been on the rise in all age, race
and sex groups. In 1980, 4.2 percent of children were affected by
asthma, but by 1994 the prevalence of asthma rose to 7.4 percent of
children, a 74 percent increase over a 24-year period (U.S. DHHS,
2000c).
Little research has been done on the prevalence of asthma among
children with MR. In a study of health status and needs of children
with MR, Ackland and Wade (1995) reported the prevalence of medical
conditions of 249 students in Victoria, Australia. With a prevalence
estimate similar to that in the U.S. population of children, asthma was
diagnosed among 6.4 percent of the children with MR.
No research exists on the negative consequences of asthma (such as
reluctance to participate in physical activities) or on asthma
management among children with MR, although one British study examined
deaths from asthma in individuals less than 45 years old with MR.
Reviewing death certificates of all residents in Southmead Health
Authority, Stuart et al. (1990) found a high prevalence of asthma
mortality among 5-44 year olds, with a morality rate twice that of the
general U.K. population. Making confidential inquiries into the factors
associated with the deaths, they found that several factors contributed
to the high mortality rate, including communication difficulties
between the patient and caregiver or provider, and delays in providers
responding to an asthma attack. Given that disease management may be
more difficult with children with MR who have limited communication
skills compared with their peers without MR, increased attention should
be given to self and caregiver management of this common childhood
disease.
Child Maltreatment
Maltreatment is an all too common childhood condition in the U.S.,
with approximately 984,000 children being victims of substantiated or
indicated abuse or neglect in 1997 (U.S. DHHS, 1999). The most common
form of maltreatment is neglect (54 percent of victims), followed by
physical abuse (24 percent), sexual abuse (13 percent), emotional
maltreatment (6 percent) and medical neglect (2 percent). It is
estimated that 1,196 of nearly one million victims of child
maltreatment died from abuse or neglect in 1997 (U.S. DHHS, 1999).
These estimates are based on reports by child protective services,
which only account for those select cases that are known to agencies,
and, therefore, may under-represent the true prevalence of child
maltreatment.
Children with MR also face serious consequences from abuse and
neglect, although there is limited research on overall prevalence
estimates of maltreatment in this population. As Waldman et al. (1999)
point out, children who are abused are over four times as likely to
have MR compared with non-abused children (Sullivan and Knutson, 1994
in Mansell et al., 1998). The causal direction in the association of
child maltreatment and MR, however, is not clear. Physical abuse and
neglect may result in MR (due to brain damage) or individuals with MR
may be more likely to be abused and neglected.
In a study of 445 intellectually handicapped children in Castilla-
Leon, Spain, Verdugo et al. (1995) interviewed professionals about
signs of abuse and/or neglect. They found that 11.5 percent of children
with an intellectual handicap aged 0-19 years had some evidence of
maltreatment compared with 1.5 percent of children with no intellectual
handicap. Among those who had evidence of maltreatment, 92 percent
experienced physical neglect, 82 percent experienced emotional neglect,
65 percent experienced emotional abuse and 31 percent experienced
physical abuse and 2 percent experience sexual abuse.
In addition, sexual abuse appears to be more prevalent among
children with MR compared with children in the general population.
Although not strictly focused on children with MR, Crosse et al. (1993)
reported that children with disabilities are 1.8 times more likely to
experience sexual abuse compared with children without disabilities (in
Mansell et al., 1998). Other researchers have also found an increased
prevalence of sexual abuse among children with disabilities (Sobsey and
Varnhagen, 1989; Sobsey and Doe 1991; Sobsey 1994 and Valenti-Hein and
Schwartz, 1995 in Reynolds, 1997).
Several researchers have speculated about the reasons for the
increased prevalence of abuse among individuals with MR, and have cited
stress and strain on the family, unrealized parental expectations of
the child, emotional and social isolation of caregivers, children's
inability to report abusive experiences, children's dependency on
caregivers and lack of awareness about abusive situations as potential
contributors (Solomons, 1979; Reynolds 1997; Waldman et al., 1999).
Although there may exist a detection bias in who is identified as a
victim, it is clear that individuals with MR are at least as, if not
more, likely to experience maltreatment compared with their peers
without MR.
Immunizations
Vaccines which prevent infectious diseases and death are considered
one of the most important public health achievements of the 20th
century (U.S. DHHS, 2000a). As such, vaccinations of children has
remained a national health initiative in both Healthy People 2000 and
Healthy People 2010 (U.S. DHHS, 1990; U.S. DHHS, 2000a). In 1998, 73
percent of children in the U.S. received routine vaccinations,
including immunizations against Hepatitis B, diphtheria, tetanus,
pertussis, polio, measles, mumps, rubella and Haemophilus influenzae
type b (U.S. DHHS, 2000a; American Academy of Pediatrics, 2000).
Information on the immunization status for children with MR is
sparse. In an early study of the medical care received by previously
institutionalized children, Schor et al. (1981) found that 77.0 percent
had up to date immunizations compared with 91.0 percent of children in
the general population. Another study has examined the prevalence of
routine immunizations among children with MR living in the community.
McLaughlin et al. (1977) examined the immunization records of 134
children in a large northwestern school district, a sample population
that may be generalizable only to the enrolled school population of
children with MR and not to the institutionalized MR population. They
found no statistical difference in the prevalence of completed
immunizations between the 67 children with MR and the 67
age-, sex- and socioeconomic status-matched peers without MR (91
percent versus 81 percent, respectively).
Several studies have been conducted examining the prevalence and
effectiveness of the Hepatitis B vaccine among children and adults with
MR (Vajro et al, 1992; Arulrajan et al., 1992; Vellinga et al., 1999).
These studies suggest that individuals with MR, specifically those with
Down Syndrome and those residing in institutions, are at increased risk
of Hepatitis B infection (Vellinga et al., 1999). Vajro et al. (1992)
examined the seroconversion rate (the antibody response to a vaccine,
which indicates that the vaccine was effective and that an individual
is immune to the disease) of preschool children with Down Syndrome
compared with children with other forms of MR. Despite prior evidence
suggesting that individuals with Down Syndrome are more likely to lack
an anti-Hepatitis B response compared with general population controls,
they found that children in both groups had a complete seroconversion.
Given that children with MR, in particular those with Down Syndrome and
those in institutions, are at increased risk of infection,
administration of routine vaccines in this population is imperative.
Health Conditions Among Those with Down's Syndrome and Rationale for
Increased Prevalence
Certain health conditions are particularly prevalent among
individuals with Down Syndrome and warrant further discussion. For
example, conditions such as orthopedic anomalies, congenital heart
defects and thyroid disease, although relatively infrequent in the
general population, can be life-threatening conditions for individuals
with Down Syndrome.
Atlantoaxial Instability
Individuals with Down Syndrome have many orthopedic anomalies, but
few are as life threatening as atlantoaxial instability. Atlantoaxial
instability is a laxity in the movement between the first and second
cervical vertebrae and, thus, increases the risk of spinal cord injury
(Msall, 1999). It occurs in 10 percent to 40 percent of individuals
with Down Syndrome, depending on the child's age and definition of
instability (Tishler and Martel, 1965 and Alvarez and Rubin, 1986 in
Cremers et al., 1993; Cope and Olson, 1987; Rubin, 1987; Pueschel and
Scola, 1987; Pueschel, 1998). Despite the relatively high prevalence of
atlantoaxial instability, there is no information about the prevalence
of screening among individuals with MR, which may be due in part to the
controversy surrounding the safety of the radiograph screening process
and the questionable diagnostic value of the procedure (Pueschel,
1998). Therefore, effective and safe health screening procedures for
asymptomatic atlantoaxial instability is an important consideration, in
need of further exploration. Some researchers and providers, in fact,
believe that atlantoaxial instability may limit an individual's ability
to participate safely in sports (Saenz, 1999; Msall, 1999), while
others have found restriction of activity based on the possibility of
increased instability to be unnecessary for most children with Down
Syndrome (Cremers et al., 1993; Morton et al. 1995).
Congenital Heart Defects
Children with Down Syndrome are significantly more likely to have a
congenital heart defect than individuals in the general population.
Approximately 40 percent to 60 percent of children with Down Syndrome
have a heart defect (Spicer, 1984; Pueschel, 1990; Martin, 1997)
compared with 0.8 percent in the general population (Mitchell et al.,
1971; March of Dimes, 1999). Due to advancements in medical technology,
however, survival for children with heart defects has dramatically
improved (March of Dimes, 1999). Consequently, some physicians
recommend that infants with Down Syndrome have electrocardiogram and
echocardiogram screenings so that those in need can be referred to a
specialist for medical management (Pueschel, 1990; Saenz, 1999). No
studies were found that determine the screening rate of congenital
cardiac conditions among individuals with Down Syndrome, however.
Thyroid Disease
Diseases of the thyroid, the organ that regulates the body's
metabolism, can lead to blood pressure disturbances, fatigue, changes
in appetite, weight disturbances, difficulty with concentration and
changes in gastrointestinal regulation (Thyroid Society, 2000). Thyroid
disease affects nearly 20 million or 1.4 percent of Americans (Thyroid
Society, 2000). Compared with the general population, individuals with
Down Syndrome have an increased probability of having a thyroid
disorder, including hypothyroidism or hyperthyroidism, with prevalence
estimates ranging from 3 percent to 50 percent depending on the
population studied and criteria for diagnosis (Rubin, 1987; Pueschel,
1990; Dinani and Carpenter, 1990; Ali et al., 1999). Unlike individuals
in the general population, who are at increased risk of thyroid disease
with increased age, individuals with Down Syndrome are more likely to
have thyroid disease at an earlier age. Those with Down Syndrome are
thought to be at increased risk of thyroid disease because they often
have autoimmune abnormalities (Kennedy et al., 1992; Ali et al., 1999)
and accelerated immunologic aging (Nespoli et al., 1993).
Only one study could be found that examined the screening rate of
thyroid disease among children with Down Syndrome. In an interview with
Australian parents who attended a conference on Down syndrome,
Selikowitz (1992) found that 64.7 percent of 132 school-aged children
with Down Syndrome had been tested for hypothyroidism within the past
18 months. Even within this highly motivated and, presumably, informed
population, then, the screening rate of thyroid disease was relatively
poor. Because thyroid disease is so common among children with Down
Syndrome, regular screening and early detection of thyroid conditions
is essential (Murdoch et al., 1977 in Martin, 1997; Noble et al.,
2000).
SUMMARY AND IMPLICATIONS
Similar to individuals in the general population, individuals with
MR are at risk for chronic medical conditions, including cardiovascular
disease, cancer, cerebrovascular disease, lung conditions and diabetes.
Individuals with MR are also susceptible to the primary risk factors of
chronic diseases including obesity, decreased physical activity and
smoking. As in the general population, the risk of disease among those
with MR increases with age. In addition, the disease prevalence varies
by severity of MR. Individuals with mild or moderate MR are more likely
to have cardiovascular disease and diabetes compared with individuals
with severe or profound MR, while those with severe or profound MR
living in institutions are more likely to have respiratory conditions
compared with individuals with mild or moderate MR.
Further, one group of individuals with MR, those with Down
Syndrome, who have autoimmune abnormalities, are at increased risk of
cardiovascular disease, leukemia, respiratory disease and diabetes. Not
surprisingly, the risk factors associated with these diseases are more
prevalent among those with Down Syndrome, namely obesity and decreased
physical activity. Besides the common adult health conditions,
individuals with Down Syndrome are also more likely to have diseases
that are less common among individuals in the general population,
including atlantoaxial instability, congenital cardiac conditions and
thyroid disease.
Although common childhood conditions, such as otitis media, asthma
and child abuse, have also been reported among children with MR, very
little information exists about the prevalence or manifestations of
these conditions in children with MR. The research that does exist
suggests that children with MR are at increased risk of otitis media
and of being maltreated.
Despite these increased risks of health conditions, however, little
research exists on effective prevention programs and treatment
strategies for this group of children and adults. One example of this
lack of attention is the paucity of information on the immunization
status of children with MR, one important public health measure. In
addition, as will be discussed in a subsequent chapter, although
individuals with MR have similar physical health problems as those in
the general population, they are less likely to receive adequate
medical services compared with those in the general population.
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Chapter 3.--Mental Health Disorders Among Individuals With Mental
Retardation
INTRODUCTION
Individuals with MR, like their peers without MR, also suffer from
considerable morbidity due to mental health problems. Since MR is a
diagnosable mental health condition, the presence of both MR and
another mental health disorder is known as dual diagnosis. Similar to
the prevalence of MR and physical health conditions among those with
MR, the prevalence of dual diagnosis varies with the populations
studied (AACAP, 1999).
Although some large scale, population-based research exists, most
studies of dual diagnosis are conducted with small sample sizes and use
administrative data (e.g. hospital admission data) (Ineichen, 1984;
Borthwick-Duffy and Eyman, 1990; Szymanski, 1994). The use of
administrative data, however, may under- or over-estimate the
prevalence of dual diagnosis in the population, depending on the
sampling strategy used. For example, since many individuals with mild
MR do not use services in the mental health care system (Borthwick-
Duffy and Eyman, 1990), the reported dual diagnosis prevalence based on
administrative data may under-represent the true prevalence of MR and
mental health problems (Borthwick-Duffy and Eyman, 1990, King et al.,
1997). Conversely, since those with psychiatric impairments are more
likely to use services than those without impairments, these
administrative estimates may over- estimate the prevalence of dual
diagnosis. Research studying individuals referred to psychiatric
services, for instance, may over-represent the population prevalence of
individuals with mental health disorders (Borthwick-Duffy, 1994).
In addition to methodological constraints regarding sampling
strategies, research on mental health disorders among individuals with
MR also suffers from inconsistent diagnostic methods and difficulties
diagnosing these conditions in this population. Nevertheless, the
research presented in this chapter indicates a high prevalence of dual
diagnosis.
DIAGNOSIS OF MENTAL HEALTH DISORDERS AMONG INDIVIDUALS WITH MR
In addition to sampling strategies, the methods used to diagnose
mental health disorders influences the prevalence of such conditions
among individuals with MR (i.e., dual diagnosis). While some research
uses diagnoses noted in medical records (chart reviews), others use
structured diagnostic assessments to identify dual diagnosis. When
chart reviews are used, however, the prevalence of dual diagnosis has
been found to be much lower than the prevalence as determined by the
use of specific diagnostic tools (Reiss, 1990).
Further, while some researchers study mental health conditions as
defined in the APA's Diagnostic and Statistical Manual of Mental
Disorders, others use different scales and interview instruments for
diagnosis (Crews et al., 1994). In addition, some professionals prefer
the term ``psychiatric illness,'' while others use the term
``behavioral disorder'' to indicate general mental health conditions
(Szymanski 1994; Emerson et al, 1999; Moss, 1999). In this report, the
term ``mental health disorder'' will be used to encompass both
psychiatric conditions and behavioral problems.
In addition to the methodological issues involved in documenting
dual diagnosis, there are two main challenges to the process of actual
diagnosis of mental health disorders among individuals with MR. First,
providers are often reluctant to diagnose mental health conditions
among those with MR and second, there are often difficulties involved
in identifying symptoms in this population. Historically, mental health
conditions rarely were diagnosed in individuals with MR because many
behavioral and emotional problems were thought to be either
characteristic of MR (Eaton and Menolascino,1982; Zigler and Burack,
1989) or due to institutionalization (Day, 1993; Moss et al., 1997).
Although today it is recognized that mental health conditions exist
in individuals with MR, and are separate from MR (Eaton and
Menolascino, 1982; Borthwick-Duffy and Eyman, 1990), the presence of MR
often diminishes the diagnostic significance of behavior that would
otherwise be considered indicative of a mental health disorder. In
other words, symptoms of a mental health disorder are often attributed
to the MR, rather than evaluated as a potentially separate condition.
Reiss et al. (1992), who termed this phenomenon overshadowing, provide
an example of this in research conducted among psychiatrists evaluating
hypothetical cases. Clinicians in this study were more likely to give
the diagnosis of mental health disorder to an individual without MR
than to a patient with the same case description plus the diagnosis of
MR.
Symptoms of mental health conditions among individuals with MR,
however, may be difficult to identify. Although, in principle, the
diagnosis of mental health problems in individuals with MR is similar
to that of individuals without MR (Tuiner and Verhoeven, 1993),
diagnosis in this population can actually be quite difficult (Gabriel,
1994; Borthwick-Duffy and Eyman, 1990; Sturmey, 1999; Moss, 1999;
Weissblatt, 1994; Moss et al., 1997; Prosser et al., 1998; AACAP,
1999), particularly among individuals with severe MR (Reiss and
Valenti-Hein, 1994). Because of cognitive limitations, different
developmental trajectories and limitations in lifestyle, individuals
with MR will often present with different symptoms of mental health
disorders, compared with those without MR (Reiss, 1982; Menolascino et
al., 1986).
The most difficult conditions to diagnose among individuals with
severe MR are psychosis and cognitive disorders (Weissblatt, 1994). For
example, it is often hard to distinguish the effects of prolonged
institutional care from symptoms of schizophrenia among those with
severe MR (Ineichen, 1984). Further, severe cognitive limitations
(known asbaseline exaggeration), are common among those with severe MR,
and make the identification of additional cognitive disorders
challenging, if not impossible (Sovner, 1986 in Crews et al., 1994;
Sturmey, 1999). Those with severe MR also may present with bland
symptomatology, a phenomenon know as psychosocial masking, that makes
diagnosis difficult as well (Sovner, 1986 in Crews et al., 1994;
Sturmey, 1999).
In addition, those with severe MR may have limited communication
skills, (referred to as intellectual distortion[Sovner, 1986 in Crews
et al., 1994; Sturmey, 1999]) or maladaptive behaviors (referred to
ascognitive disintegration[Sovner, 1986 in Crews et al., 1994; Sturmey,
1999]) due to their disability, and are often passive and compliant.
Any of these conditions or behaviors may obscure or confound symptoms,
making diagnosis difficult (Reiss et al., 1982; Gabriel, 1994;
Borthwick-Duffy and Eyman, 1990; Crews et al., 1994; Prosser et al.,
1998). For example, those with severe MR are frequently non-verbal,
making conditions such as obsessive compulsive disorder difficult to
diagnose (AACAP, 1999). As a result, diagnoses may depend on
caregivers' abilities to identify symptoms and clinicians' observations
(Brothwick-Duffy and Eyman, 1990; AACAP, 1999), rather than patients'
accounts.
Since older children, adolescents and adults with mild MR are less
likely to have trouble communicating, the process of diagnosis is much
less difficult among these groups than among younger children or those
with severe MR (Reiss and Valenti-Hein, 1994). As a result, individuals
with mild MR may be more likely to be given a mental health diagnosis
than those with more severe MR, although it is unclear whether those
with more severe MR are less likely to have such problems or merely
less likely to be identified with a problem (Borthwick-Duffy and Eyman,
1990; Crews et al., 1994).
Given these difficulties and the limited training that most
clinicians have in working with individuals with MR, many providers
prefer not to work with these patients. Consequently, when clinicians
do treat individuals with MR, they are generally not experienced enough
to make accurate diagnoses (Moss, 1999). An Australian study of
psychiatrists, for instance, found that 75 percent of those surveyed
felt that they hadn't received sufficient training in dual diagnosis,
and 39 percent preferred not to treat the dually diagnosed (Lennox and
Chaplin, 1996).
RATIONALE FOR MENTAL HEALTH MORBIDITY
Despite these diagnostic difficulties and ambiguities, higher rates
of mental health impairments have been found among individuals with MR
than in the general population (Zigler and Burack, 1989; Dosen, 1993;
Moss, 1994; Moss et al., 1997; Embregts, 2000; Reiss, 1990). As Zigler
and Burack (1989) point out, individuals with MR are capable of
experiencing the same disappointments and difficulties as those without
MR. Due to their increased sensitivity, however, an episode of
``failure'' may affect an individual with MR more than it would someone
in the general population (Zigler and Burack, 1989).
Further, low intelligence may actually increase the risk of mental
health problems for those who are aware of their limitations, as such a
recognition may lead to self-concept problems and depressive reactions
(Reiss et al., 1982; Crews et al., 1994). Similarly, parental and peer
rejection, negative social relationships, limited supports and exposure
to degrading situations may all make functioning in the community
difficult (Siperstein et al., 1997, Eaton et al., 1982; Reiss and
Benson, 1984; Taylor et al., 1987; Borthwick-Duffy and Eyman, 1990),
and increase the likelihood of having mental health problems (Gabriel,
1994). Since individuals with mild or moderate MR are more likely to be
living with their families and to be aware of their limitations, these
individuals may be at higher risk than those with severe MR. Children
with moderate MR, in fact, have been shown to be more likely to be
rejected by parents than individuals with profound MR (Eaton et al.,
1982; Eaton and Menolascino, 1982), and children with mild MR have been
found to be more rejected by peers and express more dissatisfaction and
anxiety about peer relations than those without MR (Taylor et al.,
1987). As a result, both adults and children with mild or moderate MR
may be at a higher risk of reacting to stressful life events with an
affective disorder than those with severe or profound MR.
In addition, mental health conditions may be more common among
individuals with MR due to biological risk factors (Reiss et al.,
1993). Those with MR, for example, may suffer from more genetic
abnormalities and brain damage than the general population (Moss et
al., 1997), which may be associated with a higher prevalence of mental
health conditions. For example, central nervous system damage, which is
common among those with MR, may increase the vulnerability of
individuals to develop other mental health disorders (Eaton and
Menolascino, 1982).
PREVALENCE OF MENTAL HEALTH MORBIDITY
General Mental Health Morbidity
Mental health disorders in individuals with MR have been estimated
to occur at a rate 3-6 times greater than that in the general
population (Eaton and Menolascino, 1982; Walters et al., 1995; Maino,
1996). Research studies among individuals without MR have reported a
prevalence of mental health disorders ranging from 7 percent-26 percent
(Bergeron et al., 1992; Surgeon General, 1999). The prevalence of dual
diagnosis reported in both the U.S. and international literatures,
however, is extremely inconsistent. In fact, a review of the literature
done by Borthwick-Duffy (1994) indicates that studies using different
definitions and sampling strategies estimate the prevalence of dual
diagnosis to range from less than 10 percent to more than 80 percent.
Lower prevalence estimates, however, are obtained when client records
are examined, while higher prevalence estimates are documented from
clinical evaluations. Reiss (1990), for instance, found the prevalence
of mental disorders in a community-based day program to vary from 12
percent, using chart reviews alone, to 39 percent using screening
surveys and 60 percent using clinical evaluations.
Among adults, the Surgeon General (1999) reports that 21 percent of
those in the general population suffer from a mental health condition.
Similarly, research using administrative data in the U.S. has found
percentages of dual diagnosis to range from 17 percent to 36 percent
(Reiss, 1990; Jacobson, 1982; Iverson and Fox, 1989 in Borthwick-Duffy,
1994). Further, European studies estimate the prevalence of dual
diagnosis to range from 12 percent of individuals with severe MR, using
administrative data (Kushlick, 1975 in Borthwick-Duffy, 1994), to 27
percent, using population- based data (Lund, 1985 in Borthwick-Duffy,
1994). Given that much of the literature indicates a higher prevalence
of specific mental health disorders among individuals with MR, this
reported similarity in prevalence estimates between adults with and
without MR may be due to the methodologies used or the specific
conditions studied in these research efforts.
Among children, 5 percent-21 percent of the general population have
been reported to have mental health conditions (Bergeron et al., 1992;
Szymanski, 1994; Costello 1999; Friedman et al., 1998; Surgeon General,
1999). Conversely, studies using administrative data in the U.S. have
found the prevalence of dual diagnosis to range from 14 percent to 60
percent (Jacobson, 1982; Menaloscino, 1965 and Chess and Hassibi, 1970
in Borthwick-Duffy, 1994). As described above, research using
populations referred to psychiatric services report a higher prevalence
of dual diagnosis (87 percent) (Phillips and Williams, 1975 in
Borthwick-Duffy, 1994).
Further, studies using administrative data in Europe have found a
prevalence of dual diagnosis among children similar to that reported in
the U.S., ranging from 9 percent to 43 percent (Kushlick, 1975,
Haracopos and Kelstrup, 1978 and McQueen et al., 1987 in Borthwick-
Duffy, 1994). In addition, while Rutter et al.'s (1970) British
population-based study reported a prevalence of mental health disorders
of about 7 percent among children without MR (Borthwick- Duffy, 1994),
European population-based studies report a prevalence of childhood dual
diagnosis of 30 percent to 64 percent (Rutter, 1970 in Borthwick-Duffy,
1994; Gillberg et al., 1986).
Mental Health Morbidity and Severity of MR
As with other health conditions described in this report, the
prevalence of diagnosed mental health disorders tends to vary with
severity of MR. Many studies have found that the prevalence of mental
health disorders is highest among individuals with mild MR (Iverson and
Fox, 1989 in Borthwick-Duffy, 1994; Borthwick-Duffy and Eyman, 1990;
Jacobson, 1982). For example, administrative data from California
indicates that 16 percent of individuals with mild MR are
psychiatrically diagnosed, while only 5.7 percent of those with severe
or profound MR have a dual diagnosis (Borthwick-Duffy and Eyman, 1990).
These findings are consistent with the notions that MR is easier to
diagnose among those with mild or moderate MR, and that because of
their living situations and awareness, those with mild or moderate MR
are more prone to mental health disorders than individuals with severe
or profound MR.
International studies, however, indicate a different association.
Many population studies in Europe have found that individuals with more
severe MR have a higher prevalence of dual diagnosis (Rutter, 1970 in
Borthwick-Duffy; Gillberg et al, 1986; Gostason, 1985 in Borthwick-
Duffy, 1994; Goh and Holland, 1994). For example, one European study
reported prevalence estimates of such disorders to be 60 percent among
those with an IQ<60, and just over 20 percent among those with an IQ
between 60 and 69 (Birch et al., 1970).
The discrepancy between American and European research has several
potential explanations. First, the inconsistent finding may suggest
that there is no association between severity of MR and dual diagnosis
(McCaren and Bryson, 1987 in Borthwick-Duffy, 1994). Second, the
inconsistencies may be due to research methodology. Studies based on
administrative data found more dual diagnosis among individuals with
mild MR, while studies using population-based data reported a higher
prevalence among those with severe MR. This may be because those with
severe MR and a mental health condition may be more likely to be
institutionalized, and thus less likely to be captured in
administrative data.
Third, studies that examined specific conditions indicate that the
association may vary with condition (Corbett et al., 1975 and Koller,
1983 in Borthwick-Duffy, 1994; Reid, 1980). For example, based on a
survey of individuals referred to an outpatient clinic for those with
developmental disabilities, Reiss (1982) reports that 20 percent of
individuals with mild MR were diagnosed with depression, compared with
none of those with severe MR. As discussed above, individuals with mild
MR may have difficulties ``fitting in'' with their peers and feel
unaccepted and thus unsatisfied with their lives, which may lead to
depression. Those with severe MR, however, may not be as aware of their
social situation, and thus may not be as depressed.
This same study, however, found schizophrenic symptomatology to be
more frequently diagnosed among those with severe MR (46.7 percent)
than among individuals with mild MR (16.7 percent). Although a
psychotic diagnosis is more difficult among individuals with severe MR
than those with mild MR, individuals with severe MR are more likely to
live in institutions, where experienced mental health providers are
more accessible than they are in community settings. In fact, those
living in institutional care have been reported to have a higher
prevalence of dual diagnosis (18.6 percent) than individuals living
with their families (5.1 percent) (Borthwick-Duffy and Eyman, 1990).
The higher prevalence among those with severe MR in Europe, then, may
be due to the distribution of individuals among residential settings,
with individuals in institutions receiving more comprehensive
diagnostic assessments than those living in the community.
SPECIFIC CONDITIONS
Adult Mental Health Conditions
The types of mental health disorders found in those with MR are
similar to those found in their peers without MR (Reiss et al., 1982;
Eaton and Menolascino, 1982). Among adults in the general population,
the most common mental health disorders consist of anxiety disorders,
affective disorders and substance abuse. Although schizophrenia is not
very prevalent, it merits attention due to its severity and persistence
(Surgeon General, 1999). The most common disorders cited among adults
with MR and intellectual disabilities in both the U.S. and Australia
are anxiety disorders, psychotic disorders and personality disorders
(Reiss, 1990; Lennox and Chaplin, 1996; Moss et al., 1997). As
discussed above, affective disorders are important, albeit less common,
conditions among individuals with MR, and thus warrant attention here
as well. Further, individuals with Down Syndrome report a high
prevalence of dementia. In contrast, there has been a much lower
prevalence of substance abuse reported among individuals with MR than
in the general population (Reiss, 1990; Moss et al., 1997). The
prevalence of the above mentioned conditions will be presented in this
chapter.
Anxiety Disorders
Although earlier research studied the condition ``neurotic
disorder,'' this term, which closely resembles the presently used term
``anxiety disorder,'' is no longer used in the mental health
literature. For the purposes of this report, ``anxiety disorder'' will
be used to refer to both anxiety and neurotic disorders.
Anxiety disorders usually present as clinically significant
unpleasant emotions, such as fear, dread and alarm, in the presence of
stressors. The Surgeon General (1999) reports that between 13.1 percent
and 18.7 percent of the general population suffers from an anxiety
disorder. In contrast, Reiss (1990) found that 31.4 percent of
individuals at a community-based day program for individuals with MR
suffered from an anxiety problem, and that for 6.4 percent, anxiety was
a major problem.
Although the prevalence of anxiety among individuals with MR is
higher than that in the general population, anxiety disorders have been
found to be difficult to diagnose in individuals with severe MR. In
fact, although Day (1983) reports a prevalence of anxiety disorders of
28 percent among individuals with MR, only 4 percent of these cases
were among moderately and 0 percent were among severely mentally
handicapped individuals (Fraser and Nolan, 1994).
Obsessive-compulsive disorder (OCD), one of many anxiety disorders,
is characterized by recurrent obsessions or compulsions that are severe
enough to be time-consuming or cause marked distress or significant
impairment (APA, 1994). This condition generally manifests itself in
adolescents or young adulthood (Surgeon General, 1999); its prevalence
in the general population is estimated to range from 1 percent-2.4
percent (Surgeon General, 1999).
Among individuals with MR, the prevalence of OCD has been reported
to be 3.5 percent (Fraser and Nolan, 1994). OCD may present atypically
among individuals with MR, with hand washing, self-injury, sterotypic
movements and anxiety dominating the symptomatology (King, 1993 in
Verhoeven and Tuiner 1999; Stavrakaki, 1999). In contrast, the most
common symptoms in the general population include concern over order,
symmetry or contamination with germs or bodily fluids, doubts, or loss
of control of violent or sexual impulses (Surgeon General, 1999).
Anxiety is important to understand, as severe cases can be violent
and disruptive, and interfere with functioning (Stavrakaki, 1999).
Acting out may be particularly problematic among individuals with MR,
as a result of the frustrations associated with an inability to
verbally communicate (Fraser and Nolan, 1994). While some believe that
this condition is associated with the same pathology that causes the
intellectual disability, others associate anxiety disorders with trauma
and abuse (Stavrakaki, 1999).
Affective Disorders
Affective disorders include states of abnormally low mood
(depressive disorders) and states of abnormally elevated mood (manic
states) (Clarke, 1999). In the general population, the one-year
prevalence of affective disorders is reported to be 7 percent (Surgeon
General, 1999). In comparison, the point prevalence among
institutionalized individuals with MR has been reported to be 8.9
percent (Crews et al, 1994). As discussed above, this percentage among
institutionalized individuals with MR may reflect the low prevalence of
depression diagnosed among those with severe MR. Crews et al. (1994),
however, did find that over half of those with dual diagnosis (57
percent) suffer from an affective disorder. The most common mood
disorders include major depression and bipolar disorder (Surgeon
General, 1999).
Depression is an affective disorder characterized by low mood and
decreased energy (Clarke, 1999). In the general population, the
prevalence has been estimated to be between 5 percent and 25 percent
(Stavrakaki, 1999; Kessler et al., 1996). Among adults with MR,
depressed mood is the most common psychological symptom (Laman and
Reiss, 1987; Fraser and Nolan, 1994). The administratively determined
prevalence of diagnosed depression among individuals with MR, however,
has been estimated only to be between 3 percent and 6 percent (Reiss,
1990). In fact, among individuals with mild MR receiving disability
benefits from New York State, 6.2 percent were found to have depressed
mood (Laman and Reiss, 1987). Although these percentages may seem low
compared with the general population prevalence, they may underestimate
the true prevalence of depression in the population with MR because
they are derived from service-based data. Further, experts in the field
believe depression to be underdiagnosed among those with MR (Reiss,
1994), due in large part to an atypical presentation, including
aggressive behavior, self-injury, psychomotor agitation and irritable
mood (Meins, 1995 in Verhoeven and Tuinier, 1999).
The causes of depression among individuals with MR are thought to
be the same as among those in the general population, and include
biological and genetic factors, as well as stressful life events, which
may be numerous in this population (Stavrakaki, 1999). In addition,
depression is often associated with the low levels of social support
and poor social skills often experienced by individuals with MR
(Schloss, 1982 in Benson et al., 1985; Reiss and Benson, 1983; Laman
and Reiss, 1987). The impact of depression on individuals with MR is
significant, as it has been shown to be associated with aggressive
behavior, anger, irritability, antisocial behavior and conduct problems
(Laman and Reiss, 1987).
Bipolar disorder consists of manic behavior or the combination of
both mania and depression, and is not as common as depression. The
Surgeon General Report (1999), in fact, reports about 1.7 percent of
the general population (age 18 to 54) to have a bipolar disorder. Among
individuals with MR, bipolar disorder is rarely reported. This may be
due to the atypical symptomatology, namely perplexity, lability and
irritability, associated with bipolar disorder in this population. In
fact, whether this symptomatology should be characterized in this
domain is a matter of debate (Verhoeven and Tuinier, 1999).
Psychotic Disorders
Psychotic disorders have been defined as disturbances of
perceptions and thought processes (Surgeon General, 1999). While the
Surgeon General (1999) estimates the prevalence of nonaffective
psychosis in the general population to be 0.2 percent, Reiss (1990)
found a prevalence of psychosis among individuals with MR attending a
community day program to be 5.8 percent.
Schizophrenia, one type of psychotic disorder, is characterized by
distortions in thinking and perception, and inappropriate or flat mood
states (Clarke, 1999). In general, schizophrenia is believed to occur
in only 1.0 percent of the general population, compared with 3.0
percent of the population with MR (Clarke, 1999; Weissblatt, 1994;
Fraser and Nolan, 1994; Surgeon General, 1999). Using administrative
data, however, Eaton and Menolascino (1982) found the prevalence of
schizophrenia to be 21 percent, and Reiss (1982) reported it to be 30.3
percent, among adults with MR.
In the past, stereotypic behaviors seen in individuals with severe
MR were thought to be indications of schizophrenia (Hayman, 1939). Due
to the degree of language skills necessary to diagnose schizophrenia,
however, this view is no longer accepted. In fact, as described above,
schizophrenia is currently rarely diagnosed among individuals with
severe MR, and some do not believe that it is even possible to make
such a diagnosis among individuals in this group (Reid, 1993). Rather,
a less specific diagnosis of psychotic disorder, not otherwise
specified, is often made among individuals with severe MR (AACAP,
1999).
Personality Disorders
Personality disorders consist of long-term problems in adjustment
(Reiss et al., 1993). The Surgeon General (1999) reports an anti-social
personality prevalence of 2.1 percent among the general population, and
Kassen et al. (1999) report that 23.6 percent of their community sample
of young adults were diagnosed with a personality disorder.
Although some debate exists as to whether personality disorders can
be observed among individuals with low mental age (such as children or
those with MR) (Reiss, 1994), these disorders have been cited as some
of the most common psychiatric diagnoses among individuals with MR
(Day, 1985 in Fraser and Nolan, 1994; Emerson et al., 1999). Reid and
Ballinger (1987), for example, found that among individuals in a
hospital for the mild/moderately handicapped, 56 percent had abnormal
personalities and 22 percent suffered from personality disorders
(Fraser and Nolan, 1994). Similarly, Duncan et al. (1936) found 33
percent of institutionalized individuals with MR to have a personality
disorder, and Eaton and Menaloscino (1982) reported that 27.1 percent
of individuals at a community-based program had one of these
conditions.
Dementia
Individuals with MR are now surviving long enough to be at risk for
age-associated conditions such as dementia of the Alzheimer type
(Tuinier and Verhoeven, 1993). Adults with Down Syndrome, for example,
experience a higher rate of dementia at a relatively earlier age than
those without Down Syndrome (Janicki and Dalton, 2000). In fact, most
individuals with Down Syndrome who live past 35 years show Alzheimer-
like neuropathology (Holland, 1994).
Substance Abuse
Substance use has not been found to be as common among individuals
with MR as in the general population (Koller et al., 1982 and
MacEachron, 1979 in Edgerton, 1986). The general population prevalences
for illicit drug use and alcohol use have been reported to be 11.9
percent and 66.4 percent, respectively (SAMSHA, 1998). In contrast, of
the 205 participants at a community- based day program for individuals
with MR, Reiss (1990) found that no individuals suffered from alcohol
or drug abuse, and Glick and Zigler (1995) reported that 3.5 percent of
112 psychiatric inpatients with mild MR were substance abusers. In
addition, Edgerton (1986) reported that among four samples of adults
with MR living in a variety of community settings, individuals were
less likely to use alcohol or other drugs than a comparison group of
individuals without MR. This is somewhat surprising, since studies in
both the U.S. and the U.K. have found large numbers of
deinstitutionalized individuals with other mental health disorders, who
may face the same adaptation problems as those with MR, to be substance
users (Arce et al., 1983, Wynee, 1984 and Melick et al, 1979 in
Edgerton, 1986).
Child Mental Health Conditions
Due to the changing nature of children's environments and brain
development, the sociocultural environment in which they live affects
their mental health even more than it does that of adults (Surgeon
General, 1999). Among children in the general population, the most
common mental health disorders are anxiety disorders, affective
disorders, and attention deficit and disruptive disorders. These same
disorders, with the addition of schizophrenia, are also the most
commonly reported mental health disorders among children with MR (Chess
and Hassibi, 1970 in Borthewick-Duffy, 1994 Embrets, 2000; Szymanski,
1994; AACAP, 1999).
Anxiety Disorders
The combined prevalence of anxiety disorders is higher than that of
virtually all other mental disorders of childhood and adolescence
(Costello et al., 1996 in Surgeon General, 1999). The Surgeon General
(1999) reports the one-year prevalence of anxiety among 9-17 year olds
to be 13 percent. In contrast, a small study of a psychiatric clinic
for children with mental handicaps under the age of 16 reported 22
percent to suffer primarily from an anxiety disorder (Reid, 1980).
Since children with MR are more dependent on their caregivers than
children without MR, they may be more likely to react to changes in
their routine, resulting in higher prevalence estimates of anxiety in
this population.
Affective Disorders
Depression in childhood differs from depression among adults.
Children with major depression, for example, do not experience
psychotic features as often as depressed adults do, and when they do,
the features are not presented in the same manner. Further, major
depression is more likely to be associated with an anxiety disorder in
children than in adults. In fact, two- thirds of children and
adolescents with major depressive disorder also suffer from another
disorder (Surgeon General, 1999).
In the general population, the prevalence of depression has been
estimated to be 6.2 percent for children 9-17 (Surgeon General, 1999).
As with adults, the prevalence of depression is lower among individuals
with MR, and it is easier to diagnose among children with mild MR than
those with more severe MR. In Sweden, the prevalence of depression has
been reported to be 1.5 percent among children with severe MR and 4
percent among children with mild MR. Again, this may be due to the lack
of family and peer support felt by children with mild MR, who are often
expected to function ``alone'' in the general society to a greater
extent than other subgroups of MR (Stavrakaki, 1999).
One reason that depression is important to consider among children
is that it increases the risk of suicide. In fact, over 90 percent of
children who commit suicide are believed to have had a mental disorder.
Among children in the general population, the prevalence of suicide is
1.6 per 100,000 among 10-14 year olds and 9.5 per 100,000 among 15-19
year olds (Surgeon General, 1999). Although many people do not
associate suicidality with MR, in a study of a psychiatric hospital, 21
percent of admissions for dual diagnosed youth demonstrated suicidal
behavior either before or during the hospitalization (Walters et al.,
1995).
Attention Deficit and Disruptive Disorders
The most common attention deficit and disruptive disorders include
attention deficit/hyperactivity disorder (ADHD) and conduct disorder.
In the general population, the prevalence of ADHD is estimated to be 3
percent to 5 percent (APA, 1999). Among children with MR, poor
attention and hyperactivity, the hallmarks of ADHD, are common reasons
for mental health referrals (AACAP, 1999). Since most of the criteria
used to diagnose ADHD are based on behavioral observation, not verbal
communication, this disorder can be diagnosed fairly easily among non-
verbal individuals with MR (AACAP, 1999). Consequently, the prevalence
of ADHD among those with MR, 4 percent-11 percent, has been found to be
somewhat similar to that in the general population (Feinstein and
Reiss, 1996 in AACAP, 1999; APA, 1999).
Further, among children with Down Syndrome, Green et al. (1989)
found that even between the ages of 2 and 4 years, a discrete group
could be identified as showing measurable attention deficit. Although
this study was small, the authors concluded that the deficit was not
associated with mental age, parenting style or medical factors; rather,
they believed it to be intrinsic to Down Syndrome (Stores et al.,
1998). ADHD is important to recognize because although many children
outgrow their symptoms, children with ADHD often develop other
disruptive disorders in their teenage years (Surgeon General, 1999).
Children or adolescents with conduct disorder behave aggressively
by fighting, bullying, intimidating, physically assaulting, sexually
coercing, and/or being cruel to people or animals (Surgeon General,
1999). Conduct disorder among children in the general population has
been reported to range from 6 percent-16 percent among boys and 2
percent-9 percent among girls (APA, 1999).
Among individuals with MR, a Swedish population-based study found
that 4.5 percent of those with severe MR and 12 percent of those with
mild MR suffered from conduct disorder (Gillberg et al., 1986).
Similarly, reports by Gath and Gumley (1986; 1987) indicate that 11
percent of school children were rated to have conduct disorder by
parents and teachers. A much smaller study of a psychiatric clinic for
children with MR, however, reported that as many as 45 percent of the
study population primarily manifested a conduct disorder (Reid, 1980),
and Richardson et al. (1985) reported that 33 percent of children and
adolescents with mild MR suffer from this disorder (AACAP, 1999).
Although the prevalence, then, is not clear, a significant percentage
of children with MR do suffer from conduct disorder. Given that rates
of depression, suicidal thoughts, suicide attempts, and suicide itself
are all higher in children diagnosed with a conduct disorder (Shaffer
et al., 1996 in Surgeon General, 1999) than in children in the general
population, this is an important condition to consider.
Psychotic Disorders
Since schizophrenia tends to develop during adolescence and young
adulthood, the appearance of schizophrenic symptoms before age 12 is
rare (APA, 1999; Rapoport, 2000). Schizophrenia develops very slowly in
children, so that most children with schizophrenia show delays in
language and other functions long before their psychotic symptoms
appear (Rapoport, 2000).
Perhaps because of its rarity, no reports of the prevalence of
schizophrenia among children in the general population were identified
for this report. The classification of children with schizophrenia
among children with MR may be more frequent because some believe that
children with psychosis often function at a mentally retarded level
(Eaton and Menolascino, 1982). Eaton and Menolascino (1982), in fact,
found the prevalence of schizophrenia to be 5 percent among children
(<21 years) with MR, and 9 percent of children with Down Syndrome have
been reported by parents and teachers to be classified as psychotic
(Gath and Gumley, 1986; Gath and Gumley, 1987). A Swedish population-
based study, however, found a lower prevalence of schizophrenia among
children, with 1.5 percent among individuals with severe MR and 1
percent among those with mild MR (Gillberg et al., 1986).
Other Disorders
Since MR can be a feature of pervasive developmental disorder
(PDD), children with both of these conditions usually are not
considered to be dually diagnosed. Because of its prevalence among
individuals with MR, however, PDD deserves mention here. PDD is
indicated by disordered cognition or thinking, difficulty in
understanding and using language and difficulty in understanding the
feelings of others or the world around them (Surgeon General, 1999).
Autism, the combination of social, communication and imagination-
behavior restriction (Wing and Gould, 1979 in Gillberg, 1999), is the
most common form of PDD. Autism has been reported in .05 percent-.17
percent of children in the general population, in 5 percent among those
with mild MR, and in 15 percent among individuals with moderate or
profound MR (Bryson et al., 1998 in Gillberg, 1999; APA, 1999).
In addition, many studies report the prevalence of behavioral
disorders, although the definition of this term is not clear.
Nevertheless, this ``condition'' certainly represents functional issues
and thus merits attention in this report. In the U.K., the prevalence
of severe behavioral disorder among children with severe MR has been
reported to be 20 percent among children and adolescents (Wing, 1971
and Kushlik and Cox, 1973 in Holt, 1994).
Further, among children with Down Syndrome, about 30 percent have
been rated by their parents and teachers as behaviorally disordered
(Gath and Gumley, 1986; Gath and Gumley, 1987). Although a British
study of children indicated that those with Down Syndrome had a higher
prevalence of behavioral disturbance than those without Down Syndrome,
however, children with other intellectual disabilities showed a higher
prevalence than either of these groups (Stores et al., 1998).
SUMMARY AND IMPLICATIONS
Due to differences in methodology and diagnoses, comparisons of the
prevalence of mental health disorders between individuals with MR and
the general population are challenging at best. Further, given that
dual diagnosis tends to be difficult, if not impossible, among
individuals with severe MR, the percentages of mental health conditions
reported here may underestimate the true percentages in this
population. Nevertheless, the studies highlighted here indicate a high
prevalence of dual diagnosis.
The mental health conditions reported among individuals with MR are
very similar to those found in the general population. Adults with MR
tend to suffer less from substance abuse than those in the general
population, but are more often diagnosed with anxiety disorders,
psychotic disorders and personality disorders. Although affective
disorders are less often diagnosed in adults with MR than in the
general population, the prevalence of these conditions is believed to
be higher than the cited studies indicate. In addition, individuals
with Down Syndrome suffer from dementia as they age, and children with
MR tend to suffer from anxiety disorders, affective disorders,
psychotic disorders, ADHD and conduct disorder.
Most U.S.-based studies find a higher prevalence of depression
among individuals with mild or moderate MR than those with more severe
MR. Schizophrenia, however, has been found to be more prevalent among
individuals with severe MR. These associations may be due to the nature
of the disorders. Since individuals with mild MR are more likely to
live with their families, and experience and be aware of every-day
stressors, they may be more susceptible to affective disorders than
those with severe MR. In addition, the relationship between
schizophrenia and severity of MR may be due to difficulties in
diagnosing certain mental health conditions among individuals with MR.
Because those with severe MR are more likely to live in institutions
than those with mild MR, the former group may have greater access to
experienced mental health care providers, who are capable of making
difficult diagnoses.
Further, European studies have found more mental health disorders
among individuals with severe MR. This may be due to the types of
populations and disorders studied, differences in diagnostic practices
or the distribution of individuals among residential settings. For
example, since in the U.S. dually diagnosed individuals with severe MR
are more likely to live in institutions than with their families, they
may not be captured in research using administrative data. Given that
European studies tend to use population-based samples, they may be more
likely to diagnose mental health disorders among individuals with
severe MR than administrative studies conducted in the U.S.
While in the past most individuals with MR in the U.S. received
mental health care in the institutions in which they lived, most
Americans with MR currently live in community or family settings. As a
result, accessible and appropriate community-based services are
imperative in order to identify and treat mental health disorders in
this population.
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Chapter 4.--Ocular Impairments Among Individuals With Mental
Retardation
INTRODUCTION
As previously discussed, the prevalence of a condition will vary
with changes in the population studied. Most research on ocular
anomalies among individuals with MR analyzes administrative data,
examining individuals who use services in the community. Depending on
the population sampled, however, administrative studies may under- or
over-estimate the true prevalence of ocular impairments among
individuals with MR.
PREVALENCE
Available data suggest that ocular impairments (refractive errors,
strabismus, cataracts, keratoconus, nystagmus and poor visual acuity)
are more common among individuals with MR than those without MR
(Polcar, 1983; Levy, 1984; Ronis, 1989; Maino, 1996). While 25 percent
of children in the general U.S. population are reported to be
ophthalmologically impaired, as many as 72 percent of children with MR
have been so categorized (Lawson and Schoofs, 1971). A similar, if not
more striking pattern can be seen among older adults. For example,
while in the general population 0.6 percent of those between age 60 and
69, and 9.0 percent of those over 80 have been reported to have ocular
impairments (Thielsch et al., 1990 in Evenhuis, 1995), research in the
Netherlands has found a prevalence of 18 percent-20 percent of
moderate, and 8 percent of severe, visual impairment among
institutionalized individuals over 60 years of age. Other studies have
reported percentages of ocular impairments in individuals with MR over
50 years to range from 8 percent to 50 percent (Janicki and Jacobson,
1986, Day, 1987, Moss, 1991 and Van Schrojenstein Lantmann-de Valk et
al., 1992 in Evenhuis, 1995).
The most common cause of decreased vision in individuals with MR is
uncorrected refractive errors (Maino, 1996), such as astigmatism,
farsightedness and nearsightedness. While 15 percent-30 percent of the
general population has a refractive error (Sullivan, 1988 and
Regenbogen, 1985 in Gnadt and Wesson, 1992), 20 percent -60 percent of
individuals with MR in the U.S. and Canada have been reported to
require correction of refractive anomalies (Levy 1984; Woodruff et al.,
1980; Gnadt and Wesson, 1992; Maino, 1996).
Similarly, British research of administrative data on individuals
with MR found the prevalence of refractive errors to be 30 percent
(Aitchison et al., 1990), and an administrative study in Japan reported
the prevalence of such impairments to be even higher. In this study,
Kuroda et al. (1987) found that more than 80 percent of children with
MR had refractive errors (Kuroda et al., 1987).
International research on specific sub-populations of those with
MR, however, has found slightly lower prevalence estimates of
refractive errors. A Swedish study of institutionalized individuals
with MR, for example, reported that 23 percent had a considerable
refractive error in the best eye (Jacobson, 1988), and in Hong Kong,
the prevalence of refractive errors among those with profound MR
(IQ<25) has been reported to be 24 percent (Kwock et al., 1996).
In addition, research has examined the prevalence of specific types
of refractive errors, including astigmatism, hyperopia (farsightedness)
and myopia (nearsightedness). Woodruff et al. (1980), for example,
found the prevalence of astigmatism among institutionalized Canadian
individuals with MR to exceed 30 percent. Further, Levy (1984) found
higher percentages of hyperopia/astigmatism than myopia/astigmatism
among Canadian adults with MR, although the difference was more
pronounced among males than females, and a similar pattern can be seen
among individuals without MR. In contrast to most Western studies
indicating that hyperopia is more prevalent among individuals with MR
than myopia, however, Kwok (1996) found myopic and hypermetropic
astigmatisms to be equally prevalent in Hong Kong.
Further, strabismus (the inability of both eyes to fixate on a
target simultaneously because of ocular muscle imbalance) has been
attributed to uncorrected refractive errors (Woodruff, et al., 1977).
Similar to other visual impairments, the prevalence of strabismus among
individuals with MR exceeds that of the general population (Woodruff,
1977). While the prevalence of strabismus in the general population has
been found to range from 3.7 percent to 9.5 percent (Levy, 1984; Block
et al., 1997), the prevalence ranges from 21 percent to 41 percent
among American and Canadian individuals with MR (Lawson and Schoofs,
1971; Woodruff et al., 1980). Similarly, Aitchison et al. (1990) found
the prevalence of strabismus to be 31 percent in a British
administrative sample.
The prevalence of cataracts (opacity of the lens of the eye, the
capsule or both) and keratoconus (swelling and scaring of the cornea)
among individuals with MR also has been reported to be much higher than
that in the general population (Woodruff, 1977; Levy, 1984). For
example, while the percentage of lens anomaly reported for adults
without MR has been 1.42 percent, administrative data in the 1980's
indicated that between 2.68 percent (females) and 5.36 percent (males)
of Canadian adults with MR suffered from cataracts. In this same study,
keratoconus also was reported to be more common among males than
females with MR (Levy, 1984). British administrative data, however,
indicates the prevalence of cataracts to be as high as 11 percent
(Aitchison et al., 1990). These high prevalence estimates among
individuals with MR may be due to the association between cataracts,
keratoconus and Down Syndrome (see below).
Severity of MR has also been found to be associated with the
prevalence of visual impairments, with individuals with severe MR
having more ocular problems than those with mild or moderate MR.
Woodruff (1980), for example, found higher percentages of astigmatism
among institutionalized Canadian individuals with severe MR than among
those with mild or moderate MR, but reported no difference in corneal
power between these categories. Further, Hirsch (1959) reported that
individuals with higher intelligence tend to be more myopic, and those
with lower intelligence to be more hyperopic (Manley and Schuldt,
1970). In contrast, McCulloch et al. (1996) did not find a significant
trend between severity of disability and refractive error among
Scottish individuals with MR. They did, however, find a relationship
between severity of MR and visual acuity (clearness or distinctness of
vision). While 88 percent of institutionalized individuals with mild
intellectual disability had good visual acuity, only 60 percent of
those with severe disability and none of those with profound disability
achieved this level. Similarly, the prevalence of strabismus in this
study ranged from 25 percent among those with mild MR to 60 percent
among those with profound MR.
OCULAR CONDITIONS AMONG SPECIFIC POPULATIONS
When the Special Olympics, Inc. (SOI) population was studied at the
1995 International Summer Games, the prevalence of overall ocular
problems (29 percent) was comparable to that found in institutions
(Block et al., 1997; Woodruff, 1980). Specifically, 27 percent suffered
from poor visual acuity, 85 percent had refractive errors, 28 percent
suffered from astigmatism, and 18.5 percent had strabismus (Block et
al., 1997). Further, at the 1999 World Summer Games, the Special
Olympics Opening Eyes Vision Health Program found as much as 25 percent
of the screened population to have some form of strabismus (SOI, 1999).
Individuals with Down Syndrome are at a particular risk for ocular
anomalies as they age (Aitchison et al., 1990). In fact, among older
adults, ocular impairments tend to occur at an earlier age among
individuals with Down Syndrome than in the general population (Flax et
al., 2000). Visual impairments, then, are of growing concern due to the
increased longevity of patients with Down Syndrome (Aitchison et al.,
1990).
A Swedish study conducted in the late 1980's highlights the
association between age and ocular impairment among individuals with
Down Syndrome. Among 50 institutionalized patients with Down Syndrome,
Jacobson (1988) found that 22 had a visual impairment, and 14 of the 22
(64 percent) had acquired the impairment as adults. Further, although
Lyle and Jaeger (1972) reported the prevalence of keratoconus to range
in the literature from 1 percent to 8 percent among children with Down
Syndrome, Jacobson found a prevalence of 30 percent among
institutionalized adults with Down Syndrome (Jacobson, 1988).
Generally, those with Down Syndrome are more likely to suffer from
strabismus, nystagmus (constant, involuntary, cyclical movement),
cataracts and keratoconus (Woodruff, 1977; Hestness et al., 1991;
Millis, 1985 in Woodhouse et al., 1997), compared with individuals
without Down Syndrome. The prevalence of strabismus has been reported
to range from 22 percent to 43 percent among individuals with Down
Syndrome (Berk et al., 1996 in Block et al., 1997; Shapiro and France,
1985; Pires Da Chuna et al., 1996). In addition, the prevalence of
cataracts, which tends to increase as individuals with Down Syndrome
age (Jacobson, 1988), has been found to range from 13 percent to 54
percent (Shapiro and France, 1985; Jaeger, 1980 in Pires Da Chuna et
al., 1996), and the prevalence of keratoconus has been reported to be
15 percent (Shapiro and France, 1985), among individuals with Down
Syndrome.
Further, despite the association between age and ocular anomalies
in this population, children with Down Syndrome tend to have a high
prevalence of ocular impairments. For example, one study found that
among children with severe MR, 70 percent of those with Down Syndrome
had poor visual acuity, compared with 30 percent of children without
Down Syndrome (Gardiner, 1967). Additionally, a Brazilian study found a
high prevalence of strabismus (38 percent) among children with Down
Syndrome, although this condition was significantly more frequent among
older children (Pires Da Chuna et al., 1996). Moreover, refractive
errors have been reported in over 40 percent of children with Down
Syndrome (Gardiner, 1967).
Not surprisingly, then, Welsh researchers have reported that
children with Down Syndrome have a higher prevalence of astigmatism
compared with children without Down Syndrome, although this difference
was only statistically significant among older children (Woodhouse et
al., 1997). The Brazilian study mentioned above also found a high
percentage of astigmatism (60 percent), compared with strabismus (38
percent), among children with Down Syndrome (Pires Da Chuna et al.,
1996). Further, a British study found more myopia than hypermetropia
among children with Down Syndrome. Gardiner (1967) reports that among
children with severe MR, 50 percent of the children with Down Syndrome
were myopic and 15 percent were hypermetropic, while only 3 percent of
children without Down Syndrome were myopic, and as many as 40 percent
were hypermetropic.
RATIONALE FOR INCREASED PREVALENCE
Part of the increased prevalence of ocular impairments among
individuals with MR may result from the proportion of aging people with
intellectual disabilities, which has grown due to medical and social
advances (Flax et al., 2000). In fact, as detailed above, older
individuals with MR, particularly those with Downs's syndrome, report a
higher prevalence of visual impairments than individuals of the same
age in the general population.
In addition, the high prevalence of visual impairments among
individuals with organic MR may be due to the condition that caused the
MR, which may actually restrict ocular growth (Woodruff, 1980).
According to Gardiner (1967), for example, most eye anomalies among
individuals with Down Syndrome are due to a lack of coordination of the
eye during its growth. Further, as mentioned above, Down Syndrome is
often associated with cataracts, which can cause visual loss (Evehuis
et al., 1997). In other cases, however, visual impairment may result
from long-term medication use, which often has ocular side effects
(Bartlett, 1987; Polcar, 1983; Maino, 1996). Since individuals living
in institutions are often prescribed more drugs than those in the
community, this may account for the higher prevalence of visual
impairments among individuals with severe MR, who are more likely to be
institutionalized than those with mild or moderate MR (Woodruff et al.,
1980; Polcar, 1983). Additionally, as will be discussed in chapter 6, a
loss of visual efficiency and acuity may occur over time due to
inadequate detection and treatment.
SUMMARY AND IMPLICATIONS
The prevalence of ocular deficits among individuals with MR, then,
varies, depending on the population studied. Nevertheless, most
research efforts have found high percentages of visual problems within
this population. The most common conditions among individuals with MR,
both in the U.S. and internationally, appear to be refractive errors
and strabismus, although the distribution of hyperopia and mypoia tends
to vary with the population studied. In addition, individuals with
severe MR tend to have more visual anomalies than those with mild MR.
While this observation may be due to the etiology of the MR, it may
also be due to the increased medication use associated with the
institutionalization of individuals with severe MR. Further, those with
Down Syndrome are highly likely to have strabismus, cataracts and
keratoconus, particularly as they age.
Identifying ocular impairments in childhood is important because
early correction can prevent further impairments over time. Further,
visual impairment can limit the range of experiences and information
available to a child, and thus, have a significant impact on a child's
emotional, neurological and physical development (Mervis et al., 2000).
This may be particularly important for children with MR. Combined with
their other impairments, untreated or mistreated visual deficits may be
a more devastating obstacle to children with MR (who may rely greatly
on good functional vision) than to other children (who may be better
able to compensate for visual impairments in other ways) (Gardiner,
1965; Krekling and Anderson, 1974; Markovits, 1975; Ronis, 1989; Maino,
1996; Evenhuis and Nagtzaam, 1997). Correcting ocular anomalies, then,
can lead to both better functioning in society and educational and
social benefits for children, adults and their families. Given this, it
is crucial that ocular problems are identified early and, when
possible, corrected.
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Chapter 5.--Dental Health Among Individuals With Mental Retardation
INTRODUCTION
Poor oral health can have dramatic effects on an individual's
quality of life. In fact, it can cause difficulties with eating, speech
impediments, pain, sleep disturbances, missed days of work or school
and decreased self-esteem (Locker et al., 1987; Hollister et al., 1993
and Broder et al., 1994 in Perlman and Broder, 1996). In recognition of
the importance of oral health to individuals, the U.S. Surgeon General
and the World Health Organization have made oral health a national and
international priority (U.S. DHHS, 1990; U.S. DHHS, 2000a; U.S. DHHS
2000b; WHO, 2000).
The overall oral health of a population can be described by DMFTs,
which characterize the lifetime prevalence of dental caries in an
individual or population by summing the number of decayed teeth (D),
the number of missing teeth (M) and the number of filled teeth (F)
(WHO, 2000). DMFTs range from 0 to 28 or 32 (depending on the inclusion
or exclusion of wisdom teeth), with 28 or 32 indicating that all teeth
have problems related to dental caries. Among 12-year old U.S.
children, the average DMFT is 1.4 (WHO, 2000), while the average DMFT
among U.S. adults aged 35-44 years is 13.6. Among Western European
countries, DMFTs for 12-year old children range from .9 to 6.1 with a
mean DMFT of 2.6. Adults from Western European countries have DMFTs
between 8.8 to 22.9 (WHO, 2000).
Besides dental caries and tooth loss, other oral health concerns
include gingivitis (inflammation of the gums) and other periodontal
diseases (loss of connective and bone tissue that support the teeth).
According to the National Health and Nutrition Examination Survey III,
48 percent of the U.S. adult population had gingivitis and 22 percent
had other periodontal disease between 1988-1994 (U.S. DHHS, 2000a).
Although the overall oral health of the population is improving,
disparities still exist in oral health needs among subpopulations
(Waldman, 1996; U.S. DHHS, 1999; U.S. DHHS, 2000a; U.S. DHHS 2000b).
Individuals with MR, for example, have poorer overall oral health and
oral hygiene compared with the general population (Haavio, 1995;
Feldman et al., 1997; Waldman et al., 1998). The oral health and
hygiene of individuals with MR is associated with severity of MR,
etiology of MR, residential arrangements and age of the individual
(Gabre and Gahnberg, 1997). The prevalence estimates among those with
MR reported in the literature, however, are subject to the some of the
same problems as the prevalence estimates of other health conditions.
Namely, oral health prevalence estimates are based on administrative
data or small community registries that may not adequately reflect the
true prevalence in the population. Additionally, the methodologic rigor
with which some of these published studies were conducted is somewhat
questionable, in that they provide little information about the
measurement of MR or its severity among individuals, inconsistent
information about a comparison group and few, if any, statistical tests
for comparison between groups of individuals.
PREVALENCE
Dental problems are among the top ten limiting secondary conditions
among individuals with MR (Traci et al., in press; Szalda-Petree et
al., in press). According to a recent pilot study of consumers of
Montana Developmental Disability services (79.8 percent of whom had
mental retardation), Traci et al. (in press) found that the estimated
prevalence rate of oral hygiene problems was 451 per 1000 individuals
with developmental disabilities. Like the general population, one of
the most common oral health problems of children and adults with MR is
dental caries. National and international studies, however, do not
provide definitive data on the prevalence of dental caries among those
with MR relative to the general population (Haavio, 1995; Shapira et
al., 1998; Waldman et al., 2000a). The majority of authors have found
that individuals with MR have similar prevalence estimates of dental
caries to those of the general population (Pollack and Shapiro, 1971;
Svatun and Heloe, 1975; Brown and Schodel, 1976; Tesini, 1981; Pieper
et al., 1986; Costello 1990; Whyman et al., 1995; Gizani et al., 1997;
Cumella et al., 2000). Some researchers, however, have found lower
prevalence estimates of dental caries among individuals with MR, and
others report higher prevalence estimates of untreated carries in this
population (Tesini, 1981; Girgis, 1985; Forsberg et al., 1985; Barnett
et al., 1986; Kendall, 1991).
Nowak (1984), for example, examined the dental health of 3,622
disabled individuals aged 0-16+ years living in the community. Based on
examinations by dental hygienists, they found an average DMFT score of
6.44 among individuals with Down Syndrome, and an average DMFT score of
6.73 among individuals with other etiologies of MR, compared with an
average DMFT score of 6.68 among individuals in the general population.
They found, however, that the proportion of missing teeth (M) to filled
teeth (F) was much higher among individuals with MR compared with the
general population, suggesting that extraction, rather than
restoration, is the primary treatment of dental problems among those
with MR (Svatun and Heloe, 1975; Nowak, 1984).
Alternatively, other researchers have found that those with MR have
a lower prevalence of dental caries (0.4 caries per individual)
compared with the general population (Girgis, 1985; Forsberg et al.,
1985, Barnett et al., 1986). This low prevalence of dental caries is
primarily found among individuals with severe MR living in institutions
(Gabre and Gahnberg, 1994; Shapira et al., 1998). In fact, Butts (1967)
found that children with severe MR living in institutions had fewer
dental caries than children with mild or moderate MR. It is likely that
the low prevalence of dental caries found among those with severe MR
living in institutions relative to the general population results from
the prior removal of decayed teeth and the low sugar diet served in
institutions (Tesini, 1981). Some authors, however, have focused on the
prevalence of untreated caries, rather than DMFT scores, which quantify
the number of both treated and untreated caries. These studies report
that both children and adults with MR have more untreated caries than
the general population (Costello 1990; Cumella et al., 2000).
Another common oral health problem among children and adults with
MR is gingivitis, with prevalence estimates of 1.2 to 1.9 times the
estimates of the general population. Studies on the oral health of
individuals with MR, conducted in communities in the U.S. and
internationally, report prevalence estimates of gingivitis in the range
of 60 percent to 97 percent among individuals with MR compared with an
estimates of 28 percent to 75 percent in the general population (Murray
and McLeod, 1973; Sturmey and Hinds, 1983; Vignehsa et al., 1991;
Kendall, 1991; Cumello et al., 2000; Tesini, 1981; American Dental
Association, 2000). Those who are older, those living in institutions
and those with Down Syndrome tend to have higher prevalence estimates
of gingivitis (Murray and McLeod, 1973; Svatun and Gjermo, 1977;
Tesini, 1981; Forsberg et al., 1985; Vigild, 1985; Kendall, 1991). For
example, Shapira et al. (1998) suggested that the increased prevalence
of gingivitis among institutionalized individuals may be related to the
mouth dryness associated with certain medications commonly used among
individuals with MR living in such settings. Increased prevalence may
also be related to the increased surveillance of gingivitis and poor
oral hygiene among individuals living in institutions.
Other periodontal disease also has been shown to be more prevalent
among individuals with MR, especially those living in institutions,
compared with the general population. Sturmey and Hinds (1983) examined
the dental hygiene of 26 U.S. adult residents with profound MR. They
found that 33 percent had bruxism (wear on teeth due to grinding) and
20 percent lacked mastication (ability to close the mouth to chew
food). In addition, Oilo et al. (1990) examined the wear of teeth among
individuals with MR living in a Norwegian residential placement
setting. They found that 5.3 percent of men and 2.8 percent of women
had unacceptable tooth wear that required treatment compared with 1.2
percent in the general population.
DENTAL CONDITIONS AMONG SPECIFIC POPULATIONS
The dental health of two unique populations, including Special
Olympics athletes and individuals with Down Syndrome, deserve special
attention. Special Olympics Inc. (SOI) has taken an active interest in
the oral health needs of individuals with MR (Shriver, 1998; Perlman,
2000). Consequently, several studies have reported the prevalence of
oral health screenings at Special Olympics events (Feldman et al, 1997;
White et al., 1998; SOI, 1999). Feldman et al. (1997), for example,
documented the results of a screening program of Special Olympic
athletes who participated in the New Jersey Special Olympic Games in
1996. They found that 6-8-year old children with MR had similar
patterns of dental caries as children of the same age in the general
population (56 percent versus 53 percent, respectively). Adolescent
athletes 15 years and over, however, were less likely to have dental
caries than adolescents in the general population (54 percent versus 78
percent, respectively). Further, there appeared to be no difference
between athletes aged 35 to 44 years and individuals of the same age in
the general population who had tooth loss due to periodontal disease or
dental caries (62 percent versus 69 percent, respectively). In
contrast, athletes aged 65 years and older were more likely to have
lost all of their natural teeth compared with their peers without MR
(50 percent versus 36 percent, respectively). Additionally, preliminary
evidence from SOI national and international administrative data
collected in 2000 suggests that the overall prevalence of untreated
dental decay among Special Olympic athletes in the U.S. is 24.6
percent, which is higher than the prevalence estimates in the U.S.
general population (20.0 percent among school-aged children, 14.2
percent among working adults) (Kaste et al., 1996 and Winn et al., 1996
in SOI, 1999; SOI, 2000).
Further, the increased prevalence of gingivitis among Special
Olympic athletes has been documented to be higher than that in the
general population. Data from the 1996 New Jersey Special Olympic Games
suggested that 68 percent of athletes aged 35-44 years had gingivitis
compared with 42 percent in the general population (Feldman et al.,
1997). In addition, recently compiled SOI administrative data from 1999
and 2000 found high overall prevalence estimates of gingivitis among
Special Olympic athletes in the U.S. (42.0 percent), with estimates
ranging from 23.5 percent to 73.0 percent (SOSS, 1999; SOI, 1999; SOI,
2000). In sum, SOI athletes tend to have an increased prevalence of
untreated caries and gingivitis compared with the general population,
while only older athletes have been shown to have an increased
prevalence of tooth loss.
Individuals with Down Syndrome may be more susceptible to
gingivitis and other periodontal diseases because they are thought to
have underlying abnormal immunologic responses (Nespoli et al., 1993;
Barr-Agholme et al., 1992 and Yavuzyilmaz et al., 1993 in Feldman et
al., 1997; Beck et al., 1996). In a study of 120 children, Amano et al.
(2000) found that children with Down Syndrome were more likely to have
oral pathogens (or microorganisms capable of causing disease)
associated with gingivitis compared with children without MR.
RATIONALE FOR INCREASED PREVALENCE
Since oral health is dependent on oral hygiene (U.S. DHHS, 2000b),
the increased prevalence of oral health problems among individuals with
MR may be related to their oral health habits (Waldman et al., 2000b).
In fact, the oral hygiene among individuals with MR has been shown to
be consistently poor compared with individuals in the general
population (SOI, 1999). Among individuals with MR, those with moderate
or severe MR have been found to brush their teeth more regularly than
those with mild MR (Gizani et al. 1997). Those with moderate or severe
MR, however, often have impaired physical coordination and cognitive
sequencing skills that limit independence in task completion (Sturmey
and Hinds, 1983). Consequently, they generally need assistance from
caregivers to complete oral hygiene tasks.
Studies of oral health behavior also have been completed among
athletes participating in Special Olympics Games. White et al. (1998)
documented the results of a study of self-reported oral health habits
of participants in the 1997 San Francisco Bay Area Special Olympics
Special Smiles program. They found that 71.5 percent of athletes
reported brushing their teeth at least once per day, 27.1 percent
reported brushing their teeth two to six times per week and 0.8 percent
reported brushing their teeth once per week. Estimates varied by age of
participants. Younger athletes (9-20 year olds) were more likely to
report brushing their teeth two to six times per week, while older
athletes (21-49 year olds) were more likely to report brushing their
teeth once per day. Even among this relatively high functioning
population of individuals with MR, in which there is expected to be an
over-reporting of positive health behaviors (SOI, 1999), over one-
fourth did not maintain oral hygiene habits on a daily basis, providing
evidence for the importance of instruction and reinforcement of daily
oral hygiene among individuals with MR (Waldman et al., 2000c).
SUMMARY AND IMPLICATIONS
The available data suggest that the oral health of individuals with
MR is poorer than that of their peers without MR. Although there are
inconsistent findings on the prevalence of dental caries among
individuals with MR compared with the general population, the majority
of evidence suggests that individuals with MR have more untreated
caries than those in the general population. Given that treatment of
caries is a prevalent and accepted part of good health behavior for
much of the world, this lack of treatment, even in developed countries,
suggests problems in access to dental services.
Likewise, there is evidence that individuals with MR are likely to
have a higher prevalence of gingivitis and other periodontal diseases
compared with the general population. The prevalence of these oral
health conditions among individuals with MR, however, is dependent on
age, etiology of MR and living situation. Older individuals with MR are
at higher risk for poor oral health compared with younger individuals
with MR and those in the general population. Further, individuals with
Down Syndrome are more likely to have gingivitis compared with
individuals in the general population. Additionally, although increased
surveillance may influence the prevalence of disease detected,
individuals living in institutions are at increased risk for gingivitis
and other periodontal diseases compared with individuals in the general
population.
As in the general population, good oral hygiene is an important
measure to prevent oral diseases among individuals with MR.
Interestingly, those with mild MR appear to have poorer oral hygiene
when compared with those with moderate or severe MR, chiefly due to the
increased supervision of those with more severe MR. This suggests that
efforts to improve the oral hygiene of individuals with mild MR may be
a particularly effective intervention.
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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.]