U.S. GOVERNMENT PRINTING OFFICE

71–288 PS WASHINGTON : 2001

S. HRG. 107–92

SPECIAL OLYMPICS REPORT

HEARING

BEFORE A

SUBCOMMITTEE OF THE

COMMITTEE ON APPROPRIATIONS

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

SPECIAL HEARING

MARCH 5, 2001—ANCHORAGE, ALASKA

Printed for the use of the Committee on Appropriations

(

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

For sale by the U.S. Government Printing Office

Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
(II)

COMMITTEE ON APPROPRIATIONS

TED STEVENS, Alaska, Chairman

THAD COCHRAN, Mississippi

ARLEN SPECTER, Pennsylvania

PETE V. DOMENICI, New Mexico

CHRISTOPHER S. BOND, Missouri

MITCH MCCONNELL, Kentucky

CONRAD BURNS, Montana

RICHARD C. SHELBY, Alabama

JUDD GREGG, New Hampshire

ROBERT F. BENNETT, Utah

BEN NIGHTHORSE CAMPBELL, Colorado

LARRY CRAIG, Idaho

KAY BAILEY HUTCHISON, Texas

MIKE DEWINE, Ohio

ROBERT C. BYRD, West Virginia

DANIEL K. INOUYE, Hawaii

ERNEST F. HOLLINGS, South Carolina

PATRICK J. LEAHY, Vermont

TOM HARKIN, Iowa

BARBARA A. MIKULSKI, Maryland

HARRY REID, Nevada

HERB KOHL, Wisconsin

PATTY MURRAY, Washington

BYRON L. DORGAN, North Dakota

DIANNE FEINSTEIN, California

RICHARD J. DURBIN, Illinois

TIM JOHNSON, South Dakota

MARY L. LANDRIEU, Louisiana

STEVEN J. CORTESE, Staff Director

LISA SUTHERLAND, Deputy Staff Director

JAMES H. ENGLISH, Minority Staff Director

SUBCOMMITTEE ON DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND

EDUCATION, AND RELATED AGENCIES

ARLEN SPECTER, Pennsylvania, Chairman

THAD COCHRAN, Mississippi

JUDD GREGG, New Hampshire

LARRY CRAIG, Idaho

KAY BAILEY HUTCHISON, Texas

TED STEVENS, Alaska

MIKE DEWINE, Ohio

TOM HARKIN, Iowa

ERNEST F. HOLLINGS, South Carolina

DANIEL K. INOUYE, Hawaii

HARRY REID, Nevada

HERB KOHL, Wisconsin

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)
(III)

CONTENTS

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

(1)

SPECIAL OLYMPICS REPORT

MONDAY, MARCH 5, 2001

U.S. SENATE,

SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN

SERVICES, AND EDUCATION, AND RELATED AGENCIES,

COMMITTEE ON APPROPRIATIONS,

Anchorage, AK.

The subcommittee met at 10:05 a.m., in Sheraton Anchorage

Hotel, Anchorage, AK, Hon. Ted Stevens presiding.

Present: Senator Stevens.

OPENING STATEMENT OF SENATOR TED STEVENS

Senator STEVENS. Thank you all very much. I noticed the bulletin board as we came in said the downhill is canceled for bad

weather. Welcome to all the skiers.

Today our Committee on Appropriations is convening this special

field hearing of the Subcommittee on Labor and Human Services

and Education to receive from the Special Olympics the report on

the health status and needs of persons with mental retardation. I

have here with me Bettilou Taylor, who is the chief clerk of that

subcommittee. The chairman is Senator Arlen Specter, and I am

conducting the hearing today for him.

I understand that many of you have important information to

present to us today. Before you do, I want to express my appreciation to the Special Olympics for holding the 2001 Special Olympics

World Winter Games here in Anchorage. That was a marvelous beginning last night, and I want to thank my son Ben, the president

and CEO of the 2001 Special Olympics, the World Winter Games

Organizing Committee, Patty McGuire, who is the president and

the board of the Special Olympics World Winter Games here in Anchorage. It has been a long trail to this time, and everything is

coming together in a marvelous way.

We are here today to receive the report and hear from some witnesses who will help us understand the special health needs of persons with mental retardation. It is worth noting the remarkable

history behind this organization. The Special Olympics began in

1968, when Eunice Kennedy Shriver organized the First International Special Olympics, held at Soldiers Field in Chicago.

You might say that the flame that lights the Special Olympics

was sparked by Ms. Shriver at that time, in her deeply held conviction that individuals with mental retardation are far more capable

in sports and physical activities than experts were willing to recognize then. We are honored to have with us today Eunice and Sargent Shriver. Thank you very much for being here.
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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.
3

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.
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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.
5

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
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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
7

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.
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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.
9

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.
10

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.
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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?
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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.
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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
14

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
15

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
16

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.
17

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 selfadvocacy, 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.
18

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.
19

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.
20

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 Excel-
21

lence (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.
22

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 disabil-
23

ities—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 CenterUAP 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
24

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 CaseWestern 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
25

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.
26

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.
27

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.
28

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.
29

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
30

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.

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

Quality of life indicator Response

Former

residents

(percent)

Family/

guardians

(percent)

When goals are set for you do people .................................................. Help you reach them .. 95.5 80.0

Feel safe in your neighborhood? ........................................................... Very safe ..................... 81.8 58.8

Do you do fun things in the community? ............................................. Yes .............................. 72.7 64.7

Are you happy with where you live? ..................................................... Very happy .................. 68.2 64.7

Do staff help you be part of your community? .................................... Yes .............................. 68.2 66.7

Transportation if you want to go somewhere? ..................................... Most of the time ........ 68.2 93.3

Do you get the services you need? ....................................................... Yes .............................. 63.6 82.3

Do you feel lonely? ................................................................................ No, not often .............. 59.1 69.2

Feel like an important part of your family? ......................................... Yes .............................. 45.5 58.3

How do your neighbors treat you? ........................................................ Very good .................... 40.9 42.9

Choice in job/what you do most days? ................................................ Yes .............................. 35.0 38.5

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 your home? ............................................ Often ........................... 9.1 15.4

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
31

2 Attachment 2. Report on Shawneen.

3 Attachment 3: Report on Zachary.

4 Attachment 4. Report on Tyler.

member, guardian or resident of these institutions has ever asked to return to an

institutional setting.

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.

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.

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.

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
32

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
33

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.
34

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

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:

—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 communitybased. 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.
35

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
36

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
37

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
38

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

admission

Age at

discharge

Years at

harborview

All Harborview Residents (1964–1997) .................................................................. 31.4 45.4 13.7

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.
39

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

Quality of life indicator Response

Former

residents

(percent)

Family/

guardians

(percent)

When goals are set for you do people .................................................. Help you reach them .. 95.5 80.0

Feel safe in your neighborhood? ........................................................... Very safe ..................... 81.8 58.8

Do you do fun things in the community? ............................................. Yes .............................. 72.7 64.7

Are you happy with where you live? ..................................................... Very happy .................. 68.2 64.7

Do staff help you be part of your community? .................................... Yes .............................. 68.2 66.7

Transportation if you want to go somewhere? ..................................... Most of the time ........ 68.2 93.3

Do you get the services you need? ....................................................... Yes .............................. 63.6 82.3

Do you feel lonely? ................................................................................ No, not often .............. 59.1 69.2

Feel like an important part of your family? ......................................... Yes .............................. 45.5 58.3

How do your neighbors treat you? ........................................................ Very good .................... 40.9 42.9

Choice in job/what you do most days? ................................................ Yes .............................. 35.0 38.5

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 your home? ............................................ Often ........................... 9.1 15.4

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.
40

—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
41

family members/guardian survey respondents did not know if these services were

being provided or chose not to answer the question on the survey.

Community services

Former

residents

(percent)

Family/

guardian

(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 resident’s life?

Former

residents

(percent)

Family/

guardian

(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
42

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’’ feelingmore 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:
43

CURRENT STATUS AND SERVICE COST FOR FORMER HARBORVIEW RESIDENTS:1988–1997

[1996 Harborview Cost of Care: $164,000/person]

Status Number Annual cost

all residents

Annual cost

per 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-funded

services

MRDD waiver

funded services

Pioneer’s

homes

Total known

living Unknown 1

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 benefits ....................................................... 13,755 4,641,595 299,864 4,955,214 ?

Average annual cost per individual ..................... 6,878 75,082 74,966 72,871 ?

Total annual state cost of services and

benefits ............................................... 13,515 2,003,967 299,864 2,317,346 ?

Average annual state cost of services and benefits .................................................................... 6,758 32,322 74,966 34,079 ?

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
44

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-funded

services

MRDD waiverfunded serv- ices

Pioneer’s

homes

Total known living Unknown

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 benefits ....................................................... .................... 1,467,845 238,698 1,706,543 ?

Average annual cost per individual ..................... .................... 97,856 79,566 94,808 ?

Total annual state cost of services and

benefits ............................................... .................... 623,472 238,698 862,170 ?

Average annual state cost of services and benefits .................................................................... .................... 41,564 79,566 47,898 ?

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:

Study Federal funds GF/MH funds Corporate

receipts

GF and GF

program

receipts

Total costs

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 (excluding benefits not considered in the

Erickson study) ................................................. 46,810 44,728 .................... 3,340 94,878

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
45

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
46

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).
47

ATTACHMENT 5.—DEVELOPMENTAL DISABILITIES DIRECT SERVICE WORKER STUDY

RESULTS AND FINDINGS, GOVERNOR’S COUNCIL ON DISABILITIES AND SPECIAL EDU- CATION, 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 strat-
48

egies 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 CommunityBased 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
49

—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 oncall 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 count) .................................................................... 3,007 131 58

Number of New Persons Served in the Past Year ............................................................. 376 16 7

Number of Direct Service Workers (FTEs) ........................................................................... 468 21 8

Number of Front Line Supervisors (also have direct service responsibilities) .................. 73 3 1

Number of Support Staff/Administrators ............................................................................ 114 5 .75

Number of ‘‘On Call’’ Direct Service Workers .................................................................... 351 15 5
50

TABLE 1.—CHARACTERISTICS OF SURVEY RESPONDENTS—Continued

Total Average Median

Number of ‘‘On Call’’ Front Line Supervisors .................................................................... 3 .13 1 NA

Number of ‘‘On Call’’ Support Staff/Administrators .......................................................... 24 1 1 NA

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), inhome 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

Service Number of

providers

Total

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
51

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

Recruitment barrier

Degree of difficulty (percent)

None Mild Moderate Severe

Compensation/Pay .......................................................................................... ................ 19 24 57

Hours of Work (nights, weekends, holidays) ................................................. 19 5 62 14

Lack of Qualified Applicants ......................................................................... 9 22 35 35

Lack of Applicants ......................................................................................... 5 33 38 24

Workload (amount or difficulty of work) ....................................................... 18 27 41 14

Severity of Consumers’ Disabilities ............................................................... 24 24 38 14

Lack of Recruitment Resources ..................................................................... 30 25 30 15

Lack of Child Care ......................................................................................... 32 32 32 5

Applicants Don’t Have Work Ethic ................................................................. 33 33 29 5

Location (transportation, commute) .............................................................. 33 38 14 14

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

DSW ‘‘On-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 Completed ......................................................... 17 7

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
52

TABLE 6.—Recruitment Expenses—Continued

Responses

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

Study

total

Statewide

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 direct service responsibilities) ................................ 73 89

Number of Support Staff and Administrators ................................................................................. 114 139

Number of On-Call Workers ............................................................................................................. 351 427

Total DSW workforce vacancies (full-time and part-time) 4/16–6/12/98 1 ................................... 130 158

Total annual DSW workforce (full-time and part-time) vacancies ................................................ 780 948

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 portion of time and one-half costs and payroll expenses 7/1/97–12/31/97 ............................................................................................................ $297,580 $362,271

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
53

TABLE 8.—STATEWIDE ESTIMATES FOR DD SERVICES PROVIDERS—Continued

Study

total

Statewide

estimate

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.
54

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

Occupation Average

wage

Amount

more than

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.
55

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

Occupation Average hourly wage

Median 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 Paraprofessional ................................................................. 17.97 16.92

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, Paraprofessionals ................................................... 17.70 15.34

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

1Weighted Average.

2Weighted Median.

TABLE 13.—WAGES PAID TO RESPITE AND RESIDENTIAL WORKERS

Occupation Average hourly wage

Median 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

1Weighted Average.

2Weighted 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 infrastruc-
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ture. 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.
57

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.
58

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.
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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
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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.
61

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 Bene-
62

ficiary 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. Wellplanned 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
63

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.
64

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.
65

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.
66

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 alcoholaffected 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 real-
67

ize 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
68

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.
69

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
70

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.
71

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.
72

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
73

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 partner-
74

ships 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
75

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
76

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
77

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.
78

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.
79

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.
80

1Dykens 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. 2World Health Organization (WHO): World Heath Statistics Annuals. Vols. 1990–1996. Geneva; United Nations. 1997.

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 yearround 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 wellbeing.1

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.

A person is diagnosed as having mental retardation based on three generally accepted criteria: intellectual functioning level (IQ) is below 70–75; significant limita-
81

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. 4 U.S. Department of Health and Human Services. Healthy People 2010 (Vol. I) 2nd ed. Washington, D.C.; GPO, November 2000.

tions 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.

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
82

5 U.S. Department of Health and Human Services. Healthy People 2000. Washington, D.C.;

GPO, January 1990. 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.

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.

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

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
83

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. 8Special Olympics, Inc. Strategic Research Symposium Papers. Pittsboro, North Carolina,

June 24–25, 1999.

with mental retardation have received little consideration. Consistent with this finding, the information concerning the health status and needs of persons with mental

retardation is entirely inadequate. Further, there is a scarcity of information on specific disease prevention and health promotion interventions that could improve the

quality and length of life for persons with mental retardation.

5. Even in situations where persons with mental retardation experience similar

levels of disease to persons without mental retardation, access to timely and appropriate health care often is not adequate and generally poorer than for the overall

population. This leads to unnecessary suffering, functional compromise, and costs to

individuals, families and society.

6. Although persons with mental retardation need health and health financing

programs that are responsive to their particular needs, too often they are forced into

general programs that actually can compromise their health. The most recent example of this is the movement toward managed care in Medicaid.

Families have served as principal advocates for the health care of their children

with mental retardation. While many families are fortunate to have private health

insurance and/or personal resources to help cover health care expenses, too many

families and individuals face substantial health care costs on their own. While a

large percentage of the population with mental retardation is covered under state

Medicaid programs, many of these programs are plagued by a variety of problems,

including poor reimbursement rates to providers, excessive paperwork and delays,

limitations and exclusions in benefits, and a generally poor reputation among providers.

As an example, while dental services for many children are covered under Medicaid, only one-in-five eligible children receives any dental services each year.7 In

most states, there are limited dental care benefits for adults, so that individuals

with mental retardation are no longer eligible for dental care coverage under Medicaid, once they reach the age of maturity. Also, it should be noted that dental care

is essentially unavailable under Medicare.

7. 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.

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.
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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,
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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. NonGovernmental 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 wellestablished 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.
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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 Olympictype 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
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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
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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 nonU.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 per-
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cent 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 (m2))

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.
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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
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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
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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 pre-
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viously 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 cat-
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egories 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 DSMIV 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).
95

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
96

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 NHISD (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
97

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 preva-
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lence estimates for MR increase to 2.21 percent, similar to that found in other countries (Zigler, 1987b).

Other developed countries also have registries of mental retardation, which makes

population-based studies more feasible than in the U.S. The overall prevalence of

moderate and severe MR, arrested development or severe abnormality among children and adults in England has been found to range between 0.3 percent and 0.5

percent (Wing, 1971; Holt et al., 1973; Elliot et al., 1981; Goh et al., 1994). A study

using a surveillance registry in British Columbia found the overall MR prevalence

rate to be similar (0.4 percent), with 0.1 percent mild, 0.1 percent moderate, 0.05

percent severe, 0.04 percent profound and 0.01 percent unspecified MR (Herbst and

Baird, 1983). In Ireland, using an IQ cutoff of 50 (severe MR), the rate of MR among

adults 20–29 was found to range from 0.4 to 0.6 percent (Mallon et al., 1991).

In less developed countries, percentages of MR are generally found to be higher,

from 1.6 percent–3.0 percent (Islam et al., 1993). However, several recent studies

have found the prevalence of MR to be quite low. For example, in The People’s Republic of China, the use of intelligence tests in several districts found a prevalence

that ranged between 0.4 percent and 0.7 percent (Kuo-Tai, 1988). Similarly, a study

in Cape Town, South Africa, using administrative data, found the prevalence of severe MR to be 0.3 percent (Finedlander et al., 1982), and a population-based study

of prevalence in Bangladesh found a rate of 0.6 percent for severe MR and 1.4 percent for mild MR (Islam et al., 1993). Further, a study that went door-to-door in

India, using the Binet-Simon scale to define MR as an IQ<80, has indicated a prevalence rate of 0.4 percent in the general population and 1.0 percent among children

(Satapathy et al., 1985).

Summary and Implications

Most prevalence studies, then, utilize IQ alone to define MR. In the U.S., while

the range of MR prevalence has been reported to be between 0.3 percent and 3.0

percent, most studies using administrative or population-based data have found a

prevalence of 1.0 percent. In contrast, international studies, using population-based

registries and somewhat different definitions of MR, report the prevalence to be less

than 1.0 percent. The U.S. prevalence of severe MR, however, is comparable to that

of other countries; in fact, some studies have found lower percentages of severe MR

in the U.S. than in other countries. Since most mild or moderate MR is identified

among school children in the U.S., the discrepancy in the prevalence of those conditions may due to international differences in school-based testing and services requirements (Palfrey, 1994), as well as mainstreaming practices. Further, the low

prevalence of MR in some countries may be due to socio-cultural factors. In China,

for example, there is a one child per family policy (Kane and Choi, 1999) and a

strong preference for terminating pregnancies with genetic abnormalities (Mao and

Wertz, 1997), both of which may affect the number of children born with MR.

These comparisons indicate that the international discrepancies in prevalence

may, in part, be due to the different populations, definitions of MR, and methods

of identification used in research studies. Moreover, cultural and political differences

among countries may influence both the number of individuals with MR and the

numbers that are counted in research studies. Despite these discrepancies, however,

individuals with MR are present in all countries, and their needs, including their

health needs, merit attention.

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CHAPTER 2.—PHYSICAL HEALTH CONDITIONS CONTRIBUTING TO THE MORBIDITY AND

MORTALITY OF INDIVIDUALS WITH MENTAL RETARDATION

INTRODUCTION

For the purpose of this report, physical health conditions refer to chronic conditions that are common causes of death (such as cardiovascular diseases, cancer, diabetes, lung diseases, and unintentional injuries), risk conditions related to these

chronic diseases, and childhood conditions and prevention measures that influence

the long-term health and functioning of individuals (such as otitis media, pediatric

asthma, child maltreatment and immunizations). Other physical health conditions,

such as ocular and oral health conditions, are not included in this definition, and

will be discussed in separate chapters.

Lacking large population-based studies, evidence documenting the prevalence of

these physical health conditions among individuals with MR comes primarily from

small community registries or administrative data from outpatient clinics or residential facilities. Since many individuals with MR do not receive services on a regular basis (Howells, 1986; Singer et al., 1986), however, studies using outpatient

samples may underreport the prevalence of health conditions that do not always

prompt medical interventions. Conversely, prevalence estimates from institutions

may overreport the prevalence of certain health conditions, because those in hospitals or long-term residential settings are generally the most severely physically

impaired and are likely to be monitored at regular intervals (Eyman et al., 1986).

Prevalence estimates are also affected by the identification of symptoms, either

by the individuals with MR or by the caregiver. Often limited in communication

skills, individuals with MR rely on caregivers to identify symptoms and report them

to providers. Providers, then, must detect clinical manifestations of disease among

individuals who lack communication skills to provide descriptions of symptoms. Consequently, syndromes based largely on reported symptoms rather than physical

signs or specific routinely administered tests may also be underidentified.

MORTALITY AND MORBIDITY

Despite overall gains in life expectancy, gaps still exist between individuals with

MR and individuals in the general population. In Western Europe and the United

States, the overall life expectancy at birth is 74.0 to 76.5 years and life expectancy

at 65 years is 81.7 to 82.7 years (Hoyert et al., 1997; WHO, 1997). In contrast, individuals with mild or moderate MR have an average life expectancy at 45 of 66.1

years, while those with severe MR have an average life expectancy at 45 of 53.6

years. Thus, the life expectancy of individuals with MR decreases with increased severity of MR and increased severity of physical impairments (Janicki et al., 1999;

Eyman et al., 1990; O’Brien et al., 1991; Eyman et al., 1993), suggesting that those

with mild or moderate MR have different health trajectories than those with severe

or profound MR.

Further, life expectancy may be related to place of residence, although the results

of the research are inconsistent. Hayden (1998) points out that some researchers

have documented higher mortality rates among individuals with MR in institutions

compared with those in the community, while others have suggested that individuals in the community have higher mortality rates (Strauss et al., 1998).

Living longer than individuals with severe MR, those with mild or moderate MR

are more likely to have age-related health conditions similar to the general population. With a few exceptions, the prevalence of physical health problems (including

cardiovascular disease, cancer, cerebrovascular disease, lung conditions and diabe-
103

tes) 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
104

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
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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 mil-
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lion 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).
107

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
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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 institutionbased 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,
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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
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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
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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
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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 incon-
118

sistent 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; BorthwickDuffy 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 compul-
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sive disorder difficult to diagnose (AACAP, 1999). As a result, diagnoses may depend

on caregivers’ abilities to identify symptoms and clinicians’ observations (BrothwickDuffy 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 ValentiHein, 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 selfconcept 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
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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
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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
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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
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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.
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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,
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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
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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 communitybased 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
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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).
132

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;
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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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9. Evenhuis HA, Mul M, Lemaire EKG, de Wijs JPM. Diagnosis of sensory impairment in people with intellectual disability in general practice. J Intell Disab Res.

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10. Evenhuis HM, Nagtzaam L (eds). Early identification of hearing and visual

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11. Flax ME, Luchterhand C. Aging with developmental disabilities: Changes in

vision. Aging with Mental Retardation. Available at: http://www.thearc.org. August,

2000.

12. Gardiner PA. Eye disorders in handicapped children. Maryland Association for

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13. Gardiner PA. Visual defects in cases of Down’s Syndrome and in other mentally handicapped children. Br J Ophthalm. 1967;51:469–474.

14. Gnadt G, Wesson MD. A survey of the vision assessment of the developmentally disabled and multi-handicapped in University Affiliated Programs (UAPs).

J Am Optom Assoc. 1992;63:619–625.

15. Haugen OH, Aasved H, Bertelsen T. Refractive state and correction of refractive errors among mentally retarded adults in a central institution. Acta

Ophthalmologica Scandinavica. 1995;73:129–132.
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16. Hestnes A, Sand T, Fostad K. Ocular findings in Down’s Syndrome. J Ment

Defic Res. 1991;35:194–203.

17. Hirsch MJ. The relationship between refractive state of the eye and intelligence test scores. Am J Optom and Rch Am Acad Optom. 1959;36(1):12–21.

18. Hirst M. Young adults with disabilities: Health, employment and financial

costs for family carers. Child Care, Health Dev. 1985;11:291–307.

19. Jacobson L. Ophthalmology in mentally retarded adults. Acta

Ophthalmologica. 1988;66:457–462.

20. Jaeger FA. Ocular findings in Down’s syndrome. Trans Am Ophthalmol Soc.

1980;78:808–845.

21. Janicki MP, Jacobson JW. Generational trends in sensory, physical, and behavioral abilities among older mentally retarded persons. Am J Ment Defic.

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22. Joseph AL. Eye care in state institutions for the mentally retarded. The Eye,

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23. Krekling S, Andersen P. Visual performance of children in Norwegian special

schools. Br J Physiol Optics. 1973;28(3):149–161.

24. Kuroda N, Adachi-Usami E. Evaluation of pattern visual evoked cortical potentials for prescribing spectacles in mentally retarded infants and children. Docum

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Physiol Optics. 1980; 57(2):70–84.

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,
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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,
137

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
138

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
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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
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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
143

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
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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 statesupported 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.
145

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
146

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
147

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
148

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 con-
149

siderable 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,
150

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

Disability

Altered

growth,

underweight,

obesity

Altered

energy

needs

Altered

nutrient

needs,

nutrient

deficient

Constipation/

diarrhea

Feeding

problems

Drug-nutrient

interactions

Downs Syndrome .......................... XXXXX

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 nu-
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trition 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)
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—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 profes-
159

sionals 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
160

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 grantmaking 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.
161

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?
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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.
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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 followup 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
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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, faithbased 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?
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Answer. This will be one of the topics discussed at the SG’s workshop. We need

to find ways to minimize the complexity of paper work required and adequately reimburse physicians for their services. We would like to get input from relevant

stakeholders on this topic and to identify incentives for improving care.

Question. Special Olympics commissioned the Yale study because there is a woeful

lack of data on the health status and needs of people with mental retardation. What

can the U.S. Public Health Service do to remedy the lack of information on the

health of this population?

Answer. A large barrier to addressing the specific health needs of people with

mental retardation is the lack of available data. The Public Health Service, through

the new Center on Birth Defects and Developmental Disabilities at CDC, has begun

to work with a limited number of states to develop systems to monitor and track

the health status of persons with mental retardation and other disabilities.

CONCLUSION OF HEARING

Senator STEVENS. Thank you all very much for being here, that

concludes our hearing.

[Whereupon, at 11:55 a.m., Monday, March 5, the hearing was

concluded and the subcommittee was recessed, to reconvene subject

to the call of the Chair.]

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