CLOSING THE GAP:

A National Blueprint to Improve the Health of

Persons with Mental Retardation

Goal 1: Health Promotion and Community Environments

Goal 2: Knowledge and Understanding Goal 3: Quality of Health Care

Goal 4: Training of Health Care Providers

Goal 5: Health Care Financing Goal 6: Sources of Health Care

Report of the Surgeon General’s Conference

on Health Disparities and Mental Retardation

U.S. Department of Health and Human Services • 2002

CLOSING THE GAP:

A National Blueprint to Improve the Health of

Persons with Mental Retardation

Report of the Surgeon General’s Conference on

Health Disparities and Mental Retardation

2002

For Administrative Use

U.S. Department of Health and Human Services

Public Health Service

Office of the Surgeon General

Rockville, MD
National Library of Medicine Cataloging in Publication

Closing the gap : a national blueprint to improve the health of persons with mental retardation : 

report of the Surgeon General’s Conference on Health Disparities and Mental Retardation.

Rockville, MD : U.S. Dept. of Health and Human Services, Public Health Service, Office of the

Surgeon General ; Washington, D.C. : For sale by the Supt. of Docs., U.S. G.P.O., 2002.

Also available on the Internet.

1. Surgeon General’s Conference on Health Disparities and Mental Retardation (2001 : Washington, 

D.C.) 2. Mental Retardation – Rehabilitation. 3. Mentally Disabled Persons. 4. Health Planning. 5. Delivery

of Health Care. 6. Caregivers. I. United States. Public Health Service. Office of the Surgeon General. II.

National Institute of Child Health and Human Development (U.S.) III. Centers for Disease Control and

Prevention (U.S.)

02NLM: WM 308 C645 2002

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Suggested Citation:

U.S. Public Health Service. Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental Retardation.

Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation. February 2001. Washington, D.C.

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Fax: 1 (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001
Good health is essential to quality of life, and the

health and well-being of its people are essential to the

strength of the Nation. At a recent White House

dinner honoring the Special Olympics, President

Bush eloquently stated that “America at its best

upholds the value of every person and the possibilities

of every life.” He went on to say that “the story of

our country is an ever-widening circle, a society in

which everyone has a place and everyone has

something to give.”

Yet there is a segment of our population that too

often is left behind as we work to achieve better

health for our citizens. Americans with mental

retardation, and their families, face enormous

obstacles in seeking the kind of basic health care that

many of us take for granted. Unfortunately, societal

misunderstanding of mental retardation, even by

many health care providers, contributes to the terrible

burden. Too few providers receive adequate training

in treating persons with mental retardation. Even

providers with appropriate training find our current

service system offers few incentives to ensure

appropriate health care for children and adults with

special needs. American health research, the finest in

the world, has too often bypassed health and health

services research questions of prime importance to

persons with mental retardation.

Individuals with mental retardation are more

likely to receive inappropriate and inadequate

treatment, or be denied health care altogether.

Children, youth, and adults with mental retardation

receive fewer routine health examinations, fewer

immunizations, less mental health care, less

prophylactic oral health care, and fewer opportunities

for physical exercise and athletic achievement than

do other Americans. Those with communication

difficulties are especially at greater risk for poor

nutrition, overmedication, injury, and abuse.

In issuing this Blueprint for improving the health

of those with mental retardation, the Surgeon

General has drawn the attention of the Nation to the

longstanding health disparities experienced by a group

of Americans who deserve our full attention and

support in their efforts to get the health care they

need. By identifying these needs and outlining

concrete action steps for addressing them, this

community has created an unprecedented opportunity

to narrow the gap between the health needs and

health services for this special group. The Surgeon

General’s national Blueprint, which complements the

suggestions contained in the President’s New Freedom

Initiative, takes the essential first steps needed to bring

together self-advocates with mental retardation and

their families with the scientists, health care

providers, professional training institutions, advocacy

organizations, and policymakers who can make a

difference in the lives of individuals with mental

retardation.

Our national commitment to the health of every

American is demonstrated most clearly in efforts to

reach those whose circumstances in life are most

difficult. In this important new report, the Surgeon

General articulates how the health of people with

mental retardation can be significantly strengthened

in the years ahead.

iii

Message from Tommy G. Thompson

Secretary of Health and Human Services

v

As Surgeon General I have focused on identifying

and addressing some of our Nation’s pressing unmet

health needs and disparities in health and health care.

These efforts have dealt with issues such as mental

health (especially children’s mental health), suicide,

oral health, and obesity. By learning more about

these issues and focusing the country’s attention on

them, the process has begun to develop broad support

for specific steps that can be taken to improve them.

Over the last year, we undertook an effort to

examine the health of persons with mental

retardation, especially the health disparities they

suffer. It became apparent that as our system of care

for those with mental retardation evolved, our

attention to their health lessened. Even a quick

glimpse at the health status of persons with mental

retardation, both children and adults, reveals glaring

deficiencies that must be addressed. To better

understand, we sought to listen, not just to the

experts in this field, but directly to individuals with

mental retardation, to their family members, and to

their other caregivers—those who live and struggle

every day with the wide spectrum of issues that affect

the health of these individuals.

This dedicated community can teach us a great

deal. They can help us all to better understand and

face their unmet needs, which are significant and all

too common. Perhaps the greatest lesson is that as a

society we have not really been listening and paying

attention to them. We have been too likely to expect

others, without mental retardation, to speak to their

needs. We have found it too easy to ignore even their

most obvious and common health conditions. Just as

important, we have not found ways to empower them

to improve and protect their own health. No one

who cares would suggest that this is acceptable.

Nothing, however, will follow from this effort unless

we help our society better understand and appreciate

that these persons are an integral part of the

American people, with much to give if they, too,

enjoy proper health.

Each person reading this report has an

opportunity to learn more about these individuals’

lives and needs, and to work together to improve their

health. As the Report of the Surgeon General’s

Conference on Health Disparities and Mental

Retardation, held in December 2001, this national

Blueprint identifies goals and action steps set forth by

this community as its priority needs. 

The goals and action steps should be considered

for implementation at all levels, in all sectors of our

society, from single individuals acting in their own

communities to the largest national organizations or

government agencies acting on state- and nation-wide

issues. Each of us must accept the responsibility to do

our part to improve the health of all persons with

mental retardation.

Reports don’t have arms and legs. Like many

others, this report will just sit on shelves unless we

turn it into action. It is important to listen to those

affected to learn what needs to be done, but to listen

and not respond with determined action will only

heighten the injustice this community has too long

endured. I ask everyone reading this report to do your

part to achieve our noble objective of improving the

health of all persons with mental retardation. If we

do, together we will make a significant difference in

the lives of these important individuals.

Foreword from the Surgeon General

David Satcher, M.D., Ph.D.

Surgeon General

January 2002

TABLE OF CONTENTS

Message from Secretary Tommy G. Thompson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iii

Foreword from the Surgeon General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi

Disparities and Diversity. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

Identifying the Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

Setting the Agenda and Realizing the Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

Dual Diagnosis Research Agenda . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

Federal Initiatives on Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii

A National Blueprint to Improve the Health of Persons with Mental Retardation . . . . . . . . . . . . . . . . . . . . . . 1

The National Conference. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Drafting the Blueprint . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Core Values in the Blueprint . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Goals and Action Steps . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Goal 1: Integrate Health Promotion into Community Environments . . . . . . . . . . . . . . . . . . . . . . . . . 3

Goal 2: Increase Knowledge and Understanding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Goal 3. Improve Quality of Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Goal 4. Train Health Care Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Goal 5. Ensure Effective Health Care Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Goal 6. Increase Sources of Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Appendices

A. Summary of the Plenary Session of December 5, 2001: Background Presentations . . . . . . . . . . . . . A–1

B. Participants in the Conference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . B–1

C. Potential Partners in Realizing the Blueprint. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . C–1

D. Health Disparities and Mental Retardation: Programs and Creative Strategies 

to Close the Gap . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . D–1

E. Summary of the Surgeon General’s Listening Session on Health 

Disparities and Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . E–1

F. Surgeon General’s Listening Session on Health Disparities and Mental 

Retardation: Speakers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . F–1

CLOSING THE GAP: 

A National Blueprint to Improve the Health of

Persons with Mental Retardation

REPORT OF THE SURGEON GENERAL’S CONFERENCE ON

HEALTH DISPARITIES AND MENTAL RETARDATION

vii

ix

The Surgeon General expresses sincere

appreciation to all who contributed their time,

experience, and knowledge to support the

development of this report and national Blueprint to

improve the health of individuals with mental

retardation. The Surgeon General would especially

like to acknowledge the following:

THE PUBLIC

Among the most valuable contributions were

those from members of the public who participated in

many ways:

• Approximately 8,500 comments were received at

the Surgeon General’s dedicated website and at

the Surgeon General’s Listening Session on

Health Disparities and Mental Retardation,

October 10, 2001.

• The participants and speakers at the five sites

included in the Surgeon General’s Listening

Session—Civitan International Research Center

at the University of Alabama, Eunice Kennedy

Shriver Center at the University of Massachusetts

Medical School, Oregon Institute on Disability &

Development at the Oregon Health & Science

University, Waisman Center at the University of

Wisconsin, and the National Institutes of Health.

• The participants, speakers, and moderators at the

Surgeon General’s Conference on Health

Disparities and Mental Retardation, especially the

self-advocates and family members who shared

their perspectives on the day-to-day challenges of

enabling persons with mental retardation to

achieve good health.

NATIONAL ORGANIZATIONS

Many national organizations of advocates,

patients, and health care professionals supported the

Surgeon General’s effort by sharing their expert

knowledge, and by participating in the Listening

Session and the Conference. In particular, the

Surgeon General would like to recognize the major

efforts contributed by the following organizations:

American Academy of Pediatrics

American Association on Mental Retardation

American Dental Association

American Osteopathic Association

American Psychiatric Association

Association of University Centers on Disabilities

Child Neurology Society

Joseph P. Kennedy, Jr. Foundation

Special Olympics, Inc.

The Arc of the United States

The support and continued interest of the

following national organizations also are appreciated:

American Academy of Child and Adolescent 

Psychiatry

American Academy of Neurology

American Association of Physician Assistants

American Association on Health and Disability

American College of Obstetricians and 

Gynecologists

American Medical Association

American Neurological Association

American Nurses Association

American Physical Therapy Association

American Psychological Association

The Council on Quality and Leadership

Developmental Disabilities Nurses Association

Family Voices

Federation of Families

Intertribal Voices for Children’s Mental Health

National Alliance for Caregiving

National Association for the Dually Diagnosed

National Association of Developmental 

Disabilities Councils

National Association of Qualified Mental 

Retardation Professionals

National Association of Protection and 

Advocacy Systems

National Association of State Directors of 

Developmental Disabilities Services

Acknowledgments
National Dental Association

National Down Syndrome Congress

National Hispanic Medical Association

National Indian Child Welfare Association

National League for Nursing

National Medical Association

Oglala Sioux Tribe

People First

Self Advocates Becoming Empowered

Special Care Dentistry

TASH – The Association for Persons with 

Severe Handicaps

Voice of the Retarded

GOVERNMENT AGENCIES

The Surgeon General’s Conference on Health

Disparities and Mental Retardation was sponsored by

the following Government agencies:

Department of Health and Human Services

Office of the Surgeon General, Office of Public 

Health and Science

National Institute of Child Health and Human 

Development, National Institutes of Health

National Center on Birth Defects and 

Developmental Disabilities, Centers for Disease

Control and Prevention

Agency for Healthcare Research and Quality

Center for Mental Health Services, Substance 

Abuse and Mental Health Services

Administration

Indian Health Service

National Institute on Aging, National 

Institutes of Health

National Institute on Alcohol Abuse and

Alcoholism, National Institutes of Health

National Institute of Dental and Craniofacial

Research, National Institutes of Health

National Institute of Mental Health, National 

Institutes of Health 

Office of the Assistant Secretary for Planning 

and Evaluation

Social Security Administration

Office of Disability

in collaboration with the following agencies:

Department of Health and Human Services

Administration for Children and Families

Administration on Developmental Disabilities

Centers for Medicare & Medicaid Services

Maternal and Child Health Bureau, Health 

Resources and Services Administration

National Center for Health Statistics, Centers 

for Disease Control and Prevention

National Center on Minority Health and Health 

Disparities, National Institutes of Health

National Institute of Environmental Health 

Sciences, National Institutes of Health

National Institute of Neurological Disorders and 

Stroke, National Institutes of Health

National Institute of Nursing Research, 

National Institutes of Health

Office of the Director, National Institutes 

of Health

Office of Public Health and Science

President’s Committee on Mental Retardation

Department of Defense

Office of the Assistant Secretary of Defense,

Health Affairs, TRICARE

Department of Education

Office of Special Education and Rehabilitative

Services

The Surgeon General would especially like to

recognize Duane Alexander, M.D., Director of the

National Institute of Child Health and Human

Development, and the staff of the Institute for their

assistance in conceptualizing the effort, organizing the

Listening Session, conducting the Conference, and

preparing this report.

x
xi

“Individuals and their families should be equal

partners [with providers] in making health care

decisions....”

Conference participant*

Like other Americans, persons with mental

retardation (MR) grow up, grow old, and need good

health and health care services in their communities.

But people with MR, their families, and their

advocates report exceptional challenges in staying

healthy and getting appropriate health services when

they are sick. They feel excluded from public

campaigns to promote wellness. They describe

shortages of health care professionals who are willing

to accept them as patients and who know how to

meet their specialized needs. They struggle with

unwieldy payment structures that were designed

decades ago when people with MR often died in

childhood or lived out their lives in residential

institutions (U.S. Senate Appropriations Committee,

Hearing Report No. 107-92).

Today, the life expectancy of people with

conditions associated with MR has lengthened into

adulthood and middle age. People with MR are

remaining in their communities. In ever-increasing

numbers, people with MR either do not enter

institutions, or they leave them to live with their

families or in other community settings, and they are

determined to understand and take charge of their

health. But in most cases, neither the education and

training of health professionals nor other elements of

the Nation’s health system have been updated to

reflect their progress. Especially as adolescents and

adults, people with MR and their families face evergrowing challenges in finding and financing primary

and specialty health care that responds both to the

characteristics of MR and to the distinctive health

care needs of each stage of life.

Terms in This Report

Environments refers to the characteristics of

residential, work, educational, and community

sites that may have positive or negative impacts on

the health of people with MR. “Environment”

includes family members and other caregivers,

employers, teachers, and others at community

sites, whose attitudes and treatment may support

or impede people with MR in maintaining their

health. 

Family and other caregivers. “Family” refers

to parents (including foster parents), siblings, and

other family members who are primary caregivers

for individuals with MR. “Caregiver” refers to

personal care assistants, job coaches, housing

counselors, volunteer “buddies,” and others who

assist individuals with MR in diverse ways. 

Persons with MR or self-advocates refers to

individuals with MR. The Surgeon General is

aware that there is a controversy around the use of

the term “mental retardation” and that selfadvocacy groups and professional associations are

currently discussing alternatives. Until a

consensus is reached, with the goal of drawing

attention to the great health disparities faced by

people with what has been traditionally known as

“mental retardation,” that term has been used in

the Surgeon General’s effort on health disparities

and mental retardation. 

Providers or health care providers refers to

physicians, dentists, nurses, physician assistants,

dental hygienists, physical/occupational/speechlanguage therapists, behavioral health specialists,

and all other health care providers.

Introduction

*Statements quoted in the Blueprint were made by Conference participants.
As health needs and service systems change over

a lifetime, transitions are reported to be exceptionally

difficult. Medicaid recipients speak of “falling off a

cliff” when they graduate from the program’s

expansive pediatric coverage to more constricted

adult benefits. Many may spend years on a waiting

list to gain access to the more flexible service

packages that are available only through Medicaid

waivers to limited numbers of adults with MR.

Planning health care services, allocating sufficient

resources, and monitoring the health and quality of

care for people with MR are major policy challenges

because needed data are not sufficient for the task.

For example, for a majority of people with MR, their

condition is relatively mild, and once they leave

school, they disappear into larger communities,

untracked in major national data sets.

Disparities and Diversity—Compared with other

populations, adults, adolescents, and children with

MR experience poorer health and more difficulty in

finding, getting to, and paying for appropriate health

care. These challenges are even more daunting for

people with MR from minority communities with

many cultures and languages and whose culture and

primary language may not be reflected in available

health services. As with many other disabling

conditions, the multiple disorders associated with MR

are found disproportionately among low-income

communities that experience social and economic

disparities when they seek health care. Mental

retardation compounds these disparities because many

health care providers and institutional sources of care

avoid patients with this condition. Without direct

clinical experience, health care providers may feel

incapable of providing adequate care. They may not

value people with MR and their potential

contributions to their own health and to their

communities.

Identifying the Problems—This report presents

a national Blueprint to improve the health of persons

with MR. The Blueprint identifies problems and

solutions proposed by the community of people

with MR and those who care about their health.

It consists of multiple action steps that were

developed by work groups at the Surgeon General’s

National Conference on Health Disparities and

Mental Retardation, December 5–6, 2001, in

Washington, DC. The action steps are organized

under six broad goals that emerged from

Conference discussions and analysis of work group

recommendations. (Appendix A is a summary of

data presentations at the Conference. Appendix B

is a list of Conference participants.) 

Setting the Agenda and Realizing the Goals—

The purpose of this Blueprint is to set forth an agenda

from the community for national, State, and local

action, in both public and private sectors, to improve

the health of individuals with MR and to include

them fully in health systems that meet their needs.

Realizing the goals of this Blueprint calls for

partnerships at all levels of public and private

endeavor, from government agencies, legislatures,

corporations, foundations, research and health care

organizations, universities, and accreditation boards

for health professions schools and training, to selfadvocates, their families, local businesses and schools,

voluntary, civic and faith-based organizations,

individual clinical practices, and community-based

health care services for other vulnerable populations.

(Appendix C illustrates the diversity of potential

partners, as suggested by participants in the December

Conference.)

Dual Diagnosis Research Agenda—A separate

national Workshop, held days before the Surgeon

General’s Conference, developed a detailed agenda for

research on emotional and behavioral disorders and

mental illness in people with MR and developmental

disabilities. These coexisting conditions (“dual

diagnosis”) are among the most common and least

understood aspects of health and MR because people

with MR are commonly excluded from research on

mental illness (as well as other types of disorders) on

the basis of IQ rather than specific safety or other

xii

Goals to Improve the Health of People with

Mental Retardation

• Health Promotion and Community Environments

• Knowledge and Understanding

• Quality of Health Care

• Training of Health Care Providers

• Health Care Financing

• Sources of Health Care
xiii

considerations in a research protocol. This type of

disparity also is seen in the organization of health care

services. For example, mental health programs and

providers may exclude individuals on the basis of

low IQ. 

The Workshop, supported by the National

Institutes of Health and the Joseph P. Kennedy

Foundation, developed research recommendations on

epidemiology, diagnosis and assessment, and

interventions in emotional and behavioral disorders of

people with MR. The agenda also addressed ethical

considerations, research design, and research training

needs. (National Institutes of Health, Workshop on

Emotional and Behavioral Health in Persons with Mental

Retardation/Developmental Disabilities: Research

Challenges and Opportunities, November 29–December

1, 2001, http://draft.ninds.nih.gov/news_and_events

/Emotional_Behavioral_Health_2001.htm). 

Federal Initiatives on Disabilities—This report is

published at a time when other Federal initiatives also

are seeking to enable individuals with disabilities to

live in their communities and receive appropriate

services, including health care. These initiatives

address some of the same problems that action steps

in this report address and, in certain cases, propose

the same or similar responses. For example, in a

preliminary report to the President on his New

Freedom Initiative, Federal agencies addressed

structural changes in Medicaid, family support

services to avert caregiver “burnout,” and better

training for personal care attendants and other direct

service providers (U.S. Department of Health and

Human Services, Delivering on the Promise: Preliminary

Report of Federal Agencies’ Actions to Remove Barriers

and Promote Community Integration—New Freedom

Initiative, December 21, 2001).

Shortly after the Conference, the Health

Resources and Services Administration (HRSA), in

partnership with the March of Dimes, the American

Academy of Pediatrics, and Family Voices, held a

national conference to promote a ten-year plan for

appropriate community-based services for children

and youth with special health care needs (HRSA, All

Aboard the 2010 Express: A 10-Year Action Plan to

Achieve Community-Based Service Systems for Children

and Youth with Special Health Care Needs and Their

Families, December 2001).

In conjunction with the Surgeon General’s

Conference on Health Disparities and Mental

Retardation, the National Institute of Child Health

and Human Development supported a national study

describing diverse programs and creative strategies for

providing community-based health care and

supportive services for people with MR. (Appendix D

is a summary of programs included in this study,

which was provided to Conference participants.)

Most, if not all, of the content of this Blueprint is

generally applicable for any population with

disabilities. In fact, individuals with MR also may

experience physically disabling conditions and

disabling mental illness. The special role of this

Blueprint is to set an agenda reflecting the distinctive

implications of MR for health and disabilities policy

and practice.

1

This Blueprint resulted from a multistep process

designed to identify and address the health-related

concerns and recommendations of the community of

individuals, families, and providers who are concerned

with health and MR. The first step occurred at a

March 5, 2001, Senate Appropriations Subcommittee

hearing, called by Senator Ted Stevens (R-AK), to

receive a literature review of the health and health

status of adults, adolescents, and children with MR.

Authors of this study and other witnesses reported

that people with MR had poorer health and far less

access even to basic screening and corrective

treatment for vision, hearing, and oral health

problems than others and that diagnosis and

treatment of mental illnesses and other serious

disorders in this population were often delayed,

inadequate, or not provided at all.

At the hearing, the Surgeon General announced

his intention to focus the attention of the Nation on

the health needs of adults, adolescents, and children

with MR. Subsequently, the community of people

concerned with health and MR were invited to help

plan a national conference on health disparities and

MR by communicating their experiences, concerns,

and ideas to a dedicated website and at a national

Listening Session held on October 10, 2001. The

estimated 8,500 comments and suggestions sent to the

website and expressed at the Listening Session formed

the basis for planning the national Conference.

(Appendices E and F are a summary of the Listening

Session and a list of speakers at the Listening Session,

respectively.) 

The National Conference—The purpose of the

national Conference, held December 5–6, 2001, in

Washington, DC, was to identify important issues in

health and MR and to develop action steps to address

these issues. In inviting Conference participants,

every effort was made to reflect the broad diversity of

people with MR and others concerned with their

health. Officials of Federal agencies attended the

Conference as observers and as “resources,” providing

information requested by participants.

Eight Conference work groups identified priority

issues from those proposed during the planning

process and from their own experiences. Work group

topics ranged from provider attitudes and health care

financing, to appropriateness of services across the

lifespan and health promotion. Before the work

groups began their deliberations, plenary session

presentations provided background information on

what was currently known about each group topic,

and described examples of diverse programs providing

health care and related services to adults, adolescents,

and children with MR.

Drafting the Blueprint—To draft the Blueprint,

it was necessary to consolidate nearly 50 issue areas

and 200 action steps recommended by the Conference

work groups. All records of the work of the groups

were reviewed, including plenary session presentations

of highlights of the work group decisions and written

notes and audiotapes of group deliberations. An

informal discussion among work group moderators as

well as review of these records enabled drafters of the

Blueprint to array the action steps under six broad

goals that reflect priorities shared among the work

groups. Action steps shown under the goals have

been distilled from multiple group deliberations and

reports.

“Potential strategies,” also derived from group

deliberations, have been added to provide examples of

activities, topics for research, and the like. These

action steps and strategies should not be considered

the only ways to achieve the six goals. The resulting

Blueprint presents a consolidation of the problems

identified and solutions proposed by participants from

the website, the Listening Session, and the

Conference. It is intended for multiple audiences,

from the community of people who live with MR on a

daily basis, to the health care providers, researchers,

agencies, and others that can contribute to a more

inclusive health care system. Each partner and

combination of partners will bring their own priorities

and ideas to the task of improving the health of

people with MR. 

A National Blueprint to Improve the Health of 

Persons with Mental Retardation
2

Core Values for All Aspects of the Blueprint—

Throughout the Conference, certain core values

permeated the deliberations of the work groups and

the general Conference discussions at plenary

sessions. As expressed by several Conference

participants, these values include the following: 

“We ought to be about keeping people healthy....”

“For things to change, we must change the stigma [of

MR] to understanding and respect.”

“[Every action must fully include]...people with

MR,...family involvement, and...people telling us what

they need, as opposed to our telling them what they

want.”

“Providers have to look beyond the disability and see

the person—talk to us!”

“...If we do all [of the action steps], and we don’t do

it in a person’s first language, and we don’t do it showing

respect...for their culture, it means nothing....”

“[There must be] coordinated, community-based

services that [are] integrated, available, and accessible.

Let’s not make it all so difficult.”
GOALS AND ACTION STEPS

GOAL 1: Integrate Health Promotion into

Community Environments of People with Mental

Retardation 

“Health promotion programs should accommodate

people with MR. Examples include smoking cessation,

weight control, fitness, safe sex, drugs, and alcohol.”

As with other populations, health promotion and

disease prevention are multifactorial for individuals

with MR. They need to be empowered with adequate

and understandable information and reinforcement to

avoid health risks and maintain healthy personal

habits. Their health care providers and the

environments where they live, work, learn, and

socialize should offer opportunities to inform, support,

and reinforce healthy lifestyles. Routine preventive

services, from periodic oral prophylaxis and

restoration, to cancer screening, immunizations, and

early intervention with emerging mental illness are

critical to prevention of more serious conditions and

secondary disability. Because of the potential for

modeling behaviors, health-promoting knowledge and

habits of personal care attendants and family

members, co-workers, and others can help individuals

with MR to protect and maintain their health.

Action Steps:

• Wellness: Educate and support individuals with

MR, their families, and other caregivers in self-care

and wellness. 

Potential strategies: Adapt self-care and wellness

programs designed for general populations and

cultural, ethnic, and socioeconomic minorities to the

needs of individuals with MR. When proven

effective, replicate existing programs for individuals

with MR, especially peer-designed programs for

wellness, self-care, and mental health. Evaluate the

use of assistive technology and different media in

educating and reinforcing healthy behaviors in

individuals with MR, their families, and their

caregivers. Develop and disseminate models for

health care provider counseling and reinforcement of

wellness and healthy behaviors in individuals with

MR, their families, and caregivers.

Potential topics: Nutrition and weight control;

exercise; oral health; family planning; safe sex;

strategies for protection from rape, domestic violence,

and sexual abuse; maintaining treatment regimens;

avoiding medication errors; recognizing and seeking

care for emerging disorders; and age-related changes

in, and risks to, health status. 

• Caregiver support: Develop and implement

strategies for reducing care burdens for families of

individuals with MR, and reducing high rates of

turnover in nonfamily caregivers.

Potential strategies: Identify stressors and sources

of resilience in individuals with MR, their families,

and their caregivers, and support strategies to enhance

resilience. Support respite care, case management,

advance (lifetime) planning for transitions to different

stages of life and age-associated health needs. Provide

assistance in caring for individuals with dual

diagnosis, including family and caregiver training in

behavior management and advance planning for

behavioral crises. Provide technical assistance to

families in information technologies, including how

to use the Internet. Explore compensation, including

basic health coverage, for family caregivers whose care

responsibilities prevent them from working outside

the home. 

Additional strategies: Provide training in health

care, including supporting healthy habits, for personal

care attendants and other caregivers. Create career

tracks leading to certification of caregivers with regard

to health-related competencies. Support basic health

care coverage and increased compensation,

commensurate with demonstrated health

competencies, for caregivers.

• Workplace: Protect the health of individuals

with MR from occupational hazards.

Potential strategies: Develop and disseminate

modules to educate and train individuals with MR,

their employment counselors and job coaches, their

families and caregivers, their employers and potential

employers, and occupational health and safety

inspectors, in recognizing and eliminating hazardous

working conditions that may require special

accommodations for employees with MR. Potential

accommodations include ensuring that employees

3
with MR work in safe and healthful environments

and understand how to avoid repetitive motion

disorders and other occupational hazards. 

• Assessment: Assess the effects of health

promotion and wellness activities for individuals

with MR on their morbidity, secondary disability,

mortality, life satisfaction, independent living,

achievement of life goals, and cultural and ethnic

identity.

4
GOAL 2: Increase Knowledge and

Understanding of Health and Mental Retardation,

Ensuring that Knowledge Is Made Practical and

Easy to Use 

“We’re invisible in the data. We can’t make people

believe we need more services if we don’t have data to

back us up.” 

Credible scientific knowledge is considered

essential to all goals in this Blueprint, from

establishing appropriate standards of health care, to

training health care providers, to revising financing

structures, and improving the capacity of individuals

and their families to protect and maintain their

health. For example, the lack of population-based

data on prevalence of MR and the health status and

service needs of this population impedes planning and

allocating resources for their care. Failure to monitor

the quality of their care hampers detection of

prejudicial or inadequate treatment. Recent advances

in neurosciences, genetics, psychopharmacology, and

other fields of research could improve the diagnosis

and treatment of individuals with MR and emotional,

behavioral, or psychiatric disorders (dual diagnosis).

At the same time, individuals, family members,

and health care providers need easily accessible,

scientifically accurate, culturally relevant, and

understandable information for prevention and health

promotion, as well as for diagnostic and treatment

decisions. All aspects of health-related research, from

biomedical and epidemiologic to health services and

ethics, offer multiple opportunities to increase and

improve the utility of scientific knowledge on health

and MR.

Action Steps:

• Participation: Enable individuals with MR,

their families, and their health care providers to

partner with professional investigators in identifying

health research priorities, and in designing and

implementing research relating to health and MR.

Potential strategies: Include individuals with MR,

family members, and their primary and specialty

health care providers in research advisory committees

and planning groups to provide input into the

development of research proposals and grant

submissions. Offer training to lay advisors in

identifying research questions and other technical

matters. Encourage federally funded health

researchers to develop partnerships in which persons

with MR, their family members, and other caregivers,

including health care providers, are consulted and

participate in the planning and conduct of research

relevant to MR.

• Research agenda: Develop a national research

agenda that identifies gaps in existing scientific

knowledge related to health and MR, including

methodological challenges, priorities, feasibility, and

timetables for achieving priority research. 

Potential strategies: Develop specific agendas for

basic, clinical, and translational research; for studies

of the efficacy of wellness and treatment services and

service models for people with MR; for legal and

ethical issues, health care financing, and its

relationship to outcomes; and for other matters

identified by the community. Implement the

December 2001 research agenda of the Workshop on

Emotional and Behavioral Health in Persons with

Mental Retardation/Developmental Disabilities

(National Institutes of Health, Workshop on

Emotional and Behavioral Health in Persons with

Mental Retardation/Developmental Disabilities:

Research Challenges and Opportunities, November

29–December 1, 2001). Enhance research

collaborations across multiple research agendas and

disciplines.

• Data collection: Collect data on the health

status of persons with MR in relation to the

utilization, organization, and financing of their

health services.

Potential strategies: Identify and evaluate existing

data on health and MR. Add MR to populationbased data collection on health status, health risks,

health services utilization, and health care costs. Test

methods of identifying patients with MR on Medicaid

and other third-party payer claims for purposes of

collecting data, while also protecting patient

confidentiality. Conduct market research to

determine attitudes toward MR of health care

providers, and how to change negative attitudes.

Survey individual practices, managed care

5
6

organizations, and localities and States to better

understand the experiences of individuals with MR

when they seek health care.

• Research subject protection: Review current

ethical and legal rules for protection of human

research subjects as they relate to individuals with

MR. Revise these rules as necessary to facilitate

the participation of persons with MR in clinical

trials and other types of research, with full

protection of their autonomy, health, and safety.

Ensure that individuals, their families, their health

care providers, and their advocates participate as

partners in reviews and revisions of these rules.

Ensure their participation in Institutional Review

Board (IRB) reviews of research proposals relating

to MR. 

Potential strategies: Provide training in legal and

ethical rules for protection of human research subjects

to lay participants in review and the revision of these

rules. Provide training in IRB standards and

procedures.

• Understanding and use: Provide assistance for

individuals with MR, their families, and their health

care providers in finding, evaluating, and using

health research findings to help in the prevention,

diagnosis, and management of medical (including

psychiatric), psychological, and oral health

conditions, and to inform treatment decisions by

individuals and their families. 

Potential strategies: Establish, and keep current, a

national clearinghouse, a website, and a list-serve to

guide users in identifying and evaluating research, and

to promote their exchange of information and

opinions. Design science-based continuing education

curricula for licensed health care providers. Translate

peer-reviewed journal information, reports of

evidence-based best practices, and other findings for

lay consumption, and disseminate information to

provider groups, and State agencies that serve persons

with MR, and provider trade journals.

• Research capacity: Increase the number of

investigators trained in health and MR research.

Potential strategies: Fund undergraduate training

and postdoctoral research fellowships at medical,

dental, and other health professions schools and

training programs targeted specifically at issues

relevant to MR. Solicit proposals for

multidisciplinary research. Solicit proposals from

centers and programs that provide health care to

individuals with MR, especially those living in their

communities. Solicit joint proposals from these

providers and investigators at medical, dental, and

other health professions schools and programs. 

• Visibility: Enhance the visibility of health and

MR research.

Potential strategies: Increase and ensure

appropriate use of funds to support research on health

and MR, including expansion of studies on dual

diagnosis and other disorders for which individuals

with MR are at elevated risk. Create prizes and other

awards for excellence in health and MR research.

Endow chairs for health and MR research at health

professions schools. Establish special interest sections

in health research organizations. Support special

plenary lectures on health and MR at national

medical, dental, and other health professions

meetings. Publish health and MR research findings in

peer-reviewed medical (including psychiatric), dental,

psychological, nursing, physician assistant, dental

hygienist, and other health-related journals, as well as

in health services research and policy journals.
GOAL 3: Improve the Quality of Health Care for

People with Mental Retardation

“Encourage agencies and health care professionals to

treat people with MR according to age and health needs,

not just for their disability.”

The quality of health care for individuals with

MR depends on the knowledge and skills of individual

providers, particularly their capacity to engage these

patients in their own health care, and on systemic

factors. Such factors include monitoring the

utilization of health care services and outcomes for

people with MR, and correcting deficiencies in the

quality of their care, such as medication error,

underutilization of services, and failure to interact

effectively with patients and family members.

At both the individual provider and health

systems levels, credible standards of health care, based

on scientific evidence, are essential to improving the

quality of health care for people with MR. Until an

adequate science base is available, however, consensus

standards that reflect the knowledge and experience

of recognized experts (including the community of

people concerned with health and MR), and are

formulated in standardized procedures, are an

important interim step. The potential for MRspecific standards to contribute to stigmatization must

be balanced against the need for health care services

that fully meet the needs of this population.

Action Steps:

• Priorities: Identify priority areas of health care

quality improvement for persons with MR. 

Potential strategies: Consult with individuals with

MR, their families, and their primary and specialty

health care providers and researchers to identify

priority areas for ensuring and improving the quality

of their health care. Identify existing best practices

that may be used systemwide to improve the quality of

care, and those areas in which better practices may be

needed. Use these consultations, together with

evaluations of existing and needed scientific

knowledge, to establish priorities for improving the

quality of health care for people with MR.

• Standards of care: Identify, adapt, and develop

standards of care for use in monitoring and

improving the quality of care for individuals with

MR. 

Potential strategies: Work with associations of

health professionals that develop consensus and

science-based standards of care for populations with

disabling conditions, for people with MR, and for

general populations. Identify and adapt standards

developed with the support of the National Institutes

of Health, the Centers for Disease Control and

Prevention, the Centers for Medicare & Medicaid

Services, and other Federal agencies; consult with the

National Committee for Quality Assurance and with

contractors that develop health care standards for

quality assurance in managed care. Identify existing

strategies for adapting and developing additional

standards of care for use with culturally diverse

populations.

Additional strategies: Develop science-based

standards on topics for which sufficient scientific

knowledge exists. Develop interim, consensus

standards on topics for which scientific knowledge

must be developed. Replace consensus standards, to

the extent feasible, with science-based standards.

Review and update standards to reflect new

knowledge, as it becomes available. 

Potential priority topics for standards:

Responsiveness to distinctive cultural values of

diverse communities; self-care and maintenance of

health-promoting activities; diagnosis and treatment

of emotional and behavioral disorders and mental

illness; provider screening; and prevention and early

intervention in medical, psychiatric, behavioral, and

oral health conditions for which individuals with MR

are at heightened risk, such as premature aging, and

for coexisting conditions, such as diabetes and mental

illness. 

Other potential priority topics: Recognition and

treatment of emergency conditions, including sexual,

physical, and psychological abuse and their sequelae;

prevention, diagnosis, and treatment of substance

abuse; development of plans of care, including selfcare, to achieve health goals of individuals and their

families; development and revision of lifetime health

plans for individuals with MR; age-appropriateness of

7
8

health services (including pediatric, adolescent, adult,

geriatric, palliative, and end-of-life care); and agerelated transitions, including pediatric to adult health

care. 

• Use: Ensure that the practice, organization, and

financing of health care services for individuals with

MR promote improvement in their quality of care. 

Potential strategies: Determine whether and how

existing standards for care of people with MR are

used. Integrate standards of care for MR into the

following: clinical practice guidelines; curricula for

health professions training; guidance for individuals,

their families, their other caregivers, and their primary

and specialty care providers; organized health services

(including managed care organizations, hospitals,

community health centers, and others); and quality

assessment and performance improvements in

organized health services and individual provider

practices.

Additional strategies: Explore methods of linking

health care financing to appropriate standards of care

for people with MR. Methods could include health

care quality requirements in managed care contracts

and oversight of such contracts by private and public

purchasers, and projects to test such linkage in

behavioral health, maternal and child health, family

planning, oral health, and comprehensive health care

services programs.

• Recognizing excellence: Establish local,

regional, and national awards that recognize

excellence in providing health care to individuals

with MR. 

Potential strategies: Work with individuals, their

families and caregivers, academic institutions,

medical, dental, and other health professions

societies, and national associations and other

interested parties and groups to recognize excellence

in providing health care for individuals with MR.

Recognition could include financial prizes and

nonmonetary awards. 
9

GOAL 4: Train Health Care Providers in the Care

of Adults and Children with Mental Retardation

“The number one issue is lack of training to support

healthy lifestyles [for individuals with MR] across the

lifespan.”

The challenges and rewards of treating individuals

with MR are rarely addressed in the training of

physicians and other health care professionals.

However, anecdotal evidence and limited data

indicate that opportunities for clinical experiences

with these patients, early in medical and other health

professions training, increase the capacity of providers

to value and accept these patients into their practices.

Action Steps:

• Professional education: Integrate didactic and

clinical training in health care of individuals with

MR into the basic and specialized education and

training of all health care providers. 

Potential strategies: Evaluate existing health

professions training curricula that address health and

MR and disseminate those found to be efficacious.

Partner with families and individuals with MR to

develop and implement training modules. Use

providers experienced in the care of individuals with

MR and family members to mentor health professions

students, residents, and fellows in the care of this

population. Develop and implement criteria for

accreditation and certification of health professions

schools and training programs, based on inclusion of

mental retardation in their curricula. 

Potential curriculum topics: Dual diagnosis; health

risks and expression, in people with MR, of agerelated conditions found in other populations; direct

interactions with these patients, such as historytaking, including cultural practices, diagnosis,

treatment, and counseling and supporting individuals

in wellness and in adherence to treatment regimens;

appropriate use of medications and alternative

behavior management techniques; working with

individuals and their families to develop and update

goal-oriented health care plans, including lifetime

plans and plans for transition points; and use of

augmentative communications devices and other

specialized equipment.

• Interdisciplinary education and training:

Support development and dissemination of effective

training modules in interdisciplinary practice.

Design modules to include social workers, family

members, individuals with MR, and others, when

relevant, such as teachers, personal care attendants,

job counselors, and frontline office staff.

• Provider competence: Develop methods of

evaluating and improving health provider

competence in the health care of individuals with

MR. These methods should be based on appropriate

standards of care, including care that reflects

understanding and respect for diverse cultures, and

should be used to evaluate the competence of

students and practicing providers, and to provide

feedback and reevaluation of their performance. 

• Continuing education: Develop, evaluate, and

disseminate continuing education curricula for

health care providers at all levels of practice in the

care of individuals with MR. Such curricula should

be based on appropriate standards of care and

include training opportunities that reflect

understanding and respect for diverse cultures.
GOAL 5: Ensure that Health Care Financing

Produces Good Health Outcomes for Adults and

Children with Mental Retardation

“Let’s develop reimbursement that is respectful of the

diverse lifestyles of people with MR and their families and

that is tied to outcomes they value, [but] be careful...that

we don’t develop policies that will cover more people, with

more flexibility, without ensuring the basic level of care

that we know our people need.” 

High rates of poverty among adults and children

with MR mean that a large proportion of them rely

on publicly financed health care insurance, which is

not always well-adapted to serving their needs.

People with MR find that many providers avoid the

program, citing low reimbursement rates,

administrative burden, and fear of being inundated

with underfinanced patients. Providers who are

committed to treating individuals with MR report

that restrictive Medicaid rules on which services are

covered, in which settings, can limit use of innovative

service models. 

Families with private-sector coverage encounter

gaps in coverage, unaffordable premium payments,

and little flexibility in designing packages of services

to meet their children’s needs. Cost-avoidance and

cost-shifting by both public and private payers force

families to try to mediate between special education

programs and third-party payers and between longterm and acute care systems. Research and

understanding of financing structures, to better

accommodate service needs of individuals with MR,

are hindered by lack of critical utilization and

reimbursement data.

Action Steps:

• Outcomes and financing: Determine

relationships among diverse financing mechanisms,

service packages, and health outcomes for

individuals with MR. Use findings to ensure

accountability of flexible arrangements for financing

services.

Potential strategies: Test effects on health

outcomes, for people with MR, of diverse models for

providing health care services, service packages, and

financing mechanisms. Identify factors in varying

combinations that affect outcomes. Determine effects

of adjunct services, including respite care,

transportation, child care, and case management, in

combination with medical, dental, and other health

services, on outcomes. Support longitudinal studies of

portability of health services packages as educational,

employment, and residential circumstances change.

Develop methods of ensuring accountability for

sufficiency and quality of health care services,

including accountability for outcomes, in models for

flexible health service financing. 

• Definitions: Use appropriate definitions of

“effective,” “cost-effective,” and “health outcomes”

in research, organization, and financing of health

care for individuals with MR. 

Potential strategies: Explore expanding definitions

of terms used in measuring the effects of health care

financing and service models to include wellness,

functionality, patient and family understanding of

health maintenance and treatment regimens, capacity

for consumer choice among services, and satisfaction

and individualization of service packages. Calculate

health care costs across all systems with responsibility

for health care of individuals with MR, such as special

education, and third-party payments for behavioral

therapy. Support development of methods to

determine cost-effectiveness of services over the

lifespan, taking into consideration cost offsets among

long-term, preventive, and acute care, and other

factors. 

• Services: Identify a package of health care

services for individuals with MR that will produce

good outcomes in terms of health maintenance,

management of illness, functionality, and life goals

across the individual’s lifespan. 

Potential strategies: Review currently available

public and private packages of health care and

supportive services for cost, quality, and consumer

satisfaction. Test models of comprehensive lifetime

coverage to better meet the needs of persons

throughout their lives and avoid age-related

disruptions of financing and services. Assess the use

of criteria, including acquiring and maintaining

functionality for making decisions on coverage. 

10
11

• Leveraging: Evaluate models for leveraging

health dollars to maximize purchasing power by and

for individuals with MR. Ensure that individuals’

coverage and access to primary and specialty health

care and support services are not eroded by

revisions in purchasing practices and policies. 

Potential strategies: Evaluate models for

coordinated funding of pediatric, adolescent, adult,

and geriatric care, including acute and long-term care,

primary care, specialty services, and school-based

services, through use of pooled funds, complementary

financing from multiple funding streams, and other

innovations. Evaluate models for tying funding

mechanisms to good outcomes, as defined in the first

action step. Evaluate models that enable individuals

with MR and their families to choose needed health

services on an individualized basis and to monitor

outcomes and service utilization. Encourage thirdparty payers to reimburse for health care services in

carefully monitored clinical trials and other studies at

academic centers of excellence.

Additional potential strategies: Provide technical

assistance to States, tribes, and health care programs

and providers in using Medicaid authorities to finance

innovative models for providing health care, and

identify and eliminate financial disincentives for such

models. For example, payer rules limiting

reimbursements to one visit per patient per day may

mean that families must make multiple appointments

with multiple providers to complete multidisciplinary

assessments. Evaluate and replicate the use of

incentives, such as enhanced Medicaid

reimbursement rates, to encourage States to develop

and/or replicate effective models that meet the needs

of individuals typically not covered. 

• Cost offsets: Explore strategies to offset

financial costs to providers and health services

programs that are associated with meeting

specialized needs of patients with MR. 

Potential strategies: Assess the relationship

between different rates of Medicaid and Medicare

provider reimbursement and any impact on access to

health care for individuals with MR. Identify sources

and amounts of costs to providers that are associated

with meeting specialized needs of individuals with

MR. Assess the effect of offsetting such costs on

provider acceptance of individuals with MR. Assess

combined and separate effects of cost-offsets and

nonfinancial provider supports, described elsewhere in

the Blueprint, on provider acceptance. 
GOAL 6: Increase Sources of Health Care

Services for Adults, Adolescents, and Children

with Mental Retardation, Ensuring that Health

Care is Easily Accessible for Them

“Services can be wonderful and high quality, but if

there aren’t enough, or if you can’t get to them, or if you

don’t know about them, [they’re of] no help to you....”

Like other Americans, especially those who are

poor and disabled, people with MR are confronted

with a fragmented health care system in which

primary and specialty sources of care are often poorly

distributed, inadequate in number, and ill-equipped to

respond to their needs. 

Action Steps:

• Diversity: Increase the number of physicians,

dentists, clinical psychologists, and allied health care

professionals who have appropriate training and

experience in treating adults, adolescents, and

children with MR, including those from

socioeconomically and linguistically diverse

communities. 

Potential strategies: Recruit students, residents and

fellows, and practicing providers from diverse

communities, and train them in providing health care

to individuals with MR. Establish health professions

curricula and continuing education modules in

cultural competence in relating to patients with MR.

Work with spiritual and other leaders who know the

cultural and ethnic beliefs, values, and primary

languages of individuals and families in diverse

communities to plan and provide health care services,

develop health professions training curricula, and

otherwise ensure responsiveness to diverse ethnic,

cultural, and linguistic needs in all aspects of health

care for individuals with MR and their families.

• Easier access: Make access to health care

services less complicated for individuals with MR

and their families and caregivers, whether in urban,

rural, or remote communities. 

Potential strategies: Ensure that independent

service coordinators who work on behalf of clients to

locate and ensure access to and coordination of

services are available for individuals with MR who

wish such assistance. Co-locate primary and specialty

medical, psychiatric/psychological, and dental

services. Support multidisciplinary teams, including

mobile teams to bring services to individuals’ homes,

schools, and other nonclinical sites. Ensure that

individuals with MR receive assistance in care

coordination and transportation to health care

services. Ensure that individuals and families in

various community settings receive usable information

about available health care in their communities.

Additional strategies: Review eligibility to reduce

the need for multiple applications and multiple

determinations of eligibility for services. Promote the

use of presumptive eligibility, once initial eligibility is

established, for services through Medicare or

Supplemental Security Insurance (SSI)/Medicaid. 

• Community-based care: Integrate health care

services for individuals with MR into diverse

community programs. 

Potential strategies: Incorporate preventive health

education and interventions into early intervention

and special education plans. Support development of

protocols and dissemination, for care of individuals

with MR and coexisting conditions, at community

and migrant health centers, community mental health

services, addiction disorder services, family planning

programs, rape/sexual abuse and family violence

services, public health clinics, and other publicly

funded, community-based health services and

programs. Prohibit such programs and services from

excluding individuals solely on the basis of IQ. 

• Health professionals: Expand the types of 

health professionals used in providing health care to

individuals with MR, including geriatric, pediatric,

and other nurse practitioners and nurses, physician

assistants, dental hygienists, and behavioral therapists.

Potential strategies: Identify and remove

disincentives and barriers in Medicaid, Medicare, and

private third-party payer reimbursements to expand

the use of a wide variety of health professionals to

care for persons with MR. 

• Supporting providers: Support supplementary

services to help physicians, dentists, psychologists,

and other providers and organized health services in

providing care to individuals with MR. 

12
13

Potential strategies: Work with providers to

identify nonfinancial “costs” in including individuals

with MR in their practices and programs. Support

needed services that could offset such “costs.” Such

services could include technical assistance with

Medicaid and other types of claiming, case managers,

preliminary health screening and referrals, completing

informed consent procedures, and assembling

complete and current medical and dental histories

(including family histories) of individuals with MR.

Explore the use of “health passports” (copies of up-todate health histories, including family history) that

“travel” to health services with individuals with MR. 

• Special equipment: Ensure that adaptive

equipment and assistive technologies are available in

urban, rural, and remote communities for use at

clinical sites where individuals with MR receive

health care. 

Potential strategies: Provide support to health care

providers to finance the costs of purchasing and

installing special equipment and modifications to

practice sites, such as installation of automatic doors,

specialized examining tables and chairs, and

wheelchair-accessible bathrooms. Evaluate and

support the use of overhead allowances, direct

subsidies, cost- and time-sharing among providers, and

other mechanisms for offsetting costs of acquiring

(and, as necessary, training in the use of) specialized

equipment. 

• Lifetime health: Ensure continuity of health

care services throughout the life of an individual

with MR. 

Potential strategies: Develop and implement State

plans for providing age-appropriate, comprehensive,

and continuous health services for individuals

throughout their lives. Develop and disseminate

models for individual lifetime health care plans, with

periodic review and updates.

A – 1

The plenary session on the first day of the

Surgeon General’s Conference on Health Disparities

and Mental Retardation provided important

background information for the work groups held later

that day. Starting with the opening remarks, the

presentations set the tone and provided the

foundation for the eight separate work group

discussions.

For each work group, a moderator introduced the

key issues to be addressed, and another expert

presented the current state of knowledge. To

complement the facts, an individual representing a

service program that creatively addressed the issues

discussed the program, challenges, and achievements.

Brief summaries of the opening remarks and

presentations follow. 

OPENING REMARKS

Duane Alexander, M.D., Director, National

Institute of Child Health and Human Development

(NICHD)

Dr. Alexander noted that because the NICHD

was established by President John Kennedy to lead

the Nation’s research effort to improve the health of

individuals with mental retardation (MR), he

welcomed the Surgeon General’s request to convene

the conference. He expressed appreciation to all who

would help develop recommendations and to the

many Government agencies that supported the effort.

Dr. Alexander introduced Dr. Satcher as the moving

force behind the Nation’s efforts to address the many

health disparities faced by different population groups

across the country.

David Satcher, M.D., Ph.D., Surgeon General of

the United States

Dr. Satcher described the conference and its

outcome as an important example of efforts to move

forward in the best interests of the American people

following the tragedies of September 11. After

recognizing the NICHD and other agencies involved,

he pointed out that Surgeon Generals’ reports have

enjoyed great credibility with the American public

because they are based not on opinion, politics, or

religion, but on the best public health science. 

This conference complements several top

priorities of the Surgeon General’s Office, including

health disparities and meeting the health needs of our

most vulnerable, the role of the community health

system in the struggle for access to care, and

identifying and addressing common problems and

experiences within our global health community.

The genesis of this conference was the March

2000 field hearing of the Senate Appropriations

Subcommittee on access to care for individuals with

MR, at which families and self-advocates testified

convincingly about the problems they face. The

Conference and the Blueprint for action reflect the

Surgeon General’s efforts to not only listen but

respond with effective programs. The Conference

report and its implementation are key to achieving

this goal. Noting the caveat with the use of the term

“mental retardation,” he asked all participants to

judge each other not by the words used to describe

the condition but rather by the actions taken to help

improve the lives of those with the condition.

Loretta Claiborne, Athlete and Self-Advocate

Ms. Claiborne thanked the Surgeon General for

listening to individuals with MR, and expressed her

hope that her experiences seeking health care as a

child would not happen to others. She credited the

Special Olympics with recognizing the urgent health

needs of many of their athletes, and pointed out that

this conference, with its high rate of involvement by

people who have never been listened to before, was

different and important.

Appendix A: Surgeon General’s Conference on Health

Disparities and Mental Retardation 

Summary of the Plenary Session of December 5, 2001: 

Background Presentations
PRESENTATIONS

Bonnie Kerker, Ph.D., Overview Presentation on

the Prevalence of Mental Retardation

Dr. Kerker noted that accurate and consistent

prevalence data on MR are essential for developing

health policies and health care services, and for

allocating public funds to address the needs of

children and adults with MR. 

Current data show that approximately 0.3 to 3.1

percent of the general population, and about 1.1

percent of all children, have MR. Of these

individuals, most are classified as having mild MR.

Other developed countries report a lower and

narrower range of MR than the U.S. Some of the

discrepancy in prevalence estimates is due to

differences in the way MR is defined and in the types

of data used. For instance, MR is commonly defined

in three basic ways—on the basis of intellectual

functioning alone, intellectual functioning with

adaptive behaviors, or intellectual functioning with

an identifiable etiology of MR. Likewise, prevalence

data may be population-based, including counts of

people with MR in an overall population, or the data

may be drawn from clinical or administrative sources,

meaning that it is based on individuals who access

services. Most U.S. prevalence data come from the

latter sources; however, such data usually provide less

accurate counts because many adults and children

with MR may be unable to access care. 

Another difficulty lies in the timing and ease of

identifying individuals with MR. For example,

because of naturally occurring but subtle differences in

early developmental patterns, children may not be

diagnosed early in life. Those children diagnosed

later through the school system, especially those with

mild MR, are often lost in followup as adults.

In summary, despite wide ranges in prevalence

data, many people in the U.S. and abroad must

confront the challenge of MR. The challenge for our

Nation begins with more accurately estimating the

prevalence of these conditions. This requires using a

standardized definition of MR, increasing the use of

population-based data that emphasize participation of

individuals with MR, and encouraging and helping

health care providers to identify both adults and

children with MR.

Work Group One: Attitudes of Health Care

Professionals

David Coulter, M.D., Moderator

Referring to comments made at the Surgeon

General’s Listening Session on Health Disparities and

Mental Retardation, Dr. Coulter noted that many

family members and self-advocates continue to

encounter poor attitudes among health care providers. 

Our society assumes health care professionals

should provide accessible, comprehensive, familycentered care that is also coordinated, continuous,

culturally competent, and respectful of a patient’s

choices. Meeting the needs of individuals with MR,

however, also requires developing new ways to

incorporate the concept of self-determination and

patients’ own goals for a healthy life into their care.

This requires better training for providers to improve

their attitudes and their knowledge of the needs of

those with MR.

Listening Session participants also noted that

health care providers may reluctantly accept Medicaid

recipients or individuals with MR as patients.

Provider attitudes also may influence the quality of

care delivered to people with MR and reduce direct

communication with these patients. For patients who

come from different ethnic and cultural groups,

provider attitudes may lead to misunderstandings

concerning the values and perceptions of health or

concerning MR itself.

K. Charlie Lakin, Ph.D., Scientific Presentation

Dr. Lakin discussed the wide range of intellectual

ability and health needs of children and adults with

intellectual disabilities. Poverty is a key issue for

those with intellectual disabilities: adults with these

disabilities are three times more likely to live in

poverty than other adults in the U.S. Similarly,

children with intellectual disabilities are twice as

likely to live in poverty as other children. In

addition, people with intellectual disabilities are less

likely to be insured than the general population. 

Despite these facts, data from the National

Health Interview Survey show that a majority of

people with intellectual disabilities, or their proxies,

report their doctor’s thoroughness, respect and

A – 2
attention to privacy, interest in them and their

condition, and availability in an emergency to be

either “good” or “excellent.” 

However, other literature shows that if health

care providers lack the experience or specific

knowledge, they are reluctant to treat people with

intellectual disabilities. Likewise, providers may

hesitate to treat patients with intellectual disabilities

because of poor experiences in past encounters or

because providers are inadequately compensated for

the additional time that may be required to care for

these patients. 

Provider training is key to influencing these

attitudes. Research shows providers (or other

professionals working directly with patients in a

clinical setting) who took a structured training course

concerning the health care of individuals with

intellectual disabilities had an increased desire or

willingness to treat these patients. The attitudes of

providers who were trained with only reading or

course work did not change.

In summary, the literature reveals that provider

attitudes influence access to services. A provider’s

willingness to treat people with intellectual

disabilities is influenced by public, private, and

advocacy groups; access to technical support and

professional allies; and evidence that it is financially

viable to treat people with intellectual disabilities. In

addition, transportation, communication, and other

problems commonly experienced by persons with

disabilities only increase the challenges faced by

providers. 

Sharon L. Ramey, Ph.D., Creative Program

Presentation

Dr. Ramey shared findings about a unique

research program at the Alabama Mother and Family

Specialty Center in Birmingham, Alabama.

Originally developed to determine whether providing

good prenatal care could decrease the rates of lowbirthweight and premature babies, the program faced

the challenge of caring for many women with

intellectual disabilities. In a previous study, about

one-third of the mothers with low-birthweight or

premature babies had low IQs themselves. 

The researchers carefully documented the amount

and quality of care each of the 600 women enrolled in

the program received during her pregnancy. Mothers

received highly tailored prenatal care provided by the

same nurse over the course of the program.

Instructional videotapes, educational materials,

flexible clinic hours, transportation to the clinic,

child care during office visits, and participation in a

talk show to discuss common questions during

pregnancy complemented the care the mothers

received. 

An evaluation revealed that the tailored program

of prenatal care failed to reduce significantly the

incidence of low-birthweight or premature babies;

however, the program improved the health of the

mothers and their knowledge of their bodies,

promoting healthy lifestyles and healthy behaviors.

In the end, the program and its many components

helped to prepare these women, many with low IQs,

for the challenging task of motherhood.

Work Group Two: Quality of Health Services

Roxanne Dryden-Edwards, M.D., Moderator

Dr. Dryden-Edwards noted that individuals with

intellectual disabilities need specific approaches to

health care treatment. Most importantly, to give

quality care, providers will need to spend more time

with these patients and take advantage of

opportunities to learn about a broad range of their

needs. Current and future health care professionals

will need to be better trained. It will be important

that they learn how to provide comprehensive care

respectfully, prevent the inappropriate use of

medications, and ensure that children receive

appropriate followup care as they make their

transition into adolescence and adulthood.

K. Charlie Lakin, Ph.D., Scientific Presentation

In reviewing the literature, Dr. Lakin noted that

much research concerning the quality of care for

individuals with intellectual disabilities targets those

living in institutions. In these settings, a wide range

of health needs are generally met in a satisfactory

manner. However, as the needs of this population

become more complex, the need for additional

professional training increases. 

A – 3
Interesting data from the National Health

Interview Survey also show that children with

intellectual disabilities were just as likely to see a

doctor within the past year as children without these

disabilities. In fact, adults with intellectual

disabilities were more likely to see a doctor within the

past year than those without such disabilities. One

fact also was clear—people with intellectual

disabilities have a greater need for specialized health

care.

Despite these promising findings, anecdotal

evidence suggests that many people with intellectual

disabilities fail to have their basic health needs met.

Unfortunately, no comprehensive study documents

this fact or the technical quality of health services

provided. Such studies, with outcome-oriented

approaches, must be conducted. These studies, in

turn, will provide the foundation for developing

quality-of-care guidelines for people with intellectual

disabilities. These guidelines should address access to

health professionals, health promotion and nutrition,

routine monitoring of health care, dental and oral

health, and commonly associated health problems.

The role and training of support staff also must be

addressed. 

Nancy N. Cain, M.D., Creative Program

Presentation

Dr. Cain discussed Rochester Community-Based

Crisis Intervention Services, a program to increase

access to psychiatric care for people with intellectual

disabilities. The Rochester program has two main

components, including a crisis intervention team and

a specialized psychiatry clinic. During a crisis, the

intervention team works with families and group

homes on a short-term basis to help find appropriate

care for the adult or child with intellectual

disabilities. Program staff are on call for emergency

room consultations 24 hours a day, and may be asked

to evaluate an individual in the emergency room to

determine whether the problem is psychiatric in

nature. If so, the team member facilitates a

psychiatric admission. 

Although the crisis intervention team evaluates

both children and adults, currently, only adults are

seen in the specialized psychiatry clinic. Adults with

intellectual disabilities may be followed on a longterm basis in the clinic. Both medical students and

psychiatry residents may train with either the crisis

intervention team or in the specialized psychiatry

clinic. 

A program review revealed that the crisis

intervention team and specialized psychiatry clinic

have prevented unnecessary hospitalizations,

enhanced appropriate community placements,

maintained behavioral health, enhanced the expertise

of providers working in the community, and increased

collaboration between the developmental disability

and mental health systems.

Work Group Three: Finding and Getting to Health

Care Services

Sheryl White-Scott, M.D., Moderator

Dr. White-Scott discussed what was learned about

finding and getting to health care services at the

Surgeon General’s Listening Session on Health

Disparities and Mental Retardation. Participants

highlighted a lack of information concerning the

types and location of services, and a definite shortage

of appropriately trained health providers.

Transportation and access problems exist in both

urban and rural settings. Often people face cultural

and language barriers, and patient education materials

are not geared to individuals with cognitive

impairments. Complicating matters, few formal

health care standards exist for treating these

individuals. Multidisciplinary experts, working across

systems, must develop these standards.

Deborah Spitalnik, Ph.D., Scientific Presentation

Dr. Spitalnik discussed key factors influencing an

individual’s ability to obtain needed health services.

These factors include “access, affordability,

availability, and acceptability.” Research in this area

is complicated by difficulties in collecting data, lack of

comparability across studies, lack of good measures of

access, and imprecise definitions of MR.

Unfortunately, poverty is an access issue for many

people with MR, who often depend on public support

for health care. A recent study of children on

Supplemental Security Income (SSI) showed that

they frequently received care from a general

practitioner without pediatric experience. In

A – 4
addition, children with MR often failed to receive

subspecialty care. Additional disparities are related to

race, geographic location, and SSI status. 

Another problem is that individuals’ health needs

are frequently interpreted only in reference to their

MR and not in regards to broader issues. Beyond

negative perceptions and issues involving stigma, this

“diagnostic overshadowing” continues to limit access

to appropriate and quality care. Ironically, adults with

mild MR may have trouble accessing care because

they often have a normal appearance but may have

difficulty with compliance, authority, behavioral

challenges, and abstract thinking. Together, these

characteristics pose significant barriers to care. 

Transportation and financing also pose access

problems for many individuals with MR. In

particular, Medicaid fee-for-service programs may

provide financial disincentives for treating individuals

with a disability, based on the inherent health care

needs of these patients. Medicaid’s managed care

programs, however, may offer more protections than

these and commercial managed care programs. Many

States are moving towards such Medicaid systems.

Ronald Lindsay, M.D., Creative Program

Presentation

Dr. Lindsay presented the Ohio Rural

Developmental and Behavioral Clinic Initiative. The

program was developed in 1995 in response to a needs

assessment completed by the Ohio Department of

Health. The study identified gaps in coverage, lack of

service coordination, lack of information, and

unmanageable systems as constraints for individuals

with MR to access comprehensive care. Urban

counties were also found to have more resources to

care for children than rural counties. In response, the

State created a new rural initiative. Although the

program started with two rural health clinics in two

separate counties, the program currently has 37 clinics

in eight counties and receives evaluations of children

living in 18 other counties.

A key goal is to decrease health disparities for

children with suspected MR and developmental

disabilities. To accomplish this, two evaluation teams

were created: a developmental team for children up

to age six and a behavioral team for school-age

children. The interdisciplinary teams conduct

comprehensive evaluations; both teams have local

public health nurses who serve as liaisons between the

teams and local communities. The nurses receive

referrals from parents and providers, obtain

appropriate records, conduct home visits after a child

is evaluated, and help to implement the teams’

recommendations. Families play an important role in

both the child’s evaluation and treatment. 

A program evaluation assessed the first two years

of activities, during which 120 children were seen.

Children’s clinical charts were reviewed, and parents

were interviewed. The evaluators assessed how

diagnoses were formed, team recommendations, and

the outcome of these recommendations, including

whether services were obtained or pursued. The study

found that few system barriers exist for families once

children are evaluated. In addition, a family’s refusal

to pursue services is the chief reason for not obtaining

care. Of families that did pursue services, 98 percent

successfully obtained the needed care. 

While the evaluation showed that the program

improved access to diagnostic evaluations, identified

previously undiagnosed conditions, aided access to

followup care, and met family needs, it also

highlighted the need for more outcome and

population-based data and ways to improve the

acceptance of social recommendations by families. 

Finally, the program’s primary challenge remains

sustaining a program that is community-based and

integrated, providing a seamless system of care. This

challenge entails collaborating with local agencies

that must share a vision, work together, and integrate

their services. The primary challenge is to integrate

service delivery, training, technical assistance,

consultation, and research. 

Work Group Four: Paying for Health Care

Services

Daniel Bier, M.P.A., M.S.W., Moderator

Mr. Bier discussed how health care services work

in a marketplace, and how reimbursement can

promote the best value. The work group would

address the relevant themes developed at the Surgeon

General’s Listening Session. These include (1) what

services should be covered by insurance, (2) the

A – 5
preauthorization process and the definition of medical

necessity, (3) co-insurance, and (4) the cost of

premiums.

Deborah Spitalnik, Ph.D., Scientific Presentation

Dr. Spitalnik discussed how methodological issues

can influence research concerning the financing of

care for individuals with MR. These issues include

the lack of precise diagnoses and the failure to record

diagnoses, as well as the instability of diagnoses within

the billing systems and clinical claims data.

For example, Medicaid files were not designed to

identify populations with special health needs;

however, most people with MR pay for health care

through public insurance, whereas only 7.1 percent of

adults with MR have insurance through their

employer. The inadequate design of Medicaid files

means that Medicaid datasets often lack important

utilization and reimbursement data concerning the

services provided to individuals with MR. These

deficiencies hinder research and our understanding of

the financing and use of services by this population. 

Although children with MR may be insured

through their parents’ coverage, commercial insurance

often has coverage gaps, high premiums, and no

mandate to provide benefit packages to meet their

needs. Nonetheless, given the scarcity of good

coverage, parents of children with MR frequently will

not move or change jobs for fear of losing their health

insurance coverage.

Medicare covers 480,000 people with MR, but

these beneficiaries differ from the average elderly

beneficiary because they are poorer and less likely to

be connected to health care providers.

Approximately 70 percent of Medicare beneficiaries

with MR are also enrolled in Medicaid, which has

become the largest financial funding source for health

care for people with disabilities. Medicaid covers

1.5 million noninstitutionalized adults with MR and

246,000 institutionalized ones. It provides acute and

some long-term care benefits. Although individuals

with MR make up only 4.9 percent of the

beneficiaries, they use 15.7 percent of Medicaid’s

dollars. To reduce health costs, States have a keen

interest in switching beneficiaries to Medicaid

managed care programs.

Complicating matters, Medicaid has two parts,

including mandatory and optional services.

Unfortunately, many services deemed optional are

critical for people with disabilities and include items

such as dental coverage, prescription drug coverage,

and long-term care services. States also vary as to

whether they mandate that Medicaid beneficiaries

enroll in managed care programs. Many Medicaid

managed care programs lack claims data and

diagnostic information concerning people with MR. 

Theodore Kastner, M.D., M.S., Creative Program

Presentation

Dr. Kastner presented some general issues related

to the provision of primary care and mental health

services in Medicaid managed care, and discussed the

creation of Developmental Disabilities Health

Alliance, Inc., a company providing health care

services to persons with developmental disabilities

under contract with several health maintenance

organizations (HMOs) in New Jersey’s Medicaid

managed care system. 

Premised on providing high-quality,

comprehensive health care to individuals with MR,

the program seeks to overcome the limitations of scale

by creating a statewide integrated system of care.

Several key business assumptions also are built into

the program, starting with the notion that the use of

capitation helps to better predict future cash flow. In

addition, a successful for-profit program will increase

choices and competition, improve accountability, and

align the business goals with the clinical needs of the

patients.

To market the package of services to private

HMOs, program officials used familiar business

terminology and discussed ways that the new system

could better manage disease by providing

comprehensive care. Several HMOs were enlisted to

broaden the range of payers and to help establish

market-based reimbursement for their unique

managed care systems. Although obtaining capital

was a hurdle, capitation payments proved to be very

helpful. 

Although relatively young, the company

represents an effective way to provide an array of

managed care services to individuals with MR, relying

on Medicaid reimbursements. Success also is related

A – 6
to developing the talents of staff and being flexible in

the face of market changes. Compromise is also

essential as is the need to be opportunistic, to add

value to the services provided, to leverage funds

effectively, to use capitation effectively, and to

develop a good business plan.

Work Group Five: Age-Appropriate Health

Services

Timothy Kowalski, D.O., Moderator

Dr. Kowalski highlighted the transition points all

individuals encounter as they advance through the

developmental stages of life. The work group was

asked to focus on the transition points and how they

may interact with the special needs of individuals

with MR. 

Marsha M. Seltzer, Ph.D., Scientific Presentation

Dr. Seltzer noted that the health of approximately

one-third of individuals with MR is reported to be fair

or poor. About 60 percent of people with MR and

developmental disabilities live with their families,

who often serve as their brokers for health services;

however, as children and adults with MR live longer,

the role of their parents and siblings in brokering

health care services changes. 

To plan for care, it is important to merge the life

course perspective with the special needs of

individuals with specific diagnoses related to MR. For

instance, individuals with Down syndrome often

experience the early onset of aging. Similarly,

individuals with MR versus those with developmental

disabilities must be treated differently because they

have such heterogeneous needs. At the same time,

each stage of life, such as adolescence, early

adulthood, and advanced age, offers unique challenges

that must be considered in relation to factors such as

gender, poverty, barriers to health services, and lack of

trained providers. 

Paul Glassman, D.D.S., M.A., M.B.A., Creative

Program Presentation

Dr. Glassman discussed the Center for Oral

Health for People with Special Needs at the

University of the Pacific (UOP) School of Dentistry.

Historically, as individuals with MR moved from

institutions to community settings, their untreated

dental problems worsened in response to the lack of

community resources. This situation had significant

implications for the well-being of this population;

research shows that oral health strongly correlates

with systemic disease as well as nutrition.

Established to create the “ideal” community-based

system for dental care, the Center is a coalition of

dental professionals, faculty from the UOP School of

Dentistry, regional centers, hospitals, agencies, and

individuals, linked by a dental services coordinator.

The coordinator, who is usually a dental hygienist,

serves as a liaison between the individual and people

in the community, often working with general dentists

to help them become more comfortable treating

individuals with MR. In addition, the Center has a

triage and referral system and training programs for all

personnel levels. Prevention programs and treatment

resources also have been developed. Among others,

these include educational materials for dental

hygienists, an online resource directory, and a handson training program for dentists.

The increased awareness of the importance of oral

health and the new coalitions that have been formed

highlight the Center’s success. For example, a

statewide task force on oral health for people with

special needs was formed, in addition to a new effort,

the California Endowment for Oral Health Care

Program. Going beyond local and State impact, a

national forum, Special Care Dentistry, has been

established to bring together dental professionals for

training, advocacy, and coalition-building to work on

common problems. 

Work Group Six: Continuity of Health Services

Throughout Life

George Jesien, Ph.D., Moderator

Dr. Jesien noted that as individuals move from

one health care system to another throughout life,

continuity of care is often disrupted. Each system

tends to operate under different rules and various

eligibility requirements that hinder efforts to obtain

needed care. Starting with children, school and the

health care systems fail to communicate well with

each other, and many services are dropped for various

reasons as the child becomes an adult. The goal is to

A – 7
provide systems of care that are easier to navigate,

with agencies and key stakeholders coordinating

services more efficiently.

Marsha M. Seltzer, Ph.D., Scientific Presentation

Dr. Seltzer suggested that participants consider an

interesting paradox—that as communities develop

more “age-specialized health care services for

individuals with MR,” the specialized care may

“become a barrier to continuity of services across the

life course.” 

The barriers start with health care specialists. If

individuals with MR must seek the care of numerous

specialists to meet a broad range of health needs, this

situation automatically increases discontinuities in

care. The specialty needs may change as a patient

gets older (e.g., geriatrics) and may require specialty

care based on gender (e.g., women’s health services).

In this situation, family practice physicians, or having

a particular point of service, may play a special role in

the care of people with MR.

Fragmentation of the service system also poses

barriers to receiving continuous care. Most often, this

fragmentation occurs as individuals move from early

interventions into public education and then into

adult services. Changes in policies and services also

pose unexpected barriers. For example, changing the

definition of MR and the terminology used can easily

affect eligibility requirements. In addition, significant

State-to-State variability exists in the availability of

services.

Finally, another barrier often arises depending on

whether individuals with MR choose to live in family

situations. Nearly 60 percent of individuals with MR

live with their parents throughout their life course,

but disruptions in care can occur when parents die.

By contrast, individuals living in nonfamily licensed

settings have greater access to health care. This

situation occurs because many settings are affiliated

with larger efforts to provide at least minimal access

to care.

Joel Levy, D.S.W., Creative Program Presentation

Dr. Levy discussed the Young Adult Institute

(YAI) Premier Health Care Program, which provides

comprehensive health care to individuals with MR

and developmental disabilities. Specially trained

medical professionals provide both acute and chronic

medical, dental, psychiatric, and in-home nursing care

services to children and adults. With more than 50

percent of clients being minorities, cultural

competency is essential to the program’s success.

Other Program goals include providing

continuous care and offering a wide range of services.

The Program’s philosophy is that treatments should be

integrated, provided in the least restrictive manner

possible, and based on the individual and family’s

unique needs. To achieve this goal, the Program

coordinates its services with those offered by local

agencies. This coordination allows individuals with

MR to receive care in their communities. At the

same time, the Program has contracts with academic

hospitals around the State to provide any services that

are unavailable locally. 

Work Group Seven: Promoting Health:

Providers

Sanford Fenton, D.D.S, M.D.S., Moderator

Dr. Fenton introduced several issues raised at the

Surgeon General’s Listening Session. These issues

included providers not screening individuals with MR

for dietary and nutritional status, tobacco or alcohol

use, cancer, or domestic violence. Participants in the

Listening Session also mentioned that some health

care providers have little or no specialized training or

equipment needed to care for individuals with MR.

Specialized providers also may miss opportunities to

ensure that needed immunizations are obtained and to

educate clients and their families concerning a range

of primary care and prevention topics. These

problems are exacerbated by the high turnover rate of

personal care attendants and by frequent gaps in the

medical record. 

A – 8
On the basis of these trends, recommendations

could be devised to help improve preventive

screening, provider training, provider coordination,

the rate of turnover in personal care attendants, and

the use of health promotion techniques.

David Braddock, Ph.D., Scientific Presentation

Dr. Braddock discussed the history of

institutionalization of people with MR. Today, States

vary in the range of services they offer to individuals,

particularly to those in community-based settings.

Any effort to develop new health promotion programs

must be tailored to this reality. Although the number

of small residential homes serving six or fewer clients

has increased, health promotion in these settings

poses problems. A British study comparing health

promotion for individuals with MR in community

versus residential settings found inadequacies

particularly in community settings. This situation

must be corrected, given the importance of health

promotion and the number of individuals with MR

living in a community setting. Activities could

include developing recreation and fitness programs in

the community, providing counseling for individuals

in the community, working with mental health

centers to address the behavioral and mental health

needs, collaborating with special education programs

to teach children healthy habits, training health

professionals about health promotion, training and

supporting staff members in residential settings,

collaborating with provider and parent organizations

to make health promotion a national priority, and

working with new technology to promote health.

Jill Morrow, M.D., Creative Program Presentation

Dr. Morrow discussed the Pennsylvania Health

Care Quality Units (HCQU) Program and the

specific health care issues affecting people with MR in

the State. Most notably, health care professionals and

others working with this population lack indepth

knowledge about specific health care needs. Health

promotion is also an issue. 

The HCQU Program was created to respond to

these problems and to help people with MR become

better consumers of health care, to expand their

choice of health care providers, and to help deliver a

higher quality of care to people with MR. The

Program targets individuals with MR and their

families, providers of MR services, community

medical providers, and county staff (including

“support coordinators” who served as case managers).

The emphasis is on providing support but not direct

care services.

The Office of the Medical Director in the State’s

Office of Mental Retardation coordinates the

Program’s activities. The activities are implemented

by a consortium of counties and are staffed by

different clinicians and data personnel. To reach its

goals, staff members identify gaps in health care

services and health care knowledge and then develop

professional training and technical assistance

programs to address these needs. Staff members also

identify systemic problems and work closely with

other offices and agencies to address these issues.

The Program has been effective at the individual

and community levels. For example, recently

Program staff worked with a young diabetic man who

was interested in learning more about his diabetes and

how to give himself insulin injections. To meet the

man’s needs, HCQU staff contacted a local nurse

educator and shared specific educational techniques

for working with individuals with MR. The local

nurse then was able to teach the young man about his

diabetes and show him how he could take better care

of his own diabetic needs.

Work Group Eight: Health Promotion:

Individuals and Caregivers

Jackie Golden, Moderator

Ms. Golden identified key issues raised at the

Surgeon General’s Listening Session. Self-advocates

reported that people often talk about them and not to

them. Similarly, society often tries to “do for them,”

instead of teaching them how to do for themselves.

In addition, neither caregivers nor individuals are

valued for the potential role they can play in health

promotion. Adding to this complexity is that direct

care staff in group homes are often impoverished and

lack heath care themselves. Therefore, enhancing

health promotion for individuals with MR requires

training and provider support for direct caregivers,

families, and children and adults with MR. 

A – 9
A – 10

David Braddock, Ph.D., Scientific Presentation

Dr. Braddock discussed some of the difficulties

associated with promoting health for individuals with

MR in community settings. Self-advocacy

organizations can play an important role in launching

new health promotion projects, working closely with

family members who significantly influence the

adoption of healthy lifestyles. To encourage such

activities, Developmental Disability Councils should

be encouraged to use their authority to give grants

within the State for health promotion projects.

Gloria Krahn, Ph.D., Creative Program

Presentation

Dr. Krahn discussed the Oregon Healthy Lifestyles

for Persons with Developmental Disabilities Program.

The Program was developed to address the fact that

persons with disabilities (1) often experience poorer

health status and narrower margins of health, (2) may

be more susceptible to illness, (3) have limited access

to treatments, and (4) may be excluded from health

promotion opportunities.

The Program is currently developing two new

intervention efforts. The first project is the Healthy

Lifestyles Workshop for adults with developmental

disabilities. The two-and-a-half-day workshop uses a

peer training model that emphasizes empowerment

training. This training includes understanding the

importance of assessing one’s own health and

establishing personal health goals. The workshop also

targets self-determination and motivation and

describes wellness as a lifelong journey that

encompasses balance across life activities. To ensure

continued success, each participant is paired with a

mentor who works with the individual for up to six

months following the workshop.

In the past, the workshops were presented in six

locations across Oregon, and have included 33

participants with cognitive limitations. Feedback on

the project shows that followup is very difficult, but

participants report increased awareness of healthy

lifestyle choices and of self-empowerment.

Another project, called “Health and Wellness for

Teens with Disabilities: Getting Sensitized,” targets

health care providers who are in training. This newly

developed effort is trying to increase awareness of the

special problems that teens with disabilities encounter

and to improve provider skills in meeting these needs

and in supporting the teens’ overall health and

wellness. The project consists of three two-hour

modules, and includes didactic teaching, video

presentations, and hands-on exercises. The modules,

which will soon be field-tested, cover general

wellness, relationships and sexuality, and mental

health and substance use. 
B – 1

Deidra Abbott

Centers for Medicare & Medicaid Services

7500 Security Boulevard, MS S2-14-26

Baltimore, MD 21244-1850

Phone: 410-786-0690

Fax: 410-786-9004

Email: dabbott@cms.hhs.gov

Diane L. Adams, M.D., M.P.H.

Director

Health Policy, Research and Professional Medical 

Affairs

National Medical Association

1012 Tenth Street, N.W.

Washington, DC 20001

Phone: 202-347-1895, 286

Fax: 202-962-0265

Email: dadams@nmanet.org

Duane Alexander, M.D.

Director

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A03

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-3435

Fax: 301-402-1104

Email: da43w@nih.gov

Rene Anderson

President

Federation of Families

P.O. Box 16943

Tampa, FL 33687-6943

Phone: 813-974-2199

Fax: 813-974-7376

Email: randerso@fmhi.usf.edu

B.J. Arseneau, D.O., M.P.H.

Chief Psychiatrist

Office of Disability Policy and Programs

Division of Medical and Vocational Policy

Social Security Administration

OPNS, MC 3-A-8 Operations

6401 Security Boulevard

Baltimore, MD 21235

Phone: 410-966-1970

Email: bernard.arseneau@ssa.gov

Sally Atwater

Executive Director

President’s Committee on Mental Retardation

U.S. Department of Health and Human Services

Aerospace Building, Room 701

370 L’Enfant Promenade, S.W.

Washington, DC 20447

Phone: 202-619-0634

Fax: 202-205-9519

Email: satwater@acf.dhhs.gov

Susan H. Badeau

Deputy Executive Director and Public Policy 

Consultant

Joseph P. Kennedy, Jr. Foundation

30 Pelham Road

Philadelphia, PA 19119

Phone: 202-824-0316

Fax: 202-824-0351

Email: sbadeau@aol.com

Eric J. Bailey, Ph.D., M.P.H.

Medical Anthropologist and Program Director

National Center on Minority Health and Health 

Disparities

Office of the Director

National Institutes of Health

6707 Democracy Boulevard, Room 800, MSC 5465

Bethesda, MD 20892-5465

Phone: 301-594-1788

Fax: 301-480-4049

Email: baileye@od.nih.gov

Donna Bernhardt Bainbridge, P.T., Ed.D., ATC

Director

Department of Practice

American Physical Therapy Association

1111 North Fairfax Street

Alexandria, VA 22314

Phone: 703-706-3170

Fax: 703-838-8910

Email: donnabainbridge@apta.org

S. Otesia Barr, M.D.

Medical Director

National Children’s Center

6200 Second Street, N.W.

Washington, DC 20011

Phone: 202-722-2312

Fax: 202-722-2383

Joan B. Beasley, Ph.D.

Consultant

184 Bonad Road

Chestnut Hill, MA 02467

Phone: 617-469-7391

Fax: 617-469-7391

Email: jbbeasley@rcn.com

Daniel Bier, M.P.A., M.S.W.

Associate Director

Waisman Center

University of Wisconsin at Madison

1500 Highland Avenue, Room S101A

Madison, WI 53705-2280

Phone: 608-263-5254

Fax: 608-263-0529

Email: bier@waisman.wisc.edu

Arnold Birenbaum, Ph.D.

Associate Director

Rose F. Kennedy University Center for 

Developmental Disabilities

Albert Einstein College of Medicine

Kennedy Building, Room 204

1410 Pelham Parkway South

Bronx, NY 10461

Phone: 718-430-8523

Fax: 718-904-1162

Email: birenbau@aecom.yu.edu

Aaron Bishop

Association of University Centers on Disabilities

8630 Fenton Street, Suite 410

Silver Spring, MD 20910

Phone: 301-588-8252

Fax: 301-588-2842

Email: abishop@aucd.org

Marty Blair

Staff Writer

Association of University Centers on Disabilities

8630 Fenton Street, Suite 410

Silver Spring, MD 20910

Phone: 301-588-8252

Fax: 301-588-2842

Email: mblair@aucd.org

Betty Bledsoe

Mentor and Advocate for Special Needs Children

The Rainbows

8084 Wallingwood Drive

Indianapolis, IN 46256

Phone: 317-842-9079

Fax: 317-841-9093

Email: the-bledsoes@prodigy.net

Robert Bock, M.A.

Press Officer

Public Information and Communication Branch

Office of Science Policy, Analysis and 

Communication

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-32

9000 Rockville Pike

Bethesda, MD 20892

Phone: 301-496-5133

Email: bockr@mail.nih.gov

David Braddock, Ph.D.

Associate Vice President for Research and Executive 

Director

Coleman Institute for Cognitive Disabilities

University of Colorado System

4001 Discovery Drive, Suite 210, MSC Sys 586

Boulder, CO 80309-0586

Phone: 303-492-0639

Email: braddock@cu.edu

Appendix B: Participants List

SURGEON GENERAL’S CONFERENCE ON HEALTH DISPARITIES AND MENTAL RETARDATION

December 5–6, 2001

Georgetown University Conference Center, Washington, DC
Kathleen Braden, M.D.

Director

LEND Program

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A18

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-1877

Fax: 301-496-0588

Email: kathleen.braden@umassmed.edu

Yvonne E. Bryan, Ph.D., R.N.

Program Director

Office of Extramural Programs

National Institute of Nursing Research

National Institutes of Health

45 Center Drive, MSC 6300

Bethesda, MD 20892-6300

Phone: 301-594-6908

Fax: 301-480-8260

Email: bryany@mail.nih.gov

Larry Burt, M.S.

Program Coordinator

Disability and Health Branch

National Center on Birth Defects and 

Developmental Disabilities

Centers for Disease Control and Prevention

Building 101, Room 2407

4770 Buford Highway, MS F-35

Atlanta, GA 30341

Phone: 770-488-7081

Fax: 770-488-7075

Email: lrb1@cdc.gov

Nancy N. Cain, M.D.

Director, Mental Retardation/Developmental 

Disorders Psychiatric Service

Strong Behavior Health Services

Department of Psychiatry

University of Rochester Medical Center

300 Crittenden Boulevard

Rochester, NY 14618

Phone: 585-275-3587

Fax: 585-273-1093

Email: nancy_cain@urmc.rochester.edu

Faye Calhoun, D.P.A., M.S.

Associate Director

Office of Collaborative Research

National Institute on Alcohol Abuse and 

Alcoholism

National Institutes of Health

Willco Building, Suite 302

6000 Executive Boulevard

Rockville, MD 20852

Phone: 301-443-1269

Fax: 301-480-2358

Email: fcalhoun@mail.nih.gov

Vincent A. Campbell, Ph.D.

Health Scientist

National Center on Birth Defects and 

Developmental Disabilities

Centers for Disease Control and Prevention

4770 Buford Highway, MS F-35, Building 101

Atlanta, GA 30341

Phone: 770-488-7684

Fax: 770-488-7075

Email: vbc6@cdc.gov

Paul Casamassimo, D.D.S., M.S.

Professor and Chair and Chief of Dentistry

Section of Pediatric Dentistry

Ohio State University College of Dentistry

Columbus Children’s Hospital

700 Children’s Drive

Columbus, OH 43205

Phone: 614-722-5651

Fax: 614-722-6791

Email: casamassimo.l@osu.edu

Jill Center, M.P.H.

Public Affairs Specialist

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-32

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-5133

Email: centerj@mail.nih.gov

Mary C. Cerreto, Ph.D.

Director of the Center on Self-Determination and 

Health

Department of Family Medicine

Boston University Medical School

Dowling 5 South Building

One Boston Medical Center Place

Boston, MA 02118

Phone: 508-653-9165

Fax: 617-414-3345

Email: mcerreto@aol.com

Mae M. Chin, R.D.H., M.Ed.

DECOD Clinics Manager

Dental Education in Care of Persons with 

Disabilities Program

Department of Oral Medicine

University of Washington School of Dentistry

Health Sciences Center, Box 356370

1959 Northeast Pacific Street

Seattle, WA 98195

Phone: 206-543-4619

Fax: 206-221-5276

Email: mgmchin@u.washington.edu

Loretta Claiborne

1240 Bockius Avenue

Abington, PA 19001

Phone: 215-885-3870

Fax: 215-885-9636

Email: ziggygee@aol.com

Janis Lambert Connallon

Family Voices-DC

Suite 1003

3003 Van Ness Street, N.W.

Washington, DC 20008

Phone: 202-537-6046

Email: j-rcon@starpower.net

Stephen Corbin, D.D.S., M.P.H.

Dean

Special Olympics University

Special Olympics, Inc.

1325 G Street, N.W., Suite 500

Washington, DC 20005

Phone: 202-824-0283

Fax: 202-824-0397

Email: scorbin@specialolympics.org

José F. Cordero, M.D., M.P.H.

Director

National Center on Birth Defects and 

Developmental Disabilities

Centers for Disease Control and Prevention

Chamblee - 101, Room 2116

4770 Buford Highway, MS F-34

Atlanta, GA 30341

Phone: 770-488-7150

Fax: 770-488-7156

Email: jfc1@cdc.gov

Elin Cortijo-Doval, M.Ed.

Senior Consultant

9600 Kings Croft Drive

Glen Allen, VA 23060

Phone: 804-273-1063

Fax: 804-273-0699

Email: elind11@aol.com

David L. Coulter, M.D.

Attending Neurologist

Department of Neurology

Children’s Hospital

Fegan II 

300 Longwood Avenue

Boston, MA 02115

Phone: 617-355-2711

Fax: 617-277-1924

Email: coulterdl@aol.com

M. Doreen Croser

Executive Director

American Association on Mental Retardation

444 North Capitol Street, N.W., Suite 846

Washington, DC 20001-1512

Phone: 202-387-1968

Fax: 202-387-2193

Email: dcroser@aamr.org

Felix de la Cruz, M.D., M.P.H.

Acting Branch Chief

Mental Retardation and Developmental Disabilities 

Branch

Center for Research for Mothers and Children

National Institute of Child Health and Human 

Development

National Institutes of Health

Neuroscience Center, Room 4B09

6100 Executive Boulevard, MSC 7510

Bethesda, MD 20892-7510

Phone: 301-496-1383

Fax: 301-496-3791

Email: delacruf@mail.nih.gov

Kim Daniels

Parent Consultant to the Vermont SelfDetermination Project

State of Vermont

103 Main Street

Waterbury, VT 05663

Phone: 802-485-8271

Fax: 802-485-4596

Email: kdaniels@together.net

Sharon Davis, Ph.D.

Director

Professional and Family Services

The Arc of the United States

1010 Wayne Avenue, Suite 650

Silver Spring, MD 20910

Phone: 301-565-5478

Fax: 301-565-3843

Email: davis@thearc.org

B – 2
Curtis Decker, J.D.

Executive Director

National Association of Protection and Advocacy 

Systems

900 Second Street, N.E., Suite 211

Washington, DC 20002

Phone: 202-408-9514

Fax: 202-408-9520

Email: curt@napas.org

Mark S. Diorio, Ph.D., M.P.H.

Facility Director

Northern Virginia Training Center

9901 Braddock Road

Fairfax, VA 22033

Phone: 703-323-4002

Fax: 703-323-4252

Email: mdiorio@nvtc.state.va.us

Ann Drum, D.D.S., M.P.H.

Director, Division of Research, Training and 

Education

Maternal and Child Health Bureau

Health Resources and Services Administration

Parklawn Building, Room 18A-55

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-0761

Fax: 301-443-4842

Email: adrum@hrsa.gov

Charles Drum, J.D., Ph.D.

Director

Oregon Institute on Disability and Development

Child Development and Rehabilitation Center

Oregon Health Sciences University

P.O. Box 574

Portland, OR 97207

Phone: 503-494-8047

Fax: 503-494-6868

Email: drumc@ohsu.edu

Roxanne Dryden-Edwards, M.D.

Medical Director

National Center for Children and Families

6301 Greentree Road

Bethesda, MD 20817

Phone: 301-365-4480

Fax: 301-365-2536

Email: redwards@nccf-cares.org

Susan Dyer

Research Coordinator

Shriver Center University Affiliated Program

University of Massachusetts Medical School

Eunice Kennedy Shriver Center, Room C116A

200 Trapelo Road

Waltham, MA 02452

Phone: 781-642-0261

Fax: 781-642-0162

Email: susan.dyer@umassmed.edu

Steven M. Eidelman

Executive Director

The Arc of the United States

1010 Wayne Avenue, Suite 650

Silver Spring, MD 20910

Phone: 301-565-5469

Fax: 301-565-3843

Email: eidelman@thearc.org

Barry Eigen

Executive Program Policy Officer

Office of Disability

Office of the Associate Commissioner

Social Security Administration

Altmeyer Building, Room 560

6401 Security Boulevard

Baltimore, MD 21235

Phone: 410-965-2528

Fax: 410-965-6503

Email: barry.eigen@ssa.gov

Ann L. Elderkin, P.A.

Senior Health Policy Consultant

Office of the Surgeon General

Office of the Secretary of Health and Human 

Services

U.S. Department of Health and Human Services

Parklawn Building, Room 18-66

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-0901

Fax: 301-443-1211

Email: aelderkin@osophs.dhhs.gov

Sanford J. Fenton, D.D.S., M.D.S.

Chair and ADA Representative

Department of Pediatric Dentistry and Community 

Oral Health

University of Tennessee College of Dentistry

Dunn Building, Room 5217

875 Union Avenue

Memphis, TN 38163

Phone: 901-448-6206

Fax: 901-448-6249

Email: sfenton@utmem.edu

Michelle Fiorella, D.O.

Psychiatrist

9004 Harrods Landing Drive

Prospect, KY 40059

Mark Freeman, M.Ed., PA-C

Director, AAPA Representative

Physician Assistant Studies Program

Chatham College

Woodland Road

Pittsburgh, PA 15232

Phone: 412-365-1405

Fax: 412-365-1623

Email: freeman@chatham.edu

Michael J. Friedlander, Ph.D.

Chairman

Department of Neurobiology

University of Alabama at Birmingham

Building CIRC, Room 516

1719 Sixth Avenue South, MSC 0021

Birmingham, AL 35294

Phone: 205-934-0100

Fax: 205-975-7394

Email: mjf@nrc.uab.edu

George Gaines

Chief, Program and Public Liaison Office

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A03

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-435-3447

Fax: 301-402-1104

Email: gainesg@mail.nih.gov

Isabel Garcia, D.D.S., M.P.H.

Special Assistant for Science Transfer

National Institute of Dental and Craniofacial 

Research

National Institutes of Health

Building 45, Room 4AS-19

45 Center Drive

Bethesda, MD 20892

Phone: 301-594-7551

Fax: 301-496-9988

Email: isabel.garcia@nih.gov

Bob Gettings

Executive Director

National Association of State Directors of 

Developmental Disabilities Services

113 Oronoco Street

Alexandria, VA 22314

Phone: 703-683-4202

Fax: 703-684-1395

Email: rgettings@nasddds.org

Paul Glassman, D.D.S., M.A., M.B.A.

Associate Dean for Information Technology

Director of Advanced Education in General 

Dentistry Residency

Center for Oral Health for People with Special 

Needs

University of the Pacific School of Dentistry

2155 Webster Street

San Francisco, CA 94115

Phone: 415-929-6490

Fax: 415-749-3399

Email: pglassman@uop.edu

Jackie Golden

Executive Director

Inclusion Research Institute

1436 Independence Avenue, S.E.

Washington, DC 20003-1536

Phone: 202-546-4464

Fax: 202-546-4465

Email: jlgolden@bellatlantic.net

Glenn Govin, D.D.S., M.P.H.

Director, DECOD and Lecturer

Department of Oral Medicine

University of Washington School of Dentistry

Health Sciences Center, Room B316, Box 356370

1959 Northeast Pacific Street

Seattle, WA 98195

Phone: 206-543-1546

Fax: 206-685-8412

Email: ggovin@u.washington.edu

Julie Hacker-Yannes

402 Longhorn Crescent

Rockville, MD 20850

Phone: 240-683-9453

Email: jyannes@olg.com

Stanley D. Handmaker, M.D., D.Phil.

Professor of Pediatrics

Department of Pediatrics

Health Sciences Center

University of New Mexico School of Medicine

Ambulatory Care Center

3 West, Room 3221

Albuquerque, NM 87131-5311

Phone: 505-272-0344

Fax: 505-272-6845

Email: shandmaker@salud.unm.edu

B – 3
Wendelyn C. Hardy

7420 Newstead Drive

Cumming, GA 30041

Phone: 770-667-0250

Email: tinkermau@aol.com

James C. Harris, M.D.

Director, Developmental Neuropsychiatry

Professor, Psychiatry/Pediatrics

Departments of Psychiatry and Pediatrics

Johns Hopkins University School of Medicine

Johns Hopkins Hospital, Room CMSC 341

600 North Wolfe Street

Baltimore, MD 21210

Phone: 410-955-6181

Fax: 410-889-5623

Email: jamesharris@erols.com

Carmen Held

Executive Director

Denver Aurora Chapter

Children’s Mental Health

12485 East 13th Avenue

Aurora, CO 80011

Phone: 303-507-9863

Fax: 720-859-9367

Email: carheld@msn.com

Tamar Heller, Ph.D.

Professor and Interim Head

Department of Disability and Human Development

College of Applied Health Sciences

University of Illinois at Chicago

IIDD, Room 436

1640 West Roosevelt Road

Chicago, IL 60608-6904

Phone: 312-413-1537

Fax: 312-413-1630

Email: theller@uic.edu

Camille Hemlock, M.D.

Associate Medical Director, Mental

Retardation/Developmental Disabilities

Office of the Medical Director

Texas Department of Mental Health and Mental 

Retardation

Central Office, Room 1-107E, MC 655

P.O. Box 12668

Austin, TX 78711-2668

Phone: 512-206-4840

Fax: 512-206-4589

Email: camille.hemlock@mhmr.state.tx.us

Monica D. Herring

Parent Advocate

11714 South Laurel Drive, Apt. 20

Laurel, MD 20708

Phone: 240-568-0777

Fax: 301-725-1761

Email: monicadh@msn.com

Dalice L. Hertzberg, M.S.N., FNP-C, CRRN

Instructor and Project Coordinator

Health Promotion Project

JFK Partners, University of Colorado Health 

Sciences Center

Building 401, Room 105

1784 Racine Drive

Campus MS F541, P.O. Box 6508

Aurora, CO 80045-0508

Phone: 303-724-0652

Fax: 303-724-0960

Email: dalice.hertzberg@uchsc.edu

Paula A. Hirt, M.S.

Director of Programs and Services

American Association on Mental Retardation

444 North Capitol Street, N.W., Suite 846

Washington, DC 20001

Phone: 202-387-1968

Fax: 202-387-2193

Email: pahirt@aamr.org

Deborah Hirtz, M.D.

Program Director

Clinical Trials

National Institute of Neurological Disorders and 

Stroke

National Institutes of Health

Neuroscience Center

6001 Executive Boulevard, Room 2212, MSC 9525

Bethesda, MD 20892-9525

Phone: 301-496-5821

Fax: 301-480-1080

Email: dh83f@nih.gov

Henry Hood, D.M.D.

Director, Dental Services Clinic

Hazelwood Center ICF/MR

Kentucky Department for Mental Health and 

Mental Retardation Services

1800 Bluegrass Avenue

Box 14506

Louisville, KY 40214-0506

Phone: 502-361-2301, 2366

Fax: 502-366-9779

Email: henry.hood@mail.state.ky.us

Gail Hunt

Executive Director

National Alliance for Caregiving

4720 Montgomery Lane, Suite 642

Bethesda, MD 20814

Phone: 301-718-8444

Fax: 301-652-7711

Email: gailhunt.nac@erols.com

Holly Janczak, M.A.

Director of the Community Living Program

Chairperson of the National Association of 

Qualified Mental Retardation Professionals

Trinity Servicers, Inc.

100 Gougar Road

Joliet, IL 60432

Phone: 815-485-4781

Fax: 815-485-9145

Email: trinityhj@aol.com

Matthew P. Janicki, Ph.D.

Director for Technical Assistance

Rehabilitation Research and Training Center on 

Aging with Developmental Disabilities

University of Illinois at Chicago

University at Albany

Richardson Hall 280

Albany, NY 12222

Phone: 518-442-3791

Fax: 518-877-3357

Email: janickimp@aol.com

Jane Jasek, R.D.H., M.P.A.

Manager

Access and Community Health

American Dental Association

211 East Chicago Avenue

Chicago, IL 60611

Phone: 312-440-2868

Fax: 312-440-4640

George Jesien, Ph.D.

Executive Director

Association of University Centers on Disabilities

8630 Fenton Street, Suite 410

Silver Spring, MD 20910

Phone: 301-588-8252

Fax: 301-588-2842

Email: gjesien@aucd.org

Robert S. Johns

Executive Director

National Dental Association

3517 16th Street, N.W.

Washington, DC 20010

Phone: 202-588-1697

Fax: 202-588-1244

Email: rsjohns@ndaonline.org

Tracy B. Johnson

Southwest Center

860 West 50 South

Tropic, UT 84776

Phone: 435-679-8824

Fax: 435-679-8905

Email: moetracy@color-country.net

Lisa Kaeser, J.D.

Senior Program Analyst

Office of Program and Public Liaison

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-03

9000 Rockville Pike

Bethesda, MD 20892-2425

Phone: 301-496-0536

Fax: 301-402-1104

Email: kaeserl@mail.nih.gov

Theodore A. Kastner, M.D., M.S.

President

Developmental Disabilities Health Alliance, Inc.

1285 Broad Street

Bloomfield, NJ 07003

Phone: 973-338-4200

Fax: 973-338-4440

Email: tkastner@ddha.com

Cille Kennedy, Ph.D.

Operations Research Analyst

Office of Disability, Aging and Long-Term Care 

Policy

Office of the Assistant Secretary for Planning and 

Evaluation

U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 424E

200 Independence Avenue, S.W.

Washington, DC 20201

Phone: 202-690-6443

Fax: 202-401-7733

Email: ckennedy@osaspe.dhhs.gov

Bonnie Kerker, M.P.H.

Department of Epidemiology and Public Health

Yale University

60 College Street, Room 310

New Haven, CT 06520

Phone: 203-785-2862

Fax: 203-785-6287

Email: bonnie.kerker@yale.edu

B – 4
Woodie Kessel, M.D., M.P.H.

Assistant Surgeon General

Office of Public Health and Science

Office of the Secretary of Health and Human 

Services

U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 728G

200 Independence Avenue, S.W.

Washington, DC 20201

Phone: 202-401-0749

Fax: 202-205-9478

Email: wkessel@hrsa.gov

Timothy J. Kowalski, D.O.

President

American College of Osteopathic Neurologists and 

Psychiatrists

South Carolina Department of Mental Health

American Osteopathic Association

WSHPI, Cottage C

1800 Colonial Drive

Columbia, SC 29202

Phone: 803-898-2270

Fax: 803-898-1596

Email: tjk53@wshpi.dmh.state.sc.us

Gloria Krahn, Ph.D.

Oregon Institute on Disability and Development

Oregon Health Sciences University

707 Southwest Gaines Road

P.O. Box 574

Portland, OR 97207-0574

Phone: 503-494-8364

Email: krahng@ohsu.edu

Fred J. Krause, M.S.

Vice President

American Association on Health and Disability

368 Heritage Drive

Gettysburg, PA 17325

Phone: 717-337-0465

Fax: 717-338-0612

Email: krause@desupernet.net

K. Charlie Lakin, Ph.D.

University of Minnesota

150 Pillsbury Drive, S.E.

Minneapolis, MN 55455

Phone: 612-624-5005

Fax: 612-625-6619

Email: lakin001@umn.edu

Alan S. Levine

Senior Program Specialist

Office of Evaluation and Inspections

Office of the Inspector General

U.S. Department of Health and Human Services

Wilbur J. Cohen Building, Room 5650

330 Independence Avenue, S.W.

Washington, DC 20201

Phone: 202-619-3409

Fax: 202-401-0556

Email: alevine@os.dhhs.gov

Joel M. Levy, D.S.W.

Chief Executive Officer

Administrative Offices

YAI/National Institute for People With Disabilities

460 West 34th Street, 11th Floor

New York, NY 10001

Phone: 212-273-6110

Fax: 212-947-7524

Email: jmlcares@yai.org

Ronald L. Lindsay, M.D., FAAP

Medical Director

Nisonger Center

Ohio State University

McCampbell Hall, Room 357C

1581 Dodd Drive

Columbus, OH 43210-1257

Phone: 614-292-6816

Fax: 614-292-3727

Email: lindsay.34@osu.edu

Michelle Link

Office Manager

School Products and Equipment Co.

1711 North Griffin Street

Bismarck, ND 58501

Phone: 701-223-5470

Fax: 701-222-0207

Email: mmlink@mcleodusa.net

rmlink@home.com

Julian A. Manelli, M.A.

Special Assistant

Office of Disability

Social Security Administration

Altmeyer Building, Room 545 

6401 Security Boulevard

Baltimore, MD 21235

Phone: 410-965-9022

Fax: 410-965-6503

Email: julian.a.manelli@ssa.gov

Lee Marrone, M.A., M.S.

School-Camp Director

Lee Mar School and Camp

360 East 72nd Street, Suite A711

New York, NY 10021

Phone: 212-988-7260

Fax: 212-988-7261

Email: gtour400@aol.com

Philip B. May, Jr., M.D.

Director, Developmental Medicine Program

Department of Medicine

Robert Wood Johnson Medical School

Hunterdon Developmental Center

P.O. Box 4003

Clinton, NJ 08809-4003

Phone: 908-735-4031, 1072

Fax: 908-730-1322

Email: pmay1@mindspring.com

Cate McClain, M.D., P.T.

Director

Center for Development and Disability

Department of Pediatrics

University of New Mexico School of Medicine

2300 Menaul Boulevard, N.E.

Albuquerque, NM 87107

Phone: 505-272-6233

Fax: 505-272-5280

Email: cmcclain@unm.edu

Susan S. McDermott, M.D.

Neurology Public Policy Fellow

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-11

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-435-3427

Fax: 301-496-0588

Email: mcdermos@mail.nih.gov

Suzanne McDermott, Ph.D.

Associate Professor

Department of Family and Preventive Medicine

University of South Carolina School of Medicine

6 Richland Medical Park

Columbia, SC 29203

Phone: 803-434-2445

Fax: 803-434-7529

Email: suzanne.mcdermott@palmettohealth.org

John McGrath, Ph.D.

Branch Chief

Public Information and Communications Branch

Office of Science Policy, Analysis and 

Communication

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-18

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892

Phone: 301-496-5133

Email: mcgrathj@mail.nih.gov

William J. McIlvane, Ph.D.

Director

Shriver Mental Retardation and Developmental 

Disabilities Center

University of Massachusetts Medical School

200 Trapelo Road

Waltham, MA 02452

Phone: 781-642-0153

Fax: 781-642-0196

Email: william.mcilvane@umassmed.edu

Terrence McNelis, M.P.A.

Board Member, National Association for the Dually 

Diagnosed

Northwestern Human Services

11082 Knights Road

Philadelphia, PA 19154

Phone: 215-632-9040, 131

Fax: 215-827-4011

Email: tmcnelis@nhsonline.org

Merle McPherson, M.D., M.P.H.

Director

Division of Services for Children with Special 

Health Needs

Maternal and Child Health Bureau

Health Resources and Services Administration

Parklawn Building, Room 18A-27

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-4948

Fax: 301-443-1728

Email: mmcpherson@hrsa.gov

Edgardo J. Menvielle, M.D.

IPA

Child and Adolescent Treatment and Preventive 

Intervention Research Branch

Division of Services and Intervention Research

National Institute of Mental Health

National Institutes of Health

Neuroscience Center, Room 7149

6001 Executive Boulevard, MSC 9633

Bethesda, MD 20892-9633

Phone: 301-443-4283

Fax: 301-443-4045

Email: emenviel@mail.nih.gov

B – 5
B – 6

Christine E. Miller, R.D.H., M.H.S., M.A.

Associate Professor and Director

President, Academy of Dentistry for People with 

Disabilities

Center of Oral Health for People with Special Needs

Dental Practice Department

University of the Pacific School of Dentistry

2155 Webster Street, Suite 500

San Francisco, CA 94115

Phone: 415-929-6426

Fax: 415-749-3399

Email: cmiller@uop.edu

Maureen Mitchell

Congressional Fellow, Senator Olympia Snowe’s Office

Joseph P. Kennedy, Jr. Foundation

Russell Senate Office Building, Room 154

Washington, DC 20510

Phone: 202-224-8673

Fax: 202-228-1071

Email: maureen_mitchell@snowe.senate.gov

John Morgan, D.D.S.

Dentist in Chief and Administrative Director

Tufts Dental Facilities

Tufts University School of Dental Medicine

200 Trapelo Road

Waltham, MA 02452

Phone: 781-899-6020

Fax: 781-893-1829

Email: john.morgan@tufts.edu

Kenneth P. Moritsugu, M.D., M.P.H.

Deputy Surgeon General Rear Admiral

Office of the Secretary

U.S. Department of Health and Human Services

Parklawn Building

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-4000

Fax: 301-443-8590

Email: kmoritsugu@osophs.dhhs.gov

Jill Morrow, M.D.

Medical Director

Office of Mental Retardation

Department of Public Welfare

Commonwealth of Pennsylvania

Health and Welfare Building, Room 423

Seventh and Forster Streets

Harrisburg, PA 17105

Phone: 717-705-2638

Fax: 717-783-5662

Email: jmorrowgor@state.pa.us

Eve K. Moscicki, Sc.D., M.P.H.

Senior Advisor

Office of the Surgeon General

Office of the Secretary of Health and Human Services

U.S. Department of Health and Human Services

5600 Fishers Lane, Room 18-67

Rockville, MD 20857

Phone: 301-443-1773

Fax: 301-443-3574

Email: em15y@nih.gov

Wendy M. Nehring, Ph.D., R.N., FAAN

Professor and Director of Undergraduate Programs

School of Nursing

Southern Illinois University at Edwardsville

Alumni Hall, Room 2120, MC 1066

Edwardsville, IL 62026-1066

Phone: 618-650-3934

Fax: 618-650-3854

Email: wnehrin@siue.edu

Liz Obermayer

The Council on Quality and Leadership

100 West Road, Suite 406

Towson, MD 21204

Phone: 410-583-0060 (work)

410-583-9090 (home)

Email: lizobe@aol.com

David O’Hara, Ph.D.

Associate Director

Westchester Institute for Human Development

Cedarwood Hall

Valhalla, NY 10595

Phone: 914-493-8202

Email: david_ohara@nymc.edu

Serene Olin, Ph.D.

Office of the Director

National Institute of Mental Health

National Institutes of Health

Neuroscience Center, Room 8207

6001 Executive Boulevard

Bethesda, MD 20892

Phone: 301-443-7856

Email: solin@mail.nih.gov

Mary Lou Oster-Granite, Ph.D.

Health Scientist Administrator

Mental Retardation and Developmental Disabilities 

Branch

Center for Research for Mothers and Children

National Institute of Child Health and Human 

Development

National Institutes of Health

6100 Executive Boulevard, Room 4B09D, MSC 7510

Bethesda, MD 20892-7510

Phone: 301-435-6866

Fax: 301-496-3791

Email: mo96o@nih.gov

Pamela Owens, Ph.D.

Staff Service Fellow

Center for Organization and Delivery Studies

Agency for Healthcare Research and Quality

EOC Building, Room 6W42

2101 East Jefferson Street, Suite 605

Rockville, MD 20852

Phone: 301-594-0759

Fax: 301-594-2314

Email: powens@ahrq.gov

Sharon A. Oxx, R.N., CDDN

Director of Health Services

Office of Quality Assurance

Department of Mental Retardation

State of Massachusetts

160 North Washington Street

Boston, MA 02114

Phone: 617-624-7792

Fax: 617-624-7577

Email: sharon.oxx@dmr.state.ma.us

Delores Parron, Ph.D.

Scientific Advisor

Office of the Director

National Institutes of Health

Building 1, Room 326

9000 Rockville Pike

Bethesda, MD 20892

Phone: 301-451-9677

Email: parrond@od.nih.gov

Robert Pasternack, Ph.D.

Assistant Secretary

Office of Special Education and Rehabilitative 

Services

U.S. Department of Education

330 C Street, S.W., Room 3006

Washington, DC 20202

Phone: 202-205-5965

Fax: 202-205-9252

Email: robert.pasternack@ed.gov

Steven P. Perlman, D.D.S., M.Sc.D.

Global Clinical Director, Special Olympics Special 

Smiles

Special Olympics, Boston University

77 Broad Street

Lynn, MA 01902

Phone: 781-599-2900

Fax: 781-598-1670

Email: sperlman@bu.edu

Loretta Petty

Deputy Assistant Secretary

Office of Special Education and Rehabilitative 

Services

U.S. Department of Education

330 C Street, S.W., Room 3006

Washington, DC 20202-1500

Phone: 202-205-5465

Fax: 301-205-9252

Debbie Powell

Special Assistant to the Commissioner

Administration on Developmental Disabilities

Administration for Children and Families

U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 300F

Aerospace Building, 370 L’Enfant Promenade

Washington, DC 20447

Phone: 202-690-5911

Fax: 202-690-6904

Email: dpowell@acf.dhhs.gov

Rick Rader, M.D.

Director

M.J. Kent Habilitation Center

Orange Grove Center

615 Derby Street

Chattanooga, TN 37404

Phone: 423-493-2936

Fax: 423-493-2926

Email: babctrmd@aol.com

Roseann Rafferty

National Institute for Disability and Rehabilitative 

Research

Office of Special Education and Rehabilitative 

Services

U.S. Department of Education

330 C Street, S.W., Room 3428

Washington, DC 20202

Phone: 202-205-5867

Fax: 202-205-9252

Sharon Landesman Ramey, Ph.D.

Director and Professor

Civitan International Research Center

University of Alabama at Birmingham

1719 Sixth Avenue South, CIRC 137

Birmingham, AL 35294-0021

Phone: 205-934-8542

Fax: 205-975-6330

Email: sramey@uab.edu
B – 7

Clyde E. Rapp, Jr., M.D.

Director

Center for Adults with Development Disabilities

Albert Einstein Medical Center

Levy 2 Building

5501 Old York Road

Philadelphia, PA 19072

Phone: 215-456-6191

Fax: 215-456-2356

Elena V. Rios, M.D., M.S.P.H.

President

National Hispanic Medical Association

1411 K Street, N.W., Suite 200

Washington, DC 20005

Phone: 202-628-5895

Fax: 202-628-5898

Email: nhma@nhmamd.org

Deidra Roach, M.D.

Medical Officer

Office of Collaborative Research

National Institute on Alcohol Abuse and 

Alcoholism

National Institutes of Health

Willco Building, Suite 302

6000 Executive Boulevard

Rockville, MD 20852

Phone: 301-443-5820

Fax: 301-480-2358

Email: droach@mail.nih.gov

Beverly Roberts, M.Ed.

Director, Mainstreaming Medical Care

The Arc of New Jersey

985 Livingston Avenue

North Brunswick, NJ 08902

Phone: 732-246-2525, 34

Fax: 732-214-1834

Email: broberts@arcnj.org

Lahoma Roebuck, M.S.W.

Public Health Advisor/Eldercare and Disabilities

Division of Clinical and Preventive Services

Indian Health Service

12300 Twinbrook Parkway, Suite 605

Rockville, MD 20852

Phone: 301-443-1068

Fax: 301-443-7623

Email: lroebuck@hqe.ihs.gov

Mona Rowe, M.C.D.

Deputy Director

Office of Science Policy, Analysis and 

Communication

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-18

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-1877

Fax: 301-496-0588

Email: rowem@exchange.nih.gov

Edgar Bear Running, I

Emergency Manager

Emergency Management Division

Oglala Sioux Tribe

Box H

Pine Ridge, SD 57770

Phone: 605-867-6074, 221

Fax: 605-867-6076

Email: ostwwt@gwtc.net

David Satcher, M.D., Ph.D.

U.S. Surgeon General

Office of the Secretary

U.S. Department of Health and Human Services

Parklawn Building

5600 Fishers Lane, Room 18-66

Rockville, MD 20857

Phone: 301-443-4000

Fax: 301-443-8590

Email: dsatcher@osophs.dhhs.gov

Lynne M. Schauls

2702 150th Street

Luck, WI 54853

Phone: 715-472-2002

Email: garlyn@lakeland.ws

Ron Schoenfeld, Ph.D.

Office of the Surgeon General

Office of the Secretary 

U.S. Department of Health and Human Services

Parklawn Building, Room 18-66

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-2132

Fax: 301-443-3574

Email: rschoenfeld@osophs.dhhs.gov

Mary Jean Schumann, M.S.N., M.B.A, CPNP

Director of Nursing Practice and Policy

American Nurses Association

600 Maryland Avenue, S.W., Suite 100W

Washington, DC 20024

Phone: 202-651-7043

Fax: 202-651-7349

Email: mschum@ana.org

Quandra Scudder

Program Analyst

Neurogenetics Cluster

National Institute of Neurological Disorders and 

Stroke

National Institutes of Health

Neuroscience Center

6001 Executive Boulevard, Room 2145

Bethesda, MD 20892

Phone: 301-496-5745

Fax: 301-402-1501

Email: qs3y@nih.gov

Tom Seekins, Ph.D.

Director

Rural Institute on Disabilities

University of Montana

52 Corbin Hall

Missoula, MT 59812-7056

Phone: 406-243-2654

Fax: 406-243-2349

Email: ruraldoc@selway.umt.edu

Marsha M. Seltzer, Ph.D.

Acting Director

Waisman Center

University of Wisconsin at Madison

1500 Highland Avenue, Room T201

Madison, WI 53705-2280

Phone: 608-263-5940

Fax: 608-263-3300

Email: mseltzer@waisman.wisc.edu

Jonathan D. Shenkin, D.D.S., M.P.H.

Resident

Department of Pediatric Dentistry

University of Iowa College of Dentistry

201 Dental Science South

Iowa City, IA 52242-1001

Phone: 319-335-7488

Fax: 319-335-5508

Email: jonathan-shenkin@uiowa.edu

Patricia Sheridan

Manager

National Oral Health Information Clearinghouse

National Institute of Dental and Craniofacial 

Research

National Institutes of Health

Building 45, Room 4AS-19, MC 6400

45 Center Drive

Bethesda, MD 20892-6400

Phone: 301-594-7557

Fax: 301-496-9988

Email: patricia.sheridan@nih.gov

Diane S. Shinberg, Ph.D.

Health Analyst

National Center for Health Statistics

Centers for Disease Control and Prevention

875 Presidential Building, MS P-08

6525 Belcrest Road

Hyattsville, MD 20782

Phone: 301-458-4669

Fax: 301-458-4035

Email: dshinberg@cdc.gov

Eunice Kennedy Shriver

Executive Vice President

Joseph P. Kennedy, Jr. Foundation

1325 G Street, N.W., Suite 500

Washington, DC 20005

Phone: 202-393-1250

Email: emobley@specialolympics.org

Sargent Shriver

Chairman of the Board

Special Olympics, Inc.

1325 G Street, N.W., Suite 500

Washington, DC 20005-3104

Phone: 202-824-0242

Fax: 202-628-0067

Timothy Shriver, Ph.D.

President and Chief Executive Officer

Special Olympics, Inc.

1325 G Street, N.W., Suite 500

Washington, DC 20005-3104

Phone: 202-824-0242

Fax: 202-628-0067

Email: tshriver@specialolympics.org

Elliott W. Simon, Ph.D.

Executive Director, Clinical Services

Elwyn, Inc.

Administration Building, Room 230

111 Elwyn Road

Elwyn, PA 19063

Phone: 610-891-2422

Fax: 610-891-2662

Thomas Spangler, J.D., M.L.I.R.

Director

Legislative and Regulatory Policy

American Dental Association

1111 14th Street, N.W., Suite 1100

Washington, DC 20005

Phone: 202-789-5179

Fax: 202-789-2258

Email: spanglert@ada.org
Giovanna Spinella, M.D.

Director, Neurogenetics Program

Neurogenetics Cluster

Division of Extramural Research

National Institute of Neurological Disorders and 

Stroke

National Institutes of Health

Neuroscience Center

6001 Executive Boulevard, Room 2136, MSC 9525

Bethesda, MD 20892-9525

Phone: 301-496-5745

Fax: 301-402-1501

Email: gs41b@nih.gov

Deborah M. Spitalnik, Ph.D.

Executive Director

Elizabeth M. Boggs Center on Developmental 

Disabilities

Department of Pediatrics

Robert Wood Johnson Medical School

University of Medicine and Dentistry of New Jersey

Liberty Plaza, Room 3500

335 George Street

New Brunswick, NJ 08901

Phone: 732-235-9326

Fax: 732-235-9330

Email: spitalde@umdnj.edu

Laurence R. Stanford, Ph.D.

Health Science Administrator

Mental Retardation and Developmental Disabilities 

Branch

Center for Research for Mothers and Children

National Institute of Child Health and Human 

Development

National Institutes of Health

6100 Executive Boulevard, Room 4B09F, MSC 7510

Bethesda, MD 20892-7510

Phone: 301-496-1385

Fax: 301-496-3791

Email: lstanfor@mail.nih.gov

Christine Stile, MAPW, E.L.S.

Writer/Editor

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-32

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-5133

Email: stilec@mail.nih.gov

Susanne Strickland

Program Analyst

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-18

9000 Rockville Pike, MSC 2425

Bethesda, MD 20892-2425

Phone: 301-496-1877

Email: strickls@mail.nih.gov

Sue Swenson

Executive Director

Joseph P. Kennedy, Jr. Foundation

1325 G Street, N.W., Suite 500

Washington, DC 20005

Phone: 202-393-1250

Email: sswenson@specialolympics.org

Damon Thompson

Public Affairs Director

Office of Public Health and Science

Office of the Secretary

U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 725H

200 Independence Avenue, S.W.

Washington, DC 20201

Phone: 202-205-1842

Email: dthompson@osophs.dhhs.gov

Teri Toothman

Executive Director

Mountain State Parents, Children, and Adolescents 

Network

20 Richmond Avenue

Wheeling, WV 26003

Phone: 304-233-5399

Fax: 304-233-3847

Email: ttoothman@mspcan.org

Sharon P. Turner, D.D.S., J.D.

Dean

School of Dentistry

Oregon Health Sciences University

611 Southwest Campus Drive, Room 610,

MC SD610

Portland, OR 97201-3097

Phone: 503-494-8801

Fax: 503-494-8351

Email: turnersp@ohsu.edu

Joseph M. Valenzano, Jr., M.B.A.

President, Chief Executive Officer, and Publisher

Exceptional Parent Magazine

65 Route 4 East

Riveredge, NJ 07661

Phone: 201-489-0562

Fax: 201-489-0074

Email: jvalenzano@eparent.com

Peter C. van Dyck, M.D., M.P.H.

Director

Office of the Associate Administrator

Maternal and Child Health Bureau

Health Resources and Services Administration

Parklawn Building, Room 18-05

5600 Fishers Lane

Rockville, MD 20857

Phone: 301-443-2170

Fax: 301-443-1797

Email: pvandyck@hrsa.gov

Benedetto Vitiello, M.D.

Branch Chief

Child and Adolescent Treatment and Preventive 

Intervention Research Branch

Division of Services and Intervention Research

National Institute of Mental Health

National Institutes of Health

Neuroscience Center, Room 7149

6001 Executive Boulevard, MSC 9633

Bethesda, MD 20892-9633

Phone: 301-443-4283

Fax: 301-443-4045

Email: bvitiell@mail.nih.gov

Ann Wagner, Ph.D.

Chief, Autism and Pervasive Development Disorders 

Intervention Research Program

Child and Adolescent Treatment and Preventive 

Intervention Research Branch

Division of Services and Intervention Research

National Institute of Mental Health

National Institutes of Health

Neuroscience Center, Room 7149

6001 Executive Boulevard

Bethesda, MD 20892-9633

Phone: 301-443-3633

Fax: 301-443-4045

Email: awagner@mail.nih.gov

Mark L. Wagner, D.M.D.

Director, Health and Research Initiatives

Program Development and Learning

Special Olympics University

Special Olympics, Inc.

1325 G Street, N.W., Suite 500

Washington, DC 20005-3104

Phone: 202-715-1148

Fax: 202-824-0397

Email: mwagner@specialolympics.org

Keri-Lyn Wall, M.S.W.

Public Information and Communications Branch

Office of Science Policy, Analysis and 

Communication

Office of the Director

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-32

9000 Rockville Pike

Bethesda, MD 20892

Phone: 301-594-8029

Email: wallk@mail.nih.gov

Elizabeth Wehr, J.D.

Office of Science Policy, Analysis and 

Communication

Office of the Director

National Institute of Child Health and Human 

Development

National Institutes of Health

Building 31, Room 2A-11

9000 Rockville Pike

Bethesda, MD 20892

Phone: 301-496-1877

Fax: 301-496-0588

Email: wehre@mail.nih.gov

Sheryl White-Scott, M.D.

Director

St. Charles Developmental Disabilities Program

St. Vincents Catholic Medical Centers of New Jersey

St. Joseph’s Hospital

79-11 Parsons Boulevard

Flushing, NY 11366

Phone: 718-558-6210

Fax: 718-558-6315

Email: swhite@cmcny.com

B – 8
C – 1

Academic Institutions and Organizations

Accrediting Bodies

Residency Review Committees

American Dental Educators Association

Association of American Medical Colleges

Association of University Centers on Disabilities

Deans of Medical, Dental, Nursing, and other Allied

Health Schools

Civil Rights, Minority Health, and Health Disparities

Organizations

NAACP

Employers and Other Purchasers of Health Care

Families

Federal and State Regulatory Agencies

State Insurance Commissioners

Federal Government Agencies

Department of Education

Office of Special Education and Rehabilitative 

Services

Department of Health and Human Services

Administration for Children and Families

Administration on Developmental 

Disabilities

Agency for Healthcare Research and Quality

Centers for Disease Control and Prevention

National Center for Birth Defects and

Developmental Disabilities

National Center for Health Statistics

Centers for Medicare & Medicaid Services 

(formerly HCFA)

Health Resources and Services Administration

Bureau of Maternal and Child Health

Bureau of Primary Health Care

Indian Health Service

National Institutes of Health

National Center on Minority Health and

Health Disparities

National Institute of Child Health and 

Human Development

National Institute of Dental and 

Craniofacial Research

National Institute of Mental Health

National Institute on Aging

National Institute on Alcohol Abuse 

and Alcoholism

Office of Minority Health

Office of Public Health and Science

Office of the Surgeon General

Office of the Assistant Secretary for Planning 

and Evaluation

Substance Abuse and Mental Health Services 

Administration

Center for Mental Health Services

Department of Labor

Social Security Administration

Office of Disability

Federal, State, and Local Government Groups

National Association of Counties

National Governors Association

State Developmental Disabilities Councils

State Medicaid Directors

State Protection and Advocacy Agencies

Appendix C: Potential Partners in Realizing the Blueprint

Conference participants were asked to identify potential partners that may help to diminish the health

disparities for people with MR. The names that appear below should not be interpreted in any way as a

commitment by a specific agency or organization. Instead, this list is intended to illustrate the potential

partnerships on many levels. Furthermore, this list is not exhaustive but includes some of the specific examples that

were offered during the Conference.
C – 2

Federal, State, and Local Policymakers

State Legislatures

U.S. Congress

National, State, and Local Professional Health and

Allied Health Organizations

American Academy of Pediatrics

American Dental Association

American Medical Association

Pharmaceutical Companies

Philanthropic Groups and Foundations

Joseph P. Kennedy, Jr. Foundation

Kaiser Foundation

Robert Wood Johnson Foundation

Public and Private Third-Party Payers

Insurance Companies

Medicaid 

Medicare

Self-Advocate, Parent, and Other Advocacy Groups

American Association on Mental Retardation

National Committee for Quality Assurance

Self Advocates Becoming Empowered

Special Olympics, Inc.

The Arc of the United States

State and Local Public Health Departments

Tribal Community and Health Organizations
D – 1

I. INTRODUCTION

Individuals with mental retardation2 experience

poorer health, shorter lifespans, and less access to

professional health care than people without this

condition (Horowitz et al.). Many factors are thought

to contribute to these disparities. Physicians and

other providers often lack training and experience in

treating individuals with mental retardation and are

reluctant to assume clinical responsibility for them.

Cultural sensitivity may be lacking. Financing for

health care services is often inadequate, and scientific

knowledge about the efficacy of care for this

population is far from complete. Services may be

poorer in quality because of societal assumptions that

people with mental retardation cannot participate

appropriately in their own health care (Surgeon

General’s Listening Session and Senate

Appropriations Committee Report). For years,

families, providers, and these individuals have sought,

with varying degrees of success, to improve their

health and health care. 

This report is designed to provide information

about service programs that have developed creative

strategies to provide health care to people with

mental retardation living in their communities. The

report is not a comprehensive catalogue of all health

care programs that use creative strategies to serve this

population. There is no attempt to evaluate

individual programs or to assess the merits of one

program over another. Instead, the report illustrates a

variety of responses to the distinctive challenges of

providing primary and specialty medical, dental,

psychiatric, and wellness services to children,

adolescents, and adults with mental retardation. The

programs described vary in scale, geographic location,

populations served, services offered, service models,

and funding. Some programs are inclusive, offering

services to a broader population and making special

accommodations for individuals with mental

retardation. Other programs specialize in care for this

population. 

Following a review of the origins of this report

and the author’s method, individual program

descriptions are presented, with contact information

for readers wishing to learn more about their

activities. The programs are grouped in four major

sections that reflect reported disparities in health care

for individuals with mental retardation: medical

services, mental health services, oral and dental

health care services, and health and wellness

programs. Within these sections, programs are shown

in subcategories that relate to different strategies in

program design. This scheme is flexible because

certain programs could fit into more than one

category. 

The National Institute of Child Health and

Human Development supported the research and

preparation of this report. Certain programs described

Appendix D: Health Disparities and Mental Retardation:

Programs and Creative Strategies to Close the Gap

Kathleen Braden, M.D.1

1 Associate Clinical Professor of Pediatrics, Eunice Kennedy Shriver Center for Developmental Disabilities, University of

Massachusetts Medical School, Worcester, MA. The programs and strategies summarized in this paper are described in more

detail in a forthcoming report by the author. The author would like to thank the many people who helped her understand

their programs and strategies for providing health care for people with mental retardation. For the most part, these people are

identified as “contacts” in the summary program descriptions. The author particularly thanks Ms. Joan Beasley, formerly with

the Robert D. Sovner Behavioral Health Research Center, for her help in understanding the history and scope of the Center’s

START Program. 

2 The author is aware that there is a controversy around the use of the term “mental retardation” and that self-advocacy groups

and professional associations are currently discussing alternatives. In preparing her report, she has sought to retain the

terminology used by the programs she describes. In the title, however, she has adopted the usage of the Surgeon General’s

effort on health disparities and mental retardation. Until a consensus is reached, with the goal of drawing attention to the

great health disparities faced by people with what has been traditionally known as “mental retardation,” that term is used in

official information on the other elements of the Surgeon General’s effort on health disparities and mental retardation.
in the report were presented at the Surgeon General’s

Conference on Health Disparities and Mental

Retardation, December 5–6, 2001, in Washington, DC.

II. ORIGINS OF THE REPORT

This report is part of recent national initiatives to

highlight and improve the health and health care of

individuals with mental retardation who live in their

communities. Until deinstitutionalization began in

the 1970s, large numbers of children and adults with

mental retardation lived in residential institutions.

Although the institutions were identifiable entities

responsible for the health of their residents, they were

typically underfunded and understaffed. 

Deinstitutionalization brought important benefits.

These benefits included newly established rights for

individuals with disabilities, for example, the right to

public education in the least restrictive environment,

and for low-income individuals, the right to publicly

financed health care coverage. Supported living and

other types of programs were created to help

individuals living in their communities. Staff-toresident ratios in group homes typically improved

compared with ratios in the older institutional care

sites. 

With the inclusion of people with mental

retardation in local communities, public attitudes

have started to change—but slowly. Severe shortages

in financial and human resources that characterized

institutional care have not been resolved. In

addition, when individuals move into community

settings, responsibility for their health care often

remains diffused. This situation means that

individuals, their families, and their caregivers

continue to face difficult challenges finding adequate

sources of health care, getting to them, and paying for

the service. 

Many of these challenges were addressed at a

March 2001 special hearing of the U.S. Senate

Appropriations Subcommittee on Labor, Health and

Human Resources. U.S. Senator Ted Stevens (R-AK)

convened the hearing to take testimony from selfadvocates, researchers, and Federal officials on the

health and health care needs of individuals with

mental retardation (Senate Appropriations

Committee Report). The focus of the hearing was a

report prepared by a research team at the Yale

University School of Medicine for Special Olympics,

Inc. (Horowitz et al.). On the basis of its literature

review, the team reported critical deficiencies in

physical, mental, vision, and dental health of people

with mental retardation. But the team also reported

that health data on this population are “scarce,” and

that public resources for persons with mental

retardation have been devoted primarily to their

deinstitutionalization, housing, education, and

employment.

At the Senate Appropriations Subcommittee

hearing, Surgeon General David Satcher called for

better health-related surveillance, community-based

health systems, targeted research, and other steps to

improve the health status of individuals with mental

retardation. The Surgeon General subsequently

launched a national effort on health disparities and

mental retardation, beginning with an invitation to

individuals with mental retardation and others

concerned with their health to help him plan a

national conference the following December. 

More than 600 comments and suggestions sent to

a special website helped to structure a Surgeon

General’s national Listening Session on October 10,

2001. Self-advocates, family members, and other

participants in the Session spoke to the Surgeon

General in person and by live, interactive video from

five sites around the country. E-mail messages and

written comment cards were also submitted.

Participants reported multiple challenges, from

dismissive and inexpert health care providers, to

shortfalls in services, insurance coverage (Medicaid

and private), transportation, coordination among

multiple service systems, and a lack of programs

promoting healthy lifestyles and disease prevention.

Providers described the poor fit between their clinical

training and the distinctive needs of patients with

mental retardation. Family members said that their

ongoing responsibility for children and adults with

mental retardation meant that they were often unable

to hold paying jobs and to carry health insurance for

themselves. Poverty was reported to be high in this

population (Surgeon General’s Listening Session).

Finally, family and provider advocates for people

with mental retardation urged the Surgeon General to

promote research into the prevalence of mental

retardation and the efficacy of care for this condition.

D – 2
Some individuals said that people with mental

retardation were “lost” in larger studies of people with

disabilities, and they urged collection of data that

could provide the basis for documenting the need for

improved funding and better allocation of health care

resources to serve this population. Others sought

research that could be used to establish evidencebased clinical standards and provide training

curricula. Researchers wrote to the Surgeon General

noting that their task was complicated by the current

use of three different diagnostic criteria for mental

retardation.

The issues and concerns described to the Surgeon

General formed the agenda for the December

conference to develop a national action plan on

health disparities and mental retardation. This report

was prepared to provide conference attendees with

examples of local and State programs that address

some of their concerns.

III. METHODOLOGY

To identify programs using creative strategies to

address health disparities in people with mental

retardation, the author queried key informants,

including self-advocates and families, health care and

social service providers, schools of dentistry and

medicine, national organizations (medical, social

service, and advocacy), and researchers and other

experts in the health care needs of people with

mental retardation. To collect information about the

programs, the author conducted semistructured

telephone and e-mail interviews with individuals who

had established and who currently administer the

programs. Respondents were asked to describe their

programs generally and to identify populations served,

services provided, and sources of funding.

Respondents also were queried about providing

training and evaluations or research associated with a

program. Finally, respondents were asked to reflect on

challenges encountered in creating and maintaining

their programs, and to provide advice to others who

may consider replicating their strategies. 

Several factors determined the selection of

programs included in the report. The first factor was

whether one or more key informants viewed a

program as a thoughtful response to one or more

health care gaps that commonly affect individuals

with mental retardation. A second factor was the

willingness of administrators to have their programs

included in the report and to provide the author with

requested information. A third factor was selection of

programs that illustrate many different types of service

models and strategies, populations served (urban,

rural, ethnic, and cultural and racial minorities),

financing mechanisms, geographic distribution, and

other characteristics. 

The following descriptions are based on

information provided by program administrators.

IV. PROGRAMS AND CREATIVE

STRATEGIES (SUMMARY

DESCRIPTIONS)

A. MEDICAL SERVICES

1. Comprehensive Health Care Integrated with

Social Services

*a. New York City Premier Health Care

Program, New York, NY—Citywide program

providing primary and subspecialty care and dental

and mental health services to culturally and socially

diverse population of individuals with developmental

disabilities, including mental retardation. Provides

case management and family care services; maintains

outreach to schools, residences, day programs, and

homes. 

Funding: Fee-for-service from insurers of all types

(Medicaid, Medicare, private insurance). State pays a

special rate for recipients with developmental

disabilities.

D – 3

* Denotes programs presented at the Surgeon General’s Conference on Health Disparities and Mental Retardation, December

5–6, 2001, Washington, DC.
Contact:

Joel M. Levy, D.S.W.

Chief Executive Officer

Young Adult Institute Network

460 West 34th Street

New York, NY 10001

212-273-6515

jmlcares@yai.org

*b. Developmental Disabilities Health Alliance,

Inc., (DDHA), Bloomfield, NJ—Statewide health

care company providing primary and mental health

care, interdisciplinary assessments, health promotion

and disease prevention, and other services for two

groups of Medicaid managed care enrollees: children

and adults who qualify for services of the State

Division of Developmental Disabilities (DDD), and

individuals who qualify for Medicaid and Medicare.

DDD arranges needed consultations with local

“safety-net” providers. Providers are trained in the

company’s service model. A five-year planning

process including all stakeholders preceded

establishment of the company.

Funding: Medicaid, under DDHA contracts with

Medicaid managed care plans. 

Contact:

Theodore Kastner, M.D., M.S., President

Developmental Disabilities Health Alliance

1285 Broad Street

Bloomfield, NJ 07003

973-338-4200

tkastner@ddha.com

c. Northern Virginia Training Center’s

Regional Community Support Center, Fairfax,

VA—Regional Center of Excellence providing

specialized medical, behavioral, dental, and respite

services for individuals with mental retardation and

complex medical and behavioral needs. Program

evolved from residential training center and includes

inpatient services. Provides training for staff of

community residential services and vocational

providers, also to university students in health and

other professions. Evaluates consumer satisfaction.

Funding: Primarily State and Federal funds for

Intermediate Care Facilities for Mental Retardation

(ICF/MR). Additional revenue sources, primarily

Medicaid and private insurance, are being explored.

Steering committee includes facility and community

stakeholders. State is expanding service model to

other State training centers and to geriopsychiatric

centers.

Contact: 

Mark Diorio, Ph.D., M.P.H.

Facility Director

Northern Virginia Training Center

9901 Braddock Road

Fairfax, VA 22032

703-323-4002

mdiorio@nvtc.state.va.us

2. Inclusive Health Services

a. Vermont Rural Medical Home, Northfield,

VT—A program based in a primary care physician’s

office, for children with developmental disabilities

and their families. A steering committee composed of

the physician, head nurse, and three families of the

children designed special office procedures based on a

survey of the parents. Procedures include a script for

the receptionist to identify patients with special

needs, parking and other special accommodations for

office visits, and queries during visits about

nonmedical needs. Other elements are a resource

parent/care coordinator position and a family network

that advocates on medical and educational concerns.

Currently exploring expansion to other physicians’

offices.

Funding: Initial Robert Wood Johnson

Foundation grant; additional grant and Medicaid

funding for care coordinator position. 

Contact:

Kim Daniels

645 North Main Street

Northfield, VT 05663

802-485-8271

kdaniels@together.net

*b. Alabama Mother and Family Specialty

Center, Birmingham, AL—Demonstration project at

university research clinic providing prenatal care to

multirisk, African American, inner-city clients.

Estimated 30 percent of women were mildly to

moderately cognitively impaired. Provided prenatal

care (medical, nursing, social work, nutrition,

education) using evidence-based practices. Clinic

D – 4
D – 5

nurse-practitioners trained to recognize potential

problems in patient comprehension, communication,

and understanding. Videotape and other client

supports developed; transportation and onsite child

care offered. Study results indicated positive effects,

including participants’ knowledge of risk conditions

and perceived mastery in their lives. 

Funding: Grant from Federal Agency for Health

Care Policy and Research (now the Agency for

Healthcare Research and Quality). Research

demonstrated that costs could be funded through

Medicaid.

Contact:

Sharon L. Ramey, Ph.D.

Director and Professor

Civitan International Research Center

1719 Sixth Avenue South, Suite 137

Birmingham, AL 35294-0021

205-975-0299, fax 205-975-6330

sramey@civmail.circ.uab.edu

3. Specialty Outreach Services

*a. Ohio Rural Developmental and Behavioral

Clinic Initiative, Columbus, OH—Regional

outreach clinic serving children with mental

retardation and developmental disabilities in

Appalachian counties in southeastern Ohio. Provides

onsite, multidisciplinary evaluations for infants and

children up to age six with developmental delays and

for school-age children with developmental

disabilities and mental health/behavioral disorders.

Assessment teams are clinic staff and the local public

health nurse; teams also may include local school

personnel, primary care and mental health providers,

and county juvenile justice systems. Program also

provides referrals, coordination by a local public

health nurse, and health professions training in

clinics. Program is evolving from one that provides

direct services to one that trains local program

personnel to evaluate and care for the children.

Funding: Primary funder is State Department of

Health (Title V agency); other support includes

Healthy Tomorrows and Leadership Education in

Neurodevelopmental Disabilities (LEND) grants

(Federal Maternal and Child Health Bureau, Health

Resources and Services Administration), also private

foundations and financial and in-kind support from

participating agencies and local programs, such as

early intervention, county health departments,

schools, Head Start, county mental

retardation/developmental disability boards, and

physicians. 

Contact:

Ronald L. Lindsay, M.D., FAAP

Medical Director, Nisonger Center UCE

The Ohio State University

1581 Dodd Drive

Columbus, OH 43210-1296

614-292-6816

lindsay.34@osu.edu

b. South Dakota Rosebud Developmental

Clinic, Sioux Falls, SD—Interagency program

providing developmental screening at reservation

WIC clinics for infants and children up to age five;

also screening followup, referral for evaluations at

reservation clinic for children, and linkages to services

for families of children with health and/or

developmental concerns. Trains local providers and

university graduate students. “Uses best available

practices.” 

Funding: Three-year startup funding from the

Federal Bureau of Indian Affairs and State Office of

Special Education; currently supported by the tribe.

Contact:

Judy Struck

Executive Director

Center for Disabilities, Department of Pediatrics

University of South Dakota School of Medicine

1400 West 22nd Street

Sioux Falls, SD 57105

605-357-1439 or 1-800-658-3080

jstruck@usd.edu
c. Rose F. Kennedy Children’s Evaluation and

Rehabilitation Center Mobile Team, Bronx, NY—

Mobile team providing multidisciplinary evaluations

to children of clients at a methadone maintenance

clinic. Transportation to and medication at the

evaluation site were offered to clients of other

methadone clinics. Team services on site included

family counseling, short-term speech therapy,

nutritional counseling, and behavior management

training; referrals provided for educational,

therapeutic, and medical services. Training in child

development, for substance abuse clinic staff,

provided. 

Funding: Medicaid; but reimbursement is limited

to one clinician visit per client per day; limited ability

of program to finance multiple clinician services

needed to complete evaluations during a client’s visit. 

Contact: 

Lisa Shulman, M.D.

Rose F. Kennedy Children’s Evaluation and 

Rehabilitation Center

Albert Einstein School of Medicine

Yeshiva University

1165 Morris Park Avenue, Second Floor

Bronx, NY 10461

718-430-3901

shulman@aecom.yu.edu

4. Specialized Provider Training

a. New Mexico Continuum of Care Project,

Albuquerque, NM—Statewide program that trains

health care professionals in care of deinstitutionalized

individuals and trains direct care staff and case

managers to provide medical support for clients.

Program also includes specialty consultation clinics;

specialized clinics at several primary care clinics;

consultations for physicians, nurses, caregivers, case

managers, interdisciplinary teams, and families; and

consultations on policy for State agencies. Mediation

provided for team or agency conflicts affecting

delivery of services. Program maintains a website

(http://star.nm.org/coc). 

Funding: State Department of Health, also some

Medicaid and Federal Maternal and Child Health

Bureau funds. 

Contact:

Jennifer Thorne-Lehman

Senior Program Manager

University Center for Development and Disability

University of New Mexico

2300 Menaul Boulevard, NE

Albuquerque, NM 87107

505-272-5215

jlehman@unm.edu

*b. Pennsylvania Health Care Quality Units

(HCQU) Program, Harrisburg, PA—Data

collection, training, and technical assistance

organizations working with health care and residential

services providers in multicounty areas. HCQUs

housed in parent organizations, such as nursing

schools and mental health services, but administered

independently. No direct services; program focus is

on improving communication between residential

care and medical systems and on increasing capacity

of both systems. Future goals include collecting and

analyzing data related to management of health care

incidents to aid counties providing services, and

expanding data collection to include individuals

living outside a residential system to assess their

quality of care. 

Funding: Medicaid (Medicaid waiver

administrative funds and funds for individuals other

than those eligible for waiver funding). 

Contact:

Jill Morrow-Gorton, M.D.

Medical Director

Office of Mental Retardation

Commonwealth of Pennsylvania

Health and Welfare Building, Room 423

Harrisburg, PA 17105

717-705-2638

jmorrowgor@state.pa.us

B. MENTAL HEALTH SERVICES

1. Tertiary Care Psychiatric Outpatient

Clinic/Training Strategies

*a. Rochester Mental Retardation/

Developmental Disabilities Psychiatric Disorders

Outpatient Clinic, Rochester, NY—University-based

outpatient clinic offering therapy for individuals aged

18 and older, diagnosed with mental retardation and

D – 6
mental illness (dual diagnosis). Provides training for

psychiatry residents, providing therapy for caregivers

as well as for individual clients. Housed in university

psychiatry department; works with pediatric

department’s developmental disabilities center and its

crisis intervention team. Mission includes providing a

service model for professional training (all disciplines,

all levels) and research to increase knowledge of dual

diagnosis.

Funding: State Funding for first eight years of

clinic; current funding from third-party payers. 

Contact:

Nancy N. Cain, M.D.

Director, Psychiatric Service

University of Rochester School of Medicine and 

Dentistry

Strong Center for Developmental Disabilities

202 Roosevelt Road

Rochester, NY 14618

716-275-3587

nancy_cain@urmc.rochester.edu

b. Nebraska Neuro-Developmental Psychiatry,

Omaha, NE—University-based program providing

psychiatric outpatient care for older adolescents and

adults with developmental disabilities and mental

health needs, living in State and in parts of Iowa.

Program also trains psychiatry residents. Services

include testing and evaluations, psychotherapy,

behavioral interventions, medication management,

and consultations. Clients are primarily from rural

communities.

Funding: University Department of Psychiatry in

College of Medicine and third-party payers.

Contact:

Mark H. Fleisher, M.D.

Director, Neuro-Developmental Psychiatry

University of Nebraska College of Medicine

985578 Nebraska Medical Center

Omaha, NE 68198-5578

402-354-6402

mhfleish@unmc.edu

2. Specialty Care and Service Linkages

a. START Program at Robert D. Sovner

Behavioral Health Resource Center, Danvers,

MA—The Systemic, Therapeutic, Assessment,

Respite and Treatment (START) program for

individuals with developmental disabilities and

behavioral/mental health care needs (dually

diagnosed) in region, links developmental disabilities

agencies and mental health providers serving the

general population. Program also provides crisis

intervention services, and specialized outpatient

psychiatric services for dually diagnosed individuals.

Services include a mobile emergency crisis team,

emergency meetings involving inpatient units or an

emergency respite facility, emergency and “planned”

respite services, and short-term psychiatric inpatient

care (community mental health and general

hospitals). Program focus is planning and

coordination by mental health crisis and

developmental disabilities service teams, working with

individuals, families, and caregivers. Specialty

interventions provided as needed. 

Funding: State Department of Mental

Retardation; also insurance.

Contact:

Debra Phelps, M.S.

Director

The Robert D. Sovner Behavioral Health Resource 

Center

99 Rosewood Drive, Suite 240

Danvers, MA 02467

978-750-6828, x20

dphelps@glmh.org

*b. Rochester Community-Based Crisis

Intervention Services, Rochester, NY—Universitybased crisis intervention program aids communication

and cooperation between community providers

serving individuals with mental retardation and

challenging behaviors. Services include establishing

formal and informal communications and agreements

among various providers, educating families and

agency staff (e.g., psychiatric emergency room social

worker and psychiatric residents), conducting skilled

behavior assessments, and employing management

techniques.

D – 7
Funding: State Office of Mental Retardation and

Developmental Disabilities.

Contact: 

Nancy N. Cain, M.D.

Director, Psychiatric Service

University of Rochester School of Medicine and 

Dentistry 

Strong Center for Developmental Disabilities

202 Roosevelt Road

Rochester, NY 14618

716-275-3587

nancy_cain@urmc.rochester.ed

C. ORAL HEALTH CARE AND DENTAL

SERVICES

1. Health Care and Training in Academic

Settings

a. Dental Education in Care of Persons with

Disabilities (DECOD) Program, Seattle, WA—

Clinical service and training clinic at the University

of Washington dental school, providing care for adults

with special health care needs resulting from

developmental, physical, medical, and emotionally

disabling conditions. Services include diagnostic

assessments, preventive care, primary dental care,

emergency services, and rehabilitation for individuals

with complex oral problems. Services provided in

clinic and at affiliated clinics in a residential school,

at other sites, and in individual residences for those

who are homebound. Emphasis is on use of patient

management techniques and avoiding use of sedation

whenever possible. Clinic trains dental school

students in care of individuals with special needs.

Patient surveys indicate a high degree of satisfaction

with quality of care. 

Funding: Startup funding from the Robert Wood

Johnson Foundation; currently supported by dental

school Department of Oral Medicine with additional

support from State Department of Health and Social

Services, which pays a special rate to cover specific

dental services and costs from increased treatment

time. 

Contact:

Glenn M. Govin, D.D.S., M.P.H.

DECOD

Department of Oral Medicine

School of Dentistry

University of Washington

D-215 Health Sciences Center, Box 356370

Seattle, WA

206-543-1546

ggovin@u.washington.edu

2. Linkages Between Developmental Disabilities

Service Systems and Dental and Oral Health

Providers

a. Butler County Dental Care Program,

Hamilton, OH—Countywide program coordinating

care, through case management, for adults

participating in the State mental

retardation/developmental disabilities system.

Program developed network of providers, hospitals,

case managers, caregivers, and guardian agencies.

Dental hygienist serves as care coordinator; provides

comprehensive assessments of individuals’ oral health

and extent of disability, obtains medical and dental

histories, and accompanies clients to participating

dentists’ offices. Dentists are offered professional

education credits in care of this population. Program

also arranges transportation to dental appointments

and counsels caregivers and providers on potential

sources of payment for services. Consumers are

visited periodically to ensure that the health

promotion plan is understood and followed.

Funding: Support from the Health Foundation of

Greater Cincinnati and county Board of Mental

Retardation and Developmental Disabilities. Some

startup funds came from ARC.

Contact:

Diane Vasiliadis, R.D.H.

Program Coordinator

Butler County Dental Care Program

2100 Pleasant Avenue

Hamilton, Ohio 45015

513-863-2364

dvasiliadis@cinci.rr.com

D – 8
*b. The University of the Pacific School of

Dentistry California Center for Oral Health for

People With Special Needs, San Francisco, CA—

County-based program providing a dental coordinator

for individuals with developmental disabilities in local

social service agencies in rural communities. Services

include community assessments of existing oral health

resources, triage and referrals by a coordinator,

prevention training and materials for caregivers and

parent groups, recruitment of dentists and provision of

in-office social supports, continuing education courses

for oral health professionals, hands-on training, and

educational materials. Program established a

statewide task force that developed a State action

plan and continues to have input on legislation.

Program working with State Department of

Developmental Services to integrate oral health

training into health and other professional education

programs.

Funding: Initial grant funding; social service

agencies now fund a dental coordinator. Program

expected to be replicated in eight communities with

foundation support.

Contact:

Paul Glassman, D.D.S., M.A., M.B.A.

Professor of Dental Practice

Associate Dean for Information and Educational 

Technology

Director, Advanced General Dentistry Residency

University of the Pacific School of Dentistry

2155 Webster Street

San Francisco, CA 94115

415-929-6490

pglassman@uop.edu

3. Dental Care Provided by an Inpatient

Intermediate Care Facility (ICF/MR) 

a. Hazelwood Center ICF/MR Dental Services

Clinic, Louisville, KY—Program at an intermediate

care facility providing dental care to individuals with

severe to profound mental retardation residing at the

facility and to clients from three outlying community

homes. Services include general dentistry,

periodontal and oral surgery, endodontics, biopsy, and

emergency dental care. Conducts research on

improving quality of care (protocols reviewed by

University of Louisville Institutional Review Board).

Reports very low rate of referrals to inpatient

operating room for treatment under general

anesthesia. Program developed procedures for lowdose digital radiography and reduction of gingival

hyperplasia with maintenance of seizure control.

Funding: State mental retardation/developmental

disability agency; expected new State funding will

permit treatment of individuals with mental

retardation living in group homes or with their

families. 

Contact:

Henry Hood, D.M.D.

Director, Dental Services Clinic

Hazelwood Center ICF/MR

1800 Bluegrass Avenue

Louisville, KY 40214-0506

502-361-2301

henry.hood@mail.state.ky.us

b. Tufts Dental Facilities (TDF) Serving

Persons with Special Needs, Waltham, MA—

Statewide, university-based program providing

comprehensive oral health care for individuals with

developmental disabilities. Multipart program

includes a Special Needs Community Dental Health

Program, which is a partnership of individuals with

developmental disabilities, special education

personnel, parents, social workers, and service

coordinators. Provides oral health evaluations and

referrals for treatment by dental hygienists, also case

management and oral health education in classrooms,

adult day activity centers, sheltered workshops, and

community residences. Other program components

include dental clinics at developmental disability

centers and elsewhere, and postgraduate training for

general dentists concerning care for individuals with

developmental disabilities and for other special

populations. 

Funding: State departments of health and mental

retardation and revenues from third-party payers.

Dental clinic clients funded through the State’s

managed care plan for low-income residents.

Additional funds are needed to continue the program.

D – 9
D – 10

Contact: 

John Morgan, D.D.S.

Assistant Professor

Tufts University School of Dentistry

Dentist in Chief and Administrative Director, TDF 

Program

200 Trapelo Road

Waltham, MA 02452

781-899-6020

john.morgan@tufts.edu

D. HEALTH AND WELLNESS PROGRAMS

1. Wellness Training for Individuals with Mental

Retardation

*a. Healthy Lifestyles for Persons With

Developmental Disabilities Program, Portland,

OR—Program provides workshops in health

promotion, with peer trainers, for individuals with

developmental disabilities. Curriculum reflects needs

identified in six geographic and culturally diverse

focus groups of individuals with developmental

disabilities and discussions with care providers. It also

teaches principles of self-determination, development

of individual support systems, and healthy lifestyles.

Programs include recruitment of mentors from

participants’ communities and collection of followup

data to monitor and determine the impact of training. 

Funding: Federal Administration on

Developmental Disabilities grant (Project of National

Significance) and partnership with State Office on

Disability and Health. 

Contact:

Gloria Krahn, Ph.D.

Oregon Institute on Disability & Development

Oregon Health & Science University

P.O. Box 574

Portland, OR 97207-0574

503-494-8364

krahng@ohsu.edu

*b. Rehabilitation Research and Training

Center (RRTC) on Health and Wellness for

Persons With Long-Term Disabilities, Portland,

OR—Program trains students who will become care

providers for children and adolescents with

neurodevelopmental and related disabilities. The

center has developed a pilot-tested professional

training curriculum in health promotion and wellness

for adolescents with neurodevelopmental and related

disabilities. Curriculum developed for use by master’s

level and predoctoral students and by individuals in

medical fellowship programs who will provide care to

children and adolescents with neurodevelopmental

and related disabilities. Curriculum is adapted from

materials for persons without developmental

disabilities and reflects data from focus groups of

adolescents with developmental disabilities,

consultations with adolescents with physical and

learning limitations, consultations with other LEND

programs, and the literature. Curriculum modules

address general concepts of wellness and disability,

sexuality and mental health, and substance abuse.

Data collected to monitor and to determine impact of

training; field-testing planned at three other LEND

programs, with further data collection to assess overall

program impact.

Funding: Federal Administration on

Developmental Disabilities grant (Project of National

Significance); National Institute on Disability and

Rehabilitation Research, Maternal and Child Health

Bureau (LEND), and partnership with State Office on

Disability and Health. 

Contact:

Carla Culley

Center Coordinator

RRTC on Health and Wellness

P.O. Box 574

Portland, OR 97207-0574

503-494-9557

culleyc@ohsu.edu
REFERENCES

“Archived Videocast of the Surgeon General’s

Listening Session on Health Disparities and Mental

Retardation,” October 10, 2001. Link to website:

http://videocast.nih.gov/PastEvents.asp?c=4&s=11

Horowitz S, Kerker B, Owens P, and Zigler E.

“The Health Status and Needs of Individuals with

Mental Retardation.” New Haven: Yale University

School of Medicine. Published by Special Olympics,

Inc., March 2001. Link to website:

http://www.specialolympics.org/world_games

/game_stories/Health%20Status.pdf

107th Congress, United States Senate Committee

on Appropriations, Report on Special Hearing, March

5, 2001, S. Hearing Report No. 107-92. (Includes a

reprint of paper by Horowitz et al.) Link to website:

http://frwebgate.access.gpo.gov/cgibin/getdoc

.cgi?dbname=107_senate_hearings&docid=f:71288

.wais.pdf

D – 11

E – 1

INTRODUCTION

On October 10, 2001, Surgeon General David

Satcher, M.D., Ph.D., held the first-ever Surgeon

General’s Listening Session on Health Disparities and

Mental Retardation. The Listening Session was a

major component of the Surgeon General’s effort on

health disparities and mental retardation, a national

dialogue to better understand and address the many

severe and often unmet health needs of people with

mental retardation. The keystone of the effort is

reaching out to individuals with mental retardation,*

their families and providers, advocacy groups, and

community-based organizations that are on the front

lines daily, trying to protect and promote the health

and well-being of people with mental retardation.

This summary provides an overview of comments

to the Surgeon General during the Listening Session.

It also reflects written comment cards collected during

the Session and e-mail messages to a special Surgeon

General’s website received before, during, and one

week following the Listening Session.

The purpose of the Listening Session was to learn

directly of health-related concerns and experiences of

individuals with mental retardation and others

concerned with their health. Participants were

invited to share their thoughts regarding the unmet

health needs of people with mental retardation, and

to suggest possible solutions.

The major themes that emerged from the

Listening Session were used to develop the agenda for

the Surgeon General’s Conference on Health

Disparities and Mental Retardation on December 5–6,

2001. At that Conference, individuals and families

will work with leading experts, researchers, and

representatives of professional and other health care

organizations to develop a national action plan

addressing health disparities and mental retardation.

This grassroots approach reflected the Surgeon

General’s commitment to an action plan addressing

the issues of most importance to individuals with

mental retardation and others concerned with their

health. Conference participants will discuss what is

currently known concerning the science, practice, and

Appendix E: Summary of the Surgeon General’s Listening

Session on Health Disparities and Mental Retardation

October 10, 2001

National Institutes of Health

Bethesda, MD

Civitan International Research Center, University of Alabama

Birmingham, AL

Eunice Kennedy Shriver Center, University of Massachusetts Medical School

Worcester, MA

Oregon Institute on Disability & Development, Oregon Health & Science University

Portland, OR

Waisman Center, University of Wisconsin

Madison, WI

* In this summary, “individual” refers to an individual with mental retardation. The Surgeon General is aware that there is a

controversy around the use of the term “mental retardation” and that self-advocacy groups and professional associations are

currently discussing alternatives. Until a consensus is reached, with the goal of drawing attention to the great health disparities

faced by people with what has been traditionally known as “mental retardation,” that term will be used in official information

on the Conference and other elements of the Surgeon General’s effort on health disparities and mental retardation. 
other aspects of health care services for individuals

with mental retardation, identify priority issues, and

draft recommendations for action. 

This summary of the Listening Session reflects

comments presented by more than 40 individuals

during the Session as well as comments of an

additional 800 individuals, including nearly 600 who

had sent comments to the Surgeon General’s website

before the Listening Session. Analysis of the issues

described in these comments indicated that they

cluster under four themes, which formed the agenda

of the Listening Session. The themes were as follows:

Understanding special health care needs. Examples

of issues were attitudes of health professionals towards

individuals with mental retardation, and provider

knowledge and understanding of special health care

needs of these individuals.

Getting health care services. Examples of issues

were finding and getting to appropriate health care,

and paying for needed services. 

Growing up and living with disabilities. Examples of

issues were age-appropriateness of health care services,

and transitions as individuals’ health care needs

change with their age. 

Healthy lifestyles. Examples of issues included

roles of health professionals, individuals with mental

retardation, and their caregivers in maintaining

health and preventing illness and secondary disability. 

During the three-hour Listening Session, speakers

at five sites described their concerns and ideas for

improvement to Dr. Satcher, Dr. Duane Alexander,

Director of the National Institute of Child Health

and Human Development, other participants at the

sites, and a national audience viewing a live videocast

of the Session. The archived videocast can be viewed

at http://videocast.nih.gov/PastEvents.asp?c=4&s=11.

Representatives of 29 different Federal agencies and

more than 70 nongovernment organizations

participated in the planning and implementation of

the Listening Session. 

The summary begins with a discussion of several

themes that recurred throughout the Session in many

different comments, both verbal and written. The

many specific issues described for the Surgeon

General are summarized in bulleted lists under eight

topical headings (two for each of the four Listening

Session themes). To convey the tone of the Listening

Session, selected remarks of participants are shown in

italics. 

COMMON THEMES

Throughout the Listening Session and in written

comments, providers, caregivers, and especially selfadvocates spoke of their determination to be treated

by health care providers as “real people,” with the

same interest in good health and functioning as

people without mental retardation. As one selfadvocate told the Listening Session:

“I am who I am, and I can be the best of who I am.

All I’m trying to do is make a living, and the only way I

can do that is to have good health care.”

At the same time, speakers described distinctive

characteristics that indicated the need for specialized

approaches to health care. One health care provider

wrote: 

“...Disability impacts the way people experience

medical, social, and psychological problems. Learning

ability and health may be affected by medication,

complicated by challenging behaviors, or impacted by

anxiety or fear....” 

A second common theme was the individualized

nature of the health care needs of individuals with

mental retardation. The types and intensity of

services an individual may need vary with the

individual’s age, the coexisting conditions, the

etiology of his or her mental retardation, and the

environment in which the individual lives. Some

participants spoke primarily of the same types of

preventive, acute, and chronic health care needs that

people without mental retardation experience.

Others reported the challenges of managing

exceptionally complex coexisting conditions. One

family member, describing a child with Down

syndrome, said: 

“...The medical issues are more paramount. [The

child] has had open heart surgery, two pacemakers,

asthma, [tracheomalacia], four sets of ear tubes, four eye

surgeries,...RSV [respiratory syncytial virus], Candida

albicans infection, reflux, Sjogren’s syndrome, JRA

E – 2
E – 3

[juvenile rheumatoid arthritis], scoliosis, 47 pneumonias,

upper right lobe lung damage (resulted in 14 months of

supplemental [oxygen]), dental health issues, strabismus,

and nystagmus.”

A third common theme was the need for more

information—both science-based knowledge that

could improve the health of individuals with mental

retardation, the quality of their care, and their access

to services, and also specific information on how to

understand a family member’s condition and how to

find and pay for health care. In particular, difficulties

in recognizing and treating behavior disorders,

depression, and other mental illness were often

described. Family members wanted to understand

what behavior in a child is developmentally

appropriate and what may be a behavior disorder that

would benefit from early diagnosis and treatment. A

health care professional wrote:

“Many academic physicians/dentists are bewildered by

the health problems of mentally retarded people [sic] with

severe complex disabilities and will acknowledge that

clinical research-based medical data necessary for optimal

treatment of frequently occurring medical/dental conditions

in this population is lacking....”

A family member said she felt both overwhelmed

by information available on the Internet, yet

underinformed about day-to-day issues in the health

of a family member with mental retardation. Another

told the Listening Session: 

“No one seemed to be able to help us find what we

wanted or needed.”

Finally, certain participants described personal

strategies that they considered helpful, as well as

existing services and programs that seemed successful.

One-self advocate said: 

“People advocated for me and helped me learn

advocacy skills so that I could personally help medical

professionals know my needs.”

Among existing programs that individuals

described as helpful were health promotion activities

that focused on obesity in a special education setting;

a Medicaid-financed waiver program that trained

minority personal assistance staff to work with

adolescents with disabilities; medical curricula that

included parents of individuals with disabilities as

teachers of medical students; and a one-stop

diagnostic, treatment, and resource center for families.

Some participants also suggested changes that

could reduce health disparities experienced by

individuals with mental retardation. For example,

they urged priority attention to research and care for

individuals with mental retardation and mental illness

(dual diagnosis). Collaborations between academic

medical and dental centers and physicians and other

providers with experience in institutional care of

people with mental retardation were suggested as a

means of improving both care and the quality and use

of research. 

Other suggestions included development of

standards of clinical practice and standards for

evaluation of services for individuals with mental

retardation; professionalization of personal care

attendants; changes in the organization and financing

of health care; and addressing public misperceptions

of mental retardation. One of the most common

suggestions was revisions in curricula of health

professions schools and training programs. One

family member said:

“As [my daughter] gets older, [the] doctor’s

appointment becomes even more challenging. Since she is

nonverbal and not able to express herself in meaningful

ways, finding out what has been bothering her has been

the job of my instinct....I really think the medical schools

should somehow incorporate curriculum on dealing with or

treating persons with disabilities, particularly with mental

retardation, into their existing course of study. Being a

member of an immigrant community, I think there has to

be more diverse medical personnel to effectively treat

patients whose English proficiency is limited....”

Many participants summed up their concerns as

lack of access to the type of care they needed, when

they needed it. In grouping examples of these

concerns under the topical headings below, an effort

was made to highlight underlying factors that could

be addressed in a national action plan. 
SUMMARY EXAMPLES OF LISTENING

SESSION TOPICS

Understanding Special Health Care Needs

Attitudes of Health Care Professionals

“Whenever I go into the doctor’s office,...they talk to

the people that bring me. But it’s my life and it’s my

illness.... Can you respect me enough to talk to me?”

(Self-advocate)

“Doctors need to be educated by families....”

(Health care educator)

• A physician or other health care provider may be

reluctant to accept an individual as a patient. 

• A provider may not accept Medicaid recipients as

patients. 

• A provider may provide or recommend a lower

level of care for an individual with mental

retardation than would be recommended for a

person without this condition. 

• A provider may not interact directly with the

individual with mental retardation but may

instead talk only with a family member or other

person with the individual. 

A provider may not respond to or understand

values and perceptions of health and mental

retardation of African Americans, Native Americans,

Alaska Natives, Hispanics, Southeast Asians, and

other distinctive ethnic and cultural groups; a

provider may not speak the primary language of an

individual with mental retardation and his or her

family. 

The Quality of Health Services

“... [Individuals with these disabilities] may need

increased time, different treatment methods, and more

frequent learning opportunities....” (Health care

professional)

“Where is research currently conducted and/or

compiled that addresses (a) epidemiology of health statistics

of persons with MR, (b) access to health care,

(c) effectiveness of training programs for providers,

families, and self-advocates, and (d) impact of Federal

and State funding policies in health care access and health

statutes?” (Listening Session comment card)

• Multiple gaps in the scientific knowledge base

impede improvements in the health care of

individuals with mental retardation. Data

collection and analyses typically fail to specifically

identify individuals with mental retardation. 

• More translation of the existing science base into

forms usable by individuals, caregivers, and health

care providers is needed. 

• Clinical practice guidelines and methods of

measuring quality of care for individuals with

mental retardation are needed. The experience of

individuals with mental retardation in using a

health care service should be considered when

that service is being evaluated. 

• Health providers often lack specialized knowledge

and training in treating individuals with mental

retardation.

• Health care providers may not be knowledgeable

about specific clinical issues, such as diagnosis and

treatment of mental illness and recognition of

abuse and neglect. 

• A provider may use medication inappropriately to

control challenging behaviors, instead of using

therapies to assist the individual and caregiver

with managing such behaviors. 

• Health care providers may be more likely to

extract teeth than to provide ongoing preventive

oral health care for individuals with mental

retardation.

• An individual’s medical history, diagnosis, and

treatment may be substandard because the

provider does not communicate effectively with

the individual. For instance, diagnostic and

treatment procedures that are inadequately

explained may be refused. A provider may be

reluctant to accept clinical responsibility when an

individual refuses recommended procedures.

E – 4
Getting Health Care Services

Finding and Getting To Health Care Services

“We drive 200 miles to get specialized health care

because doctors here have no understanding of [our

daughter’s] needs, mostly because she has Down

syndrome, besides other conditions many ‘normal’ people

get.” (Family member)

• Individuals, families, and providers lack

information about the types, locations, and

availability of health care services. 

• There are shortages of appropriately trained and

experienced providers at all points of contact in

the health care system: primary care and specialist

physicians, including psychiatrists, dentists,

nurses, psychologists, ancillary health care

professionals such as radiograph technicians,

emergency department providers, and

administrative staff of health care providers and

services. Shortages are particularly acute in rural

and low-income urban areas.

• Clinical sites may not be physically accessible,

such as not being accessible for individuals with

visual and/or hearing impairments. 

• Professional equipment, from scales to dental

chairs to diagnostic and treatment equipment,

may not be appropriate for individuals with

disabling conditions, including mental

retardation. 

• Shortages of appropriate health care services exist

across community settings, including in homes of

individuals, in schools, and in supported living

arrangements. 

• Mental health programs lack models of care that

are appropriate for individuals with mental

retardation. 

• A provider may not be knowledgeable about

working cooperatively with families, special

education programs, community living

arrangements, or other systems providing health

and other types of care for an individual. This

lack of knowledge concerning existing,

appropriate health and related services makes

these resources less accessible to individuals who

require them.

Paying for Health Services 

“...I needed to navigate a very complex medical

assistance system and even find loopholes so that my

dentures would be replaced sooner than the allocated time

for replacement due to early breakage (from seizures).”

(Self-advocate)

• Needed services may be excluded from insurance

coverage (Medicaid or private, including managed

care). For example, Medicaid typically does not

cover routine adult dental, vision, or hearing

services or preventive care. Private insurers

typically exclude long-term therapies,

developmental assessments, nutritional products,

and customized durable medical equipment. 

• Mental retardation may be characterized as a

mental illness, excluded from medical coverage,

or as a neurologic condition, excluded from

psychiatric coverage.

• An insurer may refuse to provide coverage for an

individual with mental retardation.

• Insurance premiums may be exceptionally costly;

out-of-pocket costs of services not covered by an

insurer may be unaffordable for middle-class

families.

• An insurer (including Medicaid) and school

system may each refuse coverage for occupational,

speech-language, or physical therapies, and other

services provided in the educational setting. Each

may consider the other program to be financially

responsible. 

• Service authorization procedures (Medicaid,

managed care, and special education plans) are

too complicated, too time-consuming, and too

delayed. Services may be inappropriately denied

as not “medically necessary.”

• Insurance personnel responsible for authorizations

may not understand mental retardation or other

conditions associated with mental retardation.

E – 5
E – 6

• Routine administrative practices may be

inappropriate for an individual with mental

retardation. For example, the individual may not

understand a mail notice to choose a primary care

physician, and may be automatically assigned to a

physician who does not understand the

individual’s needs. 

Growing Up and Living with Disabilities

Age-Appropriate Health Services

“Just because people get older doesn’t mean their

disabilities disappear....” (Self-advocate) 

“Many [persons] with cognitive limitations become

parents and fall through the cracks [as they focus on

getting health care for their own child]....There is a need

for specific programs...with a commitment to help these

families....” (Health care professional)

• Pediatricians and pediatric dentists have

historically continued to provide care for

individuals after childhood; however, improved

lifespans mean that these individuals need

practitioners knowledgeable in primary adult care,

in specialist care for conditions found in other

adult populations, such as obesity and

cardiovascular conditions, and in conditions

occurring at elevated rates in certain individuals

with mental retardation (e.g., dementia associated

with premature aging). 

• Age-related conditions, such as changes in

medication needs, mobility, or arthritis, may be

seen as part of an individual’s disability and may

be inadequately recognized or treated. 

• Existing service models for end-of-life conditions,

such as hospice or institutional care for

Alzheimer’s disease, may not be appropriate or

acceptable for an individual and his or her family.

Continuity of Health Services Throughout Life

“...It is so hard to have your head in the

trenches...day to day...and still be able to look ahead and

find possibilities for the future....” (Family member)

• The extent of Medicaid coverage may depend on

age, not medical need, of an individual. For

example, coverage for home care may end at age

21 for a ventilator-dependent individual.

• Coordination among medical specialists and with

early intervention services for care of a medically

complex person may work during the first years of

life; however, when the medical condition is

stabilized and the person’s needs become more

intensive and diverse as he or she grows, finding

and coordinating multiple services may be left to

the family.

• Transition from adolescent to adult care is

especially complex.

• Care for an individual with multiple conditions

may be fragmented. For example, different

specialists may be managing an individual’s

seizures, gastrointestinal disorder, and abnormal

destructive behaviors, resulting in adverse drug

interactions or chronic drug toxicity. Age-related

changes in health care needs may further

complicate care if more or different providers are

needed.

• There are severe shortages in care coordination

services. 

Healthy Lifestyles

Promoting Health: Providers

“To prevent injuries, we need the same precautions as

for the elderly who are less coordinated, less stable, less

able to hear and see well, and less able to make quick

decisions; health conditions [associated with employment]

are not monitored, and it is hard for the individual to

associate it to their job site or activity....” (Health care

professional)

“Current [substance abuse] intervention and

treatment programs are completely unsuitable for

[individuals with mental retardation] since they often

require communication and discussion. However,

opportunities for abusing substances are abundant. They

become a form of release and self-medication when there

are no more suitable outlets....” (Health care

professional)
E – 7

• Providers may not screen individuals with mental

retardation for dietary and nutritional status,

exercise habits, oral disease (e.g., periodontal

disease), tobacco and alcohol use, depression and

other mental illness, cancer (mammograms, Pap

smears, prostate cancer), abuse or neglect,

domestic violence, and occupational hazards. 

• Providers may not have the specialized training

and equipment needed to provide preventive

interventions, such as oral prophylaxis and

applications of protective materials to tooth

surfaces. Providers may overlook the need for

immunizations and opportunities to educate

individuals and families in health-promoting

behaviors such as exercise.

• High rates of turnover in personal care attendants

may mean that an attendant does not know the

medical history and concerns of an individual

with mental retardation. Thus, the attendant

may not be able to help either the individual or

the provider in communications, maintaining

needed courses of treatment, recognizing

symptoms that need attention from a health care

professional, and other matters. 

• Gaps in, or unavailability of, medical records of

an individual with mental retardation may

compromise continuity of health care services.

Promoting Health: Individuals and Caregivers 

“I would like to see programs for the whole body....”

(Self-advocate)

“People with disabilities need help to know about

diet....” (Self-advocate)

• Training and education in self-care may not be

offered to individuals with mental retardation.

Opportunities to provide such training and

education in community settings, such as special

education programs, may be overlooked.

• Preventive interventions may not be designed to

enable an individual to understand or participate

in health-promoting behaviors, such as

management of diabetes and routine oral hygiene.

• Personal care attendants may not be trained and

may not help an individual maintain appropriate

diet and nutrition, regular exercise, or good oral

hygiene, and avoid tobacco use and other health

risks. Attendants may allow or unintentionally

encourage unhealthy lifestyles by their own

example if they are not knowledgeable about

health promotion. 

• Job coaches and employment counselors may not

be trained to identify and advocate against unsafe

workplace conditions, such as exposure to toxic

substances, repetitive motion injuries, and others.

Occupational hazards may be viewed as a lower

priority than securing employment for an

individual with mental retardation.

November 2001

F – 1

Welcome and Opening Comments

Surgeon General David Satcher, M.D., Ph.D., 

U.S. Department of Health and Human Services

Duane Alexander, M.D., Director, 

National Institute of Child Health and Human

Development, National Institutes of Health (NIH)

Ms. Loretta Claiborne, Self-Advocate

Panel Moderators, NIH Site

Elin Cortijo-Doval, M.Ed.

George Jesien, Ph.D.

Deborah Spitalnik, Ph.D.

Sheryl White-Scott, M.D.

Appendix F: Surgeon General’s Listening Session on

Health Disparities and Mental Retardation

October 10, 2001

Speakers

Civitan International Research Center, University

of Alabama at Birmingham

Judy Barclay

Matthew Foster

Alvin Garvin

Wendy Hardy

Elouise Woods

Patsy Wright

Oregon Institute on Disability & Development,

Oregon Health & Science University, Portland,

Oregon

Judy Cunio

Michael Geheb

Trent Minor

Julie Quaid

Sidney Stuller

Sharon Turner

Judy Wiley

Eunice Kennedy Shriver Center, University of

Massachusetts Medical School, Worcester,

Massachusetts*

Ana Arango

Sandy Blanes

Billie Chan

David Coulter

Kim Daniels

Yvette Johnson

Ann Ligums

John Morgan

Reginald Raphael

Cindy Smith

Charlotte Spinkston

Bersford Wilson

Participating Sites

* Due to technical difficulties, the speakers at the Massachusetts site were unable to participate at the time of the actual

Listening Session. However, their recorded remarks have been added to the archived videocast of the session and are

part of the official record. The entire Listening Session can be viewed at the following site: http://videocast.nih.gov

/PastEvents.asp?c=4.
F – 2

Waisman Center, University of Wisconsin,

Madison, Wisconsin

Cindy Bentley

Barbara Katz

Lynne Schauls

Bill Schwab

Nancy Shook

Jayn Wittenmyer

National Institutes of Health, Bethesda, Maryland

Sally Atwater

Sue Badeau

Renee Bedieux

Robert Bergner

Susan Clark

Jose Cordero

Roxanne Dryden-Edwards

Jackie Golden

Julie Hacker-Yannes

Katrina Johnson

Wanda Jones

Guy Leif

Maureen Mitchell

Liz Oppenheimer

Victor Robinson

Jamie Rutman

Tim Shriver

Irvin Silverman

Ginny Thornburgh



U.S. Department of Health and Human Services

Public Health Service

Office of the Surgeon General

February 2002