2002

U.S. Department of Health and Human Services
Public Health Service
Office of the Surgeon General

Rockville, MD

02NLM: WM 308 C645 2002

For Administrative Use
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.

02NLM: WM 308 C645 2002

Copyright Information:
Material contained in this report is in the public domain and may be used and reprinted without special permission; citation as to source, however, is appreciated.

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.

For additional single copies of this report, please contact the NICHD Information Resource Center at
P.O. Box 3006
Rockville, MD 20847
Phone: (800) 370-2943
Fax: (301) 984-1473
Web: http://nichd.nih.gov/publications/
Internet: NICHDClearinghouse@mail.nih.gov

Additional copies of the report also may be downloaded from the Surgeon General's website: www.surgeongeneral.gov/library

For sale by the Superintendent of Documents, U.S. Government Printing Office, Internet: www.bookstore.GPO.gov Phone: toll-free 1 (866) 512-1800; DC area (202) 512-1800 Fax: 1 (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001

Secretary of Health and Human Services

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.

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.

David Satcher, M.D., Ph.D.
Surgeon General
January 2002

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:

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.

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
• 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

The Surgeon General's Conference on Health Disparities and Mental Retardation was sponsored by the following Government agencies:

• 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

• Office of Disability

in collaboration with the following agencies:

• 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

• Office of the Assistant Secretary of Defense, Health Affairs, TRICARE

• 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.

"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.

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.

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.

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.

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.)

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.)

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

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 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).

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.