“Individuals and their families should be equal partners [with providers] in making health care decisions….”
*Statements quoted in the Blueprint were made by Conference participants.
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 ever-growing 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
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 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 has been used in the Surgeon General’s effort on health disparities and mental retardation.
Providers or health care providers
Providers or health care providers refers to physicians, dentists, nurses, physician assistants, dental hygienists, physical/occupational/speech-language 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.
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 self-advocates, 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
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 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://www.ninds.nih.gov/news_and_events/proceedings/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.