Progress Review

Disability and Secondary Conditions

January 15, 2003

Assistant Secretary for Health Eve Slater chaired a focus area Progress Review on Disability and Secondary Conditions, the sixth in a series of assessments of Healthy People 2010. Dr. Slater noted that this was the first focus area in the review series in which the lead is shared by a non-Department of Health and Human Services (HHS) agency (i.e., the Department of Education [ED]), in clear recognition that the well-being of people with disabilities encompasses factors other than health status alone. The complete chapter text can be read online at www.healthypeople.gov/document/html/volume1/06disability.htm. The meeting agenda, data tables, charts, and definitions for the disability focus area are available on the National Center for Health Statistics (NCHS) Web site at www.cdc.gov/nchs/about/otheract/hpdata2010/fa6/disability.htm.

As Director of its National Center on Birth Defects and Developmental Disabilities, Jose Cordero represented the Centers for Disease Control and Prevention (CDC), the HHS agency co-lead for the focus area. He observed that people with disabilities face unique health risks, which may require not only medical care but also attention to maintaining a healthy lifestyle and social-emotional status and community commitment to overcoming environmental factors that hamper the full development of a person's potential. Representing ED as Director of its National Institute on Disability and Rehabilitation Research, Steven Tingus stressed the importance of employment to the health and well-being of people with disabilities. Without sufficient income, their health, housing, and transportation resources are severely limited. Participating in the review as representative of a non-lead agency, Roy Grizzard, Jr., Assistant Secretary for Disability Employment Policy in the Department of Labor, emphasized the crosscutting nature of problems associated with disability and, hence, the need for cooperation among the many Federal agencies which serve that community, without regard to issues of primacy and funding in particular areas. He noted, for example, that job training for people with disabilities serves little purpose if, once trained, they are not provided accessible transportation to workplaces, as well as assistive supports onsite.

Within the HHS Office of the Secretary, the Office on Disability is now the coordinator for these and other concerns that affect the lives of people with disabilities. The Director of that office, Margaret Giannini, discussed the President's New Freedom initiative, which will follow through on the Americans with Disabilities Act by promoting choices and supported living in accessible communities. In 2002, a report titled "Delivering on the Promise" was submitted to the President that included some 400 strategic solutions to problems affecting people with disabilities. (For additional information, go to www.hhs.gov/newfreedom/presidentrpt.html. ) Nine Federal agencies are committed to executing these solutions, around 100 of which are to be coordinated by the Office on Disability.

CDC staff reported that the Healthy People 2010 Disability and Secondary Conditions workgroup held a 2-day forum in Atlanta in September 2002, at which Dr. Giannini and Troy Justesen of the White House Domestic Council were keynote speakers. More than 150 participants identified actions to achieve the objectives for people with disabilities. Those present at the forum were challenged to (1) identify two Healthy People 2010 disability-related objectives consistent with their agency's mission, and (2) designate a liaison to the workgroup to collaborate on meeting these objectives.

Data Trends

In reporting on the latest data for objectives in the focus area, NCHS Director Edward Sondik noted that, in 2001, the American Indian/Alaska Native population group had the highest percentage of people with disabilities, followed by non-Hispanic blacks, and then non-Hispanic whites. Income levels strongly interact with disability: the percentage of those people with middle or high income who had disabilities in 2001 was approximately half that of the near poor and a third that of the poor. Among population groups for which reliable estimates are available (blacks, whites, and Hispanics), 2001 data show that children (aged 4 to 17) with disabilities were more than twice as likely to be sad, unhappy, or depressed as children without disabilities (Obj. 6-2). Family income levels play a role here, too, but there were relatively small differences between the percentages of poor children with disabilities (highest), near poor, and those from middle- to high-income families (lowest) who were sad, unhappy, or depressed in 2001. Among adults aged 18 or older, people with disabilities in five racial/ethnic groups (American Indian/Alaska Native, Asian or Pacific Islander, black, white, and Hispanic) were three to four times as likely as their counterparts without disabilities to have feelings that interfered with their life activities in 2001 (Obj. 6-3). Adults with disabilities in the five racial/ethnic groups reported lower levels of emotional well-being (as measured in terms of social participation and sufficient emotional support) in 2001 than did their counterparts without disabilities, but the differences within most of the groups were only about 10 to 15 percent (Objs. 6-4 and 6-5).

With the Nation moving away from congregate care, there has been a large decrease in recent years in the percentage of adults with disabilities who live in larger group homes (capacity 16 people or more): from 73 percent in 1982 to 20 percent in 2001 (Obj. 6-7). The percentage of children and youth (aged 16 to 21) with disabilities who spend most of their time in regular classroom settings increased every school year from 1985–1986 to 1998–1999, when it reached 47 percent. A sharp rise occurred in this percentage between school years 1992–1993 and 1993–1994 because of a favorable change in national policy (Obj. 6-9). In 2001, as compared with people without disabilities, people with disabilities were roughly equal in terms of the percentage of those under 65 years of age who had health insurance and slightly ahead in the percentage who had a usual source of health care. However, people with disabilities were significantly behind in terms of the percentage who did not smoke and the percentage who engaged in moderate physical activity. They also had higher rates of obesity. In general, disability in adults aged 65 and older was more prevalent in the southern United States in 2000.

Salient Challenges

• State boundary lines are often barriers to services for people with disabilities, inasmuch as they may be at some distance from providers in their own State and closer to, but ineligible for, services in a neighboring State.
• Women with disabilities receive mammograms at a rate lower than that for the total population.
• In part because they are often relegated to sedentary life styles, people with disabilities are at greater risk to smoke, to abuse alcohol, and to become overweight.
• The trend away from congregate care for people with disabilities generates a demand for increased community support and skilled personal assistants.

Current Strategies

• The President's HealthierUS initiative, in tandem with the HHS Secretary's prevention initiative, Steps to a HealthierUS, aims to improve the nutrition and physical activity level of all Americans, including those with disabilities.
• In implementing the New Freedom Initiative, the HHS Office on Disability is directing a major part of its efforts toward eliminating physical and attitudinal barriers that hinder people with disabilities from full integration into the life of their communities. These barriers occur in housing, transportation, health and social services, education, employment, and other spheres of daily living.
• HHS has provided $55 million for programs to enable the States to improve long-term care for people with disabilities, including $9 million to assist them in moving from congregate care facilities to assisted living status in their own homes.
• The HHS Administration on Aging is working with the Department of Transportation to improve access to various modes of transportation for people with disabilities, and it is cooperating with Easter Seals to enhance transportation choices of caregivers for people with disabilities.
• Healthy and Ready to Work is a program of the HHS Health Resources and Services Administration to provide support for demonstration projects, the goal of which is to ensure that youth with special healthcare needs will receive services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
• The President's Council on Physical Fitness and Sports will make the community of people with disabilities a target audience for its messages about the benefits of increased levels of physical activity.
• A CDC-supported project at Baylor University School of Medicine is under way to develop health-screening equipment especially adapted to the needs of people with disabilities.

Approaches for Consideration

Discussion participants offered the following suggestions for strategies to effect needed improvements:

• (Data) Provide for periodic community and State profiles of the health status of people with disabilities that will yield detailed data useful for shaping interventions at the national level.
• (Health Access and Screening) Seek to eliminate disparities in access to screening and other clinical preventive services that disproportionately affect people with disabilities.
• Explore ways to expand the production and distribution of screening and examination equipment for mammography and other purposes that is adapted to the varying physical limitations of people with disabilities.
• (Health Behaviors) Increase research to determine optimum exercise regimens for people with disabilities from various causes, such as stroke and other kinds of brain injury.
• Focus greater attention on reducing the increased behavioral risks (e.g., smoking, overweight, and alcohol abuse) that people with disabilities may experience.
• (Environmental Changes) Work to overcome attitudinal barriers on the part of healthcare providers, many of whom continue to equate disability with a permanent and irremediable state of illness that is accompanied by inevitably increased risks of adverse outcomes.
• Strive to create an integrated national plan applicable to all pertinent Federal agencies that will systematically address the special needs of people with disabilities as individuals across all life stages.

Cristina V. Beato, M.D.
Acting Assistant Secretary for Health

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