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7. People with Disabilities Between 20 and 40 million Americans live with physical disabilities. Figures vary depending on whether disabilities are classified by health condition, which means any condition or limitation impairing the normal functioning of an individual, or by work disability, which looks at conditions preventing an individual from taking, finding, or maintaining employment." (~223) In either case, the number of individuals directly affected by disabilities and those indirectly affected, such as family members, is sig- nificant enough that many testifiers find it meaningful to discuss a manifold of conditions and issues in terms of a single, aggregate population. For people concerned about disabilities, the year 2000 objectives-setting process offers two oppor- tunities. First, it provides a forum for those most directly concerned to discuss the implementation of goals to prevent disabilities in the first place. Michael Marge of Syracuse university says that "the 1990 Health Objectives for the Nation provided a blueprint for prevention that focused primarily on premature death with little attention to premature disability. (#433) In the Year 2000 Health Objec- tives, Marge and others hope to see an expanded focus on the prevention of disabilities. In total, 50 testifiers commented on prevention of disabilities, and their specific suggestions covered many of the priority objective areas, including mater- nal and infant health, alcohol and drug abuse, infec- tious diseases, unintentional injuries, violent and abusive behavior, nutrition, sexually transmitted diseases and AIDS, environmental health, occupa- tional health, mental health, and chronic diseases. The prevention of disabilities is addressed in this report primarily in the context of specific objective areas. Second, the Year 2000 Health Objectives process provides an opportunity to discuss health promotion and disease prevention activities, and barriers to the same, for those currently disabled. Health promotion and disease prevention mean something different to ~ population already affected by an ~unhealthy" condi- tion. As a result, several testifiers, including Jeffrey Brandon of the University of New Orleans, feel it is necessary to redefine health promotion to include activities and attitudes that aid an individual and family in achieving or maintaining optimal functional 64 Healthy People 2000: Citizens Chart the Course capability and self-dependence, regardless of whether or not they are "healthy." (~568J Defined this way, it becomes possible to talk about health promotion for people with disabilities. This chapter addresses the special health promotion and disease prevention needs of people with dis- abilities and the problems they face in gaining access to programs to meet those needs. Most of the testimony addresses prevention of secondary conse- quences due to disabling conditions, plus general health promotion and disease prevention activities for other conditions. HEALTH PROMOTION FOR PEOPLE WITH DISABILITIES A number of witnesses made the case that people with disabilities can benefit from health promotion as much as, or more than, others. A health promotion approach, they argued, can help people with dis- abilities improve the quality of their lives despite the physical problems they face. Health promotion, also is consistent with established rehabilitation practices. Robert Guthrie of the State University of New York at Buffalo points out that mental retardation and developmental disabilities are "life-long, non- lethal handicaps" for people affected by them. (~529) Spinal cord injuries, chronic diseases, sensory impair- ments, and brain injuries can periodically or per- manently disable individuals, while still allowing them to live long lives. Because these disabling conditions cannot be ~cured," argues Margaret West of the University of Washington, it is necessary to look at measures of health promotion and disease prevention that Relate to quality and satisfaction with life, ability to participate meaningfully in adult roles such as work, and accessibility, availability, and affordability of care.n (~333J For example, the provision of occupa- tional, physical, and speech or language services to infants in the first two years of life substantially influences developmental outcomes and can prevent further deteriorating conditions. Others underscore the significance of secondary prevention programs for those with disabilities, not only to enable the disabled to overcome social and environmental barriers to full social participation, but also to provide training and support in maximizing

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their potential for independent living and reducing the chance of secondary disability. These needs, argues Brandon, are quite suited to health promotion activities. In fact, he says, rehabilitation parallels wellness programming in many respects. Health promotion, he argues, takes a holistic approach to health that encompasses more than just physical wellness. Similarly, rehabilitation provides patients with physical, emotional, and social support activities. Since traditional rehabilitation includes an emphasis on self-responsibility, health promotion could be incorporated as an additional com- ponent within this area. Depending upon the needs of the client, specific health promotion activities also may be incorporated into his or her rehabilitation plan. Stress management, for instance, may be recommended for chronic pain sufferers, while exercise may be recommended to increase muscle strength or to help relieve anxiety or depression.2 (~568) Health promotion programs in areas such as nutri- tionai awareness, exercise and fitness, stress manage- ment, and alcohol and drug abuse prevention, "are of much, if not even greater, relevance" to the disabled population, Brandon argues, precisely because of their mental or physical disabilities. (#568) ACCESS TO HEALTH SERVICES Despite their need for health promotion and disease prevention, people with disabilities face numerous problems gaining access to health promotion pro- grams and preventive services. The barriers, the testifiers point out, are financial, social, physical, and logistical. Linda Henry, representing the National Association for Home Care, points out that advances in medical technology over the past century have not been matched by similar advances in health policy. Where- as technology now allows many ill children to live into adulthood, there are significant barriers to enabling these children to live and grow in a family and community environment. Quoting Val Halaman- daris of the National Association for Home Care, Henry writes: Ten million fragile and disabled children and their families struggle to find a quality of life that maximizes their potential, supports indepen- dence and self-care, and promotes family attach ment and integrity. Unfortunately, they often struggle in isolation, remaining in hospitals or institutions because changes in policy have not kept up with changes in technology. (#372) The largest barrier that Henry sees to community health care for chronically ill children is financial reimbursement. Others express similar difficulties for other disabled groups. Examples include (1) insu- rance policies with riders that exclude coverage of preexisting conditions and their resulting medical problems; (2) drugs, wheelchairs, special appliances, special foods, and formulas that are not covered if used on an outpatient basis; and (3) services such as home nursing, social work services, and physical or occupational therapy that either are not reimbursed or are covered only on a short-term or intermittent basis. f#3 72) Alfred Tallia, Debbie Spitalnik, and Robert Like of the University of Medicine and Dentistry of New Jersey say that the inadequacy of the level of Medicaid reimburse- ment, or the complete absence of reimbursement for medical services is extensively cited as a major, if not the major, disincentive in providing preventive health care to the chronically disabled population. The inadequate Medicaid reim- bursement limits accessibility of services to clients as few providers can deliver services and products under this type of system. (#209) The picture of health care coverage for those with disabilities is especially grim, notes Ann Zuzich of Wayne State University. In the United States, one out of five disabled adults has no health insurance and is ineligible for Medicaid or Medicare, she says. Many are denied insurance because they are not poor enough for public programs or because preexisting conditions prevent them from using private programs. When coverage is available, it is difficult to know what services are covered. Zuzich says that delays in processing papers for Medicaid recipients often deny essential equipment for long periods. For children, these delays can increase the disability. Home care services are more difficult to obtain than the same services in an institution. (~727) In addition to financial barriers to adequate pre- ventive services, the disabled population also faces additional difficulties in obtaining quality health care. Institutional living, argues the Association for Retarded Citizens of the United States, compounds People with Disabilities 65

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health problems for the retarded largely due to lack of qualified medical and support staff trained to apply appropriate health promotion and disease prevention approaches for people who have multiple severe disabilities. (#048) In the community, disabilities can impede individuals from gaining access to existing services. People with disabilities have special prob- lems with inconvenient locations and communication with providers, according to Tallia and his colleagues. (#209) Tallia, Spitalnik, and Like say that to provide adequate health care to a community's disabled population, a systematic and comprehensive network of health care services must be established. They cite Allen Crocker of Children's Hospital Medical Center in Boston, who offers the following criteria for comprehensive sentence to this community: 1. A medical home where an individual's records, needs, and idiosyncrasies are known by a provider population that is responsive to his or her needs 2. A primary health care provider who takes longitudinal responsibility for individual needs, includ- ing prevention These elements, they say, "must occur in the context of a comprehensive network of other health care elements. Such a community-oriented, primary care model also should include access to trauma centers, regional rehabilitation centers, follow-up programs, clinics that include interdisciplinary profes- sional coordination, (e.g., nutritionists and physical therapists), and so on. One trial program built on this model is now being implemented with help from the Robert Wood Johnson Foundation at the Univer- sity of Medicine and Dentistry of New Jersey. In addition to providing primary care services to a disabled population, this program is undertaking some measurement and evaluation activities. According to Tallia, Spitalnik, and Like, "This project will use health status program measures and volume measures to evaluate wellness, morbidity, reliance on polyphar- mapy, and the need for hospitalizations, as well as measure cost effectiveness, quality of life, and level of adoptive functioning in this patient population. (#209) 66 Healthy People 2000: Citizens Chart the Course IMPLEMENTATION In all areas of disabili~mental retardation, congenital birth defects, developmental disabilities, sensory impairments, chronic illness, and so on-testifiers en- courage increased research into the unknown causes of disabilities and continued focus on the prevention of disabilities. They also propose better injury and disability reporting mechanisms, better financial access to preventive services, and improved physician educa- tion about serving persons with disabilities so as to improve the delivery of health care senaces to them. Finally, they call upon the nondisabled population to recognize that many disabilities would not be disabling for individuals in the context of a supportive and accessible social and economic environment. According to some testifiers, once there is broad- based recognition that the problems of disability are not essentially medical, the necessary community-wide endorsement of disability prevention activities and programs for persons with disabilities will be possible. Allen Crocker points out 15 to 20 states that now have developmental disabilities prevention plans Of some maturity" and argues that through such plans the prevention of developmental disabilities "can be expedited within the policy resolves of individual states." Most plans, he observes, start with a "com- mon public constituency" that works to develop a statewide conference on prevention and eventually results in an implementation process involving com- mitments from a wide range of public and private groups. Crocker argues that with a state prevention plan the chances of funding prevention research projects and understanding the causes of developmen- tal disabilities will improve. (#326) I'ving Zola of Brandeis University makes perhaps the most fundamental recommendation for health policy directed toward those with disabilities. He contends that the development of effective health policies for the disabled requires reexamination of many basic values by which every member of societr lives. Instead of building systems of employment, transportation, and health care that "break the rules of order for a few," and thus undermine human interdependence, policies must begin to look at designing a Tremble world for the many, where interdependence and independence are not in conflict. (#798)

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REFERENCES 1. National Council on the Handicapped: Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities. Washington, D.C.: U.S. Government Printing Office, February 1986 2. Brandon JE: Health promotion and wellness in rehabilitation sentences. J Rehab 51~4~:54-58, 1985 TESTIFIERS CITED IN CHAPTER 7 048 Davis, Sharon; Association for Retarded Citizens of the United States 209 Tallia, Alfred, Spitalnik, Debbie, and Like, Robert; University of Medicine and Dentistry of New Jersey 223 Waldrep, Kent; Kent Waldrep National Paralysis Foundation (Dallas) 326 Crocker, Allen; Children's Hospital (Boston) 333 West, Margaret; University of Washington 372 Henry, Linda; Children's Hospital (Denver) 433 Marge, Michael; Syracuse University 529 Guthrie, Robert; State University of New York at Buffalo 568 Brandon, Jeffrey; University of New Orleans 727 Zuzich, Ann; Wayne State University 798 Zola, Irving; Brandeis University People with Disabilities 67