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 disabilities 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 impairments, and brain injuries can periodically or permanently 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.'' (#333) For example, the provision of occupational, 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 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 component 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 nutritional awareness, exercise and fitness, stress management, 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 programs 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. Whereas 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 Halamandaris 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 independence and self-care, and promotes family attachment 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) insurance 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. (#372)

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 reimbursement, 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 reimbursement 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 preventive 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 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 problems 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 service 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, including 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 professional 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 University 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 polypharmacy, and the need for hospitalizations, as well as measure cost effectiveness, quality of life, and level of adoptive functioning in this patient population." (#209)

Implementation

In all areas of disability—mental retardation, congenital birth defects, developmental disabilities, sensory impairments, chronic illness, and so on—testifiers encourage 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 education about serving persons with disabilities so as to improve the delivery of health care services 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 "common public constituency" that works to develop a statewide conference on prevention and eventually results in an implementation process involving commitments 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 muses of developmental disabilities will improve. (#326)

Irving 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 society 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 "flexible world for the many," where interdependence and independence are not in conflict. (#798)

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 services. 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