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Disability in America: Toward a National Agenda for Prevention
to accomplish much. As in other areas of disability prevention, success will depend on the whole of the effort—on the composition of services, on the availability and organization of services, on the contributions of formal and informal caregivers, and on much, much more. Thus the execution and integration of services are as important as the composition of the particular range of services provided.
This is not meant to minimize the importance of individual service elements. For most people, the range of available preventive services is deficient. For example, accumulating research evidence clearly demonstrates the significant impact that mental health has on functional status and on quality of life. Yet mental health services are not available to many people, or the types of services that are available are inconsistent with their needs because of insurance restrictions or other factors. Similarly, many of the environmental modifications known to reduce the risk of falls and other injuries in the home do not qualify for reimbursement. More examples could be cited, but each has a common thread. Most of the needs of people with chronic disease fall outside the scope of a health care system oriented to the treatment of acute conditions.
Even with diagnostic-related groups, the Medicare system favors acute care treatment in hospitals. As Patricia P. Barry of the University of Miami School of Medicine has explained, "[P]rimary care practitioners struggle to receive adequate reimbursement for lengthy home visits, assessment, family counseling, and multidisciplinary teamwork, while their technologically oriented colleagues have no problem collecting for radiologic or laboratory studies, or invasive tests that may not only be uncomfortable but also pose risks to the patient" (Institute of Medicine, 1989b).
Today, much of the gap between needs and available services is being filled by informal caregivers. The committee recognizes the importance of personal responsibility in health care and of the contributions of family and friends in the provision of needed services; however, it also recognizes the dangers of abdicating total responsibility for care to individuals and informal caregivers, a situation that can result from current reimbursement systems that provide no other option.
The 1982 Long-Term Care Survey showed that approximately 2.2 million caregivers (age 14 or older) provided unpaid assistance to 1.6 million elderly people who required help with one or more basic life activities. The average age of the informal caregiver is 57; a quarter of these caregivers are between the ages of 65 and 74, and 10 percent are older than 75. Many of these caregivers make substantial commitments, which often preclude employment and reduce the time available for other responsibilities. Indeed, 80 percent of informal caregivers devote at least 4 hours a day, 7 days a week, to providing assistance (Stone et al., 1987).
Because of the post-World War II baby boom, the number of offspring available to provide care to parents will increase, but so will the number of