each state has one program offering these services. Nonetheless, an estimated 3 million people who require the help of others in performing personal and household tasks are not receiving attendant-care services (World Institute on Disability, 1987a). The Study Group on State Medicaid Strategies estimated that 60 percent to 80 percent of long-term care services are provided by friends, neighbors, and relatives without payment (Meltzer, 1988). Given the strict eligibility requirements under public programs and the high-cost private insurance policies that cover these services, this heavy reliance on family and friends reflects, in part, necessity rather than choice.
Although it is not unreasonable to expect family members to contribute to the care of relatives, this option is not available to many people with disabling conditions. Moreover, the additional responsibilities of the caregiver have not received adequate attention. For example, an increasing number of households are providing care for elderly family members. The caregivers usually are middle-aged women, many of whom also have jobs and have primary responsibility for attending to the needs of their own families. A study of 150 Philadelphia families in which married women were providing care for their widowed mothers reported that half of the daughters were working. Half of those who were not working had quit their jobs to care for their mothers, and a quarter of those who were still employed contemplated quitting (Lewin, 1989). As the demands of caring for a chronically ill elderly adult or a relative with a disabling condition increase, the likelihood of institutionalization also increases.
Many people who do not receive attendant-care services are likely to end up in nursing homes, incurring costs that may greatly exceed those for care in the home. Federal and state governments pay for much of this bill; public expenditures account for more than 40 percent of nursing home payments. Public expenditures for in-home care are considerably smaller but still substantial, totaling about $2 billion, according to the World Institute on Disability (1987b). On the basis of its national study, the World Institute on Disability concluded that public funds expended for attendant-care services could be used more efficiently, resulting in improved services for a greater number of people in need and at least delaying institutionalization and its higher costs.
Recognition of this problem is growing. The Medicare Catastrophic Coverage Act paid for 38 days of home care and 80 hours of respite care for people who assist Medicare recipients in their homes. Strong opposition to the surtax designed to help finance these and other benefits led to the repeal of the act in late 1989, 16 months after its initial passage. Still continuing is a separate demonstration program to evaluate the effectiveness of respite care for people who attend to relatives with disabling conditions. The program is jointly funded by the federal government and participating states. In New Jersey, for example, the program provides up to $2,400 annually for visits by attendants or health care workers (Lewin, 1989).