Academic journal article The Journal of Rehabilitation

Supporting Providers of In-Home Care: The Needs of Families with Relatives Who Are Disabled

Academic journal article The Journal of Rehabilitation

Supporting Providers of In-Home Care: The Needs of Families with Relatives Who Are Disabled

Article excerpt

The family is the primary care provider for individuals with developmental disabilities who reside in the community. Despite the value and cost-effectiveness of the natural support system of the family, federal and state policies and practices continue to discriminate in services and funding available to provide in-home care for family members who are developmentally disabled. For example, Braddock's (1987) studies illustrate that state departments of mental retardation and development disabilities utilize disproportionate resources for institutional care when compared to resources allocated to support families providing in-home care. In 1988, the national average annual case in public residential facilities for persons with mental retardation serving 16 or more residents was $54,516 (Lakin, et al. 1989). Braddock, Hemp, Fujira, Bachelder, and Mitchell (1990) projected that per person costs of institutional care will rise to $113,000 per year by the year 2000.

Other, more cost effective residential options include apartments, group homes, foster and attendant care. The professional literature is replete with documentation of the effects of financial hardship on families with a member who has a disability (Atkinson, Liem, & Liem, 1986; Krauss, 1986; Rayman, 1988; Sherman, 1988; Tausig, 1985; Yoydanoff, 1984), yet many families maintain these relatives at home. Professionals in rehabilitation and legislative policy makers are recognizing that family caregivers represent a tremendous financial resource and that without their dedication, a larger percentage of these persons would require institutionalization.

The purpose of the study was to explore in greater detail the financial resources and needs of families providing in-home care for relatives with disabilities. This study expands on such earlier efforts in that it includes all families providing in-home care in a specific geographic region, thus providing a sample with more general applicability for rehabilitation professionals.

Methods

During 1987-1990, families providing in-home care for relatives who have disabilities were questioned about their family financial status, the family's most urgent needs, and their perception of the family's ability to cope with those needs. Families were participating in a federally-funded demonstration program. The study took place in eight counties in rural Southeast Georgia which encompass 3,486 square miles. According to the 1990 U.S. Census, 140,245 people reside in this area giving a population density of 40 people per square mile.

In 1990 approximately 27 percent of the population was non-white, 11 percent was 65 years or older, and 31 percent was composed of children and adolescents. Of all the children attending public schools in this eight-county area, 19 percent are receiving special education services, far exceeding the state average of 12.3 percent. Eight percent of the population ages 18 through 64 receive long-term disability benefits. This is more than 1 out of every 12 adults in the area.

Data were collected by questionnaire administered by staff trained by the High Hope Foundation and researchers from Georgia Southern University. All families participating in the demonstration program completed the seven-page questionnaire. The data reported by the family described means of support for the person experiencing the disability as well as the means of support for the caregiver. This income, differentiated between "primary" and "secondary" sources, included income from regular and irregular employment, Aid to Families with Dependent Children (AFDC), Social Security Disability Income (SSDI), Social Security Insurance (SSI), retirement income, other income, food stamps, and court-directed child support. Gross annual income figures were compiled for both the person with the disability and the family. Family members were also asked to respond to items which asked how well the family is coping with the needs of the person experiencing the disability. …

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