Policy and Program Issues in Providing Personal Assistance Services

I. The Context of Personal Assistance and National Long Term Services Policy Government funded personal assistance service (PAS) programs exist in every state in the U.S., but serve only a small fraction of the estimated 9.6 million people who need the assistance of another person with basic personal maintenance, hygiene and household tasks. This includes 7.8 million non-institutionalized people (78% of whom receive services only from family and friends), 1.5 million people in nursing homes and . 3 million people in facilities for people with mental retardation (Bureau of the Census, 1990; Pepper Commission, 1991; Rutgers University Bureau of Economic Research & World institute on Disability, 1990; LaPlante, 1989; Kraus & Stoddard, 1989). Most receive PAS through informal supports: family, friends, and volunteers (Bureau of Economic Research & WID, 1990). People with some types of disabilities or inadequate informal supports have historically been served in nursing homes and other institutional facilities by medical professionals and paraprofessionals. Only in the last two decades have significant numbers of state government programs been developed specifically to provide PAS in homes and communities. The development of these services has been very uneven (Litvak, Heumann, & Zukas, 1987). Some states have restructured their long-term service delivery systems to include a strong component of community-based PAS, others rely primarily on institutional placement and informal supports. Many PAS programs retain elements of the medical model (DeJong & Wenker, 1979) which has structured this country's institutional service delivery system. PAS programs are often structured on the premise that most program recipients need to be "taken care of". This paternalism is often quite overt, particularly among programs which serve older people or people with cognitive disabilities (Kimmich, 1991). Doctors, nurses, case-managers or other professionals may be very involved, overseeing the provision of narrowly defined and often strictly rationed personal assistance services (Dejong, Batavia, & McKnew, 1992). There is little or no choice on the part of the consumer as to who will provide PAS or how it will be provided. Moreover, most PAS programs are part of "welfare" systems, and tend to limit eligibility for services to people with low incomes (Litvak & Kennedy, 1991 b). A few newer programs have developed largely in reaction to the-paternalistic model of service provision (Litvak, 1991). These programs attempt to minimize professional intervention, income restrictions, and work disincentives. They are designed to maximize consumer involvement and control in the delivery of PAS. States are currently faced with growing pressure to develop and expand a system of community based services. Between 1984 and 1988, average caseloads in existing PAS programs grew by over 10%, while costs grew at an even higher rate (Litvak and Kennedy, 1991b). A number of factors have contributed to this increasing demand. Institutions have become an expensive way of providing long term services. According to the Pepper Commission 1990), Medicaid nursing home expenditures now top $43.5 billion - over 80% of total long term care expenditures. The spiraling costs of health care have impacted the nursing home industry, increasing staffing and administrative costs. Institutions also face growing resistance from disability advocates who view institutional placement as a form of costly and dehumanizing incarceration, and describe community based PAS as a basic human and civil right (Degener, 1992; Ratzka, 1992). At least on an individual basis, home and community based personal assistance services offer a cost-effective alternative to institutions (Kotler, Wright, Jaskulski and Kreisberg, 1985). As medical technologies improve and the so-called "baby-boom" generation ages, growing numbers of people with disabilities are seeking long term services (U. …