Academic journal article Generations

Consumer-Directed Long-Term-Care Services: Evolving Perspectives and Alliances

Academic journal article Generations

Consumer-Directed Long-Term-Care Services: Evolving Perspectives and Alliances

Article excerpt

Young adults with physical disabilities, people of all ages with cognitive impairments, and older people with functional impairments share many of the same needs for services and adaptations. However, the professionals and advocates that have traditionally been aligned with each of these groups have different histories and styles of addressing those needs. They typically differ regarding what they mean when they refer to "consumer direction" and how consumer-directed services should be implemented. For purposes of this essay, consumer direction is defined as choice of services and provider as well as control over how services are provided.

THE INDEPENDENT LIVING MOVEMENT

The independent living movement began in the i96os on college campuses (Shapiro,1993). Young adults with physical disabilities and disabled veterans wanted to attend college but lacked accessible housing and needed services. Together, they began independent living programs, in 1962 at the University of Illinois and subsequently at the University of California's Berkeley campus. In 1972, disabled people established the first Center for Independent Living (CIL). It served a nonstudent population in Berkeley. Other early centers were in Boston, Massachusetts, and Houston, Texas. By 1986, there were 300 such centers serving 104,000 people, of whom approximately 20 percent were aged 60 or older (Varela, 1983). Independent living centers provide or facilitate services that "severely disabled individuals need to increase their self-determination and to minimize dependence on others" (Frieden, 1983). Some centers provide transitional or permanent housing for people with disabilities; others may provide nonresidential services. Almost all centers offer information on community resources, training in independent living skills, peer counseling, and advocacy or political action services.

The independent living and disability rights movements are intertwined. An early victory occurred in 1978 when protests by people with disabilities camped in the San Francisco regional offices of the U.S. Department of Health, Education and Welfare resulted in the department issuing long-delayed regulations for implementing provisions of the Rehabilitation Act, which assured access to all publicly funded programs (Shapiro, 1993.) The eventual success of these groups in gaining passage of the Americans with Disabilities Act is well known.

According to the ideology of the independent living and disability rights movements, it is environmental barriers and traditional modes of service delivery, not disability, that create dependency. Removing physical and social barriers to living a normal life is the appropriate solution, rather than changing the individual by providing, for example, more rehabilitation. In addition, the movements seek to empower people with disabilities and promote among them a new self-image-as a consumer of services and as a member of a disadvantaged minority, not as an object of charity or of obligation. From this new perspective, independence means taking control of one's life and making decisions for oneself. As Judy Heumann, one of the leaders of the movement, has said, "To us, independence does not mean doing thing physically alone. It means being able to make independent decisions. It is a mind process, not contingent on a `normar body" (Varela, 1983; see also Dejung,1983).

An important tenet of this philosophy is that the consumer must be in charge of the service provider in order that services not create dependency. The consumer must select the assistant or attendant and determine what services are provided. The consumer trains and supervises the attendant, and, to reinforce the consumer's authority, pays and, if necessary, fires the attendant. The attendant (who it is assumed must be a paid independent provider) "acts, in a sense, as an extension of the disabled person and follows the individual's directions as to how to meet his or her needs" (Batavia, Dejung, and McKnew, 1990). …

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