Consumer Choice in Long-Term Care

Consumer choice exists for goods and services in most markets and it can also play a role in long-term care. This concept is attractive to advocates for the rights of people with disabilities, since it enables disabled people themselves to make choices about the services they will receive. At the same time, consumer choice appeals to those who want greater efficiency in government programs, for the individuals whose lives are affected can be expected to choose more wisely than outsiders—such as government officials.

Although this simple concept is gaining in popularity, it is still controversial. Many people believe that older citizens or those with developmental disabilities are not able to make proper choices about their care. There also is concern among traditional home care agencies that disabled people will choose to pay family members, rather than outside agencies, with funds that become available under consumer choice programs.

Beginning in the early 1990s, the Robert Wood Johnson Foundation funded three national programs to test various ways of giving consumers more choice in the services they use and the people who provide them. The first awarded grants to states for programs that enabled people with developmental disabilities to make their own decisions about the care they receive. The second program provided poor elderly people with money to buy home care services, and gave them additional support with such tasks as financial planning and bookkeeping. The third program tested a wide range of approaches to giving people with disabilities greater choice in the kind of care they receive.

In this chapter of the Anthology, A. E. (Ted) Benjamin, the chair of the Department of Social Welfare at the University of California, Los Angeles, and the evaluator of one of the programs, and his colleague Rani Snyder, a research associate and doctoral candidate at UCLA, examine each of the programs and draw preliminary lessons from them.