Consumer Directed Care

The underpinnings of consumer-directed care can be found in the independent living movement that started in the 1970s, which was led by persons with disabilities who demanded their rights to live independently and participate fully in mainstream society. The idea behind this model is that persons with disabilities are hindered or impaired by barriers in their environment rather than by their physical or cognitive disabilities. One such barrier has been a lack of appropriate long-term care services mostly in the form of personal assistance services (Litvak, Zukas, and Heumann; Batavia, DeJong, and McKnew).

Consumer-directed care has been much slower in developing in the field of aging services, only gaining prominence during the 1990s. A 1996 survey of state administrators found 103 consumer-directed care programs throughout the United States (Lagoyda et al.). In some states (such as Oregon, California, Maine, and Wisconsin), these programs have been well-established parts of the long-term care system; however, in other states (such as Arkansas, New Jersey, and Ohio), these programs are relatively new or still under development.

In the movement toward increased consumer choice and control, disability communities (those with physical disabilities, cognitive and developmental disabilities, and psychiatric disabilities) have taken a much broader approach, emphasizing self-determination—individuals' overall control over their lives and ability to participate fully in society. However, in the aging community, the focus has been limited to consumer direction of long-term care services. And while in the disability communities consumers have led the movement toward self-determination and self-direction, in the field of aging services, the impetus toward consumer direction has come largely from professionals.

Within the field of home care in general, there has been much movement toward consumer direction. During the 1980s and 1990s the Medicaid Personal Care Services Benefit Option, which offers more flexibility for consumer-directed care than traditional Medicaid home and community-based services waiver programs, expanded greatly as a source of funding for personal assistance services. As of 2000, more than thirty states participated in this program. Typically, however, the home services programs that offer the most flexibility and choice in their consumer-directed care options rely on state funds due to the more restrictive rules under Medicaid (Scala and Mayberry).

The 1990s saw increased commitment on the part of the federal government to explore consumer-directed care as a service option. The long-term care proposal developed in 1992 by the Clinton Administration Task Force on Health Care Reform included a consumer-directed option. With funding from the Administration on Aging and the Office of the Assistant Secretary for Planning and Evaluation, the National Council on the Aging, Inc., and the World Institute on Disability established the National Institute on Consumer-Directed Long-Term Services, which has helped to define the concept of consumer direction and that provides information and technical assistance to states about consumer-directed care. In addition, in the late 1990s, two major grant initiatives by the Robert Wood Johnson Foundation, the Cash and Counseling Demonstration Program (which is also supported by the Office of the Assistant Secretary for Planning and Evaluation) and the Independent Choices program, have examined consumer-directed care through various research and demonstration projects.