INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. A Review of State Initiatives in Consumer-Directed Long-Term Care


Starting with the independent living movement of the seventies, consumer direction has gained momentum among consumers, providers, state administrators, and policy makers. The advantages of consumer direction, which include increased satisfaction and quality of life for consumers, are become widely accepted. But while the number of state initiatives and consumer-directed programs has increased, they continue to be a small part of the long-term-care service system, and they remain varied in size, services offered, populations served, and the degree of control provided to consumers.

The differences among programs result at least partially from the range of options encompassed by consumer direction. By definition, consumer direction includes a continuum that ranges from consumers having a role in developing their plan of care to having complete control over services, choice of providers, and payment for services. Differences also stem from the varied levels of commitment and understanding by those who must implement these new programs and from the barriers to consumer direction inherent in the long-term-care service system. These barriers are primarily programmatic, regulatory, and attitudinal--the last of which is most common in aging services.

The National Council on the Aging (NCOA), a national membership organization, is among those who have worked to advance consumer direction. NCOA has developed a definition of consumer direction and criteria for assessing the level of consumer direction offered by programs, collected information on consumer-directed programs, and managed research and demonstration projects. This article reports on NCOA's two most recent efforts to advance consumer direction: findings from the Survey of State Administrators on Consumer-Directed Home and Community-Based Services, and the state initiatives affiliated with the Independent Choices Program.