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Long-Term Care Policy: Lots of Smoke, Not Many Mirrors, and Little Progress

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... As I attempted to demonstrate in my earlier discussion of long-term care expenditure trends, and as noted by Robert Applebaum (1998) in his review of several books on long-term care in The Gerontologist, precious little momentum for long-term care change has been generated in most of the states over the past decade. We can be hopeful, however, because we do have more evidence in support of the cost-effectiveness of home-and community-based long-term care services than we had ten years ago. ...
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One of the greatest challenges of our society is the provision of humane and affordable services in ways that empower, rather than disempower, its aging members (Minkler, 1985, 1996). The concept of “consumer direction, ” being the exercise of choice and control, is derived from the independent-living movement of the disability community (e.g. Gilleard & Higgs, 1998). Adults with disabilities have long articulated and acted upon a moral vision that maximizes the rights of disabled people to define their own destinies. The factors discussed as having contributed to a delay of consumer direction in the aging community are ageism, a narrow concept of autonomy, the biomedicalization of aging services, and fiscal and bureaucratic constraints (Minkler, 1987, 1990, 1997). Conceptual frameworks based upon the disability model that support the concept of consumer direction for the aging community, and its applicability to home and community-based (HCB) long-term care systems, are discussed. The central and interrelated themes of broadening the concept of autonomy, examining ageist assumptions in social policies and practices, articulating a vision statement, validating caregiving, providing a variety of services that are flexible and accessible, and implementing systems and policy changes are presented as elements of an integrative model of consumer direction for an aging population.
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Although recent efforts have attempted to study how to improve the quality of in-home care, consumers'involvement in these efforts has been rare. Using two data collection approaches, a survey and in-depth case studies, this work assesses the consumer's perspective on in-home services. Findings show that although service recipients hesitated to provide feedback about the care received, they expressed their views on the quality of care when given the opportunity. In particular, consumers reported an intense desire to maintain autonomy and control over their lives and the services received. Efforts to incorporate the consumer's perspective into the quality assurance system are recommended.
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