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The Gerontologist 44:760-769 (2004)
© 2004 The Gerontological Society of America

A Study of 10 States Since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development

Lynn Friss Feinberg, MSW1, and Sandra L. Newman, MPH1

Correspondence: Address correspondence to Lynn Friss Feinberg, National Center on Caregiving, Family Caregiver Alliance, 180 Montgomery St., Suite 1100, San Francisco, CA 94104. E-mail: lfeinberg{at}caregiver.org

Purpose: This study describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of elderly adults and adults with disabilities; it focuses on the newly created National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. Design and Methods: Case studies were conducted, between March and July 2002, through in-person interviews with state officials and stakeholders in Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington. Results: States were in the start-up phase of implementing the National Family Caregiver Support Program and varied greatly in program design and integration of caregiver support into their home- and community-based care system. Viewing family caregivers as a client population was a paradigm shift for many state officials. Implications: Heavy reliance is currently placed on family and informal caregivers in home- and community-based care, without adequate support services. Family support should be an explicit goal of long-term-care system reform.

Key Words: State policy • Consumer-directed care • Home- and community-based care • Family care




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