Family Caregiver Alliance’s National Center on Caregiving has released a new study that explores the preliminary experiences of ten states grappling with a major national issue: how to support and sustain those who are the backbone of our long-term care system—the family and informal caregivers of the elderly and adults with disabilities.
States included in the report are Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas and Washington.
According to Josefina Carbonell, Assistant Secretary for Aging, the report “points to the central role of families in providing home- and community-based care for those with chronic health conditions. It also reveals the challenges ahead, as we look at the aging population and the rapidly growing numbers of family caregivers.”
The study, funded by the U.S. Administration on Aging, examines commonalities and differences among the states and highlights crosscutting themes in the implementation of the National Family Caregiver Support Program (NFCSP), which was included in the Older Americans Act Amendments of 2000.
“Policymakers increasingly recognize that family caregiving, which helps those with disabilities remain at home, can save public dollars that might otherwise be spent on nursing homes. The NFCSP provides the most significant legislative accomplishment to date on behalf of family caregivers,” said Lynn Friss Feinberg, Deputy Director of FCA’s National Center on Caregiving and an author of the study.
The report’s key findings include:
The states selected for the study represent about 37% of the U.S. population. Selection criteria included: largest populations of older persons; mix of urban and rural states; geographical representation of U.S. regions; populations with cultural diversity; and substantial as well as limited previous involvement in caregiver support services. The ten profiled states have diverse populations and varying philosophies, policies, administrative structures and program models of caregiver support.
To collect information for this study, FCA staff conducted extensive in-person interviews with state officials and major stakeholders in each selected state between March and July 2002. The study focused on caregiver services administered under the NFCSP, Medicaid home and community-based services waivers, state general funds and other state funding streams. Sixty-one interviews took place in the case study states; in total, 140 individuals contributed their views to the project and the report.
From the lessons learned through the experiences of these ten states, key issues call for attention:
The 237-page final report, Family Caregiver Support: Policies, Perceptions and Practices in 10 States Since Passage of the National Family Caregiver Support Program, is available for $40 from Family Caregiver Alliance, 785 Market St., Suite 750, San Francisco, CA 94103, or available without charge on the FCA website. For more information, contact FCA at (800) 445-8106.