New Study Examines Ten States' Caregiver Programs

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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:

  • Respite care and supplemental services (e.g., consumable supplies) are seen as the top service needs of family caregivers.
  • While the NFCSP fills a gap for low- to moderate-income family caregivers, the funding level of the National Family Caregiver Support Program is too low to meet the multifaceted needs of family caregivers. In FY 2002, the NFCSP was funded at $141.5 million, of which $128 million was released in grants to states to operate caregiver support programs.
  • In states which offer families a choice in hiring their own respite workers, most consumers choose relatives, friends or other persons they already know.
  • Uniform data collection on family caregivers, particularly outcome data, is lacking across states, making it difficult to measure the impact of services on families and ensure quality.
  • Medicaid officials recognized that they would like to help family caregivers but stringent rules largely keep them from doing so.
  • States differ in the design of their caregiver support services under the NFCSP and in integration of caregiver support into their home and community-based service system.


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.

Issues for the Future

From the lessons learned through the experiences of these ten states, key issues call for attention:

  • The shortage of direct care workers needs increased attention at federal and state levels.
  • Family support should be an explicit objective of all federal and state long-term care policies and programs. The funding level of the NFCSP must be raised to effect broad policy reform and systems change such that family caregivers are seen as true partners in long-term care.
  • To reduce fragmentation and increase quality of care, federal and state programs targeted to the elderly and to persons with disabilities need to be linked to those that target the family caregiver.
  • NFCSP reporting requirements need to address caregiver outcomes and uniform standards for caregiver assessment.
  • The NFCSP should build on state interest in exploring consumer direction in caregiver support programs and home and community-based services.
  • States should be given more opportunities to learn about promising practices.

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.


Winter 2003