First 50-State Study Of Caregiver Support Services Released In Recognition Of National Family Caregivers Month
New Web-Based Interactive Database Will Help Providers and Consumers, Locate Services
SAN FRANCISCO —November 18, 2004—Family Caregiver Alliance, in collaboration with the National Conference of State Legislatures, has released The State of the States in Family Caregiver Support: A 50-State Study. The study—a two-year project—is the first to examine publicly funded caregiver support programs in all 50 states and the District of Columbia since the passage of the landmark National Family Caregiver Support Program (NFCSP) in 2000.
Caregiving can exact physical, emotional and financial costs. Caregiver support services, such as education and skills training, counseling and respite care, can help families and friends cope with the strain of caregiving, work and other responsibilities.
According to study director Lynn Friss Feinberg, Deputy Director of the National Center on Caregiving at Family Caregiver Alliance, “The report focuses attention on a growing issue that is an increasing reality of daily life for America’s families: how to support and sustain those who are the cornerstone of our long-term care system—the dedicated families and friends of older people and adults with disabilities. Our findings reveal progress: for the first time, every state now offers at least some caregiver support services funded by the NFCSP. Still, that support is inconsistent—it varies from state to state, and it is affected by limited funding levels.”
The need to strengthen and sustain families in their caregiving role is a central issue in our aging society. As more long-term care is provided at home and in the community rather than through institutions, reliance on family and informal caregivers grows. The majority (78%) of adults in the U.S. who receive long-term care at home get all their care exclusively from unpaid family and friends.
Donna Folkemer, Program Director at the National Conference of State Legislatures said, “This valuable study provides a comprehensive look at what states are able to offer to families. We are pleased that services are available to families in all the states and that states are involved in innovative activities to better respond to the needs of family caregivers.”
The report examines caregiver support provided through the Older Americans Act’s National Family Caregiver Support Program, Aged/Disabled Medicaid waiver programs, and state-funded programs. It highlights key findings, offers state-by-state profiles, pinpoints challenges, identifies issues for the future, and expands recognition of family caregiver needs as distinct from the needs of care receivers.
Through the study, the authors hope to inform policy discussions among federal and state leaders in caregiving and long-term care throughout the nation, and advance the public debate about the explicit provision of family support within the context of long-term care systems development.
As a companion piece, a new, interactive, state-by-state online database has also been developed, to help families and health and service providers find services in their area.
Key Findings & Conclusions
This report provides new insights into the ways states provide caregiver support services and their approaches to family caregiving issues in the context of home and community-based services (HCBS). As such, it provides a starting point to further examine and track state approaches to caregiver support as well as changes over time. The research indicates:
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There is both increasing availability of publicly funded caregiver support services, as well as great unevenness of services and service options for family caregivers across the states and within states. All states now provide some explicit caregiver support services as a result of the passage of the NFCSP in 2000. However, the availability of caregiver support services varies greatly across the U.S. due to differences in philosophy, program eligibility criteria, funding, and approaches to design and administration of services. This can result in inequities that limit caregiver choices and place more pressure on already strained caregiving families, compromising their abilities to care for their loved ones.
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The NFCSP is emerging as a key program to enhance the scope of caregiver support services and is fueling innovation in the states, but is inadequately funded. Although more than one in three (36%) states began providing support to caregivers of older people for the first time as a result of the federal funds through the NFCSP, the modest level of NFCSP funding to the states ($138.7 million in 2003) leaves gaps in caregiver support services that vary substantially from state to state. When compared to Aged/Disabled Medicaid waiver funds spent on respite care alone, the NFCSP funding appears even more limited.
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Most state programs report multiple sources of funding, with the majority of funding coming from four main sources: state general funds, NFCSP, Aged/Disabled Medicaid HCBS waivers, and client contributions. State program administrators use a range of definitions and data collection methods to track expenditures and caregiver service delivery.
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While there is variation among states and programs within states in their approach to assessing the needs and situation of the family or informal caregiver, there is broad recognition of the value of uniformly assessing caregiver needs and the importance of training and technical assistance in this area. Systematic assessment of the caregiver’s needs as distinct from, but related to, the needs of the older person or adult with disabilities, is central to systems change and to improving policy and practice in HCBS.
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States have mixed views on approaches to systems development, the importance of caregiver support services within HCBS, and integrating family caregiving programs into HCBS. The top barriers to coordinating caregiver support programs with other HCBS programs in the states are differing eligibility requirements and service complexity and fragmentation.
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State legislatures, recognizing family caregivers’ role, are enacting laws to fund caregiver support services, expand family and medical leave, and include family caregiving in state long-term care efforts.
Study Methods
States approach the design of home and community-based programs, including those to support caregivers, in different ways. Some states view caregiver support as a component of programs that serve frail elders or adults with disabilities. Others see caregiver support as a separate program with distinct eligibility criteria: they seek to ensure the explicit recognition of family and informal caregivers as individuals with rights to their own services and supports. Despite the importance of state-administered programs in the everyday lives of families, relatively little was known about how these programs operate in the 50 states or the differences in their philosophy or structure.
To explore the issue, this two-year study used the survey method, with written surveys and telephone interviews, to profile federal and state caregiver support programs in the 50 states and the District of Columbia. The authors obtained supplemental information from public documents, public agency and research databases, state websites and a literature review. They collected programmatic data from state program
administrators for fiscal year 2003 and collected or obtained fiscal and legislative data for fiscal years 2001-2003.
The research was designed to take a broad focus; it examined policy choices and approaches to caregiver support through state agencies responsible for the administration of the NFCSP, Aged/Disabled Medicaid HCBS waiver programs, and state-funded programs that have either a caregiver-specific focus or include a family caregiving component in their service package. A total of 148 out of 154 identified state programs in all 50 states and the District of Columbia, responded to the programmatic survey, representing a 96% response rate overall.
The authors of this comprehensive report are Lynn Friss Feinberg, Sandra L. Newman, Leslie Gray and Karen Kolb of the National Center on Caregiving at Family Caregiver Alliance; and Wendy Fox-Grage of the National Conference of State Legislatures. Funding was provided in part by a grant from the U.S. Administration on Aging.
The full report is available without charge on the Family Caregiver Alliance website at www.caregiver.org, along with the online database. The printed report is available for $60 from FCA Publication Orders, 180 Montgomery Street, Suite 180, San Francisco, CA 94104.
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Founded in 1977, and long recognized as a pioneer among caregiver organizations, Family Caregiver Alliance serves as a public voice for caregivers, operating programs at local, state and national levels. In 2001, FCA established the National Center on Caregiving to advance the development of high quality, cost-effective polices and programs for caregivers in every state in the country. FCA is also the lead agency and model for California’s statewide system of Caregiver Resource Centers. Website: www.caregiver.org .
The Forum for State Health Policy Leadership is a unit within the National Conference of State Legislatures whose mission is to provide objective information on critical and emerging issues and leadership development to legislators and staff. Established in 1995, the Forum carries out a variety of initiatives that serve targeted constituents within NCSL and respond to emerging issues and complex problems facing state legislatures. Website: www.ncsl.org .
NOTE: November is National Family Caregivers Month.</p?/ ?/
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