The creation of the National Family Caregiver Support Program (NFCSP) nearly two decades ago marked the first federal recognition of the central role families play in the provision of long-term services and supports (LTSS). In the field of aging and caregiving, the NFCSP, created in 2000 under the Older Americans Act (originally enacted in 1965), was a game changer. Why? Because the federal program made it possible for every state to address family-related matters that historically were thought to be too private for a public response.
Today, the NFCSP remains a key federal program that directly addresses the service and support needs of families in their caregiving role. The program provides information to caregivers about available services, assistance to caregivers in accessing supportive services, individual counseling, support groups and caregiver trainings, respite care, and supplemental services. The NFCSP has proven both cost-effective and successful at supporting family caregivers and the important work they do.
Family caregivers are crucial to both the health care and LTSS systems. An estimated 40 million family caregivers provide about $470 billion annually in unpaid care to their adult relatives and friends with limitations in daily activities. Yet in 2016, the NFCSP provided support services to only about 740,000 family caregivers nationwide. This was due, in large part, to inadequate funding, as the NFCSP that year had a budget of slightly over $150 million. While not all family caregivers need help, the NFCSP is not reaching many of those who need the program’s support.
In recent years, experts have called for increased funding for the NFCSP. A new report from the AARP Public Policy Institute confirms that need, showing how Older Americans Act funding, including funding for the NFCSP, has not kept pace with inflation and the demographic reality of an aging population.
Data confirm that NFCSP services help families continue in their caregiving roles. A recent NFCSP outcome evaluation, for example, shines a light on the importance of assessing and addressing the needs of family caregivers. Key among the evaluation’s findings are that NFCSP respite services are effective in reducing caregiver burden, and that other caregiver support services—including education and skills training, support groups and counseling— increase caregiver confidence. The findings also suggest that NFCSP services reduce burnout and help family members and close friends who take on a caregiving role to continue providing care for their loved one at home and in the community—an outcome that delays or prevents nursing home use and unnecessary hospitalizations.
The Family Caregiver Assessment Need
A key area in which the NFCSP can be more effective is by making family caregiver assessments standard practice. The outcome evaluation found that Area Agencies on Aging (AAAs) that examined the impact of caregiving in their assessment process were effective at targeting the family caregivers with the greatest caregiver burden. Yet while most (69%) AAAs already use a standardized assessment tool, only one-third (35%) use the information gained from it in this way—that is, to prioritize who receives caregiver support services.
Moving forward, the use of comprehensive, standardized assessment tools help ensure direct contact with the family caregiver—listening to their goals, needs, resources, and strengths. Such tools will also help service providers to better understand family needs and preferences, and to consistently address those needs to ensure that family caregivers most at-risk are being well served.
The NFCSP evaluation provides guidance in implementing a standardized assessment process, in addition to identifying priorities for increased funding and expanding support services. With additional funding, NFCSP services could serve as a key mechanism for disseminating evidence-based services and make them available, accessible, and affordable to the families who need them.
Moving Toward a Coordinated Policy Framework
Meanwhile, other positive family caregiving developments are occurring at the federal level that impact the NFCSP and its evolution. In the near future, the Administration for Community Living in the U.S. Department of Health and Human Services will be forming a federal Family Caregiving Advisory Council under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 (Public Law 115-119). Among other responsibilities, the Advisory Council will advise and provide recommendations to the Secretary of Health and Human Services on ways to improve coordination of services and activities across federal government programs to better recognize and support family caregivers. The development of a national caregiving strategy may be an opportunity to strengthen the NFCSP based on findings from the national evaluation.
In the meantime, we urge Congress to reauthorize the Older Americans Act, make assessment of family caregivers’ needs standard practice, and increase the authorized funding level for the NFCSP to provide meaningful and practical supports to the families who need information and support services. Families can ill afford to wait for help. Surely, we can do better.
Lynn Friss Feinberg, MSW, is a senior strategic policy advisor for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.