Capitol Correspondence - 06.03.19

ANCOR Joins Letter to Senate Requesting Respite Funding

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As part of its coalition work, ANCOR joined 48 other associations in a letter expressing appreciation for recent funding increases for the Lifespan Respite Care Program, and requesting funding for the National Family Caregiver Support Program. Ensuring family caregivers get the assistance they need is an important issue in disability supports and supports for older Americans, as family caregivers help their loved ones stay in the community longer and age in place.

As written in the letter:

“Forty-three million family caregivers provide the vast majority of our nation’s long-term services and supports, permitting individuals of all ages to remain in their communities and avoid or delay more costly nursing home or foster care placements. AARP has estimated that family caregivers provide $470 billion in uncompensated care annually to adults, a staggering amount that rivals 2018 federal and state spending on Medicaid health services and long-term services and supports combined ($582 billion).

National, State and local surveys have shown respite to be among the most frequently requested services by family caregivers. Yet, 85 percent of the nation’s family caregivers of adults do not receive respite. Of the nearly half of family caregivers of adults (44%) identified in the National Study of Caregiving who were providing substantial help with health care, fewer than 17% used respite. The percentage is similar for parents of children with special needs. For family caregivers caring for someone with Alzheimer’s, adults with developmental disabilities, individuals with Multiple Sclerosis (MS), ALS, spinal cord or traumatic brain injury, rare diseases, and grandparents raising grandchildren, respite is especially elusive. Families caring for children, teens and adults with autism, physical disabilities or mental health conditions also can’t find or afford respite. A 2014 Rand Corporation report prepared for the Elizabeth Dole Foundation, found that limited respite services do not address the needs of military caregivers.


The National Family Caregiver Support Program (NFCSP) was the first federal program to recognize the needs of the nation’s family caregivers. NFCSP not only funds respite, but counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging and for individuals of any age with Alzheimer’s or other dementias. It also provides limited supports for grandparents and older relatives to provide care for children under age 18 and to older parents and relative caregivers of adults with disabilities. Despite recent positive outcomes for family caregivers reported in the NFCSP Outcome Evaluation from the Administration for Community Living, including the positive impact of respite and caregiver education on reducing caregiver burden, funding for NFCSP is not keeping up with the need.”