Family caregivers provide 80 percent of long-term care needs in the U.S., but many need time away from that job so they can continue to care for their loved ones. Respite can provide short-term relief through several options, including a paid home care worker or providing temporary stays for patients at a residential care facility or adult day care center. Some families pick up the cost of such care out-of-pocket, but many must rely on state and community programs.
However, as states face tough budget decisions, such programs are increasingly on the chopping block.
“These services have just come under pretty serious attack at the state level,” said Jill Kagan, program director of the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center. “The current economic climate that we’re in and that every state is facing has made it really difficult to expand any services at all. This comes on top of the fact that there was not enough respite for family caregivers to begin with.”
States are facing the following proposed and recently enacted cuts, according to members of state respite coalitions and ARCH networks:
- Illinois: $76.3 million from community services for people with developmental disabilities, including defunding the University of Illinois-Chicago’s Developmental Family Clinics and a program that provides respite care for parents of children with developmental disabilities, plus trimming $56 million from group homes, day centers and employment programs.
- Tennessee: More than $182,000 cut from a variety of state programs, including the Family Support Program, which funds many different services for people with disabilities, including respite care.
- Rhode Island: A 25 percent cut to State Community Grants, which includes a $136,680 grant to the Catholic Diocese of Providence for a program providing respite to caregivers of the elderly.
- New Hampshire: Suspension of Alzheimer’s respite funds from the state budget.
- California: Proposed elimination of $2.9 million of state funding and $3.9 million in federal matching funds for the 11 statewide Caregiver Resource Centers, which provide services including respite care, to families and caregivers of adults with chronic and disabling health conditions.
Many experts believe reductions could have adverse consequences as the population ages and as more senior parents struggle to care for adult children with severe disabilities. They also point out that respite is cost-effective, since it helps keep patients out of more expensive institutional care.
Respite services are often hard to find and funded from a patchwork of sources at the federal, state and local level, as well as through private foundations. In 2006, Congress authorized the Lifespan Respite Care Program, a federal program to better coordinate and expand state-funded respite services in selected states. However, it wasn’t funded until 2009 and since then has struggled with a $2.5 million annual budget.
Elizabeth Weglein, a board member of the Maryland Respite Care Coalition and the governor’s chair for the Maryland Caregivers Support Coordinating Council, described respite as a “lynchpin to keep people at home and allow the system to work effectively.” Still, she said that it’s often difficult to demonstrate its effectiveness to budget makers since respite often occurs in people’s homes.
“It can be intangible, we can have letters of thanks from the various respite recipients, but when they’re looking at hard numbers at where we should slash, it’s easy to slash a respite program,” Weglein said.