As part of its coalition work with the Consortium for Citizens with Disabilities (CCD), ANCOR joined 59 other health and disability organizations in a group letter asking Congress to fund the Lifespan Respite Care Program. ANCOR has long supported this program, which provides support through regular check-in phone calls, connections to food and basic supports, live Facebook events, online support groups, online activities to keep care recipients engaged, home-delivered or mailed care packages with activities for caregivers and care recipients, stress reduction and self-care webinars, and other virtual respite strategies.
As stated in the letter: “National, State and local surveys have shown respite to be among the most frequently requested services by family caregivers. Yet, 86 percent of the nation’s family caregivers of adults do not receive 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 as well as grandparents raising grandchildren and military caregivers, 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.
Lifespan Respite systems, which maximize existing resources, require that respite become more accessible and available to all family caregivers. As importantly, Lifespan Respite systems build respite capacity and improve quality by requiring states to focus on respite provider/volunteer training and recruitment, start-up of new respite services, and affordability issues for family caregivers who struggle financially, but are not eligible for any publicly funded respite services.”
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