The State of America’s Direct Support Workforce Crisis 2022

The longstanding direct support workforce crisis, exacerbated by the COVID-19 pandemic, has led to closures of critically needed services and a denial of access to community-based supports.
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Capitol Correspondence - 07.07.20

ANCOR Joins Coalition Letter Supporting Funding for Lifespan Respite Care Program

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To support the well-being of family caregivers of individuals with disabilities, ANCOR joined 52 other organizations in a letter to the House Appropriations Committee supporting the Lifespan Respite Care Program run by the Administration for Community Living and Administration on Aging. As written in the letter:

“We are very appreciative of the increase provided in FY 2020 for the Lifespan Respite Care Program. To address the growing need to support family caregivers who are the linchpin of the nation’s long-term services and supports system, we are requesting $10 million in FY 2021. This program has received no additional funding from the recent emergency supplementals, yet Lifespan Respite grantees continue to respond to daily requests for respite and have created innovative and flexible new ways to meet caregiver needs during this pandemic.

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To maintain and expand support to isolated family caregivers in their networks, Lifespan Respite grantees and partners provide 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.

Fifty-three million family caregivers, up from 43.5 million just five years ago, 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 of adults provide $470 billion in uncompensated care annually. Researchers at Boston Children’s Hospital found that families caring for the most seriously ill children provide nearly $36 billion worth of care annually. Their associated foregone earnings were over $17 billion.

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.”