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Calls to Action

Why supporting caregivers should be a national priority

by Angela Lello, senior director for public policy at Autism Speaks
September 15, 2016

Family caregivers play a hugely important role in providing supports to individuals with autism throughout their lifetime. The primary source of all long-term care in America is unpaid, informal caregiving which is valued at over $500B annually.

Many family caregivers – including parents such as myself, siblings, grandparents and other family members – provide ongoing supervision and assistance with tasks of daily living such as feeding, bathing and navigating the world for individuals with autism. Caregivers provide support to children as well as adults. This support is almost never compensated. Most caregivers are women, but increasingly men are taking on caregiver roles for their loved ones with autism.

Caring for adults with autism can be daunting. Some individuals  need caregiving throughout their lifetime and services are not provided in a cohesive, purposely-built system, but rather exist in a patchwork of different programs and services that vary within and across states.

Many family caregivers must provide support without any assistance from public sources. The vast majority of supports are funded through Medicaid, which many people must wait to access because of years-long waiting lists.

Are you a caregiver? Learn more: Your Dollars@Work: Online Course for Caregivers of Adults with Autism!

In fact, the amount of care provided by informal family caregivers exceeded total Federal Medicaid expenditures in 2015 and only 1 in 1000 family caregivers receive the support they need.

Supports like respite can help family caregivers. Respite gives unpaid family caregivers short relief from the daily duties and ongoing responsibilities of caring for someone with autism. Other caregiving supports, such as attendant care, can help alleviate some of the physical burden associated with providing ongoing care to an individual with a disability. Other supports help individuals live more fulfilling lives and connect with their community while staying with family caregivers.

Without support, family caregivers can be emotionally and physically taxed and may become unable to continue providing care and the quality of everyone’s life can be negatively impacted.

Despite the significant role caregivers provide in supporting individuals with autism, there is no national strategy to assist or support them. That’s why we need to pass the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiver Act, H.R. 3099. The bill requires Congress to develop a national strategy to support family caregivers.

If you or someone you love is a caregiver, now is the time to make your voice heard. 

Add your name to the letter here and ask the Congress pass RAISE.