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Calls to Action

Autism Speaks encourages Congress to support family caregivers

November 05, 2015


Autism Speaks is joining the celebration of the nation’s 90 million family caregivers this November for National Family Caregivers Month. National Family Caregivers Month recognizes and celebrates the individuals who provide care to their loved ones every day- helping them maintain their independence and quality of life. 

“For centuries, we have been driven by the belief that we all have certain obligations to one another. Every day, caregivers across our country answer this call and lift up the lives of loved ones who need additional support” said President Obama in this year's Presidential Proclamation on National Family Caregivers Month.

Family caregivers are an extremely important source of support for individuals with autism.  Many people do not think of themselves as a “caregiver,” but assisting in routine activities or arranging services are tasks that family caregivers assist with on a daily basis. Through the support of family caregivers, individuals with autism are enabled to live at home and participate in their community.

In Autism Speaks’ National Housing and Residential Supports Survey, caregivers indicated widely that supporting a person with autism is primarily a full-time job. The overwhelming majority of caregivers reported that the individual with autism experiences medical conditions other than autism. Although caring for loved ones is a rewarding task, family caregivers face physical, emotional and financial challenges. Long-term care can be expensive over a lifespan. Caregivers help keep healthcare costs down while providing the personal care that many facilities and services cannot. 

In March 2015, a group congressmen and women launched the Bipartisan Congressional Assisting Caregivers Today (ACT) Caucus. The ACT Caucus aims to bring greater visibility to the value of, and need to support, family caregivers and the need for solutions. The caucus aims to inform members of Congress about these issues and raise its importance. Today, Congress is considering legislation that would help support family caregivers across the nation.

Autism Speaks urges Congress to enact the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiver Act, H.R. 3099 in the House and S. 1719 in the Senate. This bill would require Congress to develop a national strategy to support family caregivers. The strategy would identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers.

To build support for the RAISE Act and family caregivers during National Family Caregivers Month, share your caregiving story with us on social media using the hashtag #iheartcaregivers. To thank the members of the ACT Caucus for raising their voices for family caregivers use the hashtag #ACTCaucus.

Autism Speaks focuses on the lifelong needs of people with autism, including support for caregivers. Family caregivers, especially parents and siblings, require support and resources to assist in caring for their loved ones with autism. Many family caregivers do not receive training and other assistance to help provide care and have difficulty locating and coordinating the fragmented services.

Autism Speaks and the Autistic Global Initiative have also partnered with the Houlton Institute to make a first-of-its-kind online course titled Building Independence for Life Training (BILTTM). The course provides best and evidence-based practices for those who support the daily-living needs of transition-aged students, young adults, and adults with autism and related disabilities. Because it is online, the course is flexible and can meet many needs.

Click here to participate in the Self-Paced Online Course for Parents & Direct-Support Providers.

To get involved with Autism Speaks advocacy efforts sign up for Autism Votes HERE and follow us on at @AutismVotes.