Autism Speaks Applauds Reintroduction of Autism Family Caregivers Act

Today, the Autism Family Caregivers Act (H.R.2965/S.1333) was reintroduced in Congress to provide access to skills training for caregivers of young children with autism or other developmental disabilities or delays. The bipartisan bill would establish a five-year pilot program that would authorize grants to establish 25 caregiver skills training pilot sites in at least 15 states. These sites may include nonprofit organizations, community health centers and/or hospital systems that would provide caregivers with evidence-based strategies to improve social communication and behavioral outcomes of their children with autism and developmental disabilities or delays.

“We are grateful to U.S. Representatives Grace Meng (D-NY-6), Brian Fitzpatrick (R-PA-1), Henry Cuellar (D-TX-28) and Marc Molinaro (R-NY-19) as well as U.S. Senators Bob Menendez (D-NJ) and Susan Collins (R-ME) for introducing the Autism Family Caregivers Act, which recognizes the urgency of addressing disparities in access to autism services and meeting the needs of individuals across the spectrum, particularly in diverse communities across the country,” said Dr. Andy Shih, Chief Science Officer at Autism Speaks. “By providing caregivers with access to evidence-based resources, this legislation will help to create better outcomes for children with autism and other developmental disabilities in underserved communities while also supporting the wellbeing of those who care for them."

This legislation comes just a month after the Centers for Disease Control and Prevention (CDC) released an update on autism prevalence in the United States, reporting an increase in prevalence to 1 in 36 children, or just over 2.7% of 8-year-old children, diagnosed with autism spectrum disorder. The new report also, for the first time, revealed higher prevalence rates among Black non-Hispanic (BNH), Hispanic, and Asian or Pacific Islander (A/PI) children compared to White non-Hispanic (WNH) children. These findings reinforce the importance of developing innovative tools and services that meet the needs of individuals across the spectrum and their families, particularly in diverse communities.

Caregiver skills training teaches family caregivers how to use everyday routines and home activities to improve the mental and physical well-being of their children, by addressing communication skills, daily living skills, social engagement and behavior management. This evidence-based approach has been implemented around the globe as well as in underserved rural and urban areas in the United States and assists families who may struggle with access to adequate health services and social engagement opportunities.  

Autism Speaks has partnered with the World Health Organization to implement caregiver skills training programs in more than 30 countries with activities planned or completed in many other communities around the globe. Since 2018, caregiver skills training for caregivers of children with autism or other developmental disabilities and delays have been provided in underserved communities in New York City, Queens, Newark and rural Missouri. Autism Speaks has also partnered with the Color of Autism Foundation to bring this innovative practice to Detroit. Additional programs are being developed for caregivers in rural South Carolina, Pennsylvania, as well as the Ethiopian/Eritrean communities in the DC, Maryland and Virginia metro area.  

Additional organizations have joined us in endorsing the Autism Family Caregivers Act including the American Academy of Pediatrics, the Arc, Autism Society of America, Chinese American Association for Autistic Community, Community Inclusion & Development Alliance, Family Voices, National Association of Councils on Developmental Disabilities, and National Down Syndrome Society. Together, we call on our members of Congress to demonstrate their support by co-sponsoring this legislation.

View a copy of the bill.

View House press release.

Ask your member of Congress for their support via our action alert.