Congresswoman Grace Meng recently introduced a bipartisan bill that would provide access to caregiver skills training for family members who care for children with autism spectrum disorder or other developmental disabilities or delays.
Meng and her colleagues — Congress members Mike Doyle (D-PA), co-chair of the Congressional Autism Caucus, and Brian Fitzpatrick (R-PA) — introduced the Autism Family Caregivers Act of 2022 on Feb. 18, which is National Caregivers Day.
The Autism Family Caregivers Act would establish a five-year pilot program that would award grants to nonprofit organizations, community health centers, hospital systems or a consortium to provide evidence-based caregiver skills training to family caregivers of children with autism and other developmental disabilities or delays.
Caregiver skills training teaches family caregivers how to use everyday routines and home activities to improve the mental and physical well-being of children with autism and other developmental disabilities or delays. The training addresses communication skills, daily living skills, social engagement and behavior management. It also helps caregivers improve their own well-being.
The measure would also establish a Caregiver Skills Training National Technical Assistance and Evaluation Center to assist in the implementation of the caregiver skills training programs at the various sites; evaluate the effectiveness of such programs in improving the lives of children with autism and their family caregivers; and establish best practices.
“Every day, caregivers give endlessly their own time and energy to help our loved ones live more complete lives. With families spending more time at home during the COVID-19 pandemic, and as disruptions to in-person learning continue, access to tools and assistance for children with developmental disabilities is essential to support healthy development,” Meng said.
The lawmakers’ bill directly addresses the disparity in access to services for families of children with autism or other developmental disabilities or delays by providing an evidence-based way to support healthy development of young children with autism while empowering family caregivers with knowledge and skills, according to Meng.
“Giving caregivers a route to get the type of training and resources they need not only benefits the communities they serve but also the children’s lives they are in charge of enhancing,” Meng said.
Making sure that caregivers have the right training and skills to care for children with autism spectrum disorders and other developmental disabilities can go a long way to ensuring that every child with autism reaches their full potential, Doyle said.
As a member of the Congressional Autism Caucus, Fitzpatrick said he is “deeply committed to ensuring that individuals with autism spectrum disorders and developmental disabilities and their families have the support they need.”
“I am proud to join Reps. Meng and Doyle introduced the bipartisan Autism Family Caregivers Act, which will equip our hardworking caregivers with the training and tools that are essential to support healthy development in children with autism,” Fitzpatrick said.
Kaushal Challa, CEO of the Charles B. Wang Community Health Center in Flushing, applauded Meng’s Autism Family Caregivers Act, which he says will give caregivers the critical tools they need to significantly support their children’s social and emotional development.
“The Charles B. Wang Community Health Center was one of the first sites in the country to pilot the Caregiver Skills Training (CST) program to caregivers of children with autism and other developmental disabilities,” Challa said. “Results from the pilot study of New York City-based Chinese-speaking caregivers show that those who completed the program significantly increased their confidence and sense of empowerment in supporting their children with delays, and also reported improvements in their child’s behavior.”
Dr. Andy Shih, interim chief science officer at Autism Speaks, said they’re grateful to the lawmakers for introducing the bill.
“By providing caregivers with access to evidence-based resources, the Autism Family Caregivers Act will bring programs to underserved communities and help to create better outcomes for children with autism and other developmental disabilities while also making improvements in the well-being of caregivers,” Shih said.
Organizations that have endorsed the bill include Autism Speaks, Family Voices, National Council on Severe Autism, Autism Society of America, the Arc, National Association of Councils on Developmental Disabilities, American Academy of Pediatrics and National Down Syndrome Society.
