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Saturday, May 14, 2022

Autism Family Caregivers Act

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

A release from Senator Bob Menendez (D-NJ):

U.S. Senators Bob Menendez (D-N.J.) and Susan Collins (R-Maine) today introduced bipartisan, bicameral legislation that would provide autism families the support and training needed to provide quality caregiving to their children.

“Throughout my entire career, I have fought to ensure autistic individuals have the resources to live full and productive lives,” said Sen. Menendez. “I’m proud to lead this bipartisan bill that will deliver real results for children living with autism, their families, and caregivers. This is about dignity and compassion. And most of all, it’s about recognizing that we need to do more to help everyone reach their highest potential by providing the resources needed support that goal.”

“Millions of American families devote enormous time and attention to care for a loved one with autism and to ensure they have the same opportunities as their peers,” said Sen. Collins. “Our bipartisan legislation would support the efforts of these selfless caregivers to improve the wellbeing of children with autism. By providing families with the tools and resources they need to succeed, we can ensure that all children have the ability to reach their full potential and lead rich, fulfilling lives.”

New Jersey has the highest rate of autism, with one in 35 children identified with ASD. One in 44, 8-year-olds nationwide have ASD, according to the CDC.

The Autism Family Caregivers Act would establish a five-year caregiver skills pilot program to award grants to nonprofits, community health centers or hospitals to provide skills training to family caregivers of children with autism. The training will teach family caregivers how to use every day routines and home activities to improve the mental and physical well-being of such children and their caregivers. Caregivers will be trained to address communication skills, daily living skills, social engagement and behavior management. The grants will provide for 25 pilot programs in at least 15 states.

The National Association of Community Health Centers, New Jersey Hospital Association, American Academy of Pediatrics, Autism Society, The Arc and Autism Speaks support the senators’ legislation.


Congresswoman Grace Meng (D-N.Y.-06) is the lead sponsor of the bill in the House.

Sen. Menendez is the leading champion in Congress for individuals living with autism and their families. The Senator’s Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act of 2019 was passed and signed into law. The bipartisan bill, which builds upon the 2014 Menendez-authored law, shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with ASD and other developmental disabilities. The 2019 law also considers the needs of individuals with ASD well into adulthood and “across [their] lifetime.” The Senator was also one of the original authors of the Autism CARES Act of 2006.