Wed Jul 17 2019
Amy Hewitt prepares to testify before Congress.

On June 25, ICI director Amy Hewitt testified in Washington, DC before the U.S. House Committee on Energy & Commerce’s Subcommittee on Health, urging Congress to reauthorize the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act before the law expires on September 30, 2019. In a hearing titled, “Reauthorizing Vital Health Programs for American Families,” she explained to members of Congress how the Autism CARES Act has provided the opportunity to answer critical questions and address disparities in the area of autism through research, public health surveillance, and workforce development.

Hewitt told members that the Autism CARES Act has helped build critical infrastructure that has furthered our understanding of autism. Several CARES projects are at ICI, including the Autism and Developmental Disabilities Monitoring Network, “Learn the Signs, Act Early,” and the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) Program. Hewitt serves as the President of the Board of Directors for the Association of University Centers on Disabilities, a network that includes all 52 LEND centers, as well as the CARES-funded national resource center that provides technical assistance to LENDs, Developmental Behavioral Pediatrics Training Programs, and the nationwide presence of the “Act Early” Ambassadors of the Centers for Disease Control and Prevention (CDC).

Hewitt also personalized her remarks, noting that she trained as a LEND Fellow decades ago and now has a family member with autism. She pointed out that, thanks in part to data gathered through CARES funding, we now know that autism affects 1 in 59 children and about 1 in 6 children has a developmental disability. “This means that it is highly likely that everyone in this room knows someone that has a family member with autism or another developmental disability,” Hewitt reminded the members of Congress. “While I am here in my professional role as a researcher and professor, I understand the importance of these issues as a family member, too. My brother-in-law, Nathan, is 45 years old and is autistic. He has lived with our family, in his own apartment in our home, for the past 25 years. He reminds me daily that children grow up and become working adults who want good lives in our communities. Nathan makes me aware that we have much to learn from autistic adults about the systems we create to support autistic people and that we need these systems of support across the lifespan.”