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Alan Cobo-Lewis is the parent of two young adults, one of whom has autism. He is an associate professor of psychology at the University of Maine, director of UMaine’s Center for Community Inclusion and Disability Studies, and co-director of NH-ME LEND. His opinions are his own.
Thank you to Sen. Susan Collins for co-sponsoring reauthorization of the Autism CARES Act. With her leadership at a critical time, Congress passed Autism CARES reauthorization, and it is headed to President Joe Biden’s desk for his signature.
The Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act is the most comprehensive federal law addressing the urgent needs of children, adolescents, and adults with autism. Autism CARES coordinates the response of the U.S. Department of Health and Human Services to the rising number of people diagnosed with autism (there are now one in 36 children in the United States diagnosed with autism); provides training, research, and data; and authorizes Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training programs.
There are two LEND programs operating in Maine: NH-ME LEND includes the University of Maine in a collaboration with Dartmouth Geisel School of Medicine and led by the University of New Hampshire Institute on Disability, and Maine LEND operates at University of New England.
Over its 17-year history, Autism CARES has resulted in substantial increase in our understanding of autism and related neurodevelopmental disabilities.
Autism CARES was in danger of expiring this year. There were genuine concerns about the extent to which the law supported the full range of autistic people, especially how well research included people with very high support needs. The broad coalition of people with a critical interest in autism — autistic people, family members, researchers, educators, and more — did not all agree on how the act should be amended.
The political environment in Washington, D.C., and the disagreement among some stakeholders created a very real danger that Autism CARES would expire, especially if stakeholders couldn’t work through their own differences.
On top of everything else, the original reauthorization bill was sponsored by Sen Robert Menendez, D-New Jersey, at a time when he was embroiled in a corruption trial. At this critical time, Sen Richard Luján, D-New Mexico, stepped in to sponsor Autism CARES reauthorization, and Collins stepped in to co-sponsor. But beyond co-sponsoring, Collins and her staff dug deep into the issues and helped craft a bill that addressed concerns about how research and training should support the full range of people with autism.
Autism CARES reauthorization will create two new Centers of Excellence in the National Institutes of Health, with activities to include the full range of needs for supports and services, including to both ensure safety and promote well-being. Autism CARES will also expand to consider the full age range of people with autism, and it will require the secretary of Health and Human Services to expand research and information-sharing to promote evidence-based practice.
There is a critical shortage of developmental-behavioral pediatricians, who care for children with complex neurodevelopmental and behavioral health conditions, and Autism CARES reauthorization will require the HHS secretary to consider expanding developmental-behavioral pediatrician training programs. It will also require an update to a report on transition of students with autism to adulthood, which a recent report to the Maine Legislature has recognized as a critical need.
Through their commitment, talent, and hard work, Collins and her staff modeled how policymaking should work. They made positive change, and I am grateful.