Recently, the Autism CARES Reauthorization Act of 2024 was introduced in Congress. This legislation originated in 2006 and authorizes funding for autism research and programming.
Profound Autism Alliance supports this reauthorization but strongly advocates for accountability and clarity, particularly related to the allocation of funding specific to people with profound autism who require 24/7 care.
And it's not just us who is saying this. Our advocacy aligns with the February 2024 GAO Report on Autism Research and Support Services: Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened, which states:
To promote the health and well-being of people with autism, the National Institutes of Health helps coordinate the activities of 18 federal agencies—including research on contributing factors and training on how to screen patients for autism.
NIH has followed several key practices to coordinate agency programs and activities but could do more. For example, NIH could track its progress toward goals to help agencies better allocate resources where they are most needed.