Members of Congress are calling on the Obama administration to take into account the concerns of self-advocates as the federal government works to implement new autism legislation.
In a letter this week to heads of the U.S. Department of Health and Human Services and the National Institutes of Health, lawmakers said priorities expressed by people with autism should be addressed in administering programs under the recently-passed Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES.
The law, which was signed in August, calls for $260 million annually through 2019 for everything from autism research and prevalence tracking to screening, professional training and other initiatives. It serves as a reauthorization of what was previously known as the Combating Autism Act.
“We urge you to implement the act in a manner that would address the concerns that we’ve heard and incorporate the recommendations of the self-advocacy community. Autistic individuals should have a voice in federal policy deliberations impacting their lives,” members of Congress wrote to HHS Secretary Sylvia Burwell and NIH Director Francis Collins.
The letter to the federal agencies was signed by U.S. Rep. Jan Schakowsky, D-Ill., Rep. Kathy Castor, D-Fla., Rep. Tammy Duckworth, D-Ill., Rep. Jackie Speier, D-Calif., and Rep. Paul Tonko, D-N.Y.
Specifically, the lawmakers are calling on officials to address the limited funding currently allocated toward research on services and the needs of adults on the spectrum as well as the minimal representation of people with autism on the Interagency Autism Coordinating Committee and in training programs designed to prepare students for careers in disability services.
Ari Ne’eman, who leads the Autistic Self Advocacy Network which has pushed for changes, said the new law offers an opportunity for health officials to “address long-standing inequities in federal autism policy.”