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Wednesday, June 11, 2014

Autism CARES Advances

From Autism Speaks:
Legislation to renew and rename the Combating Autism Act was introduced in the Senate while a House version cleared committee and was sent to the House floor. Renamed Autism CARES (the Autism Collaboration, Accountability, Research, Education and Support Act), the legislation is now identical in both houses of Congress and would continue federal funding for autism research and other activites at an annual $260 million level for another five years.
The House Energy & Commerce Committee added the Senate changes to HR.4631, which had been named the Combating Autism Reauthorization Act (CARA) of 2014, and then sent the bill to the House floor for a vote.
“The bipartisan Autism CARES Act represents our strong commitment to continuing the groundbreaking work being done to address autism and build the foundation for these efforts for years to come,”said Menendez.
“I am particularly pleased this bill includes provisions based on my legislation, the AGE-IN Act, to better address the needs of individuals with autism as they grow into adulthood and no longer have the support of school-based programs," he said. "I’m optimistic the House will quickly adopt this language as they continue work on their bill so we can speak with one voice about the importance of reauthorizing these vital programs.”
Both the House and Senate bills would continue federal funding for five years, reconstitute the Interagency Autism Coordinating Council (IACC) and strengthen accountability over federal research funding to avoid any duplication of effort.
A "National Autism Spectrum Disorder Initiative" would be created by elevating an existing official at HHS to serve as the key point person coordinating the federal government's various autism efforts. In addition, a new study would be commissioned to focus on the needs of young adults and transitioning youth with an autism spectrum disorder or other developmental disability, as well as the challenges they face transitioning from school-based services to adult services.
From ASAN:
Regrettably, Autism Speaks and its allies actively lobbied against the inclusion of provisions expanding self-advocate representation in research, re-balancing autism research funding to support additional investments in services and adult issues, and requiring the LEND programs to attempt to recruit trainees on the autism spectrum and with other developmental disabilities. We find it profoundly disturbing that some in the autism community continue to lobby against any measures amplifying the voices of those most directly impacted by federal autism policy: autistic people ourselves.
ASAN calls upon our allies in the Autistic, autism and broader disability communities to work both with us and with the administration after passage of the Autism CARES Act to ensure that the implementation of the law is consistent with the provisions of the Schakowsky Amendment, which sets a benchmark for including self-advocate voices and taking steps to address long standing inequities in autism research and service-provision. Each of these provisions can be implemented through executive action absent new statutory language. To quote Rep. Schakowsky, “Increasing the voice of self-advocates will only improve our efforts.”