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Tuesday, June 10, 2014

CARA is Now Autism CARES

Self-advocates have long objected to the name of the Combating Autism Act.  In this year's reauthorization, they have mounted a hashtag campaign, #StopCombatingMe.  See this video from ASAN:

In response, House and Senate sponsors of reauthorization are renaming the bill.  Instead of the Combating Autism Reauthorization Act (CARA), the bill is now Autism CARES.  A release from Senator Robert Menendez:
U.S. Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) introduced the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES) S. 2449 to ensure federal autism programs created under the Combating Autism Act continue for five years. The legislation also reforms these programs to increase coordination across federal agencies and provide a comprehensive understanding of the issues facing transitioning youth and adults with autism.
“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 Sen. 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. 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.”
According to a recently released report by the CDC, one in 68 children nationwide are being diagnosed with an autism spectrum disorder (ASD) by the age of eight. This represents an increase from 1 in 88 children just two years ago. New Jersey has the highest rate of ASD diagnosis with 1 in 45 children.
Additionally, a new study published online today by the Journal of American Medical Association's Pediatrics site shows that the lifetime cost for supporting an individual with autism is $1.4 million. The study also finds that adulthood needs for housing and residential services account for these individuals’ highest costs; for children, the highest costs are associated with special educational services and the loss of parental income while caregiving. The Autism CARES Act addresses these pressing concerns by continuing programs that expand research and improve coordination of services to maximize the benefit to individuals and their families.
The Autism CARES Act maintains support for the work established under the Combating Autism Act of 2006 and the Combating Autism Reauthorization Act of 2011. Specifically, the Autism CARES Act:

Addresses the concerns of many in the autism community about the name of the underlying law: the Combating Autism Act. Changing the name of the bill will more accurately reflect the nature of the programs without alienating the very people these programs serve.

Establishes the National Autism Spectrum Disorder Initiative, which elevates an existing official at the Department of Health and Human Services (HHS) to be the key point person coordinating autism efforts. Reforms are also made to the Interagency Autism Coordinating Committee (IACC) to provide an increased focus on reducing unnecessary duplication among autism programs and to provide Congress and the President with more frequent updates on the progress made in achieving the goals of the IACC’s strategic plan.

Calls for a new report to be written focusing exclusively on the needs of young adults and transitioning youth with an ASD or other developmental disabilities and the challenges they face transitioning from school-based services to those needed during adulthood. The findings in this report will form the foundation for future efforts – both within the government and with private services providers – to ensure an evidence-based, comprehensive and outcomes-oriented approach to services and supports for transitioning youth and young adults as they age-out of the school-based support system.
Senator Menendez is the leading advocate in Congress for individuals with autism and their families, having secured the passage of the 2011 reauthorization of the Combating Autism Act. Additionally, he authored the AGE-IN Act to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. Several key policies from this legislation are incorporated in the Autism CARES Act.