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Congress To Weigh Increased Autism Funding

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Months before the nation’s primary autism legislation is set to expire, members of Congress are looking to renew the bill and kick in some extra dollars for efforts related to the developmental disorder.

A bill introduced Monday in the U.S. House of Representatives would extend the Combating Autism Act for five years, allocating $260 million annually for research, prevalence tracking, training for professionals, early identification and other federal initiatives through 2019.

Originally passed in 2006, Congress last approved the Combating Autism Act in 2011 with $231 million per year going to autism efforts since that time. The law is set to expire at the end of September unless lawmakers act to reauthorize it.

“This is a critical investment that is working to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems,” said U.S. Rep. Chris Smith, R-N.J., who introduced the legislation along with U.S. Rep. Mike Doyle, D-Penn.

The $29 million increase included in the proposal this week would be allocated toward research grants administered through the National Institutes of Health.

In addition to continued funding for research, surveillance, education, early detection and other existing efforts, the proposal calls for the Government Accountability Office to study the needs of adults with autism nationwide.

What’s more, the bill would require that a staffer be designated within the U.S. Department of Health and Human Services to oversee implementation of the strategic plan created annually by the Interagency Autism Coordinating Committee. The makeup of the federal advisory panel would also change, with the top Republican and Democrat in both the House and U.S. Senate appointing one representative to the IACC apiece.

Smith and Doyle said the legislation already has a bipartisan group of 35 co-sponsors.

Nonetheless, the autism bill is not without critics. Self-advocates have long complained that the legislation places too much emphasis on research as opposed to critically-needed services and they say that including the word “combating” in the law’s name stigmatizes those on the spectrum.

Meanwhile, a separate bill to reauthorize the Combating Autism Act is expected to be introduced soon in the Senate and an aide tells Disability Scoop that it will vary from the House version.

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Comments (6 Responses)

  1. Dadvocate says:

    “(Some) self-advocates have long complained that the legislation places too much emphasis on research…” CAA and CARA ARE research oriented legislation and designed as such. They exist because, prior to 2006, little to no meaningful scientific research was being done on autism spectrum disorders. They are the critical engine that has jumpstarted research and needs to keep doing its designed job. We’ve only just begun to gain critical knowledge about what autism is (or what autisms are) and how they work. Legislation that focuses on autism (especially adult) supports is also essential but that belongs in a different bill or bills.

    This “disease-specific” Federal legislation (one of only 2…the other is AIDS) enjoys overwhelming support because the Congress recognized the urgent need to play catch up on the science. Science leads to knowledge. Knowledge leads to more effective diagnostic tools, therapies, and interventions that most people impacted by autism and their families want and need, and perhaps someday for those who want it, prevention or a cure.

  2. Whitney says:

    I am not critical about getting research funding for Autism. I think that cure is long way off if truly genetic and we do not need to forget people with autism for services they need now. I am more concern about redundant research and research done foolishly. There is a need for oversight on how research done. It does not mean research funding is a blank check, however, to researcher.

  3. Debbie says:

    What about all developmental disabilities, there are research, development of Best Practice treatments, employment and housing needs in ALL IDD diagnoses. While Autism has large numbers we need to address the fact that treatments, programs, job training and housing options should not be compartmentalized by diagnosis leaving out the “conditions” that are less prevalent but no less in need of knowledge, supports and services.

  4. Nagamani Beligere says:

    Emphasis on research as indicated by Legislation is critical towards preventive aspect of Autism as disease specific. In this regard it is essential to fund the research.At present many interventions are used,Therapeutic interventions also need research, in order to delineate which methods are successful in helping the affected.Any research will help not only the etiology,but also prevention and ultimate cure for the disease

  5. Whitney says:

    I agree an emphasis needed on support services for all disability in both Autism and IDD is needed., Once the services are established then the research can be done. My estimate is the cure for autism will not be found 25 years at least then another 15 years of testing for the FDA which comes to 40 years in total. So services must be established so people can have productive lives.

  6. Laurie Spezzano says:

    While more services are needed for all intellectual disabilities, those are mostly funded through Medicaid and this bill is not about that. I support this bill’s push for more research into causes AND effectiveness of treatments, and especially the need for adult services. We can fight for more service funding in a seperate bill or Medicaid regulations.

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