Congressman Chris Smith (NJ-04) today hailed the Senate’s passage last night of his legislation reauthorizing federal autism research programs and beginning the conversation on how we as a nation can best address the “aging-out” crisis. Having passed the House on June 24^th, this bill is now on its way to the President for his signature and enactment into law.

     “By passing this legislation, Congress assures individuals with autism and their families that they will not be left behind, and that we are working to assist and empower them,” said Smith.

    The “Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (The Autism CARES Act/ HR 4631) authorizes $1.3 billion over five years to continue the critical pipeline of federal research dollars that are helping to unlock the mysteries of autism, find ways to prevent and mitigate its occurrence, and ensure that families have the tools they need to know what to do after a diagnosis.

    Smith’s bipartisan legislation further tasks federal agencies with examining and anticipating needs for autistic adolescents who are aging out of their school based support systems.

     “Every year 50,000 youths with autism enter into adulthood and communities that are unprepared to meet their support needs,” Smith said. “It is imperative that people with autism spectrum disorder (ASD) are empowered to be self-sufficient so that they can not only earn money to meet their own needs, but also so they can utilize the talents they possess to contribute to society at large.”

     Smith and Rep. Mike Doyle (D-PA), an original cosponsor of the measure, co-chair the bipartisan Coalition on Autism Research and Education (CARE). Both Smith and Doyle worked tirelessly to secure passage of this bill in the House and Senate.

     “I’m very pleased to see the Senate act on this legislation today,” Congressman Doyle said. “The federal government’s autism programs are providing important new knowledge about Autism Spectrum Disorders. These programs provide information and hope to individuals with autism and their families. Passage of the Autism CARES Act today makes it possible for those efforts to continue. I’m proud to have worked with Congressman Smith and Senators Menendez and Enzi and many leaders in the Autism community to achieve this important goal.”

     The Autism CARES Act requires the Department of Health and Human Services (HHS) to report on best practices for transitioning adolescents with ASD from school to adulthood. The legislation will be supplemented by a report from the Government Accountability Office (GAO) on the services landscape for adults—which will include input from state and local governments, the private sector, and non-profits working with children and young adults on the autism spectrum.  The reports will provide policymakers and the general public with an updated analysis of the demographics of autism, and address the needs of the autism community, including economic self-sufficiency, independent living, equal opportunity, and full participation in the workforce and society.

    Jonathan Kratchman, a 17-year-old Hamilton student with ASD, recently sent Smith a copy of his speech presented last year at the "Dare To Dream Conference" at Mercer County Community College. The youth’s comments give great insight to the problems faced by so many adolescents on the autism spectrum: "I know I can be a great contributor to society when I graduate. However, I need continuing support to get there… Here is a fast fact. If you take your high school diploma at age 18, you automatically lose services from your school district.”

     “Clearly, we need to do a better job of preparing children, like Jonathan, for adulthood and provide the help and services they need to reach their full potential,” said Smith.

    About 1 in 68 children has been identified with ASD, according to the most recent estimates from the Center for Disease Control (CDC). In New Jersey, 1 in every 45 children has ASD, the highest rate in the study.

The $1.3 billion authorized over the next five years is targeted in the following way:

* $110 million for the developmental disabilities surveillance and research program at the CDC;
* $240 million for autism education, early detection, and intervention, and;
* $950 million for research grants at the National Institutes of Health (NIH) and the operations of the Interagency Autism Coordinating Committee (IACC).

    The Autism CARES Act enhances and maximizes coordination among agencies and ensures that taxpayers’ dollars are spent efficiently. The bill increases government accountability by requiring HHS to designate an individual charged with implementing IACC’s annual strategic plan, and to report to Congress on their progress.

     “We too often see people with ASD as victims who must be cared for, when the focus which their condition produces may allow them to be highly successful in certain endeavors,” Smith said. “When we begin to look at people with ASD in this light, we can better see how they can be enabled to contribute to society. It just requires understanding of their potential as well as their limitations.

    The Smith bill has 86 bipartisan cosponsors and the support of a large coalition of autism and disability advocate organizations.  Here's what they are saying:

• "We are delighted with the passage of this very important and much needed bill," said Scott Badesch, President and CEO of the Autism Society.  "We are very thankful for the leadership of Congressmen Smith and Doyle, whose commitment to helping all impacted by autism maximize their quality of life is outstanding."

• “We are so pleased to see this law reauthorized,” said Kim Musheno, Director of Public Policy at AUCD. “Because of this law, children with ASD are being identified earlier and many more are getting evidenced based services. More needs to be done and this bill is a positive step in the right direction with new emphasis on youth transitioning to work and post-secondary education. AUCD applauds Reps. Smith and Doyle and Sens. Menendez and Enzi for working in a bipartisan, bicameral way to get this important law renewed.”

• "The Senate has now joined with the House of Representatives in sending a clear and bipartisan message -- the federal government will not abandon three million Americans with autism in the midst of a public health crisis," said Autism Speaks President Liz Feld.

• “We are particularly pleased that H.R. 4631 would reauthorize the current Combating Autism Act programs at NIH, CDC and HRSA for an additional five years, through September 30, 2019. A five year reauthorization will be extremely helpful for planning and evaluating the important research conducted under the program,” said James M. Perrin, MD, FAAP, President of the American Academy of Pediatrics. “We are pleased to support the Combating Autism Reauthorization Act of 2014, and we applaud your efforts and leadership on this important issue….Thank you for all you do for our nation’s children.”   

    Smith authored the original law, adopted in 2000, that created a comprehensive federal response to combat autism. The Autism Statistics, Surveillance, Research and Epidemiology (ASSURE) Act—which later became Title I of P.L. 106-310 —authorized grants and contracts for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities, and established regional centers of excellence in autism surveillance and epidemiology.

    Nearly 17 years ago, Bobbie and Billy Gallagher of Ocean County, N.J, parents of two small children with autism, visited Smith’s district office looking for help. The couple believed their town had a disproportionate number of students with autism and wanted action. Smith petitioned the CDC and other federal agencies to investigate.

    After a comprehensive study, CDC determined that autism rates had increased not just in the Gallagher’s area, but across the country. Soon after, Smith introduced the ASSURE Act, HR 274, to authorize grants and contracts for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities. Smith’s ASSURE Act was enacted as Title 1 of the Children Health Act of 2000 and now forms the baseline of much of the federal work in autism today

    Smith is also the author the Combating Autism Act of 2011. This Congress, Smith has also introduced HR 3054, the Global Autism Assistance Act of 2013, which establishes health and education grant programs to serve children with autism in developing countries, and recently held a hearing on how international industries are helping individuals on the spectrum achieve career success.

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