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Wednesday, November 27, 2013


Today, at the Carrus Institute Building at the Center for Discovery in Monticello, U.S. Senator Charles E. Schumer unveiled legislation called The Assistance in Gaining Experience, Independence, and Navigation (AGE-IN) Act, which would help fund ongoing services for young adults with autism and other developmental disabilities, after they "age-out" of the school system. The Center for Discovery is already a leader in research and treatment for children and adults with complex disorders like Autism Spectrum Disorder (ASD), and Schumer’s plan would allow them to compete for grant funding to research and develop transitional services as those individuals turn 22 years old and are no longer eligible for most school-based support services. Nationwide, about 50,000 children with autism lose meaningful school-based support systems each year, potentially setting back the social, behavioral, educational and emotional progress made during their school years. 
Schumer said that The Discovery Center is a leader in its research, treatment and care of individuals with complex developmental disabilities, like ASD. Nationwide, however, experts agree that there is not a widely held understanding of what services are currently available for  individuals as they “age out” of the school-based care after turning 22, or even what services are most effective at ensuring a successful transition.  The only consensus among researchers is that there is a lack of available data and more research is needed to fully understand and develop techniques to successfully meet transitioning youths’ unique needs, according to the Interagency Autism Coordinating Committee. The AGE-IN Act is the first piece of legislation to establish a comprehensive framework that joins rigorous research analysis with the careful application of its findings to help transitioning young adults with ASDs become successful, independent members of society.  
The AGE-IN Act would first fund research into the best treatments for these young adults in transition, and second, fund efforts by organizations like the Center for Discovery to train “Transition Navigators,” who will help connect young adults with an ASD to further educational or employment programs. The Center for Discover is supportive of such programs to address “aging out,” and Schumer said that based on its long track record of success, the Center for Discovery is a great candidate for federal funding to develop programs to train these Transition Navigators.

“Right now, too many of our young adults with autism will turn 22 and ‘age out’ - or lose access -  to the treatment and support systems that have helped them grow and develop, putting at risk all their progress. We cannot abandon our young people with ASD just as they are about to continue with their education or enter the workforce; instead, what we need to do is call in the experts at places like the Center for Discovery to help bridge that gap,” said Schumer. “That’s why I will be pushing for the AGE-IN Act to funding crucial research and training programs through places like the Center for Discovery to ensure that we invest our resources in helping young adults with ASDs become integral, contributing members of society. Autism is a serious illness that doesn’t ‘age-out’ at 22, and neither should the support services that help our young people with ASD grow and succeed.”


One of the biggest problems facing young adults with autism at The Center, is that when they turn 22, the funding for their support services can be reduced by an estimated two-thirds. The Center continues to serve this high-need community, but has struggled to provide the necessary funding to provide services to this age group. The Center, although they receive some public funding, relies heavily on corporate and individual donations to serve high-risk communities and conduct innovative research. Having a source of federal income to provide necessary services, and produce data driven research which will enhance the services directly to the community they serve as well as the at large developmentally disabled community, will ultimately result in better services, treatment options and new models to achieve higher rates of productivity and education.

Schumer explained that the AGE-IN Act, sponsored with Senator Robert Menendez, could mean more research funding for facilities like The Center for Discovery.  The Act would also provide funding to train relevant medical, educational, and vocational personnel in how to assist young adults with an ASD with their transition into society.  Schumer explained that the training of these “Transition Navigators” could take place at a top-of-the-line research facility like the Center for Discovery. A site like The Center for Discovery would be highly competitive in obtaining grant funding through this program, and Schumer said that the Center could then establish best practices through research and hands-on treatment to share with other schools and providers that serve teenagers and young adults with ASD.

Currently, more than half of young adults with ASDs are not engaged in employment or further education 1 to 2 years after they have graduated from high school. Only 35% of such adults attend 2- or 4-year colleges. Certainly, some of these individuals may not be able to attend higher education, but in other cases a lack of transitional services and trained professionals to guide young adults towards appropriate programs are to blame. The AGE-IN Act is the first piece of legislation to establish a comprehensive framework that joins rigorous research analysis with the careful application of its findings to help transitioning young adults with ASDs become successful, independent members of society.  Schumer argued that support services, during what is a critical juncture in any person’s life, could mean the difference between a stable adult life and regression.