PARAMUS, NJ - In an effort to expand the nation's understanding of - and services for - young adults and their families living with autism spectrum disorders (ASD), U.S. Senator Robert Menendez today unveiled legislation that would provide federal funding to research and evaluate services currently available for young people "aging out" of existing education and support systems, develop a national strategic action plan, and provide training grants to put the plan into action in helping transitioning youth to lead productive, independent lives.
"For too many young people with autism spectrum disorders, the end of high school means the end of the support and skills training they need to succeed in the new world of adulthood," said Sen. Menendez, the Senate's chief advocate for families living with autism. "We need a national response to ensure that resources are available to enable these young adults to lead the productive, fulfilling lives they deserve."
"Senator Menendez has been a leading champion for the autism community in Congress and the AGE-IN Act shows he is closely attuned to the pressing needs of our families," said Peter Bell, Autism Speaks' executive vice president for programs and services. "Many thousands of young adults with autism are now 'aging out' of the daily supports they receive through the public education system, and need help with employment, housing, transportation, higher education and other services. Living at home with aging parents is simply not an option in many cases."
"Over the years, ECLC of New Jersey has expanded its mission beyond education into adult supported-employment and day programs because of the gap faced by so many young people with special needs as they transition out of their respective school programs at age 21," said ECLC Executive Director, Bruce Litinger. "This type of federal funding is needed to support young people and their families who otherwise will be faced with limited opportunities."
The Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act of 2013 will address the needs of aging-out youth with ASD in two phases: The first phase is designed to identify the most effective interventions and existing support service infrastructure in order to develop a comprehensive training plan; The second phase puts this plan to action by providing grants to existing entities - such as University Centers of Excellence in Developmental Disabilities Education, Research and Service - to train a new generation of Transition Navigators. Transition Navigators will be trained to provide interdisciplinary and comprehensive services to address the needs of transitioning youths including providing services aimed at accessing continuing education (including vocational training) and competitive employment, but also in obtaining life's other necessities such as health care, housing, transportation and community integration.
Young adults with autism spectrum disorders who turn 21 "age out" and are no longer eligible for school based support services. The world into which these young adults are thrown can be disjointed and lacking in meaningful support networks. This often leads to the youth stalling or regressing from the social, behavioral, educational and emotional progress made during their time in school.
Each year, roughly 50,000 children with an ASD reach adulthood with few opportunities for continuing their education or finding employment. Currently, less than half of transitioning youth are participating in either secondary education or employment within the two years after leaving high school, and only 35 percent receive any additional education within six years. This lack of social integration and participation in the years immediately following high school sets transitioning youth on a path of non-participation that will remain for the rest of their lives.
Nationally, there is a lack of understanding about the services available to transitioning youth or the effectiveness of these services. The only consensus among researchers is 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.
Menendez's bill is designed to conduct research, develop techniques and implement training for support services that will help ensure young adults with ASD have the opportunities to make the transition to adulthood a success.