[Congressional Record (Bound Edition), Volume 161 (2015), Part 4]
[Extensions of Remarks]
[Page 5556]
[From the U.S. Government Publishing Office, www.gpo.gov]




                          THE AGING OUT CRISIS

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                        Thursday, April 23, 2015

  Mr. SMITH of New Jersey. Mr. Speaker, I rise today to call attention 
to Autism Awareness Month and a huge yet largely invisible crisis that 
begs serious focus and a concerted national effort.
  Every year, 50,000 young people on the autism spectrum transition 
into adulthood and are in the process of losing access to the vital 
educational, therapeutic and other services which enable them to live 
full, independent and successful lives.
  Individuals with autism in the aging out generation find themselves 
entering into a system unprepared to meet their needs, and as a result 
face shrinking opportunities--and in many cases even regression.
  As co-chairs of the Congressional Coalition on Autism Research and 
Education, Congressman Mike Doyle and I hosted a briefing called 
``Autism and the Aging Out Crisis.'' We brought together prominent 
researchers, parents of autistic children and self-advocates to discuss 
how to best respond to the needs of this growing demographic.
  Jonathan Kratchman, a 17-year-old with Asperger's from New Jersey, 
spoke and stated that ``many people with autism can be contributing, 
tax paying citizens of society. We just all need some level of funding 
for the support services that we were entitled to before graduation.''
  High school students are given services and supports to help prepare 
them for young adulthood. However, when they graduate, they face a 
support cliff--their services end and limited options remain available 
to continue development.
  Many of us view high school graduation as a proud accomplishment--
when hard work pays off and we become participants in an adult society. 
For adolescents on the autism spectrum like Jonathan, a diploma can 
represent the end of an era without a new beginning. The support that 
allowed them to continue their development and remain in the community 
is quickly and dramatically reduced. The challenges ahead can seem 
overwhelming.
  According to a report released this week from Drexel University 
researcher Dr. Paul Shattuck--who participated in the briefing and 
whose work was prompted by my recent law--40% of autistic youths do not 
receive mental health therapy, speech counseling, case management, or 
even medical services related to their disability once they reach early 
adulthood.
  26% of young adults on the autism spectrum received no services 
whatsoever to help them become employed, continue their education, or 
live more independently.
  Further, the consequences of the cliff are tangible and profound. One 
third of young adults with autism did not continue their education or 
get a job in their early 20s, compared to less than 8% of young adults 
with other disabilities. Individuals with autism from low-income 
households were almost twice as likely not to continue their education 
or find meaningful employment.
  The study found individuals with autism who transition into adulthood 
continue to struggle with communication, social skills, and decision 
making; confront behavioral challenges; and face co-morbid medical 
conditions and co-occurring mental health disorders related to their 
diagnosis. When the services which help them to address these 
challenges evaporate, not only do these individuals fail to progress in 
these areas, they are profoundly impacted by the loss of their routine, 
and many regress.
  Mr. Speaker, autism does not end when a person reaches adulthood--and 
our commitment shouldn't either. Support should transition along with 
the individuals, bolstering the promise and realization of self-
sufficiency.
  My Autism Collaboration, Accountability, Research, Education, and 
Support Act of 2014 or the ``Autism CARES Act'' (Public Law 113-157) 
began this conversation by tasking multiple federal agencies with 
producing a comprehensive study on the special needs of autistic young 
adults and transitioning youth.
  As researchers, parents, and advocates indicated in the briefing 
today, we need a holistic approach--one that looks at healthcare, 
housing, employment, education and public safety, among other needs. 
With the assistance of Chairmen Fred Upton and Joe Pitts, last year I 
also requested a Government Accountability Office (GAO) report 
evaluating existing programs for effectiveness and making 
recommendations--in consultation with key stakeholders--on how the 
public and private sectors can advance initiatives to ensure a better 
transition.
  The briefing is the first in a series the Caucus will host--building 
on my recent hearing ``The Global Challenge of Autism''--to highlight 
the aging out crisis and explore remedial action. In addition to the 
importance of transition planning, there is evidence that with 
specialized support, employment is feasible even among individuals with 
high levels of impairment.
  At my hearing, Jose Velasco, Vice President of Product Management at 
software giant SAP discussed their process of actively recruiting and 
hiring over 700 young adults on the autism spectrum. Management at SAP 
has recently told me that SAP's diligent young employees with autism 
are extraordinarily effective workers, and the corporation and the 
employees mutually benefit through this innovative alliance.
  We have an obligation to help individuals with disabilities grow into 
adulthood. It is not only the right thing to do; it's a smart 
investment of taxpayer dollars that lower costs in the long run. The 
University Centers for Excellence in Developmental Disabilities 
estimates that: ``Diverting just one young person into living-wage 
employment could save an average of $150,000 in SSI benefits over their 
lifetime. According to the Social Security Administration, 
transitioning just one half of one percent of current SSDI and SSI 
beneficiaries from benefits to self-sustaining employment would save 
$3.5 billion in cash benefits over the work-life of those 
individuals.''
  By investing in and harnessing the potential of young adults with 
autism, we as a society will benefit from the unique skills, abilities, 
and perspectives of the aging out generation.

                          ____________________