Autism Experts: Facing a Tsunami of New Cases
December 12, 2012
By Bob Byrne
Congressman Patrick Meehan (R-PA 7) heard area autism experts sound a big alarm about a coming "tsunami" of autism cases of young adults about to age out of current school and special needs education programs.
Meehan assembled a group of experts in the research and treatment of autism from Delaware, Chester and Montgomerry Counties Monday in Havertown. The local discussion comes on the heels of a Congressional Oversight and Government Reform Committee hearing on autism programs that Meehan attended last week. Among the big names who testified at the hearing on Capitol Hill is Bob Wright, the former Chairman of NBC who has an autistic grandchild...and big business clout.
Local representatives from the Autism Society of America (Philadelphia Chapter), Autism Speaks (Greater Delaware Valley Chapter), Center for Autism Research, Melmark, KenCrest Centers, Devereux, Delaware County Arc, Chester County Arc, Delaware County Intermediate Unit, Chester County Intermediate Unit, and the Montgomery County Intermediate Unit took part in the nearly two hour discussion at the Delaware County Child Guidance Center.
The upshot of the meeting
Research into the causes of autism have come a long way in the last twenty years, but there is still a long way to go to identiy what causes autism. The group also described numerous scenarios in which government funding is so tightly micro-managed by different programs that services to the children and adults with autism are more inefficient than they would be if care providers and educators could have more say in exactly how money from the federal government is spent.
Several of the participants cited examples of how well-intentioned (federal and state) government funding programs actually hamper the way a student is treated. In one common scenario aides assigned to sty with an autistic student throughout the day are allowed to intervene and instruct an autistic student who may be acting out, but they are not permitted to help that student with academics.
What that means is reality is that the one adult who is going through every class with an autistic student is not permitted to actually help that student with learning. That function is paid for out of a different government program and if the aide steps in to assist an autistic student, the funding can be put at risk. The end result is that an autistic student can't get academic help from the one constant person in their day because of bureaucratic regulations.
Many of the people who spoke at the meeting told Meehan that there is a crying need to allow the hands-on care providers and educators with more leeway in how federal money is spent so that is can actually be more effective on a case-by-case basis.
A Tsunami of young adults with autism is about to "age out" of education.
Most federal and state programs only fund the education and care of autistic people until age 21.
In recent years the number of people diagnosed with conditions on the autism spectrum (which covers a wide range of disabilities from more "mild" but still serious socialization skills to low-functioning patients who are non-verbal) has increased to now 1 in 88 children born.
That represents a daunting challenge and serious questions about how young adults with autism will find work, function in society and on the job and who will care for them once their parents get too old or inevitably die.
Speaker, including parents and educators told Meehan on Monday that Pennsylvania has a "waiver" program that will provide funding for the ongoing training and care of 400 adults with autism every year. Thousands of people with autism are now turning 21 in Pennsylvania every year.
That math has concerned parents, educators and professional care providers sounding an alarm.
Sue Tuckerman is an advocate for autistic kids and adults. She is the mother of 15 year old autistic twins. She echoed the concern of many in the meeting when she told Meehan "The world is not ready for these adults with autism..it's frightful. We hope that there is some hope for some degree of self-sufficiency (for autistic children who age out of government funded education programs).
Tuckerman shares the concern of millions of families with autistic children: what's going to happen when the parents are gone or too old to care for their children.
Karen Kessler with the Montgomery County Intermediate Unit (which serves students with special needs) summed up the growing crisis by telling Meehan "At age 21, the bottom falls out."
For his part Meehan told the group that improvements to the funding and services puzzle will come in small victories and he pledged to use his "bully pulpit" as their representative in Congress to voice their concerns and advocate for the needs of people with autism as the opportunities arise in Washignton where thousands of competing interests vye for attention every day.
With one in 88 children now being diagnosed with some form of autism the need to address treatment and research is clearly among the more pressing, which the newly re-elected freshman Republican acknowledged in his remarks during the meeting.