Two important pieces of autism legislation have recently been signed into law. On September 30, President Obama signed H.R. 2005, “The Combating Autism Reauthorization Act.” He thereby ensured that crucial programs for autism early detection, surveillance, research, education, awareness and treatment will receive funding for three more years, through September 30, 2014. These programs had been authorized under the Combating Autism Act of 2006 (CAA) but could have been discontinued without the passing of H.R. 2005. With the Centers for Disease Control and Prevention estimating that 1 in 110 children — 1 in 94 children in New Jersey where I live — have an autism spectrum disorder, the reauthorization of the CAA means that research into the treatments and causes of autism can continue.
The other major piece of autism legislation that just became law is SB 946, which mandates that health insurance health plans in California must cover behavioral therapy as a medical benefit for autistic individuals. 27 other states (including New Jersey) already have such a law. While insurers have predicted that the bill will add $200 million to the annual cost of health insurance, advocates counter that it will increase premiums by less than 1%. The bill was authored by Senate President Pro Tem Darrell Steinberg, a Democrat, and takes effect July 1, 2012 and expires July 1, 2014, when the federal government will issue a list of essential benefits under federal health care reform. If behavioral therapy for autistic individuals is not on the list, SB 946′s mandate will expire.
Insurers have fought coverage for behavior therapy for autistic individuals on the grounds that it is an educational, not a medical, benefit. My 14-year-old son Charlie, who is on the moderate to severe end of the autism spectrum, was just over two years old when he started doing such behavior therapy, Applied Behavior Analysis (ABA). ABA for such a young child often involves one-on-one teaching. Therapists use teaching techniques based on B.F. Skinner’s principles of behaviorism to teach children, often by “breaking down” tasks and activities into smaller steps and reinforcing a child positively for successfully completing each step and then gradually teaching children to build on what they have learned and perform more complicated tasks: learning to pronounce a word, playing with Legos, dressing themselves, writing the letters of the alphabet, having a dentist clean one’s teeth. ABA is often incorporated into teaching autistic children in school settings and can be used to teach older children how to, for instance, perform tasks for a job on their own.
Charlie did hours of ABA therapy at home from the time he was a toddler till he was about 11 years old. He started with 40 hours/week of therapy and then was doing about 6-8 hours at the time home therapy ceased. From the time he was 4 1/2, he has been in mostly public full-day special education programs here in New Jersey, all of which incorporated ABA teaching. In a few cases, school districts paid for some of Charlie’s in-home ABA therapy. We paid for the bulk of all those years of one-on-one therapy. Our families were generous, but we still drained our savings, including most of my earnings from my first job teaching that, we had thought, we would use to buy a house. It’s just now, with Charlie a teenager, that we have found ourselves in more stable economic circumstances.
In signing SB 946, Governor Jerry Brown “signaled reluctance.” As he said in a signing statement:
“While this bill provides relief for families of autistic children and some clarity for health plans, insurers and providers, there are remaining questions about effectiveness, duration, and the cost of the covered treatment that must be sorted out.”
Advocates for ABA often say that, for some, intensive ABA therapy given to a young child can lead to that child losing their autism diagnosis and/or no longer needing special education services. This has not been the case at all for Charlie. He has had years of ABA, both at home and in school (including at a very highly touted public school autism program in New Jersey). He will need support all of his life, including staff to help him work (provided he can be employed) and live. He can talk a little and has significant cognitive and behavioral challenges; some of the latter require something beyond ABA therapy. But ABA has certainly played a profound role in Charlie’s health in a derivative way, in terms of his quality of life: Charlie lives at home with us, his parents, rather than in an institution. The teaching techniques of ABA have taught him to do many things, from talking, to taking medication, to learning how to calm down when he is in a state of severe anxiety, to riding his bike.
Congressman Mike Doyle of Pennsylvania was one of the sponsors of The Combating Autism Reauthorization Act and is now seeking to enact H.R. 2007, “The Autism Spectrum Disorders Services Act,” legislation to provide more services for autistic individuals, especially adults. This bill “would also establish a planning and demonstration grant program for services to children, transitioning youth, adults, and individuals of any age who may be at risk of injury, authorize grants for protection and advocacy systems, and create a national training initiative to better equip teachers and autism services providers.”
As the parent of an autistic son who is fast entering adulthood, “The Autism Spectrum Disorders Services Act” is very much needed. Autism is a lifelong disability and many autistic individuals will, like Charlie, more than benefit from services that can assist in the difficult transition after school ends, provide for their safety and advocacy and better train staff to support them. While cheering the passage of The Combating Autism Reauthorization Act and California’s legislation, we need to think seriously about the future needs of the 1.5 million Americans on the autism spectrum, to ensure they have the best possible quality of life we can provide.
Photo of the author's son riding a bike, one of the many skills he learned thanks to ABA (and a lot of encouragement from his dad) by the author