Sequestration is Rolling Back Advances in Autism
April 2 is World Autism Day as declared by the United Nations to draw attention to "inadequate support structures" for this life-long developmental disability. To celebrate, Congress sequestered. For families living with autism, sequestration is the Congressional gift that keeps giving.
Sequestration and the gift of interrupted research:
Since 1998, the National Institute of Health has supported 260 research projects on the causes, treatments and prevention of autism. That research has led to scientific breakthroughs that would not be possible without the consistent and reliable support provided by taxpayers. For those years, we knew that we were in this together and that a breakthrough in autism was, ultimately, a breakthrough for our collective good.
So of course NIH is getting cut.
Sequestration and the gift of delayed development:
In 1975, under President Gerald Ford, Title I of the Elementary and Secondary Education Act became home to the Individuals with Disability Education Act. Today, taxpayers infuse $11.6 billion dollars in providing education to children once institutionalized as ineducable. Congress, cutting IDEA funding by $644 million, has decided that it is too expensive. In simple math, that means about 4,351 disabled students will go without supportive services. Of course, those families won’t see their taxes go down according to that reduction, but more troubling is the years it will take those students to catch back up academically, developmentally, physically, emotionally and behaviorally.
Sequestration and the gift of straining military families:
Since 2007, former Congressman Joe Sestak (D-Penn.) and then-Congresswoman Kristen Gillibrand (D-N.Y.) have been working on improving life for the 25,000 military dependent children with autism. They found that the stress of repeated deployments and the pattern of permanent relocating every three years was not only too stressful for many autistic children, it was interrupting vital relationships and therapeutic progress. Recently, Senator Gillibrand (D-N.Y.) was successful in passing legislation that increased services through the military’s insurance provider, Tricare. Her colleagues in the House, however, were concerned that this increase in covered therapy would be too expensive so the services will sunset after one year. Sequestration pulls $500 billion out of the Department of Defense budget including health care services for military families.
The true nonsense of reducing research, education and therapeutic services to children with autism, as we celebrate World Autism Day, is that there are ways to reduce the cost of research, education and therapeutic services without reducing the benefits of research, education, and therapeutic services. Technological breakthroughs would have allowed Congress to act both humanely and responsibility with just a little research into advances like:
1. Cloud Computing: startups like Vivana are taking advantage of what cloud computing and analytics can do to help the entire collaborative care team better communicate, plan and analyze impact of services.
2. Biomechanics: Researchers like Victoria Chestler are bringing together advances in camera technology and computing to study ways to improve physical therapy.
3. Apps: giants like Apple are bring the power of apps to students who aren't able to communicate without help, because hearing your child say "I love you" even if computer generated is better than never hearing it said at all.
4. Video Mapping: Even though all the research finds that therapy is significantly more effective when children are diagnosed by three, the average age of diagnosis is five years old. Researchers at the University of Minnesota have developed technology that video maps the movement of infants and allows for diagnosis in infancy.