Update: Bob Wright on Andrea Mitchell Reports. Watch here
WASHINGTON, DC (November 29, 2012) -- Autism Speaks Co-founder Bob Wright told the House Committee on Oversight and Government Reform today the federal government has failed to respond to the nation's growing autism epidemic with the sense of urgency it deserves. The committee pledged to dig deeper into the issue.
Testifying before a standing room only crowd, Wright said individuals and families all across America living with autism are fed up with the slow rate of progress in finding the causes of autism, the delivery of meaningful treatments and how to better support people with autism throughout their lifespan. He called on the Congress to develop a national strategy to meet the need for a comprehensive approach to autism research, treatment and services.
Wright said the true rate of prevalence of autism in the United States was probably closer to the 1 in 38 rate discovered in South Korea earlier this year through a study funded in part by Autism Speaks, rather than the official 1 in 88 rate determined by CDC. The South Korea study, whose methodology Wright called the “gold standard,” is now being replicated in South Carolina with funding from Autism Speaks.
Read Bob Wright's blog in the Huffington Post here.
During the hearing, committee member Rep. Dan Burton (R-IN), who is retiring from Congress, was praised for his many years of commitment to raising awareness of autism and forging a federal response. Burton's grandson has autism.
The committee chairman, Rep. Darrell Issa (R-CA), opened the hearing by saying, “Congress spends a lot of time discussing and debating issues that are determined by our own philosophical belief on what the role of government should be. Today we are drawing attention to something that has no political affiliation, no partisan allegiance, something much more fundamental and something much more personal.”
In his prepared testimony for the committee, Wright said, "There is no getting around the facts: autism has become an epidemic." While Autism Speaks is proud of the work it has done since it was founded in 2005, “We cannot, however, go it alone. We need a strong federal partner."
Wright cited a series of steps Congress should address to improve the federal response to autism and noted two bills that should be passed before the current lame duck Congress ends in January. One is the ABLE bill that would create tax-advantaged savings accounts for people with disabilities to support their future needs; the other is a measure that would enable military families to access ABA. Wright announced in the middle of the hearing that the Senate, in a critical vote, had just taken the first step by adding an amendment to the National Defense Authorization Act that would make autism treatments available to all military families.
While more funding for research is needed, Wright said, it must be invested more wisely. "What has been lacking is a policy that directs funding according to a strategic plan, measures meaningful progress, operates with a sense of urgency, and assures accountability," he said. "We must expect results that improve the lives of people living with autism today, not just future generations."
Wright said early diagnosis of children is essential. The average age today for diagnosis is five years; it must be no later than 18 months, he said.
New medicines and treatments need to be developed, but also marketed and made more accessible to families, he said. Wright noted that Autism Speaks has established a not-for-profit affiliate, Delivering Scientific Innovation to Autism (DELSIA), to help do this work which the federal government could support through the National Center for Advancing Translational Sciences (NCATS). In addition, he called for a stronger federal response to vaccine safety.
Access to ABA needs to be improved for all individuals with autism, Wright said, not just on the basis of the insurance they carry. "Autism is a treatable disorder," he said. "Yet today families across the country continue to fight for ABA benefits, negotiating a complex maze of state and federal laws and often unfair insurance company practices."
Finally, the federal government must confront the rapidly rising tide of adults with autism and needed supports for continuing education, employment, housing, and community integration, Wright said in the formal testimony.
Chairman Issa and many other members of the Committee pledged to continue to follow this issue carefully during the next Congress which begins in January, 2013.
Watch Wright's testimony before the committee here.