'The Federal Response to Autism: Where Is the Urgency?' An Open Letter from Peter Bell
May 29, 2012
Almost two months have passed since the Centers for Disease Control and Prevention (CDC) released the shocking results of its latest prevalence study—1 in 88 American children, 1 in 54 boys, now has an autism diagnosis. This news was accompanied by the release of an Autism Speaks/Goldman Sachs study, which estimates the annual cost of autism in the U.S. has soared to $126 billion, a burden borne in large part by families. These statistics confirm what we have known for some time: AUTISM IS A PUBLIC HEALTH EMERGENCY THAT DEMANDS URGENTACTION. We need a national plan to meet the challenge. We need a coordinated, strategic approach, among all federal agencies and the administration, to ensure that funding and research for autism is adequate, focused and effective.
These developments mark a reversal in positive momentum since last September when President Obama signed the Combating Autism Reauthorization Act (CARA), which extended the federal investment in autism at current levels over the ensuing three years. As part of CARA, the Interagency Autism Coordinating Committee (IACC), which steers federal autism research, was to be reconstituted. The new IACC not only has yet to meet, its first meeting won’t be held until July 10th – a full nine months after CARA became law. That’s exactly 25% of the way through the three year authorization period. In the midst of the autism epidemic, this is an unconscionable situation. Where’s the urgency?
Unfortunately, a coordinated, strategic approach to autism has yet to materialize. A $21.3 million annual appropriation authorized under CARA for the CDC to continue tracking autism prevalence, to research the multiple causes of autism and to promote early detection is now in jeopardy as a result of the current federal budget process. The White House broke with established procedure by placing the appropriation within the politically sensitive Affordable Care Act in President Obama’s proposed budget for fiscal year 2013. The appropriation is now in danger of failing due to politics, rather than any debate over its merits. There was no reason to inject the CDC funding into a political debate that has nothing to do with autism. There is no room for politics in autism.
Our concerns don’t stop there. In structuring the Affordable Care Act of 2010, Congress made it very clear that behavioral health treatments, including applied behavior analysis for autism, must be a part of the Essential Health Benefits package. Every health plan offered through the state exchange system is required to include these benefits by 2014. The Department of Health and Human Services (HHS), which is charged with implementing the law, needs to urge policymakers at all levels of the government to abide by the intent of the Congress. Senator Robert Menendez of New Jersey, who had the language inserted in the version of the bill that became law, along with Representative Mike Doyle, other members of Congress, and Autism Speaks, have pressed the Obama administration on this oversight, but our shared concerns have yet to be addressed.
As these concerns from the autism community mount, we have watched the White House roll out a bold new plan for fighting Alzheimer’s that is commendable both in spirit and in purpose. The “National Plan for Addressing Alzheimer’s Disease” was launched in early 2011 and has already resulted in a large infusion of additional funding ($150 million) to support research, provider education and public awareness. Last week, HHS Secretary Kathleen Sebelius announced even more actions including the funding of two major clinical trials, the development of new training for clinicians, and a new public education campaign and website to help families and caregivers find the services and support they need. We commend the administration for taking these bold steps to fight a medical condition that severely impacts millions of Americans during the final years of their lives. Those affected by autism need and deserve a similar focused and committed strategy from the federal government.
On matters of policy and funding, Autism Speaks and the autism community have succeeded when we’ve made our voices heard. Our active and growing grassroots base of advocates has been there when we issued the call to rally. We will continue to press our case with the Obama administration and members of Congress as events unfold this year. We ask that you join with us in this important effort. You can help by following our messages, staying informed by visiting our Autism Votes website, signing up to receive updates and continuing to respond when there is a need to take action. As always, we thank you for your unwavering support in advocating for the autism community.