Autism Spectrum Disorder has increased dramatically in the last 25 years. It is a crisis. What will legislators do with a federal program which, after eight years and $1.7 billion, has failed to truly address this crisis? Sadly, Washington is on a path to rush through a five-year reauthorization, raise spending 20 percent and hope for better results without addressing fundamental structural flaws in the current program.
It will not be easy to reach consensus on improving the Combating Autism Act (CAA) in a way that provides effective accountability and brings results and meaningful improvement for those living with autism and their families. Given the magnitude of the issue on a personal and societal level, we should not settle for less than an optimal bill. I would suggest that we work expeditiously to come together with the entire community and improve current proposals, including meaningful measures to improve the outcomes of the American people’s investment.
At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.
The failures of the federal response to autism in general, and of the IACC in particular, is rooted in structural weaknesses resulting from bureaucratic organization and execution. These things can and should be reformed as we reauthorize CAA.
Most importantly, while the IACC is charged with drafting a strategic plan to prioritize the scientific research on autism, and to assess the budgetary requirements for each of the plan’s priorities, there is no line item in the federal budget against which the appropriators and the President can budget to actually carry out the plan.
Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan. This disjointed process results in producing at best few effective results. Furthermore, the agency has failed to evaluate and validate any of the commonly used treatments currently being used so that parents may eventually obtain insurance reimbursement.
Not only does autism research funding fail to match the IACC recommendations, but the Government Accountability Office (GAO) recently found that up to 84% of such research had the potential to be duplicative. For example genetics research funding far exceeded the IACC recommendations while environmental exposure research fell far short of those recommended. Government witnesses affirmed during the hearing that recent research demonstrated that upwards of 55 percent of autism is linked to environmental factors, but the government research funding balance does not reflect this reality.
The process for CAA reauthorization is already underway in both Houses of Congress with bills proposed so far that do little to fundamentally reform the failed CAA structures. I fear that this path will lead to the expenditure of another billion dollars with no practical results for those with autism. We cannot afford as a nation to simply keep researchers employed and not address the plethora of immediate research needs of the autism community.
I was recently made aware of some suggested changes proposed by a coalition of national autism organizations representing those children and adults most severely affected by autism, the Autism Reform Policy Coalition. These organizations represent those living with autism every day. The framework they are suggesting appears to provide logical solutions and I think we as legislators owe it to the autism community to incorporate some of their ideas for CAA reform so that we have a better opportunity to bring results that work for families.
We owe it to those most severely affected by autism, and all those who love them, to give this our best shot. I fear that in the rush to pass “a bill” we are missing an opportunity to pass “the right bill” that produces results. I hope my colleagues on both sides of the aisle will work with me to make the time to do so.
Rep. Posey represents Florida's 8th Congressional District.