By Katie Weisman, Chair of the SafeMinds Government Affairs Committee
September 30th. Today was the day by which I really hoped to pass some meaningful legislation for my boys and all their friends with autism. Unfortunately, that didn’t happen. Back in early spring, I dusted off my advocacy boots and got involved setting up the Autism Policy Reform Coalition. We worked hard for many months attempting to get some language into the (then) Combating Autism bill that would make a real difference in the lives of people with autism. We wanted a focus on useful and environmental research, a focus on treatments, safety, better surveillance, and a medical model for care. We asked for two offices to direct federal autism efforts and a full-time person accountable for results. And for me, perhaps most important, some attention to causation and preventing further children from being affected – because it upsets me to see a little one with no language and to know how long and hard a road he or she faces.
Toward the end of the legislative process, I created this document for Congress. I thought it was appropriate to share it today – our original deadline to pass a better bill. It was a brief attempt to help legislators understand how ineffectually the bulk of the federal autism money is being spent. It is short, since it was designed for staffers with limited time, so please take a few minutes to read it. As voters on behalf of your loved ones, you should be fully aware of the shenanigans going on at our federal agencies, particularly the NIH. Some of you will say, “The Strategic Plan is lousy, so why do we care?” My answer is that, while the Strategic Plan is by no means perfect, if followed as written, I estimated that about $40 million a year in research funds would be shifted into goals that would help kids – and that is a lot of bake sales and silent auctions.
Our goal of trying to include language in the bill to force “spending proportional to the strategic plan goals” was an attempt to stop a runaway train. I have had long conversations with Lyn Redwood, who has the patience of a saint, and who has sat on the IACC since it began. Despite her ongoing questions about lack of oversight, research being “retrofitted” into the plan, duplication of research, and lack of any information on “return on investment”, the reauthorization of the Autism CARES act, does essentially nothing to address these problems. The language that was added about having HHS oversight has no teeth. NIH will continue to fund “legacy” researchers and programs as it deems fit with no attention to the community’s needs or wishes.
So the way forward is murky. What we really need is a Manhattan Project for autism – prevention, effective treatment, and appropriate education, jobs and community supports for those already affected. We need teams of open-minded, dedicated professionals with goals, deadlines and the will to make a difference. We need town hall meetings, discussions at all levels of how to handle the epidemic, dollars to make things happen and friends in high places. I invite you all to get involved and show this information to your representative; it is election season and he or she needs your vote.
Our kids need a future.
