By Holly Bortfeld
For 16 years, I’ve watched government agencies say nothing useful and do nothing to help my kids. For as long, I’ve seen autism orgs fight a regimented system who doesn’t care, for money they don’t want to spend on a diagnosis that no one can agree on the cause, treatment, or even the prevalence. Autism is the black hole of health issues.
In 2006, we had the promise of a bill called the Combating Autism Act – CAA1. It allotted an extraordinary amount of money and while it didn’t cover everything we needed, like services, safety and lifespan care, it was a good start. And then, as with many bills in Washington, it all went wrong. The final version didn’t “combat” anything, except out hopes. It set up useless committees like the Interagency Autism Coordinating Committee (IACC) who have done nothing but waste time and money and set good research back 20 years. It’s been nothing short of a debacle.
In 2011, the CAA was reauthorized2, called CARA – Combating Autism Reauthorization Act. Sadly, still it helped no one, except maybe genetics researchers and pharmaceutical companies. 8 years and $1.65 Billion later, not one case of autism has been prevented. Not one new treatment has been created. No waiting lists were removed for adults. Not one actual COUNT of people with autism has even been done. $1.65 Billion and we have nothing to show for it. Nothing.
Unfortunately, the CAA legislation has been reintroduced this week3 as a straight reauthorization. No significant changes, just more money for more of the same nothing.
That isn’t good enough. Not again.
A few months ago, a bunch of national autism organizations started talking about CAA and we decided to work together in a new way. Over the years, all of us had dedicated countless volunteer hours to legislative and advocacy efforts but it’s always been ad hoc events as we all have children with autism, most of us have day jobs and many of us are flat broke after treating our kids. Due to these limitations, we haven’t been terribly effective, no matter how hard we tried. We vowed this time it would be different. The political landscape was different, we were more settled, more experienced and the CAA was coming up for reauthorization again. It was time to work together. There are many good, existing models to follow and pursue for the autism community.
And this time, there would be no settling for scraps. As I’ve always said of autism legislation – soggy potato chips are not better than no potato chips.
The Autism Policy Reform Coalition4 – APRC – was created out of a great group of volunteers. Its mission is to educate public officials and to encourage legislation that will make a measurable difference in the lives of the people with autism and their families. We represent over 100,000 families and are made up of these national groups:
Autism is Medical, Defending Academic Integrity and Research Foundation, Generation Rescue, National Autism Association, SafeMinds, Talk About Curing Autism, The Autism Trust and The Thinking Mom’s Revolution.
Over hundreds of phone calls, we outlined what we felt wasn’t working in the current CAA legislation and what else we wanted to be covered that wasn’t included at all, like safety and services5. We chose models that we knew worked for other health issues and with advocates who were involved in the original CAA legislation on board, we were able to create a workable policy paper. We hired a lobbyist6, who was also part of the original CAA team, a Public Relations firm, and have had meetings with the most influential members of the Senate and Congress who will be dealing with CAA’s reauthorization to lay out our concept of a more responsible use of government funding leading to new treatments, appropriate medical care, and proper epidemiological counts so we can quantify what services and funding are needed throughout the lifespan.
I have been pleased to work on this team of professional volunteers, on behalf of TACA, and am very excited about our ability to influence the legislation to help all people with autism and their families. We’re ready for more. For better.
Please take a few minutes to read the APRC mission5 and policy paper on the APRC website at http://www.autismpolicy.org and sign up to stay updated on our efforts.
Our kids, and yours, deserve better than soggy potato chips. We hope you think so too.
1 2006 CAA https://www.govtrack.us/congress/bills/109/s843
2 2011 CARA https://www.govtrack.us/congress/bills/112/s1094/text
3 2014 CARA http://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=379715
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