Dianna Varady is currently the Statewide Chapter Advocacy Chair for Autism Speaks in Arkansas, advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in Arkansas becoming the 24th state to enact autism insurance reform in 2011. Dianna has a son with autism.
What a difference six years makes. In July of 2005, my husband and I were in a meeting with our son’s treatment team when we were told very bluntly, “We think you’re dealing with an autism spectrum disorder here.” Difficult to hear, but exactly what I needed to pull my head out of the sand and get to work. I wanted answers….how did this happen and what do we do now???
It took us about three days to discover that we had a world-renowned autism researcher right here in Arkansas. Dr. Jill James at the Arkansas Children’s Hospital Research Institute was studying folate metabolism in children with Down syndrome when she accidently stumbled upon a significantly abnormal metabolic profile in one of her control subjects – a sibling of one of her study subjects who was diagnosed with autism. Pretty soon she had identified several more children with autism who had the same bizarre profile.
We contacted Dr. James right around the time her study was being published. At the time, she was presenting her findings to physicians and researchers around the United States and to her colleagues here at Arkansas Children’s Hospital. Pretty soon we had dozens of physicians and researchers interested in autism. Here in Arkansas, doctors from many of the specialty clinics were interested in conducting their own research. We had an abundance of talented and passionate professionals just waiting for an opportunity to put all of their new-found energy and enthusiasm around autism to good use. Then, in 2006, along came the Combating Autism Act (CAA.)
Thanks to the CAA, Arkansas now has an Autism Treatment Network (ATN) Clinic, where our developmental pediatric teams are identifying children with autism using state-of-the-art evaluation tools and contributing to a nationwide data registry. The same ATN team also recently held its second annual “Team Up” autism conference for parents, educators, and clinicians to learn from some of the most respected professionals in the field of autism. We have a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the University of Arkansas for Medical Sciences (UAMS), also funded through the CAA, that provides graduate students in a number of different disciplines the opportunity to work together on a multidisciplinary team. And, probably most exciting of all, the CAA has funded research here in Arkansas. An autism prevalence study is underway, and we have studies funded by CAA that are looking at diet, nutrition, physical health and quality of life.
One of the fringe benefits of the programs and studies provided through CAA funding is the way all this activity around autism has brought together a team of specialists at Children’s Hospital to develop an autism clinic with a geneticist, a gastroenterologist, and a neurologist. These three doctors collaborate with one another to provide top-notch care for their patients, and to improve the overall experience for families in their clinic. For our family this has been a godsend. Many of the answers we were seeking in 2005 have been found thanks to these dedicated and compassionate doctors.
Naturally, being an Arkansas native, I’m proud as a peacock of all this activity right here in my back yard. But the CAA is scheduled to expire September 30, jeopardizing continued federal funding for many of these activites. That’s why it’s CRUCIAL for Congress to move quickly and approve the Combating Autism Reauthorization Act (CARA.) If not, all of this research and these advancements in the field of autism could disappear. And so could our hope for a cure.
This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.
This is a guest post by Dianna Varady, the Statewide Advocacy Chair for Autism Votes.
On March 4th, 2011, Governor Mike Beebe signed Arkansas HB 1315, “AN ACT TO PROVIDE INSURANCE COVERAGE FOR AUTISM SPECTRUM DISORDERS” into law. Just like that our bill became Arkansas Act 196 of 2011. A friend of mine from another state posted on my Facebook page, “Wow, you made that look easy!” which sent me into a fit of hysterical laughter.
We began this journey in 2007, when my son was three years old with just a handful of moms and dads trying to do our best for our children. It’s a no-brainer, right? Who on Earth would believe that insurance should NOT cover treatment for children with autism? As it turned out, a surprising number of people did but we were not surprised to learn that most of them worked for the Insurance industry – twenty-five lobbyists representing one private insurance company alone! As soon as our bill showed signs of viability, the industry assigned every available lobbyist to defeat our bill – then hired a few more for good measure.
Fortunately in this case, parents of kids on the spectrum can be stubborn. We marched down to the Capitol every year for four years. We quickly learned that our tiny group of parents couldn’t get the job done alone.
In 2009, Autism Speaks through their Autism Votes Program, offered to support our effort. With their assistance we built a solid grassroots base. Soon families from all over Arkansas were organized under a structure of Advocacy Chairs in each region of the state who prepared and motivated our volunteers.
Late in 2010, we met with our legislative champions, Representative Uvalde Lindsey and Senator Maryanne Salmon, to develop the policy for the 2011 Session. I’ll never forget the email Representative Lindsey on February 3rd when he filed HB 1315. There was nothing in the body of the email, just four words in the subject line said, “Let the fight begin.”
Indeed, the fight was on.
For someone like me – unfamiliar with politics outside of this effort – it felt like an epic battle. The opposition was mighty – their efficacy stunning. Many legislators who initially appeared supportive of HB 1315 began to switch sides in a bizarre game of “keep away” where the insurance lobbyists tossed balls of confusion to every possible governmental entity. They advised legislators to seek funding for these treatments through Medicaid, Department of Human Services, or the Department of Education deflecting their responsibility to reimburse their policy holders for evidence-based treatments – and they were succeeding.
Keeping the conversation focused on the merits of our bill was like whack a mole. Every time we got one thing under control another issue popped up. So we rallied the grassroots troops we had worked so hard to grow and added a lobbyist to our team to keep constant vigil at the Capitol – alerting us to the first sign of trouble.
This 3-part team – grassroots, legislative champions, & lobbyists – finally put us over the top. I firmly believe that each component was equally vital for our success. Without one of them, we probably would have failed. If we were losing ground at the Capitol or if a particular legislator was mounting an offensive against us, our lobbyist would sound the alarm then we would send an alert around the state to start burning-up the phones at the Capitol. I have to confess that, while I’m proud of our success in passing the bill, I’m more proud of how this community united to make this a reality.
As it happened, it gave our legislators something to be proud of, too. When HB 1315 went to the House floor, I was surprised by a legislator we had never even spoken to who rose to speak in favor of the bill. He made an impassioned plea for his fellow House members to join him in voting YES. After the vote I went downstairs to introduce myself and to thank him. This was a man who had no stake whatsoever in this fight. He knew no one with autism. After I thanked him, his eyes misted up a bit and he said to me, “I only wish I had remembered to say what I went up there to say in the first place, which is that I believe this is the most important vote I’ll cast.” I’ll cherish that memory forever.
So for those who have yet to pass a law, how does it feel to finally cross the finish line? Relieved. Happy. Elated. Tearful. But most of all – PROUD. Proud of Representative Lindsey and Senator Salmon who believed in us and fought so hard and long for our children. Proud of every legislator who supported us all the way through despite intense pressure from some very powerful and influential people. Proud of legislators who may have wavered at some point but did the right thing when it came time to cast their vote.
Most of all, I’m so proud of every single person in every corner of Arkansas who answered our calls to action flooding Capitol with phone calls, faxes, and emails. It was proof positive that when the community comes together in a focused effort, amazing things can happen. After four years of effort , with a unified, focused community, Act 196 took only a record 29 days from the day it was filed until the day it was signed into law.