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Halfway There: A Personal Reflection on Autism Insurance Reform

April 20, 2011 37 comments

This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks.  She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.

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Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional.  Six years ago this summer, I sat down at this same kitchen table to write my own bill.  The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended.  I was tired of reading EOBs that deemed my son’s treatment “experimental.”  Or “educational.”  Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.

I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.”  As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.

I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses.   But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.

For two years we fought and negotiated and persevered.  We contacted legislators one by one and asked for 15 minutes to explain our situation.  We had no lobbyist, no money, and no organizational backing.  Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.

In the end, the legislators in South Carolina did the right thing.  They passed our little autism insurance bill – twice.  They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.

The law became known as Ryan’s Law, after my son.

In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey.  When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home.  The celebration was over, and we went back to our real lives.

At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states.  In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.

Ryan is now 10.  In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills.  In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.

Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts.  As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process.  What stands out are their stories:

  • The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.
  • The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.
  • The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.
  • The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.

I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts.  And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.

At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism.  To me, the autism insurance reform movement is a shining example of democracy at its finest.

Although we have now reached the halfway point, we have a long way to go.  Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage.  Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome.  Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws.  (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)

Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier.  As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law:  “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”


My Summer on the Hill with Autism Speaks

September 7, 2010 7 comments

This guest post is by Emily Walters, second year law student at George Washington University and summer intern for the Government Relations Department at Autism Speaks.

Every law student who begins a summer internship expects the usual: a lot of work and long hours in exchange for an experience to put on your resume. So when I was given the opportunity to intern in the Government Relations Department of Autism Speaks my expectations were those of any internship – another step on the staircase to my legal career.  But what I received from this summer far surpassed what I could have expected.

It started with a crash course in healthcare reform, disability rights, housing and transportation concerns, equal protection, biomedical research, and just about every area of law one can possibly think of.  It seemed daunting at first – who knew autism was such a crosscutting issue? But each day I learned more, and with the help and support of the Autism Speaks staff, the material fell into place.  Before I knew it, I was joining the advocacy efforts on the Hill – a both thrilling and terrifying notion for someone without prior Hill experience.

Throughout the summer I kept my family and friends laughing as I told them of my adventures at the Capitol (ranging from almost breaking a shoe as I climbed the steps for an important meeting, to nearly walking right into a Senator).  However, the reality of our work on the Hill was much more serious.  Each day was riddled with triumphs, disappointments, and unexpected compromises.  I quickly learned that the classroom theories of legislation and implementing change at the congressional level are nothing like the real life political world.  Lawmaking on behalf of those with autism is nearly impossible without people who are willing to pound the pavement and navigate the intricate networks of the Hill.  Under the leadership and talent of the Government Relations Department, some incredible strides were made for the autism community as we found ways through that web.

Although being on the Hill was nothing short of a rollercoaster ride, the most memorable moment of the summer came towards the end of my internship. I awoke with a message from a close family friend whose son has autism: “Being involved like you are, is just too painful for me. Thanks for doing it for the moms who are too busy fixing their kids, and can’t face anything else. Xo.”

I was completely overcome with emotion.  No, I didn’t singlehandedly convince every lawmaker to join our cause, or pass a bill on my own, but I was part of something bigger than me – the greater effort to change the lives of individuals with autism and their families.  And in those 90 days of a summer internship, I realized my life was changed in return.  I saw unwavering strength from Army moms fighting at home for the needs of their children with autism, while their husbands are fighting abroad.  I heard what integrity and eloquence really sound like, as I listened to individuals varying on the autism spectrum speak on a stakeholder panel before members of Congress and their staffs.  This summer with Autism Speaks, I saw true compassion and understanding, from every single person I met with who is involved in the effort to better the lives of individuals with autism.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org.

Emily with Autism Speaks' employee, Shawnie Keenan, at this summer's Autism Speaks 5K

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