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On the Road to Autism Insurance Reform - 10 Years

Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform." 


I write today from Concourse B at the Atlanta airport, which feels way too much like home. I travel a lot for my job with Autism Speaks, and I rarely stop to reflect on our progress over the last 10 years.  But today, as I read the Autism Speaks release on the advocacy-related accomplishments of the last decade, I must pause, reflect, enjoy, and take some time to appreciate the accomplishments the autism community has achieved in the policy world.

It has been my privilege to lead the State Government Affairs department at Autism Speaks since its inception.  For our first decade, we have chosen to laser-focus on autism insurance reform, notwithstanding the plethora of important issues we could have attempted (and are often asked) to tackle.  Years ago, we decided to try to accomplish one goal really well rather than spreading ourselves thin on multiple issues.  When I look at the Top Ten Advocacy list that Autism Speaks put out today, I have to say that I’m excited about the progress in the states:

·       Changing laws in 38 states to ensure meaningful coverage for autism treatments

·       Working with self-funded companies, which are by definition exempt from state law, to get them to voluntarily add meaningful autism coverage

·       Setting the stage so more than half of the states were able to include autism treatment in their health plans created under the Affordable Care Act

·       Creating the Autism Speaks Insurance Link to help families navigate insurance coverage

·       Establishing the Autism Speaks Legal Resource Center as a mechanism to enforce autism insurance and Medicaid laws

The State Government Affairs team at Autism Speaks includes Judith Ursitti (Director), Mike Wasmer (Director), Kate Johnson (Legislative Assistant), and Charles Dulaney (Legal and Compliance Administrator), and we have been ably assisted over the years by Shelley Hendrix (Director of Grassroots Development) and now by Ali Dyer (Assistant Director of Grassroots Advocacy). (And I have to give a shout-out to the advocate extraordinaire who started government relations at Autism Speaks, Elizabeth Emken, and our friend Peter Bell, who managed the team for a few years.) Our small team could never have succeeded in our goals without the support of Autism Speaks’ founders, Bob and Suzanne Wright, as well as the in-house staff who work hard every day to raise money and make our jobs possible.  We also could not have accomplished our goals without the many donors who have supported Autism Speaks over the decade.  Our jobs require us to travel – almost daily – to various state legislatures and agencies around the country, and we could not do that without the financial support that Autism Speaks and its donors allow. For that, we are truly grateful!

As we celebrate the end of our first decade and approach the next, we are on the cusp of potentially even greater accomplishments.  Not only are we working to ensure that the 12 states that don’t yet have autism insurance laws pass them (almost there, Mississippi!) and working to expand coverage among the states that passed partial coverage the first time around (stay tuned for news from Virginia!), we are also on the verge of helping to achieve consistent coverage for doctor-recommended autism treatments for all Medicaid-eligible children across the nation!  This is a lofty goal, affecting millions of children, that we have been pursuing behind the scenes, and sometimes in front, for many years. And we hope to make it a reality before Autism Speaks turns 11!!

As I sit at the airport on a short reminiscing layover, my thoughts turn to the network of wicked-smart and tireless parent volunteers who work with us around the country. Mike, Judith, Shelley, and I were parent volunteers for autism political causes in our own states before we became employed by Autism Speaks. We know and appreciate the sacrifices you make to advocate for the cause and the greater good.  Our favorite part of the year is gathering in person with you – today’s generation of parent volunteers -- at our annual Autism Law Summit. We can’t wait to do so again this year to celebrate your 10 years of progress!!

Autism policy and legal reforms are taking place at lightning speed through the United States and the world. We still have a long way to go, and we’re still passionate about getting there.  But today we pause, celebrate, and thank you for helping us make it this far. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.