The participants at last week’s “Autism Speaks to Washington” summit were almost as varied as the spectrum itself. Moms and dads, academics, health care providers, lobbyists, policymakers, and a host of others who care about individuals with autism gathered to call for action -- and everyone came away with a different experience.
For me, the summit was an opportunity to share my thoughts on legal reforms that are still needed as well as a chance to reconnect and celebrate with amazing advocates from around the country.
I began preparations to discuss our advocacy agenda a month ago, when I woke up from a dream with a vision for how to visually demonstrate the situation that autism families face when trying to access treatment for their loved ones. I dreamed a big spinning wheel – no, two wheels – that would show the game of chance families must play to determine if they can afford the care recommended by their doctors. I asked my husband if he could construct a large, standing, double Wheel of Fortune. Bless his heart – my husband did not say “no,” but during the course of the conversation we realized that some outfit might actually manufacture such wheels. We set to work designing a double-wheel that would show the 50 states on the big outer wheel and the various types of health insurance on the inner wheel. Only if you’re lucky enough while spinning both wheels do you get coverage for the treatments your child needs. Is that any way to dole out health care??? I look forward to bringing the wheel around the country in pursuit of meaningful autism insurance reform. (Let me know if your legislators still need to be educated about the autism health care lottery!)
As I looked around the auditorium last week, I was struck by the awesome strength and determination of the volunteer-advocates in the room. Laura Simonsen of Montana, for whose son “Brandon’s Bill” is named; Dianna Varady of Arkansas, who attended the very first, 12-person Autism Law Summit years ago; Arzu Forough of Washington, who has been carrying the torch in that state for years; Josh Cobbs of Iowa, who I am convinced has every legislator in Iowa on speed-dial. And so many more.
Working Capitol Hill with these advocates from all over the country -- who have become an autism family to me -- was an incredible experience.
The value of gathering for these types of events definitely lies in the strength and energy you absorb from the extraordinary advocates around you as much as the information that is disseminated.
One final note on my personal AS2DC experience. It’s not every day that one gets to be lampooned by a legitimate SNL cast member/US Senator. I had that privilege at the Summit dinner last week when Sen. Al Franken, who was presenting an award to Dr. Eric Larsson as “Provider of the Year,” mistook me for the token blonde trophy-holder. (In fairness, I was holding the trophy.) Dr. Larsson, in the one-liner of the night, informed Franken of his mistake, and the Senator promptly apologized. If only I had been quick-witted enough to say, “Don’t worry, It’s OK. I’m not offended. Because I’m good enough, I’m smart enough, and doggone it, people like me.”
[slideshow:2, order=top, width=585, height=480,||,img=|/sites/default/files/images/blog/josh-cobbs.jpg|||Lorri with Josh Cobbs of Iowa|,img=|/sites/default/files/images/blog/georgia-advocates.jpg|||With Georgia advocates Anna Bullard\, Callie Michael\, Judith Ursitti\, Megg Andrade\, Melissa Solares\, and Sandi Marcus||,img=|/sites/default/files/images/blog/cortez-roth-unumb-jacobson.jpg|||On the Hill with lobbyist Melissa Cortez Roth and volunteer Kristin Jacobson||,img=|/sites/default/files/images/blog/unumbs-ballentine.jpg|||Dan and Lorri Unumb on Capitol Hill with the very first sponsor of Ryan's Law\, Rep. Nathan Ballentine of South Carolina.||,img=|/sites/default/files/images/blog/senator-franken-lorri-unumb_0.jpg|||With Minnesota Senator (and former SNL'er) Al Franken]