This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.
It was the time of day when I generally start to fade. The sun was setting, and I felt certain that my family, like most others, was probably sitting down to dinner right about now. Ron Marcellus, autism dad, and co-chair of the insurance committee of the Vermont Autism Task Force, and I were the final, weary two, sitting in the empty gallery of the Vermont House of Representatives in Montpelier.
It had been a marathon of a day. The autism insurance bill (S. 262) that we had been working on for months was destined to be sent to the place lawmakers send things when they don’t have the wherewithal to say “No”…
But Ron and his fellow Vermont advocates weren’t ready to give up just yet. So they made one last heartfelt push, and found a group of receptive legislators in the Vermont House Health and Welfare Committee. These dedicated stakeholders worked the halls of the capitol all day, educating legislators, spouting the numbers, personalizing the need, hoping for a miracle. After staying as long as they could manage, they had to get home to their families.
And so here we were. Just Ron and me, sitting in the gallery, waiting anxiously to see what the future held for S. 262. When our moment finally arrived, we both leaned forward and held our breath.
Would enough of the legislators understand the need for this sort of legislation? Would they understand it from both a fiscal and moral perspective? Would they truly recognize the discrimination? Would they believe in the potential of people with ASD? I swallowed the lump in my throat. Only time would tell.
The Speaker agreed to have a roll-call vote, which would require every representative to announce their vote aloud for the record.
“Good.” I thought to myself, “I want to be able to hold those accountable who vote against us.”
Ron and I glanced at each other as we heard the first vote. “Yes.”
And then another …“Yes.” And another … “Yes.”
I looked over at Ron, and saw the tears streaming down his cheeks.
And right then and there, I stood up. And I looked at Ron and told him to stand up too.
So we stood, shoulder to shoulder. One autism mom. One autism dad. Watching, waiting, wiping away tears.
We stood up straight, knowing the legislators down on the floor of the chamber couldn’t help but see us there.
One by one, as they cast their votes, they looked right at us. Some cried with us. Some smiled. They knew we stood there doing our best to represent the families who struggled to obtain coverage for even the most basic treatments for their loved ones with autism.
It was a moment, as an autism mom, and as a member of Autism Speaks’ Government Relations team, that I will never ever forget.
They saw the need. They weighed the evidence. They digested the numbers. They thought about their constituents.
They felt the momentum.
When all was said and done, they all voted “Yes.”
The same scenario is playing out in state after state across the country, as Autism Speaks works with advocates and legislators to pass meaningful autism insurance reform legislation.
In 2007, three states (Indiana, South Carolina and Texas) had laws in place requiring health insurance to cover autism treatment. Three years later, the landscape has changed dramatically. For years, determined parents of children with autism (like Ron Marcellus of Vermont, Mike Wasmer of Kansas, Josh Cobbs of Iowa, Bill Bolster of Missouri, Kirsten Murphy of New Hampshire and Anne Gregory of Kentucky) worked the halls of their state capitols, educating legislators, personalizing the need, hoping for a miracle.
Legislators from both sides of the aisle have decided to be more than mere supporters, but rather champions for the cause. Scott Rupp of Missouri advocated passionately on the Missouri Senate floor. Senator Daryl Beall of Iowa spoke poignantly about his grandson and inspiration, Drew.
So far, in 2010 alone, governors in Kentucky, Kansas, Iowa and Maine have signed autism insurance bills in their respective states. Bills in Vermont and Missouri are sitting on their governor’s desks, awaiting signature. And many, many states are working actively on similar legislation. To learn which ones are, please visit http://autismvotes.org/stateinitiatives.
Three years ago there were three states requiring health insurance to cover autism treatment. Now, there are 19. And soon there will be 21. And before we know it, the majority of states in the country will have meaningful autism insurance reform legislation on the books.
Lawmakers will see the need. They will weigh the evidence. They will digest the numbers. They will think about their constituents.
They won’t be able to help feeling the momentum.
And advocates and stakeholders will stand shoulder to shoulder, thankful for the progress.
Proving it’s about time …
Time for lawmakers to listen.