Home > Government Relations > The Day They All Said “Yes”

The Day They All Said “Yes”

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”…

Summer study.

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.

  1. Erin N
    May 18, 2010 at 12:14 pm

    WOW!! Thank you for sharing. I cried too! This is so important.

  2. May 18, 2010 at 1:31 pm

    I live in Canada, so I have all kinds of different issues with regards to the government and laws… but the end result is the same. The politicians and law makers must stand up and make a difference. They called the swine flu a pandemic when a few thousand people got it but Autism is up to 1 in 110 now?
    Insurance is a great step but there needs to be more. There needs more research, more facilities, more teachers, more teacher’s aids, more information in the clinics.. more, more, more because right now, there’s still too many unanswered questions.

  3. May 18, 2010 at 3:44 pm

    What a wonderful thing that is happening. I, too, cried and wish I could have been there with them. Hard to believe something positive is happening in government!

  4. May 18, 2010 at 5:14 pm

    Great post! I cried just reading this, as well as the day Missouri said yes. It was magical. Thank you for sharing not only how you felt but those great statistics, they are inspiring to say the least.

  5. felicia r.
    May 18, 2010 at 6:13 pm

    Thank you for your important work & for sharing this beautiful story.

  6. May 18, 2010 at 7:40 pm

    Wow! Moving narrative Judith. Hats off to Ron with the huge huge heart. If you don’t mind I’ll tweet this now and blab it all over (what I do best!) Best wishes and thank you from a VT citizen. Tipping my hat, giving a bow, thumbs up! ~ ANNE

  7. Tammy Loomis
    May 19, 2010 at 8:38 am

    There are many now and in the future that will benefit from all the hard work of Ron Marcellus and the VT Autism Task Force. THANK YOU!!!

  8. Liz Zurn
    May 19, 2010 at 10:03 am

    *tears* Thank you, Judith. You are such an advocate and inspiration to the rest of us Autism Mommies! I love it!
    Now, let’s send this to every member of the House and Senate for Virginia.

  9. May 19, 2010 at 10:10 am

    Yes, I cried too. Just thinking of all the frustration of having to keep contacting and fighting, year after year, for nearly the same things. Thinking of all the people before us who have contacted legislators with calls, letters, meetings in home towns, visits at the state house, etc. across all disabilities. And finally two parents, standing tall, hear a yes from all.

  10. Judith Ursitti
    May 19, 2010 at 11:03 am

    @Anne I just have to note that YOU were the one who approached your state rep who sat on the Vermont House Health committee to bring the bill back to life. A huge thanks belongs to you, my friend … :)

    • May 23, 2010 at 12:41 pm

      Nice of you to say Judith, thank you but what I say always for any great outcome it takes a lot of collaboration, whether its films, radio, or legislation. The gumption to pick up the stick and keep going comes from that commaraderie. I’m so glad we’ve all met , now lets finish the job (ie get all ages covered!) Best to you! ~ ANNE

  11. Jan Hancock
    May 19, 2010 at 1:57 pm

    Congratulations and thank you! Many families’ lives are better because of your courage, time and effort. Thank you for telling your story, and for making a positive difference!

  12. Sarah Conley
    May 19, 2010 at 9:41 pm

    Thank you, Judith, for all that you do to advocate on behalf of our kids. Now I’m crying for the 2nd time tonight after reading your posts here and on Autismville……you rock!
    Let’s go Massachusetts!!!

  13. PAULA
    May 19, 2010 at 11:43 pm

    PAULA :I feel that Autisum, Downs, By-poller, A.D.H.D., H.I.V. or crossed eyed or a person that stutters. These people need the support and respect as every one else, IF NOT MORE! YET they are treated with less respect or looked down at lower than a slug at the bottom of the ocean. Help make them equel. In Gods Eyes we are created the same. Thank you for all the YES’. Theis country supports the people that come from another country, lands we only dream,think of or learned of in our history books.AND THEY GET ALOT OF “WHAT THEY NEED” I SUPPORT THIS NEED!!!!!WITH PRIDE AND HONER.

  14. Sherry King Csatellanos
    May 21, 2010 at 3:00 pm

    I am reading this amazing story at work with tears streaming down my face. I pray that one day in the near future, I may be the author of such a success for the State of Georgia!

  15. D
    May 25, 2010 at 9:49 am

    All of these state laws don’t have the teeth they need. Lots of employers are not governed by state laws but by federal laws. I have worked in Texas and didn’t get coverage because my employer operated under federal guidelines. So until the federal government passes meaningful legislation I will have to continue to pay all of my child’s therapy out of pocket. It is approaching 120000 dollars in 3 years.

  16. Claudia Pringles
    May 25, 2010 at 10:50 pm

    Thank you for sharing your thoughts, Judith and for you incredible support and expertise in this area. I’ll always remember the insurance lobbyist walking away when he couldn’t argue with you:)
    I can’t thank all of you enough especially Ron and Lisa Erwin Davidson for carrying this from an idea in the fall of 2008 to a reality in 2010…AND, to Anne Barbano for jumping in at the right time to give the bill a second life. It really does take a few people to move a mountain.

  17. Lisa Erwin-Davidson
    May 31, 2010 at 10:53 pm

    What a ride the last few months. To hear Ron on the phone when we finally connected was…incredible. A friend in the legislature was leaving a message saying, “this is historic – I’ve never experienced this – what a moment!” You don’t know how bad I wanted to be there…well in spirit my friends, in spirit.
    Now, we gotta keep the fight going for the older kids…3 cheers for the team!!

  18. Emily Monteer
    August 4, 2010 at 10:52 pm

    Your stories have always been able to make me cry. Great job!

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