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Autism Insurance Reform: A Bill’s Survival Guide

Lorri Unumb, senior policy advisor and counsel for Autism Speaks, Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair, his son Noah, wife Tina, and daughter Sydney.

This is a guest post by Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair.

When Senate File1/House File 1, more commonly known as Drew’s Bill, was introduced in the Iowa Legislature in 2009, it was an unexpected gift.  The autism insurance reform bill, sponsored by Representative Ray S. Zirkelbach and Senator Daryl Beall, was one of the first pre-filed bills introduced in the legislature that year and we hoped that this early action was a good omen.  The Iowa autism community had tried many times in previous sessions to get a bill introduced with no luck. As it turned out, getting the bill introduced would be the easiest part of this long journey.

Just as quickly as Drew’s Bill was introduced, it was killed by the Senate Commerce Subcommittee.  That was a hard day.  I, along with so many other parents, families and advocates could not understand why legislators did not see the merit in our case for autism insurance reform.  Why did they not understand that requiring that health insurance companies provide children with autism spectrum disorders coverage of medically necessary, evidence-based therapies would not only lead them to live a better life now, it would also save the state money on special education services, institutionalization, and adult services later?  That same day advocates became intensely committed to working over the summer to educate legislators on why insurance reform was needed.

With the education underway, we went back to the Senate in 2010 to again make our case for reform.  This time, we were joined by several key players, such as Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks, Judith Ursitti, Regional Director of State Advocacy Relations for Autism Speaks, former Lieutenant Governor Sally Pederson, Senator Beall,  as well as many others that continued to help push for passage of reform legislation.  The first hurdle was the Senate Finance Subcommittee.  The Subcommittee hearing was an all day event.   By the end, we were exhausted, but elated with the unanimous yes vote to move our bill to the full Finance Committee.  With the momentum of the Subcommittee vote, we easily passed the full Committee and then the full Senate.  The autism community was ecstatic.  We could finally see real change on the horizon, but there were still hurdles to cross and the bill’s future was still in jeopardy in the House.

The Iowa House was deeply divided on the bill. HF1 was scheduled for a House Commerce Subcommittee hearing that would become one of the craziest days thus far in our push for autism insurance reform.  The day of the Subcommittee hearing, advocates packed the room.  We knew the bill was scheduled for a vote and that the fate of our effort lay in the hands of the Subcommittee members.  In the end, the Subcommittee refused to vote.  In doing so, they effectively killed our bill.  Even with all the momentum from the Senate passage, all of the education on the issue over the summer, all of the years of activism, hope and prayer from families in the autism community, the Subcommittee would not allow the bill to move forward.

Advocates refused to give up hope.  After going through so much, we just had to get something passed this year.   They say that where there a will, there is a way and for us the way was to include autism insurance reform in the Standing Appropriations Bill, Iowa’s version of the state budget.  Our legislative champions submitted the language and advocates began to contact their Representatives to secure it in the appropriations bill.  It worked!  In a press conference to announce the details of the final appropriations bill, a reporter asked, “what about autism?” Leadership responded, “Autism is in.”

Advocates and lawmakers agree that more work is needed to cover the entire Iowa ASD population. At this point, the bill will only cover state employees, but it is a good first step to give some families the help they richly deserve and begin Iowa on a road towards real and full reform. The passage of the Iowa bill is a testament to the persistence of families in the autism community and the determination of our legislative champions to provide help.   They refused to take no for an answer and did everything possible to ensure that our bill and our effort survived.

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 visitwww.autismvotes.org

  1. June 16, 2010 at 4:56 pm

    Just keep that thought – “Autism is in.” FINALLY. Thanks advocates for espousing the idea of fairness. ~ ANNE

  1. June 16, 2010 at 12:59 am

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