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On The Road to Autism Insurance Reform: Already a Great Year!

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." 

 

2015 is shaping up to be an extraordinary year on the road to autism insurance reform . . . and in our pursuit of other state legislative initiatives.

In the last week alone:

  • A bill to expand coverage under “Ryan’s Law” – South Carolina’s landmark 2007 autism insurance law – survived two major hurdles to pass the South Carolina Senate, coincidentally on the last day of Autism Awareness Month. Hundreds of autism families wrote and called their senators to achieve this passage on the last possible day to make South Carolina’s crossover deadline. The bill, S.135, removes the age 16 cap on behavior therapy, eliminates the $53,000/year cap, and extends coverage into the individual and small group markets.

 

 

  • North Carolina, where we have worked for years on autism insurance legislation, passed a bill through the Senate in time to make the 2015 “crossover” deadline – the date by which a bill has to pass from one legislative chamber to the other.  The work continues in the NC House, where a couple of language tweaks are needed, but passage in the Senate is an important first step worth celebrating.

  • The Hawaii legislature passed an autism insurance bill (S.791, Luke’s Law) on the last possible day, which was a huge victory and relief given that our bills made it to the last day in 2013 and 2014 but then failed.  The last two years have been heartbreaking for Hawaii families, which makes the victory this year even sweeter.  Persistence pays off!  The Hawaii legislature also approved a bill to license behavior analysts, which we suggested in order to smooth implementation of insurance and Medicaid coverage of ABA.  And Hawaii put money in its budget specifically for Medicaid coverage of ABA.  And it passed ABLE legislation!  What a year, Hawaii!!  (Our ABLE efforts continue to take off around the country, but that merits a whole separate post!)

 

 

  • And last but not certainly not least, the governor of Georgia, Nathan Deal, signed into law a long-awaited autism insurance bill (SB.1), making Georgia the 41st state to require autism insurance coverage!  Georgia families have been fighting for more than 5 years for enactment of this bill, known as “Ava’s Law” after Ava Bullard, whose mom, Anna, has been a fixture at the Georgia State House since 2012.

 

 

 

 

As I reflect on these hard-fought victories, I am struck that none of the children for whom these laws are named actually benefit directly from these laws.  Under Luke’s Law, Hawaii’s ABA coverage will extend only through age 13 (as a result of political compromise), and Luke is 15.  Yet his mom, Geri, has taken many days off from her job as a school teacher to bring Luke (and sometimes daughter Emma) to Honolulu for hearings and lobbying.  Ava in Georgia has benefitted so much from ABA that she no longer needs services. She has been her own effective advocate in the Georgia legislature. My own son, Ryan, in South Carolina, has insurance written in another state because my husband and I both work for Autism Speaks, which is headquartered in New York.  Bob D’Amelio in North Carolina has been traveling to Raleigh for years to advocate, even though his son Christopher is covered under Bob’s self-funded policy, which is, by definition, not subject to state law.  And yet, these families and many other non-affected families pour blood, sweat, and tears into their advocacy, because they know how much these laws will help autism families who are in desperate need.  They know the heartbreak of being unable to provide your child the therapy recommended by the doctor, only because you can’t afford it. They know an adequate amount of quality intervention can be completely life-changing for a child with autism.

The work continues in 2015, and we try not to count our chickens before they hatch. But these victories are worth celebrating now. Congratulations to the autism families and providers in Georgia, Hawaii, South Carolina, and North Carolina for these recent victories, and let’s not forget South Dakota and Mississippi, who already celebrated 2015 autism insurance enactments.  Ten years ago, insurance coverage for autism treatments was virtually unheard of, and today we’re looking at fewer than 10 states to go!

 

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.