On the Road to Autism Insurance Reform: Are we there yet?

This summer, my family and I did a lot of road-driving.  We drove on one of the most beautiful roads I’ve even been on – the Kancamagus Highway in New Hampshire. We drove on a road that seemed interminable – I-95-North, from South Carolina to Massachusetts. (This drive permits a large quantity of “Are we there yets?”)  We drove a ridiculous number of toll roads, which this southern girl found frustrating and expensive.  We drove a winding, scary road to the top of Mt. Washington in the White Mountains and then promptly affixed a kitschy “This Car Climbed Mt. Washington” bumper sticker to our SUV.

In some states, the road to autism insurance reform has been all of the adjectives above.  In Hawaii, last week we celebrated the passage of autism insurance legislation, and the opportunity to gather with families, partner organizations, legislators, and more reminded me just how winding, scary, lengthy, frustrating, expensive, and beautiful the road was that led to this summer’s enactment of the 42nd autism insurance law.

Autism Speaks hosted a celebration breakfast to honor some of the extraordinary people who worked for 4+ years to pass the legislation.  In fact, the road to autism insurance reform began even more than four years ago, as an autism insurance bill was debated at least as far back as 2008.  But Autism Speaks’ serious involvement started about 4 years ago, and during that time, we have been blessed to work in a collaborative partnership with several local organizations.  Last week’s celebration included friends from the Autism Society of Hawaii, Easter Seals, Hilopa’a, Hawaii Autism Foundation, the Hawaii Disability Rights Center, the Hawaii State Council on Developmental Disabilities and others.

We honored four legislators who have become true champions for autism insurance reform and for the autism cause generally.  Senator Josh Green chaired the Senate Health Committee and conducted behind-the-scenes negotiations with the health plans to reach a compromise everyone could live with.  Senator Rosalyn Baker chaired the Senate Commerce and Consumer Protection Committee and also carried, as primary sponsor, the behavior analyst licensure bill that also passed this year.

Lorri Unumb presents award to Sen. Roz Baker.

Representative Angus McKelvey played a key role as chair of the House Consumer Protection Committee and was a steadfast supporter for several years.  And, last but not least, Representative Della Au Belatti chaired the House Health Committee and fought to make the legislation as strong as possible for the autism community.

Rep. Belatti, right, with the Pinnow family.

We also honored the Hawaii Association for Behavior Analysis, whose members were crazy-awesome advocates for our bills!!  They baked blue cookies and bought blue wardrobes; they started a wildly successful “Malama our Keiki” social media campaign in support of the cause; they held up signs in traffic and got news coverage for the bill; and they were ever-present for every single legislative hearing (of which there were many in Hawaii).

Although numerous families helped bring the issue to the attention of the legislators and the public in general, one mom and son became the face of the campaign. We honored mother and school teacher Geri Pinnow for her selfless, raw, passionate advocacy and her teenage son Luke Pinnow for his amazing self-advocacy.  Many of us watched Luke grow and mature — in his testimony and otherwise — over the last four years, and Luke now never meets a microphone he doesn’t love.  The entire Pinnow family, including dad Nathan and sister Emma, who made many-a-legislative trip of her own, enjoyed the breakfast celebration.

Lastly, we honored our lobbying team from Ashford & Wriston.  For Mihoko Ito, Gary Slovin, Tiffany Yajima, and Mike Kido, representing Autism Speaks was clearly more than a job.  They embraced the mission as their own.  They served as a hub to keep the entire autism community cohesive. They experienced the joy with every committee passage and cried real tears with us during the years our bill didn’t make it.

Mike Kido, Mihoko Ito, Lorri Unumb, Tiffany Yajima

Our lobbying team’s compassion was on full display at last week’s breakfast celebration as they launched a special campaign in honor of Luke Pinnow.  Hawaii’s autism insurance bill is named “Luke’s Law,” but unfortunately, due to political compromise and negotiations, it won’t offer any benefits to Luke. The bill as passed requires coverage only through age 13, and Luke is 15.  The Pinnows knew this, of course, and continued their advocacy – taking days off of work, missing school, driving to the state capitol over and over at their own expense – to lobby for passage of the bill. It’s not the first time an autism insurance bill has been named for a child who doesn’t benefit under the law, and it’s not the first autism parent to give selflessly of their time and talents for the greater good. But it moved our lobbyists in such a way that they set up a “Go Fund Me” campaign to raise funds toward some treatment for Luke. Within the first 2 days, the fund –  http://www.gofundme.com/alohaforluke — had raised $ 1200 of its $ 5000 year-end goal. What a thoughtful gesture by our lobbying team for a wonderful family, and what a testament to the autism community! Many of us are in financial straits trying to fund treatment for our own children — or trying to dig out of debt from having done so — but we still do what we can to help one of our own.

To the people of Hawaii, congratulations on Luke’s Law, and mahalo for riding with Autism Speaks on that scary, winding, frustrating, lengthy, and beautiful road.

 

 


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