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." Read more North Carolina stories here.
The best part of my job is meeting amazing autism families all around the country. During my time in North Carolina recently, I have heard so many inspirational stories from all corners of the state, and I want to share them during these last few weeks of the legislative session. Each day, I will share a post written by a North Carolina family who is working to help pass autism insurance reform this year. Some of these families desperately need coverage for their own child; some of them are working solely for the benefit of others. These people inspire me every single day. CLICK HERE to contact your local lawmakers.
Meet the Marsch Family
As I have said many times, I am very lucky. Laura and I have been married for over 22 years and live in beautiful Winston-Salem, North Carolina. Our son, Harrison, just turned 16, and he loves school, computers, and classic Nickelodeon cartoons. He is 6’5” and devilishly handsome. Probably, the worst thing he does is stay up late to sneak computer or TV time when he should be asleep.
At age 2, Harrison was diagnosed with autism. We didn’t feel lucky then. We didn’t know the odds then of receiving an autism diagnosis. (Today, the odds are 1 in 58 births in North Carolina). At the time, autism seemed so unlikely – it was unheard of among our family and friends. I kept hoping that the diagnosis was incorrect. Sure, Harrison didn’t speak, avoided eye contact, and failed to respond to his name, but he had reached so many milestones listed in the “What to Expect” books. Plus, he was a whiz at puzzles and the computer at age 2 ½. By 3, he was arranging letters in alphabet puzzles to spell favorite words. By 3 ½, he was correcting my spelling and grammar.
But the autism diagnosis was correct. During this time, we took take Harrison to Johns Hopkins’ Kennedy Krieger Institute, who confirmed the diagnosis of autism. The doctors also suggested that he had hyperlexia, a perplexing diagnosis typified by precocious reading and spelling abilities coupled with little-to-no speech and language and learning issues.
So, we definitely had an autism diagnosis, but we were lucky. We lived in Winston-Salem where local families, doctors, and therapists before us had plowed a fair amount of ground for treating the deficits of autism with Applied Behavior Analysis (“ABA”) therapy. For Harrison, some of the most troubling deficits were in socialization, elopement, self-help and hygiene, and pica. Translated for people who don’t live with autism, those deficits looked like this: Our child simply could not tolerate being in play group, a store, or a restaurant. He would wail, sometimes until he just passed out from the sensory overload. He often just walked off – away from Mom and Dad, out of the house, even into traffic. Potty training was unsuccessful, and some of his behaviors were very unhygienic. He compulsively ate dirt and other crud from the floor.
Early on, we contacted trained therapists to perform ABA therapy with Harrison, as the doctor prescribed. The ABA therapy targeted these and the other deficits of his autism. He is 16 now and still has ABA therapy every day at a center-based program, the ABC Child Development Center. We are lucky to have that resource in Winston-Salem. With ABA therapy, he has overcome most of the deficits of his autism to a degree that we had not thought possible. He is sociable and happy. He can clean and dress himself. He stays together with us for safety. He enjoys dinner in a fancy restaurant. And he is the most popular kid in his class. Still, he doesn’t speak. He communicates by signing and by using a speech program called Proloquo2Go on his iPod. He is going to sleep-away camp next week (Camp Royall near Pittsboro).
Luckily for us, my job has always enabled our family to afford treatment for Harrison. (I am a lawyer and now Sr. VP & General Counsel for Krispy Kreme Doughnuts). ABA therapy has been expensive, and insurance paid for none of it -- even though our doctor prescribed ABA therapy and it is well-recognized as the most effective treatment for autism. Insurance companies simply “exclude” coverage for ABA autism therapy. Most everyone outside of the insurance industry finds this fact amazing and stupefying. So, we pay out of pocket, and our cost for ABA treatment has been between $30,000 and $45,000 a year. (As the therapy has been successful, the cost has continually come down because Harrison requires less treatment).
Most of the North Carolina families affected by autism aren’t so lucky. They pay their medical premiums, are shocked to learn that ABA coverage is “excluded,” and don’t have the financial resources to treat their child. For them, it is very unlucky to live in North Carolina, which is one of the few states where insurance companies aren’t legally prohibited from “excluding” ABA autism coverage. The autism insurance provisions in a bill waiting for Senate action (S493) would change that.
Thirty-seven (37) States, the District of Columbia, and the U.S. Virgin Islands have enacted legislation to require medical insurance coverage for ABA treatment prescribed by a doctor. They passed that legislation principally because it was the fiscally responsible and conservative thing to do. The cost of letting autism go untreated is intolerable. A 2007 Harvard study concluded that there is a societal cost of $3.2 million per child over his or her lifetime if their autism goes untreated. Looking at the issue as a businessman and tax payer, I don’t believe that the State of North Carolina should press its luck by hoping that the situation will simply solve itself.
With the odds stacked against them (1 in 58 births, remember?), the North Carolina Senate needs to follow the lead of the North Carolina House and pass S493. But there is serious concern that the Senate will not even bring the matter to a vote, despite polls showing 82% approval for this legislation. The North Carolina bill has exemptions to protect small businesses and has no impact on the State budget or tax payers. The costs to the State were taken off the table last month when the State Employees’ Health Plan approved an autism insurance benefit for ABA therapy that will begin coverage for State employees January 1, 2015. (We’re all happy that State employees will have coverage, but we need this bill for other North Carolina families). The bill also remedies an Affordable Care Act issue raised by some early opponents. And, the bill would close a gap that prevents North Carolina military families from having autism coverage.
Thanks for reading my story about luck and for understanding that I tell it to illustrate that luck should have no bearing when it comes to receiving medically prescribed therapy, fairness from your insurance company, or fiscal responsibility for the State. Then, contact your Senator to let him or her know that S493 needs to become the law in North Carolina.
Winston Salem, North Carolina