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Lorri Unumb fell into the autism world with her two sons, one of which is on the severe end of the spectrum and one of which is very mild. Today I’d like to talk about Lorri’s efforts in changing the law first in our home state and then throughout the United States in regards to insurance coverage for autism and why she decided to take action on a legislative level.
Her family was very lucky though. Her husband and she met in Washington DC where they were both young lawyers with the United States Department of Justice. This allowed them to have access to some very fine diagnosticians and they took advantage of three of them. She had been on the waiting list so long to get an appointment and then she ultimately got one from Children’s National Medical Center. The whole waiting process took months and months. That seems like years when you don’t know what’s going on and you can’t get an appointment with somebody to tell you what’s wrong with your child. There was really no question. They said he has autism. Then it was Kennedy Krieger that called next and they had come up for an appointment and she said, “well, let’s just go ahead and see if their doctors agree and if they recommend the same thing.” So they went for another diagnostic evaluation and they said “yes, this child has autism” and gave her recommendations.
When asked about what point she started advocating in other states, Lorri explained, “Initially I just had the idea that I thought insurance coverage should include ABA and whatever evidence-based treatment is recommended by a physician for autism. I had that when I was living back in South Carolina and I researched it. I learned that insurance coverage is typically regulated at the state level. So this is something that had to be addressed at the state level. So I wrote a piece of legislation and asked a state legislator to introduce it for me in South Carolina. It was a very long, difficult 2-year battle to get it passed, but I really didn’t have my sights set on this grander kind of national reform movement. I was just trying to fix in my state what I knew was a problem, but I was doing it purely on a volunteer basis as a mom because I thought it was the right thing to do.” Lorri started that in 2005 and shortly after it passed in 2007, Autism Speaks, reached out to her and said “we think that’s a really neat law that you got passed down there in South Carolina. That’s good policy and that ought to be the law everywhere. So why don’t you come work for us and make that our mission to replicate that law in all 50 states.”
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