Insurance Coverage for Autism: Who Pays for Treatment? | Interview with Lorri Unumb

ABA Therapy is critical and life-changing for your child or clients with autism, but insurance coverage isn’t always available and paying out of pocket is extremely expensive. When Lorri Unumb found out it wouldn’t be covered for her son with insurance, she decided to take matters into her own hands.

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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.

Lorri is both an autism mom as well as an attorney and she led the insurance coverage reform in the United States. Lorri’s firstborn child was diagnosed on the autism spectrum shortly before his second birthday and at that time she really didn’t know what autism was. She had heard the word, but that’s about it. When the doctors recommended ABA therapy, she had no idea what they were talking about. She barely even understood the concept of therapy.

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.

And then Georgetown called, they had been on the waiting list for all three. After talking to the doctors at Georgetown as well, Lorri just thought, since they’d been waiting that long, let’s get advice from all three different institutions. And now, she looks back and she thinks how fortunate it was that they did get advice from a variety of people because they all mentioned ABA therapy. Again, she didn’t know what it was, but she thought, since Georgetown mentioned this, Children’s mentioned it, and Kennedy Krieger mentioned it, let’s figure out what that is. After she brought ABA providers into their home to explain what it was and how it worked, and how there’d be people coming into the home, then came the cost of ABA therapy.

Again, her son is severely impaired so he really had been recommended for a very intensive program. Lorri and her husband were looking at a 40 hour per week program after doing the math, it would come out to be about $70,000 a year. Initially, you would think, thank goodness for health insurance coverage. You know, what would you do if you didn’t have health insurance and you got this diagnosis? She didn’t know that health insurance coverage would not pay for one penny of it. Her first concern was not, “oh my gosh, I’ve got to go change this law. Her first concern was, oh my gosh, how are we going to get this for Ryan?” Initially, she was just concerned about quitting her job so she could be home with Ryan, but then if she quits her job, how are they going to pay for the therapy?

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It’s a very difficult conundrum. And as a family, they ultimately decided she would not quit working and that her husband and she would both work full time. They would live on his salary and her entire salary would be used to pay for Ryan’s ABA. They did that for a few years, but Lorri could not sleep at night thinking about, “okay, so we have made it work because I’m a lawyer and I happened to make enough money and my husband makes enough money that we can live on his salary and fund an ABA program with mine. But obviously that’s a very small fraction of families that can just handle it that way.” Lorri knew from the Lovaas study, from researching online, that this wasn’t going to magically recover her son, but she knew that there was at least a 50% chance that he would do so well he might be mainstreamed in school.

Lorri explains, “I knew that I wanted him to have a shot at being one of the best outcome kids. And I kept thinking about, again, all the families where their children weren’t even in the pool of kids who had a shot at achieving the best outcomes because they couldn’t access the intervention.” The thing is that autism is a medical condition until it’s time for treatment and then it’s education and education is like, no, it’s not education, it’s medical and because it’s so expensive nobody wants to pay, with them it’s like a hot potato. Somebody else is going to have to pay for it. Because of this, when Lorri got to her boiling point that she was just so frustrated on behalf of the less fortunate really she thought about suing under IDEA to get better services educationally.

Lorri says, “I remember having a flip chart in my office and I kind of drew out all the systems. I’m like, education has a role to play. Healthcare has a role to play. State social services have a role to play. The family has a role to play. And I looked at all of those and I said, well, this group is trying, I mean, they’re not living up to the best standards, but they’re trying and this group is doing something. And I looked at the healthcare system and I said, well, they’re not doing anything in my mind. They were not contributing to intervention for autism in any way. In fact, they were doing the best they could to stay away from it with a 10-foot pole. So that really kind of focused my mind. I could spend the next few years suing under IDEA or we could look at the health insurance industry and try to figure out a way to get them into the mix again because they were just not helping at all.”

That was part of Lorri’s decision making on that front. Everybody just wanted nothing to do with it. And when she first started researching the health care component of it, she saw that Wisconsin had taken some steps to create funding. Maryland had and Pennsylvania had, and Massachusetts was funding it through the education system. California had the regional care system, but most people in the United States had no access.

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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