ABA Therapy is critical and life changing
for your child or clients with autism, but insurance doesn’t always cover and paying
out of pocket is extremely expensive. When Lorri Unumb found out and it wouldn’t be covered
for her son with insurance, she decided to take matters into her own hands. I’m Dr Mary
Barbera, autism mom, Board Certified Behavior Analyst, and bestselling author. Each week
I share some of my tips on turning autism around, so if you haven’t subscribed to my
youtube channel you can do that now. Today I’m sharing a small excerpt from my podcast
interview with Lorri Unumb in which we discuss her fall 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
and we talk about Lorri’s efforts in changing the law first in our home state and then throughout
the United States and why she decided to take action on a legislative level.
Yes, I’m so thrilled to have Lorri Unumb here. Lorri is both an autism mom as well as an
attorney and she led the insurance reform in the United States on through, tell us about
your fall into the autism world and how you get started and when that was and, and where
you went from there. Well, I like the way you phrase that fall into the autism world
because that, that’s an accurate description of how I started this journey. My first born
child was diagnosed on the autism spectrum shortly before his second birthday. And at
that time I really didn’t know what autism was. I had heard the word, but that’s about
it. And um, when the doctors recommended ABA therapy, I had no idea what they were talking
about. I barely even understood the concept of therapy.
We were very lucky. My husband and I met in Washington, D C we were both young lawyers
with the United States Department of Justice. I think we were lucky that we lived in the
Washington DC area because we had access to some really very fine diagnosticians and we
took advantage of 3 of them. I had been on the waiting list so long to get an appointment
that when I ultimately got 1, I think the first one we got was at Children’s National
Medical Center and we got, and how long did you wait for your first appointment? Months
and months. I cannot remember the exact, but it was many months. And you know, 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. It, there was really no question. They said
he has autism. Um, but then I think it was Kennedy Krieger that called next and we had
come up for an appointment and I said, well, let’s just go ahead and see if their doctors
agree and if they recommend the same thing. So we went for another diagnostic evaluation
and they said yes, this child has autism and gave us recommendations.
And then Georgetown called, we had been on the waiting list for all 3. So we went ahead
and talk to the doctors at Georgetown as well. And really I’m not just in nuerotic parent.
I just thought, you know, we’d been waiting that long. Let’s, let’s get advice from all
3 different institutes, institutions. And I look back and I think how fortunate it was
that we did get advice from a variety of people because they all mentioned ABA therapy. And
again, I didn’t know what it was, but I was like, you know, Georgetown mentioned this,
Children’s mentioned It Kennedy Krieger mentioned it, let’s figure out what that is. I, I recall
when we brought ABA providers into our home to kind of explain what it was and how it
worked and you know, how there’d be people coming into our home. And then we got around
to the point about cost. And again, our son is very severely impaired
so he really had been recommended for a very intensive program. We were looking at a 40
hour per week program and the ABA professionals just basically laid it out and I was doing
the math. I’m like, that’s going to be like $70,000 a year. And I remember turning to
my husband and saying, my gosh, thank goodness we have health insurance. You know, what would
you do if you didn’t have health insurance and you got this diagnosis. I didn’t know
that health insurance would not pay for 1 penny of it. My first concern was not, oh
my gosh, I’ve got to go change this law. My first concern was, oh my gosh, how are we
going to get this for Ryan? Right. Um, initially I was just concerned about do I quit my job
at so I could be home with Ryan, but then if I quit my job, how are we going to pay
for the therapy? It’s a very difficult conundrum. And we’ve
as a family ultimately decided I would not quit working my husband and I would both work
full time. We would live on his salary and my entire salary would be used to pay for
Ryan’s ABA. Wow. And we did that for a few years, but I gotta tell you, I could not sleep
at night thinking about, okay, so we have made it work because I 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 funded ABA program with mine. But obviously that’s a very small fraction of
families that can just handle it that way. I knew from the Lovaas study, from researching
online, I knew that this wasn’t going to magically, you know, recover my son or whatever, but,
but I knew that there was at least a 50% chance that he would do so well he might be mainstreamed
in school. I knew that I wanted him to have a shot at
being 1 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 best outcomes
because they couldn’t, they couldn’t access the intervention. Well, it’s not, you know,
it’s, it’s 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 because it’s so expensive nobody
wants to pay, with them it’s like a hot potato. Like somebody else is going to have to pay
for it. That’s exactly right. And, and when, when I got kind of to my boiling point that
I was just so frustrated, um, on behalf of the less fortunate really I thought about,
well, I’m a lawyer, maybe I should sue to, um, under IDEA to get better services educationally.
But I, I remember having a, um, 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 has 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, uh, 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. And 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. So that was, that was part of the decision
making on that front. But you’re absolutely right that everybody just wanted nothing to
do with it. And when I first started researching the health care component of it, I saw that
Wisconsin had taken some steps to create funding. Maryland had Pennsylvania had, but that was
well, and you know, Massachusetts was funding it through, um, the education system. California
had the regional care system, but most people in the United States had no access.
What point did you start advocating in other states? Right. Um, so, so initially I just
had the idea that I thought insurance should pay for ABA and, and whatever evidence based
treatment is recommended by a physician for autism. Um, and I had that when I was living
back in South Carolina and I researched it. I learned that insurance 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 ask 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. But after it
passed, um, I started that in 2005. It passed in 2007 and shortly after that autism speaks,
reached out to me and said, you know, we think that’s a really neat law that, 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, um, make that our mission to replicate that law
in all 50 states. I hope you enjoyed this short excerpt with Lorri Unumb. If you would
like to learn more about joining my online course and community, you can attend a free
online workshop at marybarbara.com/workshop. If you like this video, I’d love it if you
would share it with others. Give me a thumbs up, leave me a comment and I’ll see you right
here next week.