For more than a year, KELOLAND investigates has been exposing the issue of children with autism falling through the cracks when it comes to getting a treatment proven to help the condition. In 2019, families of children with autism lost their insurance for Applied Behavior Analysis, because of a loophole in the law.
Then last fall, after a meeting with Governor Kristi Noem, Sanford Health Plan and Avera Health Plans voluntarily agreed to extend coverage in 2020, that is not required of them until 2021.
However, in our in our latest investigation into the issue, we’ve discovered that coverage for autism therapy still doesn’t apply to all policies.
A Sioux Falls family, whose child was just diagnosed in December, thought they purchased a policy that covered ABA. It turns out it didn’t.
When Kristina Fowler and Brandon Kurtz had their son Aiden in June of 2017, everything seemed normal. However, soon they started noticing that Aiden wasn’t reaching milestones for his age.
“It’s very hard. When he was really young he would say, ‘mamamama’ and then it just stopped. it was like a regression,” Kristina Fowler said.
Aiden began constantly biting his hand and had other behavioral issues. In December of 2019, he was diagnosed with autism and was recommended for Applied Behavior Analysis, the gold standard to treat autism.
“He got diagnosed December 2. We have the window for open enrollment in the marketplace. We do everything we thought we needed to do,” Brandon Kurtz said.
Aiden did qualify for Medicaid, which is accepted by LifeScape and offers ABA therapy. There’s just one issue, the waitlist to get in is more than a year long.
“This is proven through science that this therapy helps and kids can make a ton of gains if it’s given soon enough,” ABA Therapist Debbie Kindelspire said.
So the couple did some research and discovered that Behavior Care Specialists offered ABA, but only took private insurance. They went online to purchase a Sanford Health policy through the marketplace.
Fowler: We thought we’re fine. We’ve got the insurance that we need. And then in January, we got another phone call saying we do not actually have ABA covered.
Fowler: I have no idea.
Behavior Care Specialists is listed in-network for the Sanford Health policy, but ABA therapy is not covered.
“It was a punch in the gut. I felt like I was manipulated and lied to because why when BCS–the only therapy they offer is ABA– why would Sanford list them in that network if that’s not a service they cover,” Fowler said.
“And they may be in network for other things. They just aren’t in network for the ABA therapy, “John Snyder of Sanford Health Plan said.
Kennecke: And you haven’t really been able to get to the bottom of why?
Fowler: No, no. I spoke to them on multiple occasions and I keep getting the same answer. It’s not covered.
All insurance companies in South Dakota will be required to cover ABA on the exchange by 2021, but when the agreement to allow coverage in more policies was made last fall, it was too late to submit it for federal guidelines, leading to the confusion.
“It is confusing–what’s on exchange, what’s off exchange. People don’t understand the difference and how they access that,” Snyder said.
“It’s a shell game and they say they cover ABA, which maybe they do in some obscure policy, Kurtz said.
In the meantime, Aiden’s parents can only afford a couple of hours of therapy a week, which runs about $100 an hour. Plus they’re still paying hundreds of dollars a month for an insurance policy they can’t use for ABA.
Fowler: I don’t want anything bad to happen to my son. I want him to live a normal life.
Kennecke: And what should happen here?
Fowler: I want Sanford to do the right thing. All the insurance companies in our state should do the right thing and cover this therapy for our children.
Kennecke: They said they were going to.
Fowler: It’s not happening.
“If she’s on exchange and wants to look at a different policy off exchange, we’d be happy to talk to her and see if we can help her do that,” Snyder said.
Fowler tells us the option to switch policies was never offered until KELOLAND Investigates began looking into the matter.
We will continue to follow Aiden’s story and let you know what happens.
In the meantime, it’s important for all families to know that if they have a child diagnosed with autism, the recommended therapy will not be covered on any policies on the exchange until 2021.