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Autistic Children Face Medicaid Snags For Therapy

Gema Sosa helps 4-year-old Emerson White trace his name at the Creative Behavior Solutions clinic in Largo.
Daylina Miller/WUSF News
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.

When you step inside the Creative Behavior Solutions clinic in Largo, the first thing you notice isn't what you can see, it's what you can hear – the sound of children laughing, clapping and singing.

What appear to be teachers are leading pre-k aged children through sing-alongs and other activities.

But this space, with its little desks, fuzzy floor mats and walls lined with bookshelves stuffed with toys, puzzles and games, is not a school or daycare. It's a therapy clinic. 

In one corner, registered behavioral therapist Gema Sosa is helping 4-year-old Emerson White trace his name on paper. He flicks his tongue out periodically and sometimes flaps his arms. He gurgles more than he talks.

“Ready, set, trace!” she encourages him, while holding one tiny hand in hers to help him grip the pencil.

Emerson has Asperger’s and cerebral palsy. Like most kids his age, he's here to learn things like the alphabet and the names of shapes. But a therapeutic component is built in.

"He's learning how to focus his attention on things he should, like schoolwork, and he's learning to sit longer and to do better at his safety boundaries - like he could just run (into) the road if we let him,” said his mother, Jeane White.

Emerson has been coming to the clinic since last September for "Applied Behavior Analysis Therapy” - often shortened to A-BA.

He's one of about 3,800 kids who were partially or fully denied Medicaid for this treatment since the state in March clamped down on fraudulent billing practices.

While his paperwork -- which includes extensive documentation from doctors, therapists and more to prove he needs the therapy -- was being processed, Emerson couldn’t come to the clinic.

After his denial, his parents found a new way to pay for his therapy. But his mother says three weeks without it caused a behavioral backslide.

“Now he's kind of gone back,” White said.   

Karen Berkman, the executive director for the Center for Autism and Related Disabilities at the University of South Florida, said ABA is  widely used to help people with autism control harmful behaviors and learn to communicate better.

"We break down the task into each little step that we do so that we can create a very concrete step by step way of teaching a child a new skill and then reinforcing that skill so that it's more likely to occur again,” Berkman said.

The state says the 3,800 children who were partially or fully denied coverage don't need the ABA therapy. And it's not the only treatment out there.

There's speech therapy, horse therapy, art therapy and a number of other strategies to help these kids integrate into regular schools with neurotypical children. But none are quite as interdisciplinary as ABA, and Berkman says communication and behavior are intrinsically linked.

"This is something that is a direct teaching strategy that's needed in that child's life at that time to be able to help them learn other ways to get the message across,” Berkman said. “That has a very long history of being successfully done through ABA strategies."

The cost of ABA therapy to the state more than doubled from 2016 to 2018 as unqualified providers bilked taxpayers for unnecessary services under the purview of the state’s previous contractor– Beacon Health options.

So earlier this year, in an effort to crack down on that fraud, the state Agency for Healthcare Administration required Medicaid patients to reapply for coverage under a new contractor – eQHealth Solutions.

But some therapists say that process created a “limbo” in which many patients waited weeks or months to continue treatment while their new authorizations were processed.

Co-owner of Creative Behavior Solutions Brittany Harger said some of her patients, like Emerson, have also been outright denied, with vague explanations from the state explaining why their clinicians feel the therapy is no longer necessary for that child.

AHCA said it has no records of patients’ experiencing interruptions in treatment, that claims to the contrary are “untrue and misleading,” and that the wait time was at most twelve days.

In a statement to Health News Florida, the agency said the backlog has been resolved, with claims being processed in five days. Patients who need the services will continue to receive them, the agency said.

But some providers, like Harger, are worried that a new backlog will occur this month when the 41,000 children who were approved for treatment must be reauthorized. Medicaid rules require these children reapply every six months for treatment.

"We're worried about backlog,” Harger said. “We're worried about denials. We're worried about a lot of things coming through and we're not really able to get too much information from them."

State officials say they’re not too concerned, because only about 2,200 children are up for review. But Harker is skeptical.

“I’m not sure how that's right, as all plans terminated at the same time. Forty-thousand-eight-hundred authorizations divided by the six months they've been doing this, gives an average of 6,800 per month. All authorizations, according to the rules, are 180 days long,” Harger said. “Unless they are manipulating duration of authorizations or aren't expecting clients to continue their authorizations, I'm not sure how they got such a low number.”

Creative Behavior Solutions co-founder Adrianne Smith wants to make one thing clear: She knows the state had to make changes to fight fraud.

“However, we think there could be a better way that it was done," Smith said. "The people who are suffering are the good providers that are left and the kids. And this is all about the kids.”

Stacey Absher, a Clearwater resident, fears her 4-year-old grandson Elijah will again have to miss his therapy when he’s up for re-authorization.

Elijah missed three weeks of therapy earlier this year while the state processed his re-authorization paperwork. Ultimately, he was cleared to come back, but Absher said that was just enough time for him to stop talking as much, and slip into stimming -- behaviors like hand flapping, rocking, spinning, or repetition of words and phrases that help people with autism ease their anxiety.

“(The state) didn't seem to handle this very well, whatever they were doing with the re-approvals of everything” Absher said. “My hope is they have their act together this time after this mess that they had created.”

If there is another authorization bottleneck, the state will backdate any Medicaid reimbursements for children who are eventually approved. But that’s a big risk, Smith said.

“The problem is we don't have the cash flow to support these kids coming to therapy for two months straight and us not being reimbursed for it,” Smith said. "They might say no and then we're out that money. It's not fair to those families to have to pay out of pocket because most of them can't anyways. It's expensive.”

On average, Smith said, it can cost up to $40,000 a year per child to do ABA therapy.

The state says parents experiencing difficulty with the process can call AHCA at 1-877-254-1055.

Copyright 2018 WUSF Public Media - WUSF 89.7

Daylina Miller is a multimedia reporter for WUSF and Health News Florida, covering health in the Tampa Bay area and across the state.
Daylina Miller
Daylina Miller, multimedia reporter for Health News Florida, was hired to help further expand health coverage statewide.