Proposed new Medicaid rule hurts children with autism, providers say

Medicaid torn newspaper headline on cash

Florida health care officials were told Friday a proposed new Medicaid rule governing applied behavior analysis (ABA) services for children with autism runs afoul of federal law and would have catastrophic consequences on the clients who require the services.

The Agency for Health Care Administration (AHCA), which administers the Medicaid program, is proposing the rule changes for ABA services provided outside of the Medicaid managed care setting, as the state struggles to hold down the costs of the services and ferret out program fraud.

But ABA providers attending the Tallahassee rule meeting warned the proposed changes are counterproductive and go too far. Those changes include not reimbursing for any ABA services provided at recreational, leisure, or educational camps or during extracurricular activities for the purpose of participation in the activities.

Jennifer Bellotti, executive vice president of Full Spectrum ABA in Odessa, said an underlying principle of applied behavior analysis is “generalization,” or looking at behavior changes and implementing interventions across the client’s various environments.

“We go where the child, or where the client needs us. And so, to take away access to schools, to community settings, we are significantly limiting the impact we can make on these children,” she said.

Diane Donahue, the co-founder of Treasure Coast ABA, said her 20-year-old autistic son attends college and even plans to bring his girlfriend home for Easter. He is on the path to success, she said, because she and her husband put a second mortgage on their house to ensure their son got the early intervention services he needed.

She said a registered behavior technician — an ABA paraprofessional — met him at school and taught him how to run cross country. A board-certified behavior analyst helped her son break down the tasks required to drive.

“Let these guys develop life. They are one in 35. One in 35 kids have got to fit into our world and that’s what this science does,” she said. “Do your job and think about them as humans.”

Applied behavior analysis is a therapy based on the science of learning and behavior, according to Autism Speaks.

AHCA announced in 2018 that the costs of applied behavior analysis therapy to the state more than doubled from 2016 to 2018. The agency put the blame on unqualified providers rendering unnecessary services. The actual amount of fraud was never released by the state, however.

The Centers for Medicare & Medicaid Services (CMS) granted the state a temporary moratorium on new ABA provider enrollment in Miami-Dade and Broward counties. Florida also requires ABA professionals to be credentialed by the Behavior Analyst Certification Board. AHCA is lifting the moratorium on ABA Medicaid enrollment in May.

The proposed new rule also requires the parent or guardian of an autistic child to participate in every treatment session.

“We are explicit in our requirement for parental or guardian participation,” said Tim Buehner, a behavioral health program administrator for AHCA who was explaining the rule. “Again, the research is clear that parental involvement is associated positively with treatment outcomes, and we want to be clear as an agency and funding organization that parental involvement is an important component of treatment.”

But ABA providers say the proposed changes will adversely impact working families who rely on day care for young children or after care for school-aged children.

“If a parent has to be required to be in every single session, some of these parents have to now choose between going to work or allowing their child to receive treatment. There is no pathway from getting underneath the Medicaid,” said Marta Tiki Fiol, president of the Florida Association of Behavior Analysis.

Karen R. Wagner, a behavior analyst and mental health counselor who practices at Behavior Education Center and Behavior Services of Brevard, said the parental requirement runs afoul of CMS rules and isn’t allowed.

The proposed rule also bans ABA services from being provided by an “autism specialty school” and students who receive an ABA service individualized education plan, or IEP.

Michelle Castanos, board-certified behavior analyst and the executive clinical director at the South Florida Center for Behavioral Health, had concerns with both of those provisions.

She noted that Gov. Ron DeSantis is a proponent of school choice but argued the proposed change is at odds with that position.

“By us now saying you get to choose what school you want to go to but if it’s an autism specialty school you can’t get service there, that’s limiting services for kids,” Castanos said. “And it’s discriminatory toward those kids whose parents feel like it’s in their best interest to go to these schools.”

A former public schoolteacher, Castanos asked why an IEP was required, noting it can take up to 18 months before the paperwork is finalized and an IEP is ultimately granted.

“What is it that we are trying to limit or what is it you guys are trying to target with this?” she said, asking whether the goal was to ferret out fraud.

“I’m in South Florida, I know there are fraud issues. I know what’s going on. I see it all the time. And I know what you guys are trying to do, and I agree with it. But I also don’t think taking out all of these services to limit the cost of it is going to be what helps a lot of kids. At the end of the day, it’s the kids that are actually receiving services that are going to be limited.”