Parents of children with autism rally for transparency from state

AHCA releases revised policies for Medicaid-covered behavior analysis services

By Zachery Lashway - Reporter/anchor, Christine Sexton, The News Service of Florida

JACKSONVILLE, Fla. - Parents of children with autism, along with educators and behavior analysts, rallied Friday morning in Jacksonville to demand transparency from the state of Florida. 

The state Agency for Health Care Administration announced revised policies for Medicaid-covered behavior analysis services shortly after more than 50 people gathered outside the Department of Health building in downtown Jacksonville to voice their concerns about potential changes to the Medicaid program for Applied Behavior Analysis, or ABA, services. That’s a form of treatment commonly used with people with autism.

"What do we want? ABA all the way!" they chanted. 

The momentum outside the building spilled into the public hearing inside. 

"So please, when you’re looking at 1s and 0s on a budget, those are kids," one parent said.

Parents, caretakers, behavior analysts and teachers were among those advocating for children and people with special needs. 

"I have a 13-year-old daughter.  She has severe autism and she has been receiving ABA services for about five years," said father Asa Maass. 

He said he's afraid his child's ABA services could be in jeopardy if changes are made to the Medicaid program. 

"With Medicaid, the proposal for rolling back services essentially for reducing pay for ABA therapists is a trickle-down, of course, and it’s going to directly affect families and we are going to end up losing services," Maass said. 

According to Shevan Harris, with the AHCA, there is nothing being proposed that is intended to cut ABA services. Harris cited fraud within the system and asked those in attendance to come to the table with answers and solutions to the challenges the state wants to fix.

"We are going to cover a number of updates," Harris said. 

Harris said the state is listening and parents are talking. 

"Please don’t make it harder for them to get help," the parent said. "Please work with the providers, with families and let us get the support for our kids."

During her Senate confirmation process, AHCA Secretary Mary Mayhew made a surprise announcement that her agency was going to pull the plug on proposed rate reductions for behavioral analysis providers, who treat children with autism.

The announcement reassured some senators who were concerned that Mayhew, who earned the nickname "Mary Mayhem" during her tenure as a health care administrator while in Maine, isn’t the right choice to head the agency that's in charge of the state's $29 billion Medicaid program.

But Mayhew's feel-good Tallahassee announcement hasn’t trickled down to other areas of the state, where behavioral analysis providers and parents of autistic children have staged rallies, including the one Friday in Jacksonville.

Shortly after that rally, AHCA responded Friday afternoon by reiterating that “no changes to behavior analysis reimbursement rates will occur during 2019.”

It’s also delaying until Sept. 1 a requirement that behavior analysis provider groups hire a medical director. But the agency is moving ahead with changes -- on a “pilot” basis -- that will accomplish the goal of cutting costs.

The state is going forward with proposed changes for getting services authorized. According to an announcement, AHCA in July will begin using a multidisciplinary team model for authorizing behavior analysis services in Brevard, Orange, Osceola, Seminole, Duval, Flagler, Nassau, St. Johns, Volusia, Baker and Clay counties.

And, beginning Sept. 1, AHCA will move ahead with an electronic visit verification program for behavioral analysis services in Palm Beach, Broward, Miami-Dade, Monroe, Indian River, Martin, Okeechobee and St. Lucie counties.

Kate Sallade, a board-certified behavior analyst in Deltona, said that while she appreciates the announcement that the rates won’t be changed during 2019, she worries the state won’t agree to commit to walking away from the proposed cuts.

While the state is backing off reducing “rates,” that doesn’t mean payments won’t be affected, Sallade said. "Every change they have made has reduced what we can bill for,” she said.

When Mayhew announced earlier she wouldn’t reduce rates, she also made the commitment to hold additional meetings across the state on the issue. She has been true to her word.

Sallade, who has an autistic son, has been at those meetings and has reached out to concerned parents who, she says, haven’t been made aware of the public events.

“No one will know unless people like me drum up a lot of noise and really cause a ruckus,” Sallade told the News Service of Florida.

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