Families say autism therapy helped their kids. Indiana’s Medicaid cuts could put it out of reach

INDIANAPOLIS — Shaunna Thompson was running out of child care options. Her daughter Abbie was expelled from daycare in 2022 due to her “all over the place” behavior. Thompson found a home care provider for the little girl, but was told Abbie was “too much” to care for her every day of the week.

The experiences motivated Thompson to seek help for her daughter, who was also missing developmental milestones. Abbie, now 3, was diagnosed with autism spectrum disorder in October last year.

In March, Thompson enrolled her in applied behavior analysis (a learning- and behavior-based therapy focused on improving communication, social and motor skills) at a local facility in northern Indiana for 40 hours a week. Abbie, who hasn’t spoken for most of her life, has since said her first word: “mama.”

“I got tears in my eyes,” Thompson said.

But Thompson and other families who rely on Medicaid fear the changes coming in January will limit access to the therapy as Indiana tries to cap the cost and, along with other states, reduce the size of the low-income health care program. .

The Indiana Social and Family Services Administration said the cost of Medicaid reimbursement for behavioral therapy, commonly known as ABA, has skyrocketed in recent years due to the growing number of children seeking the services and the number of providers They have billed the state. The state plans a universal hourly reimbursement rate for the therapy, but the planned amount is less than what providers have previously received on average.

Advocates and facilities fear this will mean accepting fewer patients or even closing, as has happened in other states like Colorado this year.

“Companies kept leaving and everything became a crisis situation,” said JJ Tomash, who runs an ABA provider in Colorado called BehaviorSpan. He blamed Medicaid reimbursement rates that have not kept up with the cost of living.

Medicaid began covering the services in 2016, and Indiana providers set their own rates until now. But the centers say the new rates are still not enough to keep them running and are well below the previous state average of $97 an hour.

Indiana Act for Families, a coalition that opposes the new rates, said the proposal is 10% below providers’ operating costs. Although Indiana has said the new rates are in line with wages in other states, the coalition argued that the state used outdated data in its comparison.

Miles Hodge, owner and co-founder of Shine Pediatric Therapy in Indianapolis, said the effects of the new fees will take their toll over time. The state said rates will be reviewed every four years, a time period Hodge said does not keep up with inflation.

“It could leave a lot of people underwater,” he said.

About 6,200 children and young adults received Medicaid services in 2022, the state said.

With a standard 1-to-1 patient-to-therapist ratio, ABA is an “extremely staff-intensive model,” Hodge said. Statewide, he expects staff salaries and benefits to be affected, which he says could lead to high turnover and inconsistent patient care.

Hodge predicted his center will have to accept fewer patients who have Medicaid because of the changes.

The Indiana agency that oversees Medicaid said therapy is the only major service category that did not have a uniform reimbursement rate and that the rising cost of services was unsustainable. ABA’s expenses have increased more than 50% annually over the past three years, according to the agency.

In 2022, ABA claims accounted for $420 million in Medicaid spending, the state said. Total Medicaid spending in state fiscal year 2022 was more than $16 billion.

The move comes as states eliminate pandemic-era protections that kept millions of people covered by Medicaid. In Indiana, the number of people enrolled in Medicaid grew steadily each month from March 2020 until May 23, when the federal budget law ended protections.

Indiana’s total enrollment has decreased every month since then.

It is common for states to set universal rates, but low reimbursements jeopardize access to key services for people with disabilities, said Jennifer Lav, senior staff attorney at the National Health Law Program.

Lower rates at a time of high inflation can lead to staff turnover and shortages, problems that can be exacerbated in rural areas, he said.

ABA is not without its critics. Zoe Gross, advocacy director for the Autistic Self-Advocacy Network, said the goal of ABA is to eliminate behaviors considered autistic and teach children to adapt to neurotypical behaviors.

“It teaches you that the way you naturally behave is not okay,” he said.

But families who have found it useful find it difficult to imagine a future without access.

In Westfield, an Indianapolis suburb, Natasha Virgil, 29, said her family’s ability to participate in activities outside the home improved markedly once Elijah Hill, 6, began ABA therapy.

“The most important thing is to make sure he has a fighting chance to be able to live in this world and have the skills to survive,” Virgil said, holding his 4-month-old daughter and watching Elijah play with soap bubbles near the family house. Christmas tree.

It’s already difficult for parents of children with disabilities to maintain jobs between numerous therapy sessions and doctor appointments, Virgil said.

“I don’t think I could ever be where we are if we didn’t continue with ABA,” he said.

Chanel McClure, mother of 2-year-old King, said she has been losing sleep over the pending change. She interviewed several centers before finding the ABA therapy she wanted for King. She was on the waiting list for another 11 months.

Now almost 3, King is nonverbal and attends speech, occupational and developmental therapy. Since he started ABA, McClure said he has learned new ways to communicate and feels comfortable playing with other children. His therapists are working to address wandering or wandering that can be common in children with autism.

“King just blossomed like a flower,” McClure said.