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

INDIANAPOLIS — Shaunna Thompson was running out of childcare. Her daughter Abbie was kicked out of daycare in 2022 for “all over the place” behavior. Thompson found a home caregiver for the toddler, but was told Abbie was “too much” to watch 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 aimed at improving communication, social and motor skills — at a local facility in northern Indiana for 40 hours a week. Abbie, who was nonverbal most of her life, has since said her first word: “Mom.”

“It brought tears to my eyes,” Thompson said.

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

Indiana's Family and Social Services Administration said the cost of Medicaid reimbursement for the behavioral health treatment, commonly called ABA, has skyrocketed in recent years because of the growing number of children seeking the services and the amount providers have billed the state . The state plans a universal hourly reimbursement rate for the therapy, but the planned amount is lower than what providers have previously received on average.

Advocates and centers worry this will mean fewer patients will be accepted or even have to close, as has happened this year in other states, such as Colorado.

“Companies kept leaving and it became kind of a crisis situation,” says JJ Tomash, head of an ABA provider in Colorado called BehaviorSpan. He blamed Medicaid reimbursement rates, which have not kept pace with the cost of living.

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

Indiana Act for Families, a coalition opposing the new rates, says 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 Although Indiana has said the new rates are in line with wages in other states, the coalition argued the state used outdated data in their comparison.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 the rates will be reviewed every four years, a time frame that 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 services under Medicaid in 2022, the state said.

With a standard patient-to-therapist ratio of 1 to 1, ABA is an “extremely staff-intensive model,” said Hodge. Across the state, he expects staff wages and benefits will come under pressure, which he said could lead to high staff turnover and inconsistent care for patients.

Hodge predicted that his center will have to admit fewer patients on Medicaid because of the changes.

The Indiana agency that oversees Medicaid said therapy was the only major service category that did not have a uniform reimbursement rate, and that the rising costs of services were unsustainable. According to the agency, ABA spending has increased more than 50% annually over the past three years.

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

The move comes at the same time states are eliminating pandemic-era protections that kept millions of people under 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.

Total enrollment in Indiana has fallen every month since.

States set universal rates, but low rates jeopardize access to important services for people with disabilities, said Jennifer Lav, senior attorney at the National Health Law Program.

Lower rates at a time of high inflation could lead to workforce turnover and shortages, problems that could be exacerbated in rural areas, she said.

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

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

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

In Westfield, a suburb of Indianapolis, 29-year-old Natasha Virgil said her family's ability to participate in outdoor activities improved significantly when 6-year-old Elijah Hill started ABA therapy.

“The most important thing is to make sure he has a chance to live in this world and have the skills to survive,” Virgil said, as she held her four-month-old daughter and watched Elijah play with soap bubbles near the family rooms. Christmas tree.

It's already difficult for parents of children with disabilities to hold down a job between countless therapy sessions and doctor appointments, Virgil said.

“I don't think I could ever be where we are today if we didn't do ABA,” she said

Chanel McClure, mother of two-year-old King, said she has lost sleep over the upcoming change. She interviewed multiple centers before finding the ABA therapy she wanted for King. He was on a waiting list for another eleven months.

Now almost three, King is nonverbal and in speech, occupational and developmental therapy. Since starting ABA, McClure said he has learned new ways to communicate and has become comfortable playing with other children. His therapists work to address elopement or wandering, which is common in children with autism.

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