INDIANAPOLIS — According to the CDC, one in 36 children in the U.S. have autism, up from the previous rate of one in 44.
With that increase comes a larger need for therapies and services.
One family that has been navigating access to resources for years is Marisa and J.J. Grover. Their 19-year-old son, J.R., was diagnosed with autism when he was five-years-old.
They say J.R. didn’t start making progress until he started applied behavioral analysis therapy, also called ABA therapy.
Before the therapy, every day activities were a challenge for J.R.
“Without basic communication skills, his life would not be what it is today,” Marisa Grover said. “He sat in a chair, and they gave him an M&M. By the end of the week, he learned how to sit in a chair.”
Most patients going through ABA therapy take part in it anywhere from 30 to 35 hours a week. The therapy focuses on positive reinforcement to help kids navigate their environment.
The therapy helps kids with autism learn how to communicate verbally and sometimes nonverbally. However, the therapy comes at a cost.
Medicaid first began covering the service in 2016. Prior to this change, families like the Grover’s had to take out a private insurance policy that would cost $900 a month plus a $10,000 deductible.
Over the last three years, reimbursements for ABA therapy have increased by more than 50%.
For 2022, ABA claims payments represented a Medicaid expense of $420 million. Those funds helped provide ABA services for 6,200 children and young adults.
Now, the Family and Social Services Administration is looking for a way to cut costs.
“It’s going to totally devastate the community if these rates get decreased to a wage that’s not fair and equitable,” Grover said. “It needs to be fair and equitable in order for people to stay in the business.”
Currently, Medicaid covers 40% of whatever the provider submits to them.
Now, FSSA is trying to standardize the rate to about $55 an hour. That rate is something over 40 legislators on both sides of the aisle think is too low. They sent the following letter to Gov. Eric Holcomb asking him to reconsider.
Democratic representative Garcia Wilburn knows first-hand how vital this therapy is. She has worked with the autism community in the past.
Wilburn worries these cuts could change the quality of life for those with autism.
“As a director of therapy who spent two years working in an autism center, I am deeply disappointed in the FSSA proposal to cut families’ ability to provide this sound and proven therapy for their children with autism,” Wilburn said. “Decades have shown that ABA therapy is effective in improving quality of life for people with autism. Anything but sufficient reimbursement is harmful.”
Republican State Representative Robb Greene’s son went through three years of intensive ABA therapy, which he says changed his life.
“Everybody on all sides of this issue understand that this is something we need to address to protect access to ABA,” Greene said.
As for providers, that reduced rate means they could see less money coming in and patients could have fewer opportunities for access.
“The environments that they may be forced into, they are not going to be ready for,” Paige Garcia, Area Clinical Director of Adapt for Life Autism Services and ABA Therapy, said. “Schools and other facilities they may have to go into because they were cut short of the services that they really deserve and need.”
Before FSSA submits the proposed rate to the Centers for Medicare and Medicaid services, the state budget committee must review it.
The review is expected to take place by the end of October.