DANVILLE, Ill. (WCIA) — Chris and Ashley Ohl continue to jump over hurdles in a two-year-long journey to find affordable access to the best-recommended treatment for their son with Autism.

The family spent countless hours on the phone and on the computer with insurers and healthcare providers in a series of highs and lows. But this story goes beyond any one health insurance company, revealing blockades to affordable behavioral healthcare built into state law, and a ‘healthcare desert’ for people with Autism in eastern-central Illinois.

The Ohls live right next to their farm in rural Danville. The couple described their only child — 5-year-old Weston Ohl — as a lovable, driven kid and a ball of energy.

“Oh, he’s a lot,” Chris laughed as he looked over at his son with a smile.

“We’d always noticed that he was having issues with sleep from when he was a baby and had the outbursts or the, you know, like the tantrums or he’d want to hit his head and things like that. And then the older he got, he never really came out of it.”

Weston’s patterned behavior is a part of growing up with Autism Spectrum Disorder, a diagnosis that altered the family’s lives for good, “because you just can’t plan for something like that,” Chris said. “You know, I mean, you see your buddy having kids and stuff all the time. You never even think of something like that.”

Weston was diagnosed when he was 3 years old.

The Ohls’ health insurance plan approved Weston for 30-hours a week with a home-based Applied Behavior Analysis (ABA) therapist in December after two years of insurance paperwork, evaluations, driving to doctors in Indiana and conversations with various specialists, all to find out how to best care for Weston without breaking the bank.

Weston and his therapist were connected by Applied Behavioral Mental Health Counseling, a New York-based social services organization. The ABA therapist, herself, is based out of Lafeyette, Indiana. She spends several hours a day in Danville with Weston, according to Chris.

“Just to kind of like intervene. And let us know that there’s a lot of people like us too, so that helps,” Chris added.

That safety net came crashing down 30 days later after Ashley’s employer switched their health insurance from United Healthcare to Blue Cross Blue Shield of Illinois for 2022. The therapist that was covered by the United plan is not in BCBSIL’s network of providers.

“We never seen it coming,” Chris said. “We thought, you know, ‘Hey we’ll just switch from one insurance to the other and go on with therapy even,’ and then it didn’t.”

He said he was looking at having to fork over around $3,000 a week to keep Weston’s therapist at the out-of-network rate. There was no choice, according to Chris, but to abruptly halt Weston’s treatment on February 1.

“That was a bad day,” he said.

Ashley said her son started to regress rapidly, and it seemed like all of his progress “was just going out the window.”

Holes in the drywall made by Weston’s fists — and his head — quickly became physical reminders of his behavioral healthcare needs.

“Everyone preached, ‘You need the ABA therapy,’ and we’re just like, ‘We’re trying.’ So it’s a little exhausting,” Ashley said.

Weston did get back on track three weeks later. Applied Behavioral Mental Health Counseling agreed to work with him while the back and forth with his family and their insurance company continued.

The next step was applying for Medicaid coverage through the state. Weston was approved for the plan which is also provided by Blue Cross Blue Shield through a contract the insurance company has with the state. Weston’s therapy should be covered by the additional Blue Cross plan, according to a booklet sent to the family when the Medicaid coverage was approved.

The catch is, the counseling company wouldn’t accept it.

“It should be a lot easier, and that’s unfortunate,” Chris said of the ongoing saga.

“It’s really hard to find that precise care in our area. And there’s no arguing that for sure.”

The barriers to that care go beyond insurance. A current directory of providers under the family’s employer-based plan through Blue Cross lists about 500 ABAs within 100 miles of the Ohls’ home.

However, a Board Certified Behavior Analyst (BCBA) oversees the treatment. Families with children with Autism have to find a BCBA first to be connected to an ABA. There are only 29 of them within that same 100-mile stretch and the closest is 40 miles away from the Ohls. The next closest provider would be a more than 70 mile drive away.

“I mean, you have to be realistic. I mean, you can’t be driving two hours to four-hour therapy, five days a week, you know, one way. You can’t,” Chris said.

Options for Medicaid customers in Illinois may be even slimmer due to a seemingly small amendment made to Illinois Public Act 101-10 which was first passed in 2019. It says “the treatment of autism spectrum disorder through applied behavior analysis shall be covered under the medical assistance program for children with a diagnosis of autism spectrum disorder when ordered by a physician.”

A State Plan Amendment (SPA) approved in 2020 “included an unexpected revision,” according to the Illinois Autism Task Force (IATF), which was formed under Illinois Department of Human Services to “improve services” for people with Autism in the state.

The amendment said BCBAs must also be recognized as Licensed Clinical Social Workers (LCSWs) or Licensed Clinical Psychologists (LCPs). “98% of the ABA provider pool in Illinois does not meet the requirements,” according to the IATF in its most recent annual progress report published in February 2021.

The report went on to say that only 26 of the BCBAs in the entire state met this requirement as of February 2020.

The Ohls did get some good news in the last week. Blue Cross sent a letter saying the family can keep their original therapist at an in-network rate until August 1. The temporary relief was a welcome sight for the Ohls, but the future is unclear all over again come the end of the summer. And they’ve yet to see a bill.