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Illinois Legislative Gaffe Has Kept Children With Autism From Benefits Of Proven Therapy

Five-year-old Braxton Lear pauses from playing on a tablet at a relatives house. His mother Shannon Lear has been very happy with the advancements he has made and hopes that funding will remain available for his autism therapy.
Derik Holtmann
Belleville News-Democrat
Five-year-old Braxton Lear pauses from playing on a tablet at a relatives house. His mother Shannon Lear has been very happy with the advancements he has made and hopes that funding will remain available for his autism therapy.

Editor's note: This story was originally published in the Belleville News-Democrat.

Braxton Lear is 5 years old and tall for his age.

He runs – not walks – from his scooter, to the swing set, and to the trampoline in his great-aunt’s backyard in Caseyville, about 12 miles east of St. Louis.

Braxton’s mom, Shannon Lear, asks him what’s his name, how old is he, and what’s her name. He answers.

“He couldn’t do that a year ago,” Lear said.

Braxton was diagnosed with autism around his third birthday. For the past year and a half, he’s been receiving autism behavioral therapy from the Hope Institute, which Lear said has completely changed his behavior and strengthened their bond.

In Illinois, private insurance has covered applied behavior analysis, or ABA, therapy for only about 10 years. Low-income families covered by Medicaid aren’t eligible for the service to be covered, even though ABA therapy is the only evidence-based therapy proven to help children with autism.

Lear, a single mom working as a certified nursing assistant and studying in a culinary program, said she was able to get Braxton into a program only because his pre-K teacher told her how to apply for a grant.

Their insurance wouldn’t cover the therapy, and Lear said she doesn’t know how long the grant will cover it.

“It does scare me a little bit, if the funding runs out,” Lear said.

Help might be on the way from Springfield.

Legislation filed in the Illinois House would free up millions of dollars in Medicaid coverage for autism treatment after a previous bungled attempt in 2019.

House Bill 16, introduced by Rep. Deb Conroy, D-Villa Park, would amend rules for the state’s medical assistance program to allow Medicaid to cover specific treatments for children diagnosed with autism spectrum disorder.

Evidence-based autism intervention

ASD is a developmental disorder that affects communication and behavior. Children and adults diagnosed as being on the autism spectrum can present a wide range of symptoms with varying intensity, from being non-verbal to establishing unusual and repetitive lifelong routines.

ABA therapy is one of the most widespread evidence-based interventions used to treat ASD and other disorders that affect child development.

The Autism Program of Illinois headed by the Hope Institute, worked with Conroy on HB 16 and has lobbied for behavioral therapy to be covered through Medicaid funds. Hope currently provides behavioral therapy to about 200 children diagnosed with ASD through private insurance.

“What we’re trying to do is get those children into treatment early. The studies show early intervention works, so if you get them at that 2 to 5 (age), then your outcomes are greater,” Hope CEO Clint Paul said in an interview. “It may be costly but that saves the state money on the back end, not having to pay special education tuition, private schools, to pay for residential placements.”

ABA Works

That early intervention seems to have worked for Braxton.

Before he started the therapy, Lear said, Braxton had some aggressive behaviors when he was frustrated, including biting hard enough to leave bruises and breaking some TVs.

“His behaviors were really bad,” she said. “He was fighting me and leaving bruises.”

Braxton’s therapy focuses on communication and behaviors. As he started to talk more and communicate more efficiently, Lear said he’s less frustrated, and his aggressive behaviors reduced. Now, she said there are times when he looks like he’s about to be aggressive, but he’s able to bring himself back down.

“He’s really excelled in a lot of areas,” she said. “ … He tries to be independent as much as he can.”

Mistake prevented IL Medicaid coverage

In 2008, embattled Gov. Rod Blagojevich signed a law the day after his arrest that mandated private insurance in Illinois cover the diagnosis and treatment of ASD, including behavioral therapy. Yet, despite a 2014 federal mandate that states cover autism treatment through Medicaid, Illinois was one of a handful of states that didn’t provide Medicaid coverage for behavioral therapy until 2019.

However, an error in implementation created restrictions on who could provide behavioral therapy, an obstacle that has functionally prevented Illinois’ Medicaid plan from covering behavioral therapy despite it technically being included in Medicaid spending on paper.

Each year, Illinois creates a budget for the upcoming fiscal year. The General Assembly enacts this budget into law through two bills: an appropriations bill that allocates all federal funds, General Revenue Funds and other state funds to various state agencies, programs and municipalities; and a budget implementation bill that establishes how those various agencies and programs will spend those dollars.

In the Budget Implementation Act passed in 2019, legislators included coverage for behavioral therapy in the medical assistance program, which administers state and federal funds from Medicaid and similar services to qualifying residents. Any changes in how Medicaid funding is being used must be included in a State Plan Amendment that is submitted to the federal government for approval, which is where the mistake occurred.

The Illinois Medicaid plan requires that a practitioner must be a Board Certified Behavior Analyst, or BCBA, and possess a second credential as either a Licensed Clinical Social Worker or a Licensed Clinical Psychologist in order to receive Medicaid funding for behavioral therapy. That plan was submitted to and approved by the federal government.

A notice from the Illinois Department of Healthcare and Family Services released in October confirmed that dual credentials would be required to receive Medicaid funds through the department for behavioral therapy.

But the Illinois Autism Task Force, based in the Illinois Department of Human Services, warned in a February letter to Gov. JB Pritzker and the General Assembly that “the dual credential requirement will result in devastating barriers to access.” That same letter said only 26 BCBAs possessed one of the other required certifications and it was unclear whether any of the 26 provided behavioral therapy.

Bill removes hurdle for low-income families

The Autism Task Force, in a 2020 meeting, claimed that $42 million placed in the state’s FY 2020 budget for behavioral therapy through Medicaid remained untouched due to the mistake.

Paul estimated there are about 3,500 ASD-diagnosed children under age 5 who are covered by Medicaid in Illinois.

The number of BCBAs in Illinois is around 1,400. While the 2009 law allows for BCBAs to provide behavioral therapy through private insurance, 98 percent of them cannot do the same through Medicaid, creating a significant monetary hurdle for low-income families of children with autism who cannot afford private insurance.

“We had the autism insurance law mandate many, many years ago, so all the private insurance companies like Blue Cross Blue Shield, Cigna, Aetna, all that have to cover behavioral therapy and they fund Board Certified Behavior Analysts,” Paul said

HB 16, which currently sits in the House Rules Committee with about five weeks of the General Assembly’s session remaining, would amend the Illinois Public Aid Code to allow for just a BCBA certification for Medicaid coverage of behavioral therapy starting on July 1, the beginning of the 2022 fiscal year.

According to Paul, this would allow The Autism Program of Illinois and other autism coverage networks in the state to drastically expand the number of children that can receive treatment for their autism.

“It’s really just making Medicaid parity with the private insurance side of things.”

Megan Valley covers education at the Belleville News-Democrat, a news partner of St. Louis Public Radio. She is also a Report for America corps member.