SPRINGFIELD — It’s been a decade since Illinois became one of the first states to pass legislation mandating private insurers cover the cost of autism diagnosis and treatment in children, and legislators are looking to expand that coverage.
House Bill 2845, which requires state Medicaid managed care plans to cover autism diagnosis and treatment for those under 21, passed unanimously out of the House Mental Health Committee Thursday morning.
The bill’s sponsor, Democratic state Rep. Deb Conroy of Villa Park, praised the committee’s bipartisan effort to move the bill toward full debate in the House, calling it an “incredibly important” moment in fixing the state’s mental health parity issues.
Laid out in both federal and state law, “parity means that anything mental health related needs to be covered the same as any other part of your body,” Conroy said. “We’re talking about our brains. Insurance has to cover issues of the brain.”
But children with autism on Medicaid often lack even the diagnosis that would allow them to start treatment in the first place, said Patti Boheme, co-chair of the Illinois Autism Task Force who has worked with autistic children for more than 37 years.
“You can go down one of two roads with autism,” Boheme told lawmakers at Thursday’s committee. “One is where, if you get an early diagnosis and apply behavior analysis (therapy), it will change the outcome of your life.”
Boheme told the story of an autistic child she worked with named Mitchell, who could only speak eight words at the age of three. After his early diagnosis and treatment with applied behavior analysis therapy – one of the most common and effective forms of treating autism – he went to college and graduated with an aeronautical degree.
The other road was explained by Pete DiCianni, co-chair of the autism task force who championed the original legislation in 2008, which was named Brianna’s Law after his daughter. He referenced an Oak Park mother who had to put her child on Medicaid after her husband had a stroke and couldn’t work.
“On Medicaid the child didn’t have access to the intensive therapies he really needed,” DiCianni said. “So the family had the worst decision – they had to institutionalize their son.”
Such institutionalized care, said DiCianni, costs the state about $180,000 per person every year.
“That’s a lifelong commitment for the state at a very high and expensive rate,” DiCianni said, “and a crushing thing for a family, for a child that could have been rehabilitated but didn’t have the right care.”
Illinois is one of only eight states that lacks mandated coverage for autistic children on Medicaid. While the bill’s sponsor says there is “no opposition” to changing that, it’s unclear where the bill’s funding will come from considering how expensive ABA therapy can be.
“With ABA, you’re not getting one hour a week,” Boheme said. “You’re getting anywhere from 10 to 30 hours a week, and you need qualified clinicians to do it. So the number of hours alone is why this is so expensive.”
Conroy agreed with this assessment, adding that the primary challenge for the bill is “budgetary – figuring out what we can actually do within the budget.”
But DiCianni gave two reasons he’s hopeful for funding.
The first is that any dollars the state puts toward Medicaid services are matched by the federal government. With state reimbursements for behavioral analysis therapy costing about $84 an hour, that means the state only puts up $42.
The second is that autistic children who receive ABA therapy before the age of four and up to the age of 10 have a high likelihood of going to typical schools and colleges and joining the workforce afterward, Boheme said.
“So our goal is to invest early. You may have to spend some serious money in the first two or three years,” DiCianni said, “but now we have a rehabilitated kid that you’re not spending money on later on. And it’s a much more humane philosophy, and good government.”
Conroy, the sponsor, said she spoke Wednesday with representatives of the Illinois Department of Healthcare and Family Services, which administers healthcare coverage for Illinoisans with Medicaid, and they said the department is not opposed to the bill.
The governor’s office gave a statement to Illinois Public Media in late February expressing support for strengthening the state’s mental parity laws.