Some suburban parents claim that Illinois is one of the only states not following the federally-mandated law requiring coverage for their children who have autism.
Sharon Binion El had to quit her job to be able to provide constant supervision to her 6-year-old Ashun.
"I have taken an 80 percent cut in my finances because I have to be with her now," she said.
Binion El relies on Medicaid for health insurance now, but there's one big problem: Despite a federal mandate, autism advocates like Pete DiCianni say Medicaid in Illinois is not paying for autism treatment, leaving children with autism without the services they need.
"Every state around us has complied. It's a federal mandate," he said.
DiCianni's daughter Brianna is the namesake for a state law passed in 2008 that forced private insurance companies to pay for autism treatment like applied behavior analysis. The treatment has helped Brianna to the point that she's fully integrated into her high school and even plays team sports.
Josh Marchetti's form of autism is so severe that the 14-year-old wears a diaper and is non-verbal.
"It's not that we're looking for handouts to help our citizens because when they turn 21 or 22, what are we gonna do with this population?" said Josh's mom, Beth Marchetti.
These parents have tried to help other children with autism and their parents by lobbying state lawmakers and the governor to get the state's Medicaid program to comply.
"It would make a world of difference. I could actually get the support services to help me maintain her, to help me help her better," Binion El said.
Advocates are prepared to go to court over this issue, but that process could take years when, they say, every day counts in treating a child's autism.
Illinois Medicaid defies federal mandate, denies services to kids with autism, advocates say
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