The Centers for Disease Control and Prevention estimates one in 110 children has an autism-spectrum disorder. The state of California took a major step Wednesday to improve their care.
Several years after a California Legislative Blue Ribbon Commission on Autism pointed out problems California parents face when raising a child with autism, they continue to be frustrated with the system.
"The problems that families face are worse, not better. Carriers continue to discriminate and refuse to provide coverage," said L.A. resident Areva Martin, mother of a child with autism.
One of the services health insurers often refuse to cover is Applied Behavior Analysis (ABA), an effective one-on-one treatment that helps children with autism learn to live happy and productive lives.
But insurance plans consider that "education," not a covered medical benefit, and say state regulators can't make them pay the bills related to this type of therapy.
"We believe that they've exceeded their legal authority by trying to compel plans to pay for ABA, that we are not required to cover it under current law," said Charles Bacchi, executive vice president, California Association of Health Plans.
But just as the California Senate Select Committee on Autism was examining the coverage problems, the Department of Managed Health Care announced it reached a settlement with Blue Shield and Anthem Blue Cross to begin covering ABA with a licensed provider. In some cases, there could be retroactive reimbursement for certain out-of-pocket expenses.
"The whole intention is to get patients the care that they need now, while these legal and policy debates continue," said Maureen McKennan, acting deputy director, Calif. Dept. of Managed Health Care.
Still, parents are not satisfied. They say it's hard to find ABA providers who are licensed.
"Networks have to be built. I shouldn't have to go out and define my network," said San Francisco resident Sally Brammell, mother of a child with autism.
And parents, many of whom spend tens of thousands of dollars on ABA out-of-pocket, are also worried retroactive reimbursements don't go back far enough.
"If they are going to do retroactive funding, it should be from the time of the grievance," said Fremont resident Feda Almaliti, mother of a child with autism.
It'll take months to see whether the settlement improves health coverage for families living with autism. If it doesn't, lawmakers have readied a proposal forcing all insurers to cover ABA.