Several years after a Blue Ribbon Commission pointed out problems California parents face when raising a child with autism, they continue to be frustrated with the system.
"The problems families face are worse, not better; arriers continue to discriminate and refuse to provide coverage," Areva Martin, whose child is autistic, said.
One of the services health insurers often refuse to cover is ABA, Applied Behavioral Analysis, 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 cannot make them pay the bills related to this type of therapy.
"We believe they're exceeding their legal authority by trying to compel plans to pay for ABA, that we are not required to cover it under current law," California Association of Health Plans spokesperson Chris Bacchi said.
But just as the Select Committee on Autism was examining the coverage problems, the Department of Managed Health Care announced it has 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 they need now, while these legal and policy debates continue," CA Department of Managed Health Care spokesperson Maureen McKennan said.
Still, parents are not satisfied. They say it is hard to find ABA providers who are licensed.
"Networks have to be built; I shouldn't have to go out and define my network," Sally Brammell, whose child is autistic, said.
And parents, many of whom spend tens of thousands of dollars on ABA out-of-pocket, are also worried retroactive reimbursements do not go back far enough.
"If they are going to do retroactive funding, it should be the time of the grievance," Feda Almaliti, whose child is autistic, said.
It will take months to see if the settlement improves health coverage for families living with autism. If it doesn't, lawmakers have readied a proposal forcing insurers to cover ABA.