For two years, Feda Almaliti pushed for comprehensive treatment for her son. Kaiser diagnosed his autism, but she says offered minimal assistance beyond that.
"You feel helpless, like you can't help your child, and you feel like they have the key to helping your child and you just can't get through the door," said Feda.
Feda challenged her insurance company and won. An independent medical review by the state found the treatments she wanted for her son like speech therapy, occupational therapy, and ABA, applied behavior analysis, are medically necessary and Kaiser must now pay for them.
"I absolutely think it's going to open the floodgates and I think it's just going to bring this financial avalanche they never expected," said said Feda.
Advocates like Kristin Jacobson, with the Alliance of California Autism Organizations and Autism Speaks, believe it's an issue all health insurers must address.
"The health plans are more than happy to accept the premiums and then turn around and say, 'But the responsibility of actually providing the benefits is for the school district, the regional centers or the families,'" said Kristin.
ABC7's Carolyn Johnson asked Dr. Sharon Levine about that. She's Associate Director of Kaiser Permanente.
"The costs are substantial and I think that's why a lot of people say, 'We pay premiums, why can't we get the care we're paying for?' asked Johnson.
"And we pay taxes, and the schools have traditionally said 'This is our responsibility, these are educational interventions,'" said Dr. Levine.
"That seems to be a way to duck and cover, and really put it all back on the taxpayer," said Kristin.
It's a contentious issue. Speech therapy, occupational therapy, and ABA are now considered standard for treating autism by the American Academy of Pediatrics, the National Institutes of Health and the Surgeon General. The debate is who should pay.
"We can make a decision as a society to broaden health insurance to include other things. We can do that. We can do that through state and federal legislation, but we also have to understand that will significantly increase the cost," Dr. Levine.
States with autism legislation guaranteeing specific services: Louisiana, Pennsylvania, Texas, Arizona, Florida, Indiana, and South Carolina.
In fact, seven states have passed legislation requiring health insurance to cover specific treatments for children with autism, including ABA, but it ranges from state to state. For instance, Texas offers coverage only until age six. Pennsylvania provides coverage until age 21 which is part of legislation passed in Pennsylvania this summer, after a comprehensive cost analysis.
"The legislature required an analysis be done of what is the economic impact of requiring health insurance companies to cover this, and I believe that the conclusion was a dollar per member per month," said Kristin.
"Our actuaries estimate that to provide 26 plus hours of ABA plus speech therapy and occupational therapy, beyond what we currently provide for medical services would impact all of our membership somewhere between $5 and $7 per member per month," said Dr. Levine Kaiser.
Dr. Levine says are also many other factors driving up health care costs. Medical innovation, she says, comes with a price tag, but families point to the cost to society without early, comprehensive interventions for children with autism.
"We're creating a much bigger problem both for the children and for the taxpayers. With proper treatment, there is an enormous amount of evidence that children make significant progress and can become much more fully functioning members of society," said Kristin.
The Alliance of California Autism Organizations hopes legislation mandating specific autism treatments in our state will be introduced next year.