Courtesy of Kevin Epstein

Elliott Epstein, 6, has undergone behavior-based therapy ever since being diagnosed with autism three years ago

When Elliott Epstein was diagnosed with autism three years ago, his parents' biggest challenge wasn't finding treatment. It was finding a way to pay for the hundreds of thousands of dollars in medical bills.

“We call Elliott our ‘little house,’” Elliott's father, Kevin Epstein, said with a laugh, explaining that he and his wife paid out of pocket for their son’s treatment with money they’d saved for their first home. “It takes every penny you have, and every penny you don’t have.”

The Santa Clara County couple enrolled Elliott when he was 3 in Applied Behavior Analysis, or ABA, an intensive, one-on-one behavior-based therapy that has been used to treat autism since the 1960s. But their Blue Shield health plan refused to pay. Blue Shield and other health insurers have long said ABA is not "medically necessary" and is thus exempt from coverage.

That could soon change. A bill introduced in the state Legislature this week would force California insurers to cover all behavioral therapies for autism, including ABA and other early-intervention measures.

“Parents of autistic children shouldn’t have to spend their days and sleepless nights battling with insurance companies,” the bill’s sponsor, state Senate President pro Tem Darrell Steinberg, said in a statement. “ABA has long been considered medically necessary and has proven remarkably effective.”

For years, health insurers and state agencies have battled over who should pay for behavior-based interventions for autistic children. Each tries to shift responsibility to the other. That has left a great number of families like the Epsteins without coverage.

Last month, two major insurance companies — Blue Shield of California and Anthem Blue Cross — agreed to reimburse initial costs for ABA, provided it is administered by a licensed analyst.

But California has no such licensing process.

“That’s like saying a nurse has to be licensed in giving you a flu shot, but there is no license for flu shot administering in California,” Epstein said. “The so-called agreement is a complete sham. The new bill is necessary to close the loopholes.”

Kristin Jacobson of the Alliance of California Autism Organizations, a proponent of the new bill, agreed that the settlement had “a fatal flaw,” despite being well-intentioned.

“It’s akin to denying chemotherapy for cancer or insulin for diabetics,” said Jacobson. “This is a well-recognized treatment and somehow health insurance companies have decided to deny it.”

By shifting financial responsibility to insurers, the bill, SB 770, would save the state between $100 to $200 million, according to Jacobson.

The California Association of Health Plans, the trade association representing the state’s insurance companies, opposes the bill, insisting that insurers already provide "comprehensive coverage for autism-related medical services."