California lawmakers, insurers battle over coverage for autism

From The Bay Citizen in Calif.:

When Elliott Epstein (pictured) 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."


“With skyrocketing medical bills already causing premiums to rise, shifting the responsibility for educational and other non-medical services to health plans would drive up the cost of coverage for all Californians,” the association said in a document emailed to The Bay Citizen. The bill would lead to “increases in the ranks of the uninsured, higher employers’ costs and, consequently, more job losses.”

In an emailed statement, the California Department of Insurance affirmed that it "fully supports" SB 770. The state's Department of Managed Health Care, which was involved in last month's settlement, has no position on the bill, a spokesperson said.

The Legislature has until Sept. 9 to take action on the bill. According to the advocacy group Autism Speaks, 27 other states have passed similar legislation.

Autism and similar disorders affect one in every 110 children nationwide, according to estimates from the Centers for Disease Control. The number of individuals receiving services for autism jumped twelvefold between 1987 to 2007, and the number of cases is projected to further increase.

Nearly 60,000 California children — including almost 10,000 in the Bay Area — receive special-education services for autism, according to data from the state’s Department of Education. Lifetime treatment costs for an autistic individual often exceed $3 million, with behavioral services accounting for more than $350,000.

ABA is the most common form of therapy for autism, backed by 40 years of research, according to Dr. Susan Hyman, chair of the American Academy of Pediatrics' autism subcommittee. Although many studies dispute ABA's efficacy, "The outcome isn't cure," she said. "The outcome is improvement."

The federal government is still determining whether ABA should be covered as an "essential benefit" under the Affordable Care Act, or federal health care reform, when it is fully implemented in 2014.

“If ABA is included, we’ll cover it,” said Charles Bacchi, executive vice president of the California Association of Health Plans. Barring that, he believes the state shouldn't require coverage.

Families of autistic children, however, say they cannot afford to wait.

"Treat it early, it's a small problem," Epstein, the father, said. "Treat it later, it's a big problem."

Epstein believes his son Elliott's ABA treatments were "worth every penny."

“Three years later, he is verbal. Although he’s hardly studying Shakespeare, he has basic communication,” Epstein said. “Without therapy, you wouldn’t have that. You’d have a 6-year-old looking like a 3-year-old."

But battling with insurance companies has taken a toll. Epstein said that to date, Blue Shield has reimbursed only a "nominal" amount.

“Every hour and dollar that I’ve spent having to go obtain the coverage that I thought I’d been paying for for two decades is hours that could have been spent with my son, could have been spent with my family, dollars that could have been spent providing him with a better quality of life,” he said. “When you’re stripping your house payment to pay for your son’s medical coverage, that can’t be good.”