Survey: Better Access to Autism Care, but Co-Pays Too High for Many Families

A survey released today by the Autism Society of California found that access to autism services has expanded in California under a new state law that requires insurers to cover autism therapy.

However, some families in California have been adversely affected by new regulations governing state-contracted regional centers that provide autism services. The new rules shift payment of insurance co-payments and deductibles away from regional centers and onto families.

According to the survey, almost 20% of families receiving autism therapy treatment at regional centers have cancelled the health insurance policies of their children, in large part because they can’t afford the co-pays and deductibles.

“We hear all the time about families who are overwhelmed financially and emotionally [by this change in regional center policy],” said Beth Burt, vice president of the Autism Society of California, which conducted the study.

“So it’s important now that we have some data to back up the stories we hear,” Burt said.

Burt and other members of the Autism Society will present their findings today at an informational hearing before the Senate Select Committee on Autism and Related Disorders.

The language shifting co-pays and deductibles to families was included in the budget trailer bill last year but should be removed now, said Marcia Eichelberger, president of the Autism Society of California.

“Our take-home message is that they amend the trailer bill language so it says the regional centers shall pay the co-pays and deductibles,” Eichelberger said.

Ironically, the money-saving move actually might be costing the state money, Eichelberger said, because the regional centers still need to treat the children who are being taken off private insurance. Centers have to pay the full cost of care if a child is moved from private coverage to Medi-Cal, Eichelberger said.

“So it’s not only fiscally hurting the state, but also hurting families,” she said.

Kristin Jacobson, president of Autism Deserves Equal Coverage, said the survey shows the law requiring insurers to cover autism therapy — SB 946 by Sen. Darrell Steinberg (D-Sacramento) — is working. The problem, she said, is that the survey shows a high level of dissatisfaction that correlates with the percentage of people affected by the new co-pay/deductible rule.

“SB 946 did what it was supposed to do,” Jacobson said. “There was an increase in access to services. There was a shift in funding from regional centers to health insurance,” she said.

But the survey also showed that many people who do not get therapy through the regional centers don’t actually know they’re entitled to coverage through their health plans, Jacobson said.

“About 30% of them don’t know about the law,” she said. “It’s great that 57% of those eligible are getting coverage, but that means 43% aren’t getting approved, and the reasons for denial are inappropriate.”

Insurers may need to be told to inform the insured that they’re entitled to coverage, Jacobson said.