Coverage for autism services, a source of controversy for years in Sacramento, is likely to be on the forefront of health care issues once again during upcoming budget negotiations.
At issue is a type of autism treatment called applied behavior analysis (ABA therapy), which private insurers are required to cover under California law but which is not covered under Medi-Cal.
“That’s a budget item. I’ve identified that as a priority,” said Senate President Pro Tempore Darrell Steinberg (D-Sacramento), author of the legislation that required private insurers’ coverage of ABA. “I’ve identified it as a priority all year.”
The push to make ABA therapy a Medi-Cal benefit is not the only policy decision in the autism world, but it is the highest-profile one.
A state policy imposed last year restricts regional centers — private not-for-profit companies contracting with the state to provide or coordinate Medi-Cal developmental disability services — from paying the copayments and deductibles of families with private insurance. That has contributed to about 20% of regional centers’ autism families dropping health insurance for a child with autism, according to a recent survey by the Autism Society of California.
Meanwhile, parents and advocates are struggling to arrange therapy for California’s autistic children, while the national psychiatric community has come out with new guidelines for identifying and treating autism.
DSM-5, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders put out by the American Psychiatric Association, includes a new category in the autism spectrum — social communication disorder, or SCD. There are no clinical guidelines for treating SCD, and many autism advocates worry the new designation could be used by insurance companies to stop covering ABA therapy in treating autism disorder.
“When the DSM came out I thought, ‘Oh no, this is trouble,'” said Doreen Granpeesheh, CEO of Center for Autism and Related Disorders, an autism treatment hub based in Tarzana and the producer of a documentary on autism, “Recovered: Journeys through the Autism Spectrum and Back.”
“In terms of insurance coverage, once you get diagnosed with SCD, you don’t have coverage,” Granpeesheh said. “Some parents are being told it’s now social communication disorder. I’ve heard of children already who have been denied services.”
Steinberg chairs the Senate Select Committee on Autism and Related Disorders, which recently held an informational hearing as an update on how far autism coverage has come in the past few years.
After the hearing, Steinberg addressed his next step to help families dealing with autism: making ABA therapy a benefit under Medi-Cal.
“The challenge is it’s an expenditure. And there are a lot of worthwhile expenditures,” Steinberg said. “That said, it’s a high priority this year. I’m for it, and I’m pursuing it.”
Steinberg mentioned fixing penitentiary recidivism and restoring some of the cuts to CalWORKs, California’s redesigned welfare program, as two other priorities competing for budget funds.
“Our first goal is to reconcile with the governor what the cost is [of autism services as a Medi-Cal benefit] and to figure out what it would take to do this,” Steinberg said. “And then to fight for it.”
That kind of talk is catnip to advocates who have been fighting for autism coverage for years.
“Since 42% of children in California have insurance through Medi-Cal as opposed to state employee plans or private insurance,” said Kristin Jacobson, president of Autism Deserves Equal Coverage, “It is critical that California find a way to provide behavioral health therapy to this population.”
“ABA therapy is the coin of the realm,” Steinberg said. “If children get this therapy early, they have better outcomes. It’s as simple as that.”
The copay/deductible restriction on regional centers also could be part of the budget negotiation, Steinberg said.
According to Jacobson, the intention of the directive was to save the state money — but the opposite has happened, she said. Since the regional centers still need to provide services to those children in their program whose families have been forced to drop private insurance because of the new rule, advocates point out the state ends up picking up the entire cost of those kids’ autism therapy, instead of having it paid in part by private insurance.
Copays and deductibles in autism therapy can be high, Jacobson said; many times the children need to be seen five days a week for the therapy to be effective.
If the state is losing money on the deal, and because so many families are dealing with coverage issues, this particular problem might be an easy fix at the legislative level, Steinberg said.
A trickier issue, and a potentially much bigger one in the long-run, is the new DSM designation, Granpeesheh said.
When insurance companies cover things, they’re basically saying no to ABA [therapy],” she said. “Because it’s expensive and it’s long-term. This is nothing new.”
Many families experience delays when it comes to autism coverage, according to Granpeesheh.
“Look, no one expected autism to hit us the way it has,” she said. “No one ever thought it would get to 1 in 88 [children in the U.S. who have some form of autism]. So every month we have 20 or 30 appeals, you should see some of these appeals. And we have spent a lot of years helping families get to court, a lot of families.”
CCHI is a leader in health advocacy for children and families and is recognized as a statewide network of community organizations that champion enrollment in health coverage, access to care and other services.