Some California families dealing with autism are “relatively lucky,” according to advocates. California is one of 24 states, along with Washington, D.C., requiring autism coverage on the list of essential benefits in policies sold through new Affordable Care Act health insurance exchanges.
However, for low-income families the pathway to autism coverage is full of obstacles in California, according to officials at Autism Health Insurance Project, a not-for-profit helping families find coverage and lobbying for policy changes.
“In the state of California if you can afford to buy private coverage or you qualify for coverage through the exchange, things should be getting better for autism families,” said Karen Fessel, executive director of Autism Heath Insurance Project.
“Unfortunately, though, for low-income families, we’re still not there,” Fessel added.
Because Medicaid doesn’t cover some specific kinds of therapy and because of what Fessel calls “a critical glitch” in the way people qualify for coverage in exchanges, low-income families still have an uphill struggle to obtain coverage for autism treatment.
Eligibility ‘Glitch’ in Exchanges
Families dealing with autism often have to cobble together more than one form of health insurance to make sure treatment is covered. Regulations governing exchanges stipulate that if a family member has affordable coverage provided by an employer, dependents are not eligible for federal subsidies on the exchange.
Although policies sold in Covered California must include autism coverage, employer-funded plans are not required to include it. Families can purchase coverage through the exchange for full price, but because autism treatment is often expensive, advocates point out that low-income families need subsidies, especially those receiving a specific kind of expensive, intensive treatment — applied behavioral analysis, known as ABA therapy.
“Speech therapy and occupational therapy are the most common forms of treatment and they are often covered by insurance, but ABA is considered the gold standard of therapy for autism and it’s very expensive,” said Cecily Ruttenberg, communications director for Autism Health Insurance Project.
“It was a big deal when the ACA was being put together as to whether ABA was to be included as an essential benefit. Then when it was decided that each state would decide its own essential benefits, we were thrilled that California was one of 24 states that included it,” Ruttenberg said.
“But there are still a significant number of families who are not going to be able to afford ABA in California because of some of the rules in place and because Medi-Cal does not cover it,” Ruttenberg said.
Autism advocates are lobbying to get ABA therapy covered by Medicaid nationally and by Medi-Cal in California. They’re also working to change the regulation barring subsidies in families with employer-provided coverage.
Almost half the families in the United States with children with autism — about 45% — get coverage through private insurers, according to the National Survey of Children with Special Health Care Needs. However, the single largest funder of medical care for children with autism is Medicaid, according to the National Institute of Mental Health.
In a letter to HHS Secretary Kathleen Sebelius earlier this year, Thomas Insel, director of the National Institute of Mental Health and chair of the national Interagency Autism Coordinating Committee, urged the Obama administration to support coverage for autism for low-income families.
“A growing body of research demonstrates disparities in autism care along racial, ethnic, and socio-economic lines,” Insel wrote.
Autism May Be Under Policy Spotlight Soon
California’s budget agreement this summer put autism treatment on hold, but Darrell Steinberg, Senate President Pro Tempore and longtime champion of autism families, vowed to take up the issue again.
Advocates in the autism community lobbied legislators to include money in the state budget to pay for ABA therapy in Medi-Cal after the state began dismantling its Children’s Health Insurance Program, known as Healthy Families.
Steinberg, named an “Autism Hero” by the Autism Health Insurance Project for his efforts in getting private insurers to cover ABA therapy, tried to get state money but wasn’t successful.
Steinberg said he’ll keep trying.
“Unfortunately this year, there simply wasn’t enough room in the budget to fund ABA therapy in Medi-Cal for kids with autism spectrum disorder,” Steinberg said after the budget agreement this summer.
“I will not give up the fight, however. ABA therapy is the coin of the realm to help these children lead productive lives, and it’s at the top of my list to get done next year,” Steinberg said.
Staff members in Steinberg’s office last week said the speaker is still considering his options for pursuing legislation on several fronts, including autism coverage.
Advocates have high hopes.
“We’ll be meeting with his staff in the next month or so and we’re very hopeful we can get some new dialogues started,” Fessel said.
Autism Coverage Also Issue in Other States
California is not alone in its struggles to contend with insurance coverage for autism treatment.
Last month in Florida, a federal appeals court upheld an order directing Florida’s Medicaid program to over ABA therapy. The ruling was considered a major victory by autism advocates.
The Vermont Legislature recently passed a bill mandating coverage for autism spectrum disorders.
“And other states are in the process of working through legislation as well. We hope more states will follow suit,” Fessel said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.Some elements may be removed from this article due to republishing restrictions. If you have questions about available photos or other content, please contact khnweb@kff.org.