Maria Cruz had never heard the word autism until her daughter, Shirley, was diagnosed as a toddler.
“I felt a knot in my brain. I didn’t know where to turn,” recalled Cruz, a Mexican immigrant who speaks only Spanish. “I didn’t have any idea how to help her.”
No one in her low-income South Los Angeles neighborhood seemed to know anything about autism spectrum disorder, a developmental condition that can impair language, learning and social interaction. Years passed as Shirley struggled through school, where she was bullied and beaten up. Now 9, Shirley aces math tests but can barely dress herself, brush her teeth or eat with utensils.
Shirley is like many autistic children from poor families: She hasn’t gotten much outside help. The parents often lack the know-how and means of middle-class families to advocate for their children at schools and state regional centers for the developmentally disabled.
A new initiative seeks to help level the playing field. Starting Monday, Sept. 15, thousands of children from low-income families who are on the autism spectrum will be eligible for behavioral therapy under Medi-Cal, the state’s health plan for the poor.
California is among the first states to respond to a recent rule by the U.S. Centers for Medicare & Medicaid Services that requires the therapy to be covered, when deemed medically necessary, as part of a “comprehensive array of preventive, diagnostic and treatment services” for low-income people 21 and under. (Medi-Cal is California’s version of Medicaid.)
This type of treatment includes the sometimes costly “applied behavioral analysis,” which uses intensive drills and rewards to teach kids how to communicate and interact socially.
In California, a huge percentage of the population that stands to benefit is Latino. About a third of beneficiaries speak Spanish as their primary language, yet historically their communities have been underserved because of a shortage of Spanish-speaking providers and meager outreach and education efforts.
Taking the lead
California, however, is ahead of many states: It already has programs in place that cover a portion of autistic kids through public school districts and the California Department of Developmental Services.
Although several states, including Louisiana and Washington, have taken early steps to make behavioral therapy for autism, others offer little or no public coverage for it.
Roughly 1 in 68 kids in the country has been diagnosed with autism spectrum disorder, according to the federal Centers for Disease Control and Prevention.
“For as long as I can remember, when a family called me for help, I had to ask them what kind of insurance they had. If they had Medi-Cal, there wasn’t much I could do to help them,” said Kristin Jacobson of Autism Deserves Equal Coverage, a Burlingame, California-based advocacy group. “Now they’ll have access to this treatment that can help these children reach their potential.”
At least, that’s the theory. In practice, many details remain to be worked out.
Among the unsettled questions is what rates will be paid to providers. “In every state, it’s going to be critical that rates be sufficient” to cover high-quality applied behavioral analysis, said Daniel Unumb, the executive director of the Autism Legal Resource Center at Autism Speaks, a national advocacy group.
“Otherwise, they will not attract sufficient providers and there will be huge problems with access.” On the other hand, some officials warned that Medicaid programs must be on the alert for providers who might misdiagnose or over-prescribe services in the interest of greater profits.
The challenge is that clinicians don’t yet fully understand autism or the amount and type of treatment from which different children will benefit most, said Matt Salo, the executive director of the National Association of Medicaid Directors. States are still “trying to get a handle on what is this all going to mean. Is this going to be an open ended entitlement to a very nebulous set of services that could continue forever or a more specific, targeted intervention?” he said.
California will seek to contain costs by setting fixed rates for care, under a managed care model, officials said. Even so, some observers remain concerned that the influx of thousands of kids newly eligible for autism treatment could overwhelm an already-strapped system.
Last year, the state Department of Developmental Services (DDS) spent roughly $88 million on behavioral treatment for about 7,500 children believed to be eligible for Medi-Cal. The state Department of Health Care Services, which runs Medi-Cal, won’t speculate on how many kids may sign up for the treatment for the first time as a result of the new rule on Medi-Cal coverage – but advocates say the state could be covering between 4,000 and 6,000 additional children.
Most of the kids expected to benefit have been eligible for Medi-Cal for some time – so, for them, the state can’t draw the blanket federal subsidies offered under the recent Medicaid expansion provided for in the nation’s health law. The federal government will cover just half the costs; California will have to absorb the rest.
The state will most likely cover any new expenses with money from the general fund, said Dylan Roby, a health care economist at the University of California, Los Angeles’ Fielding School of Public Health. If that runs dry, “they would need to pay for it by moving funds around, cutting existing programs, or getting additional appropriations from the state legislature and governor later in the year or as part of the next budget package,” Roby wrote in an email.
Still unclear is how the new system of Medi-Cal coverage will mesh with the bureaucracies and funding already in place for treatment of children in public schools and through DDS regional centers. Some advocates expect these systems to remain in place for the near term, but state officials said they could not yet discuss their plans.
Not A Panacea
For poor families, the coverage does not remove every obstacle. Some families can’t take the time off work to attend behavioral treatment regimens, which often require an adult to accompany a child. It can be a commitment of up to 40 hours a week– the equivalent of a full-time job.
Perhaps one of the most challenging issues for state officials will be reaching out to poor families — making sure they understand the disorder and don’t delay diagnosis or treatment out of any sense of denial or stigma.
For many years, Cruz rationalized Shirley’s behavior: she was her youngest, the last of four. She had been babied; she was naturally quiet. When the DDS regional center that diagnosed Shirley inexplicably stopped calling about providing treatment, Cruz accepted it without pushing back.
A conversation with a friend from church about a year ago woke her up. They were talking about how Shirley’s schoolmates had spit on and hit her. Cruz confided that she loved her daughter, but she could not accept that she might have this condition. Her friend chided her, saying that what Shirley needed was her mom’s unconditional support; otherwise Cruz was no better than the bullies.
It was a harsh thing to say. But it also marked a turning point. Since then, Cruz has pored over legal and scientific texts and vigorously pressed her local DDS regional center to help her daughter. She’s dropped off letters spelling out the treatment she believes Shirley is entitled to, complete with the legal codes. She’s even taken a bus with other advocates to Sacramento to push for better access to treatment for all autistic children.
But until a reporter mentioned it this month, Cruz was unaware that Medi-Cal – her daughter’s insurance plan—would soon cover behavioral therapy. Cruz only wishes she could have gotten services for Shirley earlier—her daughter might be better off. Still, Cruz is hopeful the new rules will finally give Shirley a better chance at succeeding in school and making friends.
“It makes me happy … It’s important for her life, for her future,” Cruz said. Right now, “our children are losing out a lot.”