When Yuri Maldonado's 6-year-old son was diagnosed with autism four years ago, she learned that getting him the therapy he needed from California's Medicaid plan for low-income children was going to be tough.
Medi-Cal, as California's plan is called, does provide coverage of autism services for some children who are severely disabled by the disorder, in contrast to many states that offer no autism coverage. But Maldonado's son was approved for 30 hours a week of applied behavioral analysis, a type of behavior modification therapy that has been shown to be effective with autistic children, and she was worried that wasn't enough.
So she and her husband, neither of whose jobs offered health insurance, bought an individual private policy for their son, with a $900 monthly price tag, to get him more of the comprehensive therapy.
"I don't know any family that can really afford that," says Maldonado. "We made some sacrifices."
That should be changing soon. In July, the Centers for Medicare & Medicaid Services said comprehensive autism services must be covered for children under all state Medicaid and Children's Health Insurance Program plans, another federal-state partnership that provides health coverage to lower-income children.
The new coverage guidelines apply to children with autism spectrum disorder, a group of developmental conditions including autistic disorder and Asperger's syndrome. Roughly 1 in 68 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The Association of Maternal Child Health Programs estimates that just over a third of them get coverage through Medicaid or CHIP.
Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn't explicitly required, advocates expect it will be covered.
"Since ABA is the most accepted, effective treatment that isn't experimental and investigational, you can't just exclude it entirely," says Daniel Unumb, executive director of Autism Speaks' legal resource center.
"It's going to help a ton," says Maldonado. "We'll be able to pay our rent on time, and we'll be able to pay some bills that we have."
In a July coverage bulletin, CMS said that state Medicaid programs must cover a full range of autism services under the "early and periodic screening, diagnostic and treatment services" provision of the law. The EPSDT benefit, as it's called, covers any services that are medically necessary to correct or ameliorate physical or behavioral conditions in children and young people up to age 21.
Some states are concerned about the new requirement, says Matt Salo, executive director of the National Association of Medicaid Directors. "The nexus of covering a lot of kids and a fairly unknown condition and treatment for that condition, combined with EPSDT, anytime you get that, you get states a bit concerned because there's very little way to control costs in that arena," Salo says.
Like California, some states have provided limited coverage to certain age groups, for example, or up to a specified dollar amount. But the new policy is important because it requires mandatory coverage for everybody under 21, says Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, a Burlingame, Calif.-based advocacy group.
In California, to get coverage under the state's Medicaid waiver program, children need to be substantially disabled and have a full autistic disorder diagnosis, says Jacobson.
"It doesn't cover people with Asperger's syndrome or other forms of autism spectrum disorder," she says, leaving children with language or certain functional abilities unable to get services.
Jacobson estimates that up to 6,000 new children in California who are currently ineligible under the waiver program may qualify for autism services under CMS' new guidance. "For them it's going to be a huge deal," she says.
The new coverage rules went into effect July 7 when the federal guidance was issued, although many states are still setting up procedures. More than a dozen states have contacted Unumb about implementing the new policy, he says.
Advocates across the country in recent years have been working to build support for better insurance coverage of autism services, including Medicaid coverage. The federal government's announcement followed a number of recent court cases, including federal circuit decisions in Florida and Ohio, affirming that applied behavioral analysis services were required under the Medicaid EPSTD benefit. Those decisions bolstered advocates' long campaign to get such services covered, Unumb says.
In addition, 37 states and the District of Columbia have passed laws that require private plans to cover autism treatment, according to Autism Speaks.
"It reached that boiling point where CMS had to step in and issue this guidance," says Unumb.
Caring for someone with autism costs an estimated $3.2 million over a lifetime, according to a 2007 study published in the Archives of Pediatrics and Adolescent Medicine.
Advocates argue that early intervention, even pricey applied behavioral analysis that may cost more than $50,000 annually, can save money in the long run. Nearly half of children who receive early interventions such as applied behavioral analysis can achieve mainstream status, according to a 2005 study published in the American Journal of Mental Retardation.