AUGUSTA, Maine — After hitting some bumps during the setup of the Affordable Care Act, advocates say they’re regaining momentum in their effort to expand private insurance coverage for the treatment of autism.
But while the movement to require insurance companies to offer the often-expensive coverage has brought relief to thousands, a state-by-state patchwork of regulations can create confusion for families, cut off coverage too early for some and leave affordable therapy out of reach for many, advocates say.
Applied behavioral analysis, which often involves teaching children skills by breaking them down into smaller sets, is widely viewed as the most effective way to help autistic children succeed. But it can cost families without insurance tens of thousands of dollars a year. And insurance companies say providing coverage will force them to raise premiums.
Colleen Jankovich of Omaha, Nebraska, was forced to stop her son’s ABA treatment after weeks because insurance wouldn’t pay for it. Her 11-year-old son, Matthew, is nonverbal and requires 24/7 care. But she believes things might have been different with early intervention.
“We shouldn’t have to choose between treating our children and putting food on the table or bankrupting our family if we choose to pay for the treatment anyway,” said Jankovich, 43.
Susan Pisano, a spokeswoman for America’s Health Insurance Plans, said her trade group doesn’t specifically oppose coverage for autism treatment. But, she said, thousands of state mandates, like Nebraska’s, have made health plans more expensive.
Supporters say the impact on premiums has been minimal.
There’s much at stake as the number of children diagnosed with autism spectrum disorder continues to rise. ASD is a group of developmental disabilities that can cause behavioral issues and affect one’s ability to interact with others and communicate.
One in 68 children, or roughly 1.2 million Americans under 21, is affected by autism, according to the Centers for Disease Control and Prevention. That a 30 percent increase since 2012, but experts say it’s partially because doctors are diagnosing it more frequently.
In total, 37 states and Washington, D.C., have approved laws to provide coverage for treatments, according to Autism Speaks, an organization that’s pushing legislation in statehouses across the country.
But the issue has been complicated as of late by the federal health care overhaul, which left it up to states to decide what they would use as “benchmark plans” for the health care exchanges. That means that even some states that have mandates, like Virginia and Minnesota, don’t include coverage for treatment in plans offered on the exchange.
“Now, I think the exchanges are in place and things are starting to percolate with the ACA, so now we’re able to go back and pick up some momentum,” said Judith Ursitti, director of state government relations for Autism Speaks.
Maine, Utah, Nebraska, Maryland, and Kansas approved new or expanded autism insurance laws or regulations since the beginning of April. Lawmakers in Hawaii, Mississippi and South Dakota have agreed to study the issue, and the North Carolina Legislature may also consider a measure.
Because insurance is state-regulated, coverage often varies from state to state on which plans have to offer it for autism, as well as prices and age limits.
Nebraska’s new mandate is expected to help 1,000 families gain access to therapies, but Jankovich’s isn’t one of them. Her family’s coverage falls under the plans excluded by the law.
In Maine, companies are required to offer coverage only up to age 5. Advocates say that can be discriminatory because wealthy white children with access to doctors are more likely to be diagnosed at a younger age than poor minorities.
Maine’s Legislature approved a bill this month that will require companies to provide coverage up to age 10, something advocates say doesn’t go far enough. They’ve already said that they’ll likely be back with another measure attempting to raise the state’s age limit to 21 next year.
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