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Mom wins fight for autism insurance

  • Story Highlights
  • Most medical insurance policies generally don't cover autism treatment
  • One lawyer-mom whose son has autism decided to fight for coverage
  • She wrote a bill requiring insurers to cover treatment, got other parents to help lobby
  • "Ryan's Law" takes effect in July in South Carolina; 2 other states have similar laws
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By Justine Redman
CNN
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LEXINGTON, South Carolina (CNN) -- Ryan Unumb just turned 7 years old. He has about 100 words in his vocabulary, even if they are difficult to understand. He's potty trained. He loves playing with water. He follows instructions, he asks for food when he's hungry, and he gives lots of kisses.

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The law named for Lorri Unumb's son, Ryan, doesn't apply to him. Their family is self-insured.

He's not where a 7-year-old should be developmentally, but for a child with severe autism, his parents are thrilled with his progress.

Lorri and Dan Unumb attribute these achievements to the 40 hours of intensive therapy Ryan gets every week. Tears streaming down her face, Lorri says they know they're lucky they can afford the team of private therapists who spend all day at their house outside Columbia, South Carolina.

"I've met so many other moms who were doing the best they could, and I just wanted to say to them, 'You know, an hour a week of speech therapy for your child is never going to make him better,' " the mother of three says.

"But I didn't want to tell them what they needed is 40 hours a week of therapy, because there's nothing they can do to buy that."

Nothing they can do because most medical insurance policies generally don't cover autism treatment, and it's too expensive for many parents to afford out of pocket. Ryan's therapy costs between $70,000 and $80,000 a year. That's Lorri Unumb's entire salary.

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She and her husband are both lawyers; after Ryan's autism was diagnosed five years ago they sold their house, downsized and sacrificed to cover costs.

"It's not like you read your insurance policy and you can see a specific exclusion," Lorri Unumb says of the early days after Ryan's diagnosis. "We submitted bills, and we'd get denials back that said 'experimental... denied,' or 'provided by a non-licensed provider... denied.' Or sometimes the insurance companies would say 'this therapy is educational in nature, not medical... denied.'"

As a lawyer and a law professor, Unumb decided to do something about it, to force insurance companies in South Carolina to cover autism. Video Watch more on the Unumbs' fight to change the law on insurance coverage of autism »

She wrote a bill, recruited other parents to help her lobby state legislators, and two years later, got the bill passed. Known as Ryan's Bill, it will go into effect as Ryan's Law in July.

Ryan's Law mandates that insurance companies provide up to $50,000 a year for behavioral therapy up to the age of 16. It also prohibits insurers from refusing other medical care to children because of their autism. It doesn't, however, apply to people or companies who are self-insured, such as the Unumbs.

Similar laws have already been passed in Texas and Indiana, and campaigns to do the same in other states have the support of the advocacy group Autism Speaks.

The health insurance industry argues that so-called "mandates" like this ultimately do more harm than good.

"It's not that we oppose a particular mandate," says Susan Pisano of America's Health Insurance Plans, a Washington-based association that represents health insurers. "We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed."

But as for why autism isn't covered in the first place, the industry insists that behavioral therapy is an educational measure, not a medical one, and therefore not its bailiwick.

"I think that it's perfectly understandable that if you are diagnosed with a condition, or a family member is diagnosed with a condition, you want to get services," Pisano says. "Traditionally those services have been provided through early intervention programs for children in the 0-3 age group, and by schools for children who are older."

Pisano says the real issue is one of public policy. "We're seeing around the country, as the number of children along the autism spectrum is increasing and as budgets are being cut back, we see a move to transfer responsibility for some of the services [from the government] to the health care system." Explainer: Understanding autism »

For the Unumbs and many other parents though, the bottom line is that their child's autism was diagnosed by a doctor, not a teacher, and they want the coverage they feel entitled to after years of paying insurance premiums.

Lorri Unumb was so inundated by phone calls from parents of children with autism around the country wanting advice on how they, too, could go up against one of the most powerful industries in the nation and win, that she and her collaborators started holding open workshops to explain how they'd done it.

While admitting that she might not have done it if she'd known how hard it would be, Unumb regularly gives impassioned talks on how to garner grass-roots support, how to lobby state legislators and get signatures on bills.

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"If you have a child with autism, you're exhausted all the time. And the last thing in the world that you have time to do is to take on the insurance industry. That's why it's just persisted this way for so long, it's that the very people who have the motivation to get the coverage just can't do it," says Unumb.

But even with Ryan's Bill passed, she cautions, it's not over yet. "I've been contacted by a number of people from around the country who have told me that they're planning to move to South Carolina because of Ryan's Law. That's both gratifying and scary. ... It's gratifying because I love to see as many children as possible take advantage of the new law. It's scary because it hasn't been implemented yet, and it's an insurance policy so there are going to be all kinds of issues with implementation." E-mail to a friend E-mail to a friend

Justine Redman is a CNN producer in Washington.

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