In Washington state, Reza and Arzu Forough pay more than $1,000 a week for behavior therapy for their 12-year-old autistic son.
In Indiana, Sean and Michele Trivedi get the same type of therapy for their 11-year-old daughter. But they pay $3,000 a year and their health insurance covers the rest.
Two families. Two states. Big difference in out-of-pocket costs.
If autism advocates get their way, more states will follow Indiana's lead by requiring health insurers to cover intensive and costly behavior therapy for autism.
In the past two years, six states – Texas, Pennsylvania, Arizona, Florida, South Carolina, Louisiana – passed laws requiring such coverage, costing in some cases up to $50,000 a year per child.
The powerful advocacy group Autism Speaks has endorsed bills in New Jersey, Virginia and Michigan and is targeting at least 10 more states in 2009.
“This is the hottest trend in mandates we've seen in a long time,” said J.P. Wieske, a lobbyist for an insurance coalition that argues that state requirements drive up insurance costs for everyone. “It is hard to fight them.”
Arzu Forough of Kirkland, Wash., who is pushing a bill in her state, credits behavior therapy for teaching her son Shayan, at age 3, to make a sound to ask for a drink of water. Now 12, he is learning to converse about his favorite food and music, and to talk about his frustrations rather than throw tantrums.
Trained therapists, using principles of applied behavior analysis (ABA), created a system of rewards to teach Shayan these skills.
Reza and Arzu Forough have health insurance, but it doesn't cover Shayan's therapy. Although they both work full time, they must live rent-free with her elderly mother to afford his treatment.
Meanwhile, the Trivedi family of the Indianapolis suburb of Carmel, get 25 hours a week of behavior therapy for 11-year-old Ellie. They contribute co-pays and a deductible, totaling about $3,000. Insurance pays the rest, about $47,000 a year.
Michele Trivedi is an autism activist. She fought for years after a vaguely worded 2001 Indiana law required coverage but insurers still refused to pay for ABA. Finally in 2006, she helped persuade the state's insurance commissioner to issue a bulletin spelling out what was expected of insurers.
Autism is a range of disorders that hinder the ability to communicate and interact. An estimated 1 in 150 American children are diagnosed with it.
Supporters say behavior therapy has decades of research behind it and can save money in the long run by keeping people out of institutions. Researchers agree, but say much remains unknown about which therapy works best, whether long-term gains can be claimed, and whether it works with older children.
Susan Pisano, a spokeswoman for America's Health Insurance Plans, said the industry has been wary of laws ordering a specific treatment because when new scientific evidence emerges, the mandate remains frozen. And she questions whether behavior therapy is medical or educational.
The American Academy of Pediatrics includes ABA therapy in its clinical report on autism, but describes it as an “educational intervention.”
Nevertheless, some big companies and the U.S. military are providing ABA-based autism therapy as a benefit.