With complaints on the rise, however, California's Department of Managed Health Care is now looking into the matter, Director Cindy Ehnes said.
Help can't come soon enough for many parents. Already exhausted by the daily struggle to care for their children, they must fight insurers to get the therapy that their own physicians, experts and government authorities say their kids need. In the end, many spend their own money and taking on debt.
Shelley Bell said that she and her husband have spent about $350,000 on treatments for their autistic son, Jason, 11. The family has had four insurance carriers over the years. Bell said she had to battle every one and usually lost.
"A lot of parents just don't have the fight in them," Bell said. "It's almost like a full-time job corresponding with these insurance companies: the follow-up letters, the denial, the appeal. The word among autistic families is the insurance companies turn down everything and wait to see if you are going to appeal."
The Bells refinanced their Westminster home, using the money to pay for treatments. But, Bell said, they still owe about $80,000.
"As much as I hate this debt, it's been great to see the progress," she said. "My son is not fully integrated. But he talks. He's social. He's funny. It's been worth every penny."
Pending lawsuits could change the way insurers deal with their autistic members.
A spokeswoman for WellPoint Inc., parent of Anthem Blue Cross, declined to comment on the suit against the insurer. In general, Shannon Troughton said, Blue Cross covers care it deems medically necessary, including screenings, medications and some therapies for autism.
In Andrew Arce's case, specialists concluded that he needed an array of therapies, including 20 hours a week of applied behavior analysis. The intensive, one-on-one therapy breaks down tasks such as eating into small steps and drills each until mastered.
Several insurers -- Anthem Blue Cross, Blue Shield, Health Net and PacifiCare -- decline to cover the treatment, saying it is unproven.
But advocates say this is a misreading of the medical literature. The U.S. surgeon general concluded in 1999 that it was good medicine, saying 30 years "of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior."
Kaiser also declines to cover the therapy, but on the grounds that it is educational and not medical. Kaiser is reviewing its policy in light of the state's order that it provide the therapy for Andrew Arce.
lisa.girion@latimes.com
