By the time Andrew Arce was 15 months old, his parents suspected he was autistic.
He refused to cuddle, flapped his arms and stared into space a lot. On occasion, he picked at his nose until it drew blood and, with it, smeared the walls of the family’s Pasadena town house.
It was nearly a year, Guillermo Arce said, before Kaiser Permanente, the family’s healthcare provider, confirmed their fears. The diagnosis wasn’t much help, though. Kaiser refused to provide most of the treatment that specialists said Andrew needed -- until the state ordered it to in April.
Last month, Andrew, now 2 1/2 years old, began getting the disputed treatment -- including individual training in how to eat and play.
“He is still young,” his father said. “He will always be autistic, but maybe he could be fully functioning.”
Guillermo Arce’s battle is a window on a political and legal struggle playing out across the country amid a surge in diagnoses of autism. Parents, insurers and the government are tussling over who is going to pay for treatment.
“It’s health plans versus schools versus regional centers,” said Diane Anand, executive director of the Lanterman Regional Center in Los Angeles, one of 21 state-funded centers that serve the developmentally disabled. “It’s going to take years to sort this out.”
Autism is a disorder that impairs communication and socialization and is often marked by repetitive behaviors such as rocking and head banging. Although there are many theories, its cause remains unknown. There is no cure.
Treatment is mainly behavioral training, teaching such skills as dressing. There is wide agreement that the sooner treatment begins, the more effective it is, and that early intervention pays off in the long run by developing self-reliance.
But it costs money -- as much as $70,000 a year per child. The state spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade.
Parents, in growing numbers, say insurers aren’t doing their part. Proposed class-action lawsuits -- including one filed in April by Arce against Kaiser and another filed late last month against Anthem Blue Cross -- allege that California’s largest health plans are shirking their duties to autistic members.
Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools.
“What we’re concerned about is we’re seeing a shift of the state’s responsibilities over to the health plans,” said Chris Ohman, president of the California Assn. of Health Plans. “To just say ‘We need to have health plans cover all treatments’ could have unintended consequences.”
But Kristin Jacobson of Autism Speaks California contends that the healthcare industry has “washed its hands of autism entirely.” Parents of children who don’t qualify for public programs “bear the full burden of the treatment costs and pay their premiums,” she said. “They aren’t asking for a free ride. They are paying premiums.”
The significantly impaired -- about 1 in 5 autistic patients -- qualify for help from the regional centers, which currently serve about 37,000 people with the disorder. As the fastest-growing diagnosis at the centers, accounting for 60% of new intakes, autism adds 11 clients a day.
California’s mental health parity law, enacted in 2000, was supposed to settle the issue, requiring insurers to cover autism and other behavioral disorders the same way they cover any medical condition. But critics say insurers are failing to follow the law.
Dr. Benjamin Chu, head of Kaiser in Southern California, said the law requires health plans to cover autism but not particular treatments. So, he said, Kaiser covers what it deems medically necessary.
Kaiser and other insurers say conflicts arise when parents expect them to cover services that schools and regional centers should provide, such as training to change self-destructive behaviors.
“Whether a health plan is responsible or not is a gray zone,” Chu said.
But critics contend that health plans are looking for any excuse to avoid paying for expensive treatment.
“Kaiser is really just illegally dumping patients again,” said Scott Glovsky, a Pasadena lawyer representing Andrew Arce in the Kaiser suit. “But instead of dumping poor, homeless people on skid row, they are dumping autistic children on the taxpayers.”
A state commission report issued in September gives health plans low marks for autism care. It concludes that coverage for medical, behavioral and psychotherapeutic services “is limited, inconsistent or excluded altogether.”
State-sanctioned independent medical reviews have concluded that insurers wrongly denied care to autistic patients in dozens of individual cases, but regulators have not issued a single citation.
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.