California insurance regulators add another obstacle for parents of autistic children
Kevin and Jill Larkin knew early on that something was not quite right with their son. At 2, Ryan had an odd habit of flapping his hands, wouldn’t respond when they spoke to him and was transfixed by the television set, staring at it long after they turned it off.
Still, “when the doctor sat me down and said, ‘It’s not good news,’ I remember thinking, ‘Where’s he going to go to college?’ ” Kevin Larkin said. “They looked at me and said, ‘Your son won’t read.’ ”
Since then, he and his wife have tried “everything short of mystic healing,” he said. Yet, at age 17, Ryan is not toilet-trained, can’t be left alone in the tub and still doesn’t speak.
A week ago, Ryan moved to a group home in North Hills, where he lives with three other autistic young men. He works in the student store at his school, a Sherman Oaks campus for autistic and learning-disabled children.
Yet, the Larkins of Studio City feel lucky. California is one of the nation’s most generous states when it comes to autism, spending $320 million -- up from $50 million a decade ago -- annually for services, including mobility training and speech therapy.
The Larkins have spent about $80,000 on therapy for Ryan, but the state has paid for most of his treatment. And Ryan might have been worse off if his father’s medical insurance had not covered full-day therapy when he was first diagnosed.
“It probably cost $400 a day, and that was back in 1993,” Larkin said. “It’s very intense, and it’s not cheap.”
And that’s why today insurance companies are refusing to pay.
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As if they didn’t have enough to contend with, parents of autistic children had another obstacle thrown in their paths this week, wrapped in a tissue-thin victory.
On Monday, California regulators ruled that insurance companies must pay for speech, occupational and physical therapies needed by autistic patients, as reported by The Times’ Lisa Girion. But they stopped short of mandating coverage of behavioral therapies that have been shown to improve social skills.
It’s like giving with one hand and taking away with the other. Your child can be taught to talk, but few will listen if he doesn’t know how to make eye contact.
Autism is a brain disorder that impairs communication and socialization. The therapy at issue breaks skills into tiny steps and teaches them through repetitive drills. That can help autistic children become more self-reliant and open the door to broader educational and social opportunities.
But health plans don’t consider it a medical necessity. Two hours of daily behavioral therapy can cost about $18,000 a year -- but research suggests that its use early on can decrease later treatment bills.
Families who challenge insurance denials win more often than they lose when their cases get to independent reviews. But that’s one more hoop for overwhelmed families to jump through.
State law says insurers must cover mental and behavior disorders the same way they cover other medical conditions. So a depressed teenager can get a psychologist’s ear, and a kid who smokes pot gets rehab treatment -- and that is as it should be.
But an autistic child doesn’t merit a professional’s help to learn how to share a crayon or ask a classmate for a play date? That doesn’t seem fair to me. Or to their families.
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I understand that insurance companies don’t want to foot the bill while families cast about for miracles. Insurers say everyone’s premiums would rise if they were forced to pay for unproven treatments for autism.
To Larkin, that sounds like scapegoating. “Sure, we’re running on hope,” he said. “But look at all those moms and dads at St. Jude’s Hospital, watching over their kids’ cancer treatments. Should they be denied treatment because that child could pass away in a year?”
Or look at 16-year-old Andrew Hain, diagnosed 13 years ago with autism. He attends a regular high school in Glendale, with no aide or special tools. When he’s bored, he’s allowed to walk to the mall alone.
His father, Phillip, is head of Autism Speaks, an advocacy group for families. Its annual fundraising walkathon will be April 25 at the Rose Bowl.
When Andrew was young, he received speech therapy and the kind of behavioral training that insurance companies are balking at now. “We weren’t sure what his development would be like,” Phillip Hain told me.
“I can’t say we did this one thing and it made a huge difference,” he said. “For us, something clicked. We became a success story.”
Stories like his and the possibilities they suggest fuel efforts to increase funding for research and treatment.
“Doesn’t it make more sense to invest in children now, to provide them with therapy that has medical backing and have them be productive members of society,” Hain said, “than to say ‘Let’s not risk it’ and let them be dependent on the state for the rest of their lives?”
At the group’s first fundraiser six years ago, 1,200 people turned out and raised $450,000. Last year, 15,000 people showed up and raised $1.5 million.
But the day is about more than money among those living with the strain of autism. It’s a day of freedom for families who can’t attend a movie together because loud sounds might upset an autistic child, or make a trip to the grocery story without risking a meltdown in the middle of an aisle.
“It’s a great show of hope,” Hain said, “in the feeling of coming together and not worrying about who’s going to stare at my kid if he does something odd.”
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To find out more about the walkathon, go to www.walk nowforautism.org.
