From the Salt Lake Tribune in Utah:Leeann Whiffen made a promise that when it was over -- two years of intensive therapy to free her son from the grip of autism -- she would do what she could to help other parents afford the same sort of expensive treatment.
The Highland mother says her son, Clay, (pictured) is now recovered from the disorder that had muted her babbling toddler and traded his peek-a-boo play for obsessions with round shapes and tan foods. Not even his third-grade teacher would know he was once labeled autistic, she said.
But she had to take out a second mortgage on her home and put every expense she could on credit cards to free up $30,000 a year for treatment. Knowing other parents aren't so lucky, Whiffen is working to force Utah health insurance companies to cover autism therapy.
"People need to know these kids can get better," Whiffen said this week. "I can't imagine what life would have been like for him if we wouldn't have been able to do this program."
This fall, over breakfast at Mimi's Cafe, Whiffen and another mother of an autistic child, Brittany Recalde, easily persuaded Sen. Howard Stephenson, R-Draper, to sponsor the bill in the upcoming legislative session.
"It's a draconian society that would knowingly watch children grow past the window of opportunity [for treatment] without [providing] assistance," said Stephenson, who has successfully sponsored an autism treatment bill in the past.
Stephenson said "Clay's Law" is still being drafted, but would include an annual coverage cap, likely around $30,000, and a to-be-determined lifetime cap. It will also require families to contribute.
To receive coverage, the children couldn't be older than 5, since research has shown the most dramatic benefits occur the earlier the treatment starts, Stephenson said.
'Dramatic gains' » Insurers would likely only be required to cover what is known as applied behavior analysis, or ABA therapy. It provides one-on-one treatment for up to 40 hours a week at home, reinforcing communication and appropriate social behavior and discouraging negative behaviors.
Instructors break down skills like following directions and carrying on a conversation. It has been criticized for not helping children form social relationships, but according to the National Institute of Mental Health, ABA is widely accepted as effective.
Claims of an autism cure are controversial. But studies have shown 30 percent to 40 percent of higher-functioning autistic children who receive two years of intense ABA therapy "will be indistinguishable from normal children 10 years down the line," said William Jenson, an educational psychology professor at the University of Utah who supports the bill.
"They probably still are autistic, but they've made such dramatic gains that you can't distinguish them from other kids," he said.Other children show gains but still need special-education support, and some don't benefit. Jenson cautioned it is impossible to predict how children will respond.
The bill's emphasis on ABA is based on research by Jenson, who helped start the ABA-focused Carmen B. Pingree School for Children with Autism. He recently analyzed 19 studies published over the past 40 years and found ABA was the only intensive early intervention that provided significant improvement in IQ, language and self-help skills.
"If you waste time in that window from 18 months to 5 years with ineffective therapies, you are probably going to decrease this child's chances in making dramatic gains through adulthood," Jenson said.
Questioning the cost » Supporters expect opposition from proponents of non-ABA treatments. And the Utah Health Insurance Association is worried about cost and effectiveness, said Kelly Atkinson, executive director.
Self-insured companies and the federal government would be excluded, leaving smaller employers to bear the costs, which Atkinson predicted would be substantial."
Insurers say states should subsidize the therapy as an educational intervention, but also question whether it is proven. Atkinson cites the work of a Brown University professor who notes that the primary study used to tout ABA included only 19 children. The professor also points to research showing other interventions work, even beyond age 5, and to a study showing only up to 4 percent of children will recover.
"We have to see the scientific data that demonstrates that this is a proven successful therapy for the majority of people who participate in it," Atkinson said.
Countering the cost argument, supporters of Arizona's recent similar mandate estimated the monthly price at $1.50 per insured customer. Proponents also argue treated children will need fewer state services in the future.
For Whiffen, there is no question the therapy was worth the money. Between the ages of 2 and 4, Clay spent up to 40 hours a week slowly learning how to talk, play with toys, sit in a chair. A video she shows is striking: In one of his first sessions, Clay lets out a sustained, guttural scream as an instructor tries to get him to place blocks in a bucket. Two years later, he sits calmly at a table, laughing and talking with his instructor about forming a triangle with the markers.
Whiffen, who had wondered if her son would ever know who she was, started noticing a difference earlier.
"He looked me in the eye, called me mom and held out his cup," she said. "It was like seeing him being reborn."