SALT LAKE CITY — Utah has the highest prevalence of autism spectrum disorder in the nation, yet it remains one of 18 states yet to require insurance plans to cover treatment for the condition.
It is something Sen. Brian Shiozawa, R-Cottonwood Heights, intends to change.
Shiozawa introduced a bill Thursday that would include autism spectrum disorder in the state insurance code, requiring health benefit plans to cover up to $50,000 annually for a child with autism who is younger than 9 years old and up to $25,000 for children ages 9 to 18 for treatment of the condition, which envelops a range of pervasive developmental disorders.
The treatment he wants included in the mandate includes Applied Behavior Analysis and Early Intensive Behavioral Intervention, both of which have proven to have an effective window when children are most likely to successfully respond.
"If you treat autism with evidence-based therapy, there will be positive evidence of improvement, and these children who are intelligence-challenged, cognitively challenged or socially challenged will show demonstrative improvement," said Shiozawa, a St. Mark's Hospital emergency department physician and newly elected senator.
"This is one of the most significant bills you will face this session," he told lawmakers during a presentation of SB55 to the Senate Business and Labor Committee. "It is an opportunity for us to make great medical changes in people's lives."
A Murray mother of four, including two autistic sons, said the provision would be welcomed with open arms.
Janice Crosby has had to learn to navigate medical care and insurance coverage for her sons, Shane, 21, and Cameron, 14. Each exhibits varying degrees of the condition and needs individualized care.
"We're honest people, and we want to be honest with the insurance company," Crosby said, "but you have to have real conversations with doctors and others involved in order to get help to pay for what they need."
Shane has endured seizures for many years, perhaps unrelated to his autism, and he also required a cornea transplant that may have happened with or without his spectrum diagnosis.
Dental treatment is another story. The family has to plan months in advance to be able to cover the costs for both boys because insurance often will deny anesthesia that the boys need but can only be offered in a hospital setting.
"The hardest thing for me, I think, with autism is that while school is great, they're never going to be able to use the academics," Crosby said. "I'd love for them to have an opportunity to work mainly on life skills, to teach themselves to get dressed, to brush their teeth, take a bath and put their shoes on the right feet."
Treatment that involves basic skills training, when it is applied at the appropriate times, Shiozawa said, can ultimately "save millions (of dollars) down the road on suffering and delinquency, the intangible benefits to families and society."
The U.S. Centers for Disease Control and Prevention estimates there are more than 18,500 Utah children with autism, or one in 47, according to a 2008 survey, although the numbers are expected to have grown since then.
"If we treat this now, and not let them languish or go backward, the benefits are going to be huge downstream," Shiozawa said, adding that not all kids, depending on the severity of their condition, would reap the benefits of treatment.
He encouraged colleagues to vote for his bill, as treatment of any kind isn't withheld from children who have diabetes, AIDS or cancer, among others.
As a physician, Shiozawa said the efficacy of treatment for any condition isn't guaranteed, but "we always hold out hope, even in single-digit percentages, that they will get better, but we do not deny them treatment."
SB55 carries a $1.3 million fiscal note that would cover the costs of extending coverage to state employees, public education and members of the state's Children's Health Insurance Plan. The amount is projected to increase to $1.85 million in 2015.
Lawmakers last year approved a pilot study of similar treatment options for about 300 participants throughout Utah. Results from the study are not expected until later this year.
Dr. Paul Carbone, an associate professor of pediatrics at the University of Utah who specializes in autism research, said, "there is good data that the brain can be rewired during those early years," showing important development gains and a decrease in maladaptive behaviors that often overwhelm families with autism.
"Starting early is better," he said.
The Utah Medical Association and many parents of autistic children expressed support of the bill, saying it is time to address the problem in Utah.
At least three other states are considering similar legislation, and 32 have already adopted some rule mandating coverage for treatment of autism spectrum disorder. As Utah lawmakers didn't pass the mandate prior to federal deadlines, however, the state would be responsible to fund the portion of the premium increase for those who qualify for a premium tax subsidy mentioned in the Affordable Care Act.
And if SB55 passes, about 30 percent of the population is covered by insurance plans that would be subject to it.
Representatives from the health insurance industry said the bill is premature.
"If even one child utilized and received the maximum benefit, it would dramatically increase premiums," said Travis Wood, a lobbyist and part-time executive director of Utah Health Plans. He projects premium increases across the board for fully insured Utahns if the bill passes.
"As an individual, my heart bleeds for this, but this is not the answer for a very complex problem," Wood said.
Mirella Peterson, advocacy chairwoman for the local Autism Speaks chapter and a mother to a 6-year-old boy with autism, said treatment has worked wonders for her son.
"He was in the first percentile for receptive language and understood very little, but through treatment, he's now average and is mainstreamed into kindergarten," she said. "He's a twin, and you can't tell the difference."
Others said trying to make ends meet without insurance coverage for autism-related care is crippling their families.
"Our life is about surviving," said Jake Smith, of North Salt Lake. He has multiple children with autism and was denied Medicaid coverage because his income, earned by working three jobs, was too high.
"We were told to have another child or take a paycut," Smith said, adding that the family ultimately filed for bankruptcy. Fortunately, he said, his children were accepted into the state's pilot program last month. He'd like to be able to continue treatment when the program expires later this year.
"If we embrace this therapy, it will help thousands of children in the state of Utah," Shiozawa said. "We have an opportunity to help thousands. We have an opportunity to do the right thing."
The committee gave the bill five favorable votes and two dissenting, and it moves to the full body of the Senate for further discussion.
Sen. Todd Weiler, R-Woods Cross, said he doesn't think SB55 is ready to become a law, and various tweaks involving an out for insurance companies if the child is not responding to treatment, as well as attention to actual costs, need to be made to earn his approval in the end.
Reps. Deidre Henderson, R-Spanish Fork, and David Hinkins, R-Orangeville, voted against the bill, citing cost concerns.
"I'm blessed because I see so many others who are so much worse off," Crosby said. "Mine can get up and walk. There are some who are in wheelchairs or fed through a tube."
Shane, she said, has mastered dressing himself, but she still has to remind him to bathe or brush his teeth. He was high-functioning until he started to have other medical problems.
Cameron communicates much like a 5-year-old and loves to be around people. Crosby does what she can to accommodate her sons' different abilities and preferences, amid issues that are out of her control at the moment.
"I've often wished insurance companies were easier to deal with, but I try to have a positive attitude because I've been on the other end, when you wonder why everything happens to you, and that's a terrible way to live," she said.