SALT LAKE CITY — Lindsay Waldrop knows the location of every Taco Bell and Taco Time on every route she commonly travels with her 17-year-old son, who has autism.
She told members of Utah's Senate Business and Labor Committee on Wednesday that her son used to become violent when he didn't get to eat at the taco joints whenever he requested it — even in the middle of the night. But because of ongoing Applied Behavior Analysis, a type of therapy to help people with autism spectrum disorder, Waldrop now gets by with a little grumbling from her son when tacos are not in the schedule.
"This is life-changing work that we are doing," Waldrop said, adding that insurance has never covered therapy for her son.
SB95, proposed by Sen. Curt Bramble, R-Provo, on Wednesday, aims to require certain health benefit plans in Utah to provide coverage for behavioral health treatment for people with autism spectrum disorder, regardless of their age and how many hours of treatment they might need.
"If we don't give them the skills and treatment applicable to them, they grow up and just don't have the tools to be a mature adult," said Senate Minority Leader Karen Mayne, D-West Valley City. She said the treatment not only helps individuals with autism, but also their families and society.
The bill would remove caps that appear in current statute saying insurance plans must cover Applied Behavior Analysis therapies for patients age 2 to 10, as well as the number of hours of treatment benefit plans will cover, which is currently 600 hours.
Kelly Atkinson, executive director of the Utah Health Insurance Association, said the statute applies to just 24 percent of Utah's insured, as the majority of people in the state are insured by large, out-of-state plans regulated by the federal government. He said the cost of mandating coverage would be passed to consumers.
Private insurers, such as Intermountain Healthcare's SelectHealth and Regence BlueCross BlueShield of Utah, have already opted to cover the service "because it's the right thing to do," Bramble said.
However, Utah Commissioner of Insurance Todd Kaiser told the committee that should SB95 pass, a provision of the Affordable Care Act puts the state on the hook for about $800,000 in reimbursements to insurance companies for mandating specific coverage.
"If it is done after 2012, the state must pay," Kaiser said, adding that the bill will have a substantial fiscal note that would also have to fit into the state's budget somehow.
Age caps in current regulations have challenged Utah families, specifically financially. One in 44 kids in Utah falls somewhere on the spectrum of autism disorders — one of the highest rates of prevalence in the country, according to the United States Centers for Disease Control and Prevention.
"We're not experts in medicine or autism or even our own son," said Ed Lamb, whose 8-year-old son is autistic. "We've made sacrifices to keep him in ABA treatment."
Perhaps someone who knows better than most the difference that proper treatment for autism spectrum disorders can have is Cheryl Brayton. Her son, David Brayton, who is 20, has been on the cusp of emerging therapies his whole life, forced to stay in public school where necessary services were limited.
"Public school was a nightmare for him," Cheryl Brayton told lawmakers. "Since we've been at the Utah Autism Academy, using the ABA method, he's improved leaps and bounds."
Skills David Brayton has learned include using the toilet alone, grocery shopping and asking for help to find items, and making his own lunch, his mom said.
"If ABA for him was to end, he would decline rapidly," she said.
Money spent on effective treatment now, Cheryl Brayton said, is far less than the projected expenses of living in an assisted-living facility in the future.
"I'm really tired of people saying kids (with autism) can't make progress past the age of 8," Waldrop said. Her son has been getting ABA therapy since he was 13 and the family has fought for it ever since, "even if it is just to help families in the future. Other families have fought for what we have now."
"It's so important for these kids to get these services," she said.
The committee unanimously approved Bramble's bill on Wednesday and it now moves to the full Senate.