[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
SB.55 Clears Utah Senate Committee
February 08, 2013
SALT LAKE CITY (February 8, 2013) — The Senate Banking and Labor Committee yesterday voted 5-2 to release SB.55, the autism insurance reform bill, for a vote by the full Senate which is likely to come next week. The bill was released with amendments by the sponsor, Sen. Brian Shiozawa (R-Cottonwood Heights).
Lorri Unumb, Esq., Autism Speaks’ vice president for state government affairs, joined Utah families in speaking in favor the bill.
The Shiozawa bill would cover applied behavior analysis (ABA) up to $50,000 a year for children through age 8, then up to $25,000 a year though age 17. It would take effect July 1 of this year.
Mandate to require insurance coverage of autism treatment hits Utah Legislature, inspires families
By Wendy Leonard
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.
Bill that would mandate Utah coverage for autism treatment clears committee
By Cathy Mckitrick And Heather May The Salt Lake Tribune
Published February 7, 2013 7:47 pm
Despite misgivings about costs and the potential for abuse by persistent parents, members of the Senate Business and Labor Committee approved a bill 5-2 Thursday that would mandate insurance coverage of autism testing and treatment.
Sponsor Sen. Brian Shiozawa, R-Cottonwood Heights, who is a doctor, argued therapy for children with autism is effective and can be provided in a way that is fiscally responsible.
“This is one of the most significant bills that you will face in this session,” he told the committee. “It is an opportunity for us to make great medical changes in people’s lives.”
Several parents urged the committee to approve SB55, which covers children through age 17, with a benefit of $50,000 a year for those through age 8 and $25,000 for older children. Advocates cited a study of mandates passed in five states that showed the average premium increase was 31 cents per member per month.
“Thirty-one cents per member per month is not going to break your business,” Shiozawa said.
But insurance industry representatives questioned the costs and called the bill premature, saying the state should await the outcome of three treatment pilot projects approved in lieu of a mandate last year.
The fiscal note for SB55, made public Thursday, said it would cost $1.3 million in 2014 and $1.85 million in 2015 to add the coverage to various programs that cover state employees, public education and the Children’s Health Insurance Program (CHIP).
By comparison, the three pilots cost about $12 million a year in state and federal funds to cover about 300 children.
Insurance agent Richard Herd pointed out that under the Affordable Care Act, Utah would have to have to pay the autism-related portion of premiums for residents who get federal subsidies to buy insurance. That expense was not included in the fiscal note. “I’m not sure how you’ll defray those costs,” he said.
And state mandates only cover insurers regulated by the state, about a third of the population, noted lobbyist Kelly Atkinson.
Marla Wayman, a free market advocate from American Fork, also spoke against the bill.
“At the risk of being called mean, this bill is not really directly about the care for autistic children,” Wayman said. “It is about the control of private-sector insurance.”
The effectiveness of the Applied Behavior Analysis treatment covered by the bill has been proven, Shiozawa and others said. Paul Carbone, a University of Utah pediatrician who treats children with autism, said one study of children treated with ABA showed it “actually changed the patterns of their brain waves when they were looking at faces … to a more typically developing pattern.”
Starting treatment at a young age is always better, Carbone said. Pressed by Sen. Todd Weiler, R-Woods Cross, he said he did not agree evidence doesn’t support treatment for older children.
Senators questioned whether parents could continue to pursue treatment even if their children did not appear to be responding.
Coverage would be limited by usual rules that require a treatment to be medically necessary, and doctors would be the gatekeepers, said Lorri Unumb, vice president of state government affairs for Autism Speaks.
That was a sticking point for Weiler, who voted in support of the bill to allow further discussion but cautioned, “I don’t think this bill is ready to pass.”
There must be a clear “out” for insurers when a child is not responding, he said, because “motivated parents” could persuade a doctor to keep recommending care.
He also suggested trimming coverage for children who are approaching 12, noting treatment has a “short window of opportunity” to be most effective with younger children, “and I’d rather that money be spent there.”
Sen. Diedre Henderson, R-Spanish Fork and Sen. David Hinkins, R-Orangeville, voted against the measure.
Before the vote, Weiler defended the three treatment pilot projects approved by the Legislature last year. A mandate was not going to pass, he said, and “we passed the only thing we could to get a foot in the door.”
He continued, “All I’ve heard from the autism community since then is criticism of the pilot program.”
He added, “And I would hope that if we get some form of mandate passed this session, that’s not the reaction we get from this community. We’re up here, we’re doing the best we can, we’re imperfect. But we did something phenomenal last year and I’m just tired of being criticized for it.”
Outside the hearing, House Speaker Becky Lockhart, R-Provo, said, “We’re pretty committed to seeing [the pilots] go forward … to seeing how that plays out over two years.”
While crediting the Legislature for acting last year, Shiozawa predicted the results of the pilot will show the therapy works.
“All we will have done … is to deny this therapy in this critical time for a very vulnerable portion of our population,” he said. “This is the time to act.”
Cari Brown said her 3-year-old son, Craig, was accepted into a pilot and has been receiving ABA therapy 24 hours a week. His progress has been “nothing short of phenomenal,” she said, but she worries about what will happen when the pilot ends.
“An insurance mandate would eliminate these concerns,” she said. —
18,532 balls to represent autistic children
A display of 18,532 balls, representing the number of Utah children with autism, will be installed at the Utah Capitol Rotunda Friday from 10:30 to 11:30 a.m. The Utah Autism Coalition is creating the ball pit using a giant container built by Home Depot and plastic balls from Toys R Us. The group will also distribute jars with 639 gumballs to each state senator and 247 balls to each representative, representing the average number of autistic children in their districts.
More With Autism Votes
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.