Derek Sauter rose from his pew, made his way to the front of his congregation and began his speech.
The churchgoers were nervous.
His mom, Jill Sauter, watched from the front row — too anxious to get emotional.
She’d been helping her 17-year-old son prepare for the Father’s Day speech for weeks, even coaching him along as he practiced the short walk from his seat to the podium. This was a boy they’d watched grow up, but whom many had never heard speak. A boy they’d seen throw tantrums during services. Who would kick the men assigned to watch him, tear their glasses from their faces, yank their ties off their necks. He’d rip pictures off of the walls and run to the bathroom just to lift the toilet lid above his head and drop it to the floor, reveling in the sound of shattering porcelain.
“One of the men was a plumber, so he just started bringing extra tank covers, and he would quietly go in and replace them without telling anyone,” Jill said.
As a 2-year-old, Derek was diagnosed with autism spectrum disorder, a complex developmental condition that impairs individuals’ abilities to communicate and interact and often involves unusual behaviors and rituals, some of which can cause harm to oneself and others. Centers for Disease Control and Prevention estimates put the U.S. autism rate among children at around 1.1 percent, and Oregon has among the highest rates in the country, with state Department of Education numbers showing a public school autism rate of about 1.5 percent.
The Bend teenager — moving through his words a bit too quickly but maintaining his composure — praised his dad, Bob Sauter, and all the men of the congregation who had been like dads to him. He thanked them for their patience, kindness and unconditional love. By the time he returned to his seat, several audience members were in tears. “They were like ‘I remember him,’” Jill said. “They remembered.”
For most of his life, Derek, now 21, has received applied behavior analysis (ABA), a widely accepted, intensive form of autism therapy experts say reduces unwanted behaviors and improves communication skills.
ABA is an expensive form of therapy that most Oregonians currently are forced to do without, as most insurance companies don’t cover it. That means many kids with autism end up relying on special education in public schools to try to improve their communication skills and reduce problematic behaviors.
That’s about to change. Oregon lawmakers last year approved a measure that puts the state among 34 others, plus Washington, D.C., that require private and/or public insurers to provide coverage for ABA therapy. The new law — which takes effect in 2015 for some public plans and 2016 for commercial plans — covers up to 25 hours per week of ABA therapy for kids who begin treatment before age 9.
But there are still many questions ahead, including who will have to shoulder the costs of the insurance mandate and whether it will extend to low-income Oregonians.
Derek underwent up to 30 hours per week of ABA therapy, starting with learning simple prompts and words and progressing to life skills like identifying dangerous situations.
“What you’re trying to do is rewire the brain,” said Derek’s father, Bob. “You know how stroke victims will need to learn to walk and talk again? ABA works similar to that in that it reprograms the mind to do things.”
‘A finger-pointing game’
Research has found ABA to be most effective when initiated as early as possible — ideally before age 4 — through an intensive form of the therapy.
Currently, though, few autistic children in Oregon are getting ABA, which can cost roughly $20,000 to $50,000 or more.
The financial barrier drives many families with autistic children to rely on special education in public schools, which autism advocates say places an unfair burden on schools and results in inadequate intervention for kids with autism at a crucial period in their development.
Others accept the minimal autism therapy their private insurance covers, although that’s generally not ABA.
“It’s been a finger-pointing game,” said Paul Terdal, policy chair for the Oregon chapter of Autism Speaks, an autism advocacy organization. “Insurance companies say, ‘Go to your schools.’ Schools say, ‘Go to the insurance companies,’ or ‘Families, you should deal with this yourselves. Why can’t your kid behave?’ And nothing really gets solved.”
Or families fight for coverage. Several families have found success in obtaining coverage for ABA by taking their insurance companies through the administrative appeals process or — when that doesn’t work — filing lawsuits.
Autism advocates have argued for years that Oregon’s laws already mandate ABA coverage under the state’s mental health parity act and a law that requires coverage of treatments for children with developmental disorders, including autism. The new law, they say, simply serves to remove the loopholes and establishes Oregon’s own licensing system for ABA providers.
“Parents and families shouldn’t have to be bankrupting themselves to provide this,” said Tobi Rates, executive director of the Autism Society of Oregon, an organization that supports and advocates for individuals and families with autism. “They shouldn’t have to be going through administrative appeals or court cases, lawsuits, in order to get this coverage.”
ABA in action
On a recent weekday afternoon, ABA provider Jenny Fischer files into a classroom at the School of Enrichment in Bend, which provides early childhood education. There, a tiny, chatty girl waits for her atop a stuffed dog two times her size.
“Jenny! Pet him!,” the preschooler, whose parents asked that she not be identified, shouts in halted speech.
Fischer obliges, asks a few questions about the girl’s new friend and her troll doll sitting nearby and then gently coaxes her to a round rug near the center of the room where they begin their session. First, the girl creates her schedule by choosing activities denoted on pictures and attaches them to a Velcro board.
“Do you want to sit on the giraffe or the alligator?” Fischer asks.
Fischer is the only board-certified behavior analyst (BCBA) in Central Oregon. Currently, the Florida-based Behavior Analyst Certification Board certifies university- and college-based training programs and credentials those who have taken them as well as completed supervised experience and passed an exam.
That doesn’t mean she’s the only one providing ABA therapy, though. BCBAs like Fischer work with trusted teams of so-called interventionists who do most of the in-the-trenches work with the kids. Fischer brings together reams of research to design treatment protocols for her clients, and the interventionists follow those plans as they work with the clients.
Every other week — like today, for example — she sits in on the sessions and makes sure they’re going as planned.
ABA’s interventions are based on a number of different learning principles designed to improve behaviors and increase communication skills. Positive reinforcement is an important component of the therapy.
The girl, who has autism, is receiving the intensive form of ABA therapy, which Fischer said can go for up to 40 hours per week. Depending on the child’s skill level, the sessions can take place in a home, at a day care or preschool or elsewhere in the community where the student can observe his or her peers interacting. Intensive ABA therapy relies strongly on parents to continue the training even when the therapy is not in session, Fischer said. She also collaborates with other professionals like speech therapists and teachers in schools.
“One of the critical features of behavioral analysis is that it’s really focused on the needs of that individual and seeing each individual’s situation as very unique,” Fischer said. “What would be more beneficial to make meaningful change for that person?”
The girl’s session includes periods of structured learning sandwiched between periods of play. To begin, the girl, Fischer and interventionist Ashlee Partridge each hold an object. The girl is tasked with identifying the objects based on who is holding them.
“Who has the ball?” Partridge asks. The girl answers correctly.
“Very smart! So smart!” Partridge praises enthusiastically, then puts on an inquisitive expression, “And who has the giraffe?”
“I do!” the girl says.
The instructors speak slowly and clearly, and each correct answer the girl gives is met with repeated, enthusiastic praise.
Sometimes, amid the stream of questions, the girl seems to lose interest. Her eyes leave the circle and she twists her body to gaze around the room, not focusing on anything particular.
When this happens, Fischer gets up and positions herself squarely in front of the child. She makes eye contact and touches the girl’s arm in an effort to draw her back to the activity.
Finally, Fischer dangles the bait she hopes will entice her student to keep at it: a game of hide-and-seek if she just finishes the task at hand first. It works.
Rates, of the Autism Society of Oregon, has two sons on the autism spectrum. Her older son has a milder form that did not require ABA therapy. Her 9-year-old, Jacob, however, is much more severely affected, and can’t speak. He began ABA at age 3.
ABA is like a gateway that addresses foundational behavioral issues that prevent the child from progressing and learning, Rates said. Once those behaviors are overcome, the child can benefit more from things like occupational therapy, speech therapy and physical therapy, she said. Jacob’s first hurdle, for example, was simply his inability to sit in a classroom and learn.
“The first thing they worked with my son on was getting him to sit in a seat, and to sit there,” Rates said. “It started at 2 seconds and then 5 seconds and on and on to where he could sit and learn.”
Fischer, who also works with children with other special needs and behavioral issues in addition to autism, said her current clients are either lucky enough to have ABA covered through their insurance or they’re paying for it out-of-pocket.
More often than not, though, potential clients are referred to her by their doctors but ultimately learn they can’t afford the therapy, even if she offers it on a sliding fee scale.
“Oftentimes, right now, I get the calls but it’s not able to become a reality,” she said. “It’s very hard.”
Wrangling for coverage
Paul Terdal’s years-long battle for ABA coverage in Oregon is at once personal and professional. His two sons, ages 6 and 8, both have autism, and he’s watched both of them benefit from the therapy.
The younger son — whose name Terdal, of Portland, declined to provide — was diagnosed at age 2 with a form of regressive autism in which he seemed to develop normally, but would then lose skills. His sensory processing also was out of whack. Blood tests that involved poking his fingers with needles didn’t spur reactions.
“Most kids, you poke them with a needle, they’re going to cry,” Terdal said. “He didn’t care because his sensory processing was so far out of line that he just didn’t feel the needle.”
Now, following four years of roughly 20-hour-per-week ABA therapy, his son’s IQ has gone from 86 to around 137, and his communication skills — once the occasional grunt or cry — have progressed such that he can understand people and express himself clearly through speech, Terdal said.
“I can tell that he has autism,” he said. “I can see that the characteristics he has are still consistent with it. But if you didn’t know, it would never occur to you. He’s bright, he’s social, he’s energetic.”
But getting his insurance company to cover that treatment was a nightmare, one that inspired Terdal to dedicate the past four years to helping families like his get their insurance providers to cover ABA therapy, a service he argues Oregon’s laws already required.
His battle started with his own family. In June 2011 — confident in his interpretation of the law and prepared to defend it — Terdal formally disputed his denial letter from Kaiser Permanente to cover his sons’ ABA therapy.
“I simply said, ‘I know you don’t think you cover this treatment; I want you to process a referral for it anyway, and if you think you have a basis for denying coverage, you can deny it in writing and we’ll go through that appeals process,’” he said.
Kaiser, which last summer agreed to pay $9.3 billion to families who were denied coverage for ABA therapy to settle a class-action lawsuit, told Terdal that the providers he had chosen were not properly licensed. He remedied the problem by finding a licensed provider. Then Kaiser retorted that even though its doctors recommended ABA therapy, it still wasn’t medically necessary. So Terdal had the Oregon Insurance Division appoint an outside expert to determine whether ABA was necessary. It was.
Michael Foley, communications manager for Kaiser Permanente, said the company’s criteria for considering a treatment a medical necessity are that the patient exhibit “significant, measurable and sustainable improvement as a result of receiving services” and that a treatment plan be developed.
By December 2011, Terdal said, he had a binding order to Kaiser to pay for ABA therapy for both of his boys.
“My assertion, then, is that this has really been required all along,” he said.
The biggest roadblock to coverage — one that the new law is designed to alleviate — is credentialing. Because Oregon doesn’t have its own licensing board for ABA providers, insurance companies have denied coverage on the basis that the providers, BCBAs and interventionists, are not licensed in Oregon.
“We have licenses in Oregon for everything,” Rates said. “You need one to braid hair professionally. Not having a license in Oregon creates a number of problems.”
The new law calls for the creation of a behavioral analysis regulatory board in 2014 that will license ABA providers in Oregon. It also requires licensing for the interventionists who work with BCBAs like Fischer.
Autism advocates argue that two Oregon laws mandated ABA coverage prior to the 2013 law. The first: the state’s mental healthy parity act. Passed in 2005, that law requires that insurers cover treatment of mental or nervous conditions at the same level and with no more restrictions than other medical conditions. The second is a 2007 law that requires coverage of medically necessary services for children with pervasive developmental disorders, including autism.
Since getting his own situation worked out, Terdal has helped more than 100 Oregon families navigate the maze of loopholes that had prevented them from getting coverage for their childrens’ ABA therapy. In some cases, that means guiding them through the insurance company’s internal and external appeals processes. In others, it’s lawsuits. He’s helped some families get their names attached to an ongoing class-action lawsuit filed in May 2013 against Providence Health Plan for refusing to cover ABA therapy.
When families don’t get ABA coverage, many of them turn to the public school system.
Terdal estimates that public schools in Oregon spend $200 million per biennium on special education and community services for adults and children with autism, a burden he says would likely be reduced if kids are able to get necessary treatment earlier in life.
In Rates’ case, when her son Jacob was eligible for special education services through the Clackamas Education Services District, the then-4-year-old was getting 10 hours per week, a number she said has since been about halved. Rates estimates roughly 2 hours per month of that was ABA therapy, far less than the 20 to 40 hours per week of ABA that’s recommended for kids at his age and level of severity, Rates said.
“To try and say ‘Well the schools need to provide that, but we’re not going to give them the resources to do it’ is giving the schools an impossible task,” she said, “and our kids are the ones who are suffering because of it.”
Affordable Care Act caveat
The Affordable Care Act outlined what’s called essential health benefits, a list that includes 10 categories of conditions that insurance plans must cover. States have their own lists of essential health benefits, some of which differ from the federal government’s list.
Those lists were basically locked in on Dec. 31, 2011. If a state mandates any condition after that point, that state must pony up the money to pay for the additional cost of covering that treatment under insurance policies.
Here is where the question of whether Oregon’s ABA mandate is a new one becomes crucial. It’s impossible to know how much money is at stake, but it’s enough to make state officials nervous.
The Oregon Insurance Division, unsure of how exactly to interpret the state laws as they pertain to ABA coverage, has called upon the U.S. Department of Justice to make a final call on whether insurance companies were legally obligated to cover ABA therapy prior to the 2013 law, said Berri Leslie, deputy administrator of the state Insurance Division.
“They’re interpreting, really, whether or not ABA was part of the essential health benefits package,” she said, “and so their guidance will help us come to an opinion about a lot of outstanding complaints in cases we have.”
Julie Kornack, public policy analyst for the Center for Autism and Related Disorders, an organization that provides ABA therapy, said in her view, Oregon’s mental health parity law already required coverage for ABA before the 2013 law was passed. But even if the DOJ interprets otherwise, she said the cost difference between providing a policy that covers ABA and one that doesn’t is negligible.
In other states that have implemented laws requiring ABA coverage, the additional cost has worked out to about 33 cents per policy member per month, Rates said.
“So, something that’s going to cost a family $25,000 or more per year, you spread that risk out among the policy pool, it’s 33 cents per month,” she said, “If you don’t get these treatments, you’re overburdening the schools, and in time, (those with autism are) not living productive and meaningful lives, which is the goal.”
Medicaid coverage in question
Among the questions about the law still waiting to be answered is whether it will apply to older kids with autism.
A clause in the 2013 law directs the group that decides what’s covered under Oregon’s Medicaid program to consider adding ABA therapy to its list of covered treatments. (Medicaid is not among the public plans required to cover ABA under the new law.)
An earlier incarnation of the Health Evidence Review Commission first considered covering ABA therapy for autism under the Oregon Health Plan in 2008 but decided there wasn’t enough evidence proving its effectiveness.
This time around, the HERC appears poised to approve the therapy, at least for some OHP beneficiaries. A HERC subcommittee last September reviewed a number of studies on ABA and issued a draft recommendation that OHP cover up to 40 hours of ABA per week for children ages 2 through 12 years. The subcommittee did not recommend covering the therapy for people over the age of 12, however, citing insufficient evidence of its effectiveness among older children and adults. (The subcommittee could change its recommendation to the commission at a meeting in February.)
The recommendation provides initial coverage for a six-month period, with ongoing coverage provided based on demonstrated progress.
Since the recommendations came out, many autism advocates as well as experts brought in to advise the subcommittee have spoken out against them, arguing there shouldn’t be an age limit to receiving ABA therapy.
Bob Joondeph, executive director of Disability Rights Oregon and the only subcommittee member who voted against the age limit, said one of the challenges of autism is that it’s a highly individualized disorder, and each person responds to therapies differently.
“Saying ‘This makes sense for an 11-year-old as opposed to a 12-year-old as opposed to a 13-year-old’ doesn’t make sense to me,” he said. “It seems to me that if you have a person who is on the autism spectrum, and they have certain behaviors that indicate ABA may be an effective treatment for them, they should have the ability to get a trial of that treatment to see if it is helpful or not.”
Some have criticized the subcommittee’s methodology for arriving at the recommendation, arguing that the group wasn’t following its own guidelines, didn’t review the strongest research available and didn’t heed the advice of experts called upon to weigh in.
The main area of disagreement concerns the type of research that can be used to evaluate a treatment’s effectiveness. The HERC staff abides by strict standards that govern which studies it can use, with randomized controlled trials (RCTs) being the most coveted form of evidence. In RCTs, participants are randomly assigned to different groups, with some receiving the treatment being tested and others, the control group, not receiving that treatment.
Autism advocates argue that ABA therapy doesn’t lend itself to the RCT format, because those who can benefit the most from the therapy would ideally be receiving it during their early, formative years. They say that enrolling in a study in which subjects may not be receiving the therapy could have detrimental effects.
“My child needs help now; I’m not going to participate in a study where they may or may not get help and lose that time,” Rates said. “There’s just no parent who would do it, and I don’t think it’s ethical for a researcher to ask them to do it.”
They also argue that ABA is too individualized a therapy to compare groups in a study.
The subcommittee’s review did include six small RCTs, but the study results were mixed on whether the ABA therapy improved functioning in the test subjects, especially among kids older than 12. While HERC staff members say those studies prove the RCT framework can be applied to ABA, critics say there are better studies to choose from that would have yielded far different results, they’re just not RCTs.
“There’s tons of data with children, adolescents and adults in general on this general issue,” said Eric Larsson, executive director of clinical services for the Lovaas Institute Midwest in Minneapolis, which provides behavioral intervention programs like ABA, “but when you narrow it down to a highly restricted data set, it appears as if the opposite conclusion is warranted.”
The other forms of studies included in the HERC’s review did report positive results of the ABA therapy, but the HERC places less weight on studies that are not RCTs.
Larsson, who has been providing ABA therapy since the late 1970s, was among the experts the HERC brought in to advise the subcommittee in making its recommendation. The best way to study ABA’s effectiveness, he said, is through single-subject studies, in which the effects of a treatment are observed on a single subject.
But Alison Little, director of clinical affairs for the Center for Evidence-based Policy at Oregon Health & Science University, said single-subject studies carry a high likelihood of bias. Little and her colleagues at the Center are responsible for gathering the studies that the HERC uses to evaluate treatments.
“It is possible to do them very well, but most of them are not done well and without good controls,” she said.
Larsson, by contrast, said there are many issues — global warming, for example — that can’t be studied using RCTs, but that doesn’t mean scientists aren’t studying them.
“In our case, the kind of study they’re talking about would cost about $10 million and would only answer one of about 100 questions that are open as not having been studied by randomized controlled studies,” he said. “Nobody’s going to spend $10 million doing a study. They may as well be treating the kid.”
Three experts were called upon to provide their opinions on the matter for the subcommittee: Larsson, Katharine Zuckerman, assistant professor of pediatrics at OHSU, and Eric Fombonne, director of OHSU’s Autism Research Center. The age limit of 12 would disproportionately affect blacks and Latinos, as the average age of diagnosis is later in those groups compared with whites, Zuckerman said.
Terdal, the parent and autism advocate, said he feels the subcommittee disregarded testimony from “top-notch, world-class experts.”
Some have questioned whether Little herself is biased on the topic, having served as an expert witness for the state of Florida when it was sued for refusing to pay for ABA therapy under its Medicaid program. Florida ultimately lost that case.
Joondeph, the subcommittee member, said the materials Little presented to the group in this case were comparable to data she’s gathered for other cases.
“That said, the fact that she acted as an expert witness in Florida is troubling because it gives the appearance of bias,” he said.
Little — who was paid $200 per hour by the state of Florida, according to court documents — said she was simply discussing what the evidence showed. Likewise, in the current case, she said her job is simply to interpret evidence.
The ABA therapy coverage recommendation will go before a different HERC subcommittee in March, and before the full HERC for an official vote in May. Any new coverage guidelines the HERC votes on would take effect between October 2014 and April 2015.
While the public discussion about covering ABA has focused on the evidence, Joondeph said he thinks the underlying issue is simply the fact that it’s expensive.
“Whether it’s articulated or not, the impediment to ABA coverage has been the thought that the costs would override the efficacy,” he said. “In other words, it’s so expensive that it would be asking either the public or … other people who are paying for insurance policies to pay for this service.”
‘Innocence around us every day’
When Derek Sauter was just 4 years old, an autism specialist with the Bend-La Pine School District told his parents that their son would need to be institutionalized by the time he reached his teens.
The specialist also recommended that Jill and Bob Sauter start teaching Derek sign language, as he hadn’t yet begun to form words. And if he couldn’t speak, they were told, he couldn’t be potty trained.
“It was pretty sad,” Jill said. “I was just like, ‘This is going to be our future: never going anywhere because he’s going to be out of control.’”
It was 1995 and the Sauters had just moved to the area. Derek lasted just days in the Bend-La Pine School District before his parents pulled him out. The first sign that it wasn’t going to work was when they learned the then-head of the special education program had taken just one chapter of one college course worth of education in autism.
“She said, ‘I’ll have to read up about that,’” Jill said. “We felt like they were really behind the times. I couldn’t be just putting him in school waiting for them to figure out what ABA was.”
Initially, a family friend traveled periodically from California to oversee Derek’s ABA program. Because he still was not speaking or writing, it started with 20 to 30 hours per week of pointing to pictures and the instructor placing his or her hand over Derek’s to teach him to perform simple tasks. Derek was not an easy kid to work with at the time. He had taken to ripping up any paper he came across, enjoying the sound it made. The family could have no pictures on the walls, because he’d throw them down to hear the glass shatter. The tutors had to wear long-sleeved shirts to protect their skin from the inevitable scratching. And the work was so intense they could only work two-hour shifts at a time.
“One of the girls had to take off a month before her wedding because she said, ‘I can’t have these scratches all over my hands in the pictures,’” Jill said.
The lessons eventually progressed to include photos of Derek’s tutors making facial expressions and instructions such as “show me a surprised face” or “show me a sad face.”
The lessons also included pictures of objects — an apple, for instance — that he would have to identify. Derek was taught to count and to read, the lessons always placing a heavy emphasis on repetition. There were also lessons in everyday life skills that Derek lacked, such as dressing himself. And he had to learn about danger, and who is a stranger and who’s not.
“Autistic kids have no sense of fear,” Bob said. “They have no sense of distrust. You walk up to one and say, ‘Come with me,’ and they’ll go.”
Getting the therapy paid for, however, required countless letters back and forth with the insurance company. Bob, a retired FBI agent, remains insured through Special Agents Mutual Benefit Association, which contracts with different insurance companies who handle the claims.
Initially, the company decided ABA wouldn’t be covered, as it was considered a mental health issue. Bob sent them articles, studies and court cases in which autistic clients won against their insurance companies. Finally, the company gave in, with the caveat that Bob provide semi-annual progress reports written by a board-certified professional.
Fast forward more than a decade and a grown-up Derek greets visitors to his family’s home on the outskirts of Bend in rehearsed, halted speech. A wide smile on his face, he responds to his parents’ questions politely, with an air of obedience.
He heads upstairs to watch TV and runs back down when Jill calls him. She requests he play a song on the piano. He nods, and sits on the bench without hesitation, breaking into slow but accurate renditions of “Mary Had a Little Lamb” and “Twinkle Twinkle Little Star.” When he’s finished, he turns to face his clapping audience. Once the applause ceases, Derek gets up promptly and makes his way back upstairs.
Derek will always be autistic, but he can do a number of things his parents say he wouldn’t have been able to without his ABA therapy. Not only have his violent outbursts ceased and he speaks clearly, he takes taekwondo classes, goes to the library, plays cards, does chores and can read just about anything, his parents say. And he keeps track of it all on a large calendar that allows him to place Velcro activity cards next to certain hours of the day.
But Derek’s disconnect still reveals itself in small moments. The other day, Jill said, she was joking around with her friends. She laughed so hard, tears rolled down her cheeks.
“Derek said to me, ‘Sad? Crying?’” Jill said. “He was confused. ‘Why are you sad, Mom?’ It was like, ‘Wow, he recognized that I’m laughing but I’m crying.’ That must have been really confusing.”
Derek’s parents say he’ll probably never be able to live alone, and they’ve learned to be OK with that. After all, Jill said, life with Derek is simpler in some ways than it was with their other kids, ages 27, 31 and 33. At 16, they wanted cars. Derek wanted a Thomas the Tank Engine book.
“With them, too, we always worried about who they were with, who they were driving with and stuff, what they were eating and drinking,” she said. “With Derek, we pretty much know what he’s about.”
Derek is a blessing, said Bob, his eyes welling with tears.
“I mean, we have innocence around us every day,” he said. “No guile, no hate — just innocence. And, gee, how many 21-year-olds do you know that would love to go for a drive with their dad just to get a root beer?” •