Star Tribune
Controversial autism therapy is the main option for Minnesota families
For Fatima Molas’ son, years of a controversial autism treatment helped him with daily skills, like potty training. But, she said, that therapy called applied behavior analysis (ABA) is not the right fit for every kid.
Joyner Emerick’s family decided early on the intervention was not something they wanted for their son, in part because they didn’t want him to look less autistic.
“This is just a typical form of human diversity, and do we really want to take people who have been born a certain way with a particular identity and put them into therapy to suppress that identity?” said Emerick, a Minneapolis school board member who is autistic.
The decades-old practice known as ABA, used to help people who are autistic change behaviors and develop skills, has drawn criticism in recent years from some autistic people and from some parents who worry the repetitive practice could be harmful.
Still, it is the overwhelming early intervention available for Minnesota families and the basis of a lot of services available for children with autism spectrum disorder across the U.S.
The 10 autism service providers receiving the most Medicaid dollars through the state’s Early Intensive Developmental and Behavioral Intervention benefit almost all list ABA services on their websites. One provider did not have a website and did not respond to a call Wednesday.
“The only thing you hear is ABA, ABA, ABA. Again, I have benefited from ABA, don’t get me wrong,” said Molas, who co-founded the Multicultural Autism Action Network. “It’s just that there needs to be more options than the ABA, and we have to tailor the services based on what the child’s needs are.”
Use of those Medicaid-funded autism benefits has grown exponentially and recently came under scrutiny for potential fraud. The state Department of Human Services (DHS) said it has 15 active investigations into autism service providers getting money through the benefit and 10 closed investigations.
The DHS does not have data on how much of the early intervention benefit money is being used for ABA compared to other types of treatment or how many children are receiving that specific service, a spokeswoman said. Unlike some other states, Minnesota does have other treatment types funded through the benefit, but ABA is the most popular, said Natasha Merz, the DHS’s assistant commissioner of Aging and Disability Services.
An evolving treatment
What ABA looks like in practice can vary depending on the child’s needs and provider.
Providers generally described using positive reinforcements, like watching a YouTube video or navigating an obstacle course, to take incremental steps to build communication and other skills.
The approach is “all about positive reinforcement,” said Eric Larsson, executive director of Clinical Services at the Lovaas Institute Midwest. “If the person you are working with is excited to learn from you because they are getting the things they want and it’s fun … they start paying attention to what you are doing instead of sitting in the corner.”
However, in decades past, the practice used punishment to shape behavior.
In recent years, some autistic adults in the U.S. and around the world who experienced the practice as children have described it as traumatic and said they should not be forced to behave like their peers. And a U.S. Department of Defense study published in 2020 examined outcomes for children with autism who received ABA therapy and raised concerns that children were not seeing significant improvement.
There is also national scrutiny of billing practices in the field. The U.S. Department of Health and Human Services Office of Inspector General has been auditing Medicaid claims for ABA for children diagnosed with autism. The office’s website states, “In the past few years, some Federal and State agencies have identified questionable billing patterns by some ABA providers as well as Federal and State payments to providers for unallowable services.”
A spokesperson said they expect to release a report later this fall and declined to comment on which states they are reviewing.
Hundreds of millions in Medicaid dollars have gone to autism service providers through Minnesota’s early intervention benefit since 2018. Some of the biggest providers, which offer ABA, have received tens of millions of dollars.
ABA remains the “gold standard, or the best interventions we have right now,” said Jessica Simacek with the Institute on Community Integration at the University of Minnesota. The American Academy of Pediatrics states most evidence-based treatment models for children with autism are based on the principles of ABA.
The challenge is trying to affirm neurodiversity while addressing situations where a child has dangerous behaviors, like running away, self-injury or aggression, Simacek said. She doesn’t want parents to be afraid to come forward and say, “Though I celebrate my child, these are areas we need help with.”
The field continues to change, said Odessa Luna, president of the professional group Minnesota Northland Association for Behavior Analysis. Luna, who teaches at St. Cloud State University, said the field is shifting away from trying to eliminate behaviors like repetitive finger and arm movements or rocking.
“These are actually behaviors that [offer] some kind of self-soothing or they are an indicator that something’s not right,” she said. “We have evolved as a discipline, but I also think society has become a lot more accepting of folks that present differently.”
More oversight and licensing?
Oversight is critical to ensure providers are evolving and meeting the best standards to help kids, advocates said.
The services provided under the state’s early intervention benefit need to be delivered or supervised by a clinician with appropriate licensure, Merz said. However, the providers themselves don’t need a license, and there are no regular inspections of the organizations or individuals doing the work.
State lawmakers recently voted to start licensing behavior analysts, and Merz noted that the DHS is studying whether to license services funded through the early intervention benefit.
She also stressed that the state’s system is set up so the family or person getting services is driving the goals of treatment and determining whether to use ABA or other methods to meet them.
However, Jules Edwards, a disability justice advocate and co-founder of the Minnesota Autistic Alliance, said, “There’s a lot of coercion and scare tactics, and it frightens parents into thinking that they have to do ABA or else.”
ABA was an “automatic no” when her child was diagnosed with autism, she said, and noted her friends’ children recently had negative experiences with it.
Edwards echoed other parents who said they wish there were more people offering different types of autism interventions in Minnesota. But, as is often the case in disability services, she said, “There’s not enough providers.”
Mahtomedi’s volleyball team started the 2023 season 3-7. But still, the Zephyrs peaked at the right time and made it to state for a second year in a row.
This go-around, undefeated Mahtomedi (10-0) hasn’t taken long at all to start clicking.
On Tuesday night, 14 kills each from senior outside hitter Kaili Malvey and senior middle blocker Silvie Graetzer helped the Zephyrs sweep visiting South St. Paul 25-17, 25-18, 25-10.
After the program’s first trip to state in 2022, then returning in 2023, the team is thriving. With seven seniors and five juniors on the roster and all its starters returning, Mahtomedi “started at such a higher point this season,” Graetzer said. “And now our end goal is so much higher. We’re not there to get to state. We’re there to do damage at state.”
Against South St. Paul (14-4), the Zephyrs dealt with injuries to two sidelined starters heading into the match and faced the Packers’ high-swinging outside hitter, senior Alaina Panagiotopoulos.
“[Our injured players, Sahar Ramaley and Katie Hergenrader] pushed us to play for each other, and I think we really executed,” Malvey said.
Nine digs and 14 service receptions by junior libero Claire Crothers, plus six blocks by Graetzer, helped numb the swinging sting of Panagiotopoulos’ eight kills. They prepped for her in practice, focusing on eye work in blocking drills and taking up space on the court.
Another offseason key for the Zephyrs took place 10 minutes down the road in Lake Elmo. While not all of last year’s starters played club, all of them participated in club training this year, with a big Zephyrs contingent at Kokoro Volleyball. Even if the Zephyrs weren’t on the same team at Kokoro, they saw each other in the weight room, learned similar schemes.
St. Paul is among the cities that have tried sending money to very low-income residents, studying the results. When Springboard launched its project in 2021, it was one of the nation’s first guaranteed income programs aimed at artists.
“It’s not because we think artists are more deserving or more worthy than anyone else,” said Laura Zabel, Springboard’s executive director. Creative work is one form of labor that, like caregiving, “our economy doesn’t value” but that communities need — now more than ever, she said.
“I love thinking about guaranteed income as a way of honoring that we all have contributions to make to our community, and we need a little bit of time and space and breathing room to make those contributions,” Zabel said.
A similar experiment also started in 2021 in San Francisco, run by the Yerba Buena Center for the Arts, has ended. In 2022, the Creatives Rebuild New York program began providing some 2,400 artists in New York with $1,000 per month for 18 months. That same year, Ireland’s government began providing 2,000 artists about $350 a week, or about $18,200 a year, as part of a three-year pilot program.
Every 18 months, Springboard has extended its program’s funding. Now, it’s guaranteeing artists five years of income. The first 25 participants, who have received income since 2021, will see that money continue for two more years. Those who started receiving it 18 months ago, including 25 artists in Otter Tail County, will continue. And the 25 new recipients there will begin the program knowing they’ll get money for five years.
“So, from a research perspective, that’s very exciting — to be able to research and understand some of the difference between folks who know from the beginning the longer time horizon,” Zabel said, “and what that allows them to do in terms of planning and commitment to their community.”
DULUTH — A Duluth man who said he doesn’t remember killing his girlfriend pleaded guilty to second-degree murder without intent Tuesday in St. Louis County court — a plea deal that could land him in prison longer than sentencing guidelines would dictate.
Dale John Howard, 25, told Judge Theresa Neo that he doesn’t remember it but believes he caused the death of his girlfriend, Allisa Marie Vollan, 27, on March 22. Vollan, described on a fundraising site as a “bright young lady” with “an abundance of friends,” had a no-contact order against Howard at the time of her death. Howard could be sentenced to 20 years in prison — more than seven years longer than Minnesota’s presumptive guideline for the murder. According to the county attorney’s office, the longer sentence is legal because of the active domestic abuse no-contact order against him.
Howard’s sentencing is scheduled for Oct. 14.
According to court documents, officers responded to a morning call at Howard’s Central Hillside apartment and found him beneath a blanket with Vollan, who was dead. He told officers that he had hung out with Vollan late the previous night, then left to meet friends at a bar, and Vollan went to sleep in a guest room. When he tried to move her into his bedroom the next morning, she wasn’t breathing. He called his father, who was at the apartment when Duluth police arrived.
Neighbors in the upper level of the duplex told officers that, in the time before Howard would have left for the bar, they heard a woman crying and an angry male voice. They heard muffled moaning, thuds and the sound of something being dragged. They recorded it.
A preliminary autopsy by the Midwest Medical Examiner’s Office found that Vollan had likely been smothered.
Earlier the same month, Howard had been arrested after neighbors saw him repeatedly slam Vollan’s head into a door. The no-contact was issued by a St. Louis County judge.
