As Autism Treatment Spending Rises, Controversial Therapy Is The Main Option For Families

MINNEAPOLIS — For Fatima Molas’ son, years of controversial autism treatment helped him with everyday skills like toilet training. But, she said, that therapy, called applied behavioral analysis (ABA), isn’t right for every child.

Joyner Emerick’s family decided early on that intervention was not something they wanted for their son, in part because they didn’t want him to appear less autistic.

“This is just a typical form of human diversity, and do we really want to take people who were born a certain way with a particular identity and put them in therapy to suppress that identity?” said Emerick, a Minneapolis school board member who has autism.

The decades-old practice, known as ABA, which is used to help people with autism change behaviors and develop skills, has drawn criticism in recent years from some people with autism and some parents who worry that the repetitive practice could be harmful.

Still, it is the overwhelming early intervention available to Minnesota families and the foundation of many services available to children with autism spectrum disorder across the United States.

Nearly all of the 10 autism service providers that receive the most Medicaid money through Minnesota’s Intensive Developmental and Behavioral Early Intervention program include ABA services on their websites. One provider did not have a website and did not respond to a call.

“All you hear is ABA, ABA, ABA. Again, I’ve 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 ABA, and we need to tailor services based on the needs of the child.”

The use of those Medicaid-funded autism benefits has grown exponentially and has recently come under scrutiny for possible fraud. The state Department of Human Services (DHS) said it has 15 active investigations into autism service providers receiving money through the benefit and 10 closed investigations.

DHS doesn’t have data on what proportion of early intervention benefit money is being used for ABA compared with other types of treatment or how many children are receiving that specific service, a spokeswoman said. Unlike other states, Minnesota has other types of treatment funded through the benefit, but ABA is the most popular, said Natasha Merz, deputy commissioner of Aging and Disability Services for DHS.

An evolving treatment

The way ABA is implemented can vary depending on the needs of the child and the provider.

Providers typically described using positive reinforcement, such as watching a YouTube video or running an obstacle course, to take incremental steps toward developing communication and other skills.

The approach relies on “positive reinforcement,” said Eric Larsson, executive director of Clinical Services at the Lovaas Institute of the Midwest. “If the person you’re working with is excited to learn from you because they’re getting what they want and it’s fun … they start paying attention to what you’re doing instead of sitting in the corner.”

However, in past decades, the practice used punishment to shape behavior.

In recent years, some adults with autism in the U.S. and around the world who experienced the practice as children 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 the children were not experiencing significant improvement.

There is also national scrutiny of billing practices in this 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 recent 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 impermissible 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 of Medicaid dollars have gone to autism service providers through Minnesota’s early intervention benefit since 2018. Some of the largest 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 of the University of Minnesota’s Institute for Community Integration. The American Academy of Pediatrics says most evidence-based treatment models for children with autism are based on ABA principles.

The challenge is trying to affirm neurodiversity while also addressing situations where a child engages in dangerous behaviors, such as running away from home, self-harming or assault, Simacek said. She doesn’t want parents to be afraid to step forward and say, “While I celebrate my child, these are areas where we need help.”

The field continues to change, said Odessa Luna, president of the Minnesota Northland Association for Behavior Analysis professional group. Luna, who teaches at St. Cloud State University, said the field is moving away from trying to eliminate behaviors such as repetitive finger and arm movements or rocking.

“These are actually behaviors that reassure us or are an indicator that something is not right,” she said. “We have evolved as a discipline, but I also think that society has become much more tolerant of people who present differently.”

More oversight and licensing?

Oversight is critical to ensure providers evolve and meet the highest standards for helping children, advocates said.

Merz said services provided under the state’s early intervention benefit must be provided or supervised by a licensed physician. However, the providers themselves do not need a license, and there are no regular inspections of the organizations or individuals doing the work.

State lawmakers recently voted to begin licensing behavior analysts, and Merz noted that DHS is studying whether to license services funded through the early intervention benefit.

She also noted that the state’s system is set up so that the family or person receiving services is the one who drives the treatment goals and determines whether ABA or other methods will be used to achieve them.

But Jules Edwards, a disability justice advocate and co-founder of the Autism Alliance of Minnesota, said, “There’s a lot of coercion and fear tactics, and that scares parents into thinking they have to do ABA or else…”

ABA was an “automatic no” when her son was diagnosed with autism, she said, noting that her friends’ children had recently had negative experiences with him.

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 with services for the disabled, she said, “there just aren’t enough providers.”

© 2024 Star Tribune
Distributed by Tribune Content Agency, LLC

Read more stories like this. Sign up for Disability Scoop’s free email newsletter to receive the latest developmental disability news directly to your inbox.