Stakeholders discuss ABA therapy amid potential Medicaid cuts

Apr. 29—Adam Kunda remembers when his son turned 12 months old. He was speaking a bit with a limited vocabulary. Nothing seemed out of place.

Then, a few months later, his son's vocabulary began to regress. Some of the words he knew faded away, he didn't speak as much and he stopped making eye contact. His son also started seeking pressure by standing on his tiptoes or lying on the ground and acting like he was doing jumping jacks.

Since it was Kunda's first child, the changes were difficult to notice at first. But the St. Louis, Missouri, resident eventually picked up on the changes, especially when his son was around other children.

During a visit with his son's pediatrician, a standard check-in after his child turned 18 months old, the doctor said Kunda might want to bring his son to a child psychologist.

After an evaluation that lasted several hours, Kunda's son was diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder.

Thrown into a tempest of paperwork, insurance policies and changing family dynamics, Kunda decided to leave one marketing job for another. About five months after his son's diagnosis, Kunda started working with organizations that provide applied behavior analysis therapy.

What is ABA?

Lisa Steward, owner and director of the Indiana Behavior Analysis Academy, explained ABA is a set of behavioral principles that showcase the ways people learn skills or change behavior.

ABA therapy uses those principles to reinforce behaviors.

The system works particularly well with autistic individuals, Steward said.

"It can provide us a very well mapped out learning package," Steward said. "It can guide us in very systematically making changes."

At the forefront, she added, ABA therapy looks at what motivates an individual. Each patient is formally assessed so therapists can get a better idea of what motivates them. With children, Steward said, those motivations can range between things such as time on a trampoline to stickers or M&Ms.

"When you think of applied behavior analysis, you're not going to envision a child sitting at a table looking and working in a specific way," Steward said. "It could be any number of strategies that are used to really individualize a program. And I think that individualization is what makes kids most successful."

The director added that the therapy is research based, using "proven interventions and procedures."

Organizationally, she explained, Board Certified Behavior Analysts assess the patients, write and develop programs, train staff and work with families.

BCBAs require a master's degree or higher and a national certification.

ABA therapists, or Registered Behavior Technicians, work directly with patients.

The therapists require a high school diploma or higher and a national certification.

ABA got its start in the 1960s, Steward explained. She cited B.F. Skinner, a Harvard professor of psychology, as one the subject's founders.

However, mandates that required insurance companies to cover ABA therapy didn't take affect until around 2001, Steward said.

"There was a pretty big gap between when the science came about and the field really originated, and when people and families were able to access it," the director said.

Indiana, she added, was the first state to approve the mandate.

Now, Indiana's Office of Medicaid Policy and Planning is reviewing reimbursement rates for ABA therapy. Some organizations fear the office will block access to ABA therapy.

On the chopping block?

Back in February, the Indiana Autism Care and Therapy for Families coalition visited the Statehouse to speak with legislators about the impact a Medicaid reimbursement rate cut could have.

"Advocacy Day participants are speaking up due to concerns surrounding the Office of Medicaid Policy and Planning (OMPP)'s plans to change Medicaid reimbursement rates for Applied Behavioral Analysis (ABA) therapy — the most scientifically studied intervention for autism," the Indiana ACT for Families coalition said in a February press release.

Then, on Tuesday, the organization followed up with a letter to Indiana House and Senate leadership urging them to support an amendment that would delay the potential cuts to Medicaid's ABA reimbursement rate.

Earlier this month, the letter added, ABA therapy providers met with OMPP to discuss the rate review process.

"We expected a fulsome dialogue about methodologies, yet we left with more questions than answers," the letter said. "Providers received no indication of what the new rate may be, when a rate schedule can be expected, or how much notice providers will be awarded prior to the effective date."

While the coalition supported OMPP's efforts to implement a fixed Medicaid reimbursement rate that would keep providers' rates consistent, it forecasted "devastating consequences" for children with autism if ABA therapy rates were cut.

The coalition warned legislators the rate changes would limit access to ABA therapy and could shut down some therapy centers.

"Children with autism who come to our centers rely heavily on ABA therapy. If they lose access, it will impact them for a lifetime," the letter said. "If they cannot re-access therapy, it could permanently hinder their ability to live healthy, fulfilled lives."

Delaying reimbursement rate changes by a minimum of six months, the coalition argued, would allow families and therapy providers time to prepare.

The Office of Medicaid Policy and Planning did not respond to a request for comment.

Although Adam Kunda lives in Missouri, the organization he works for, Step Ahead ABA, has several offices in Indiana. The organization serves the Indianapolis area, Anderson, Lafayette, Fort Wayne and Bloomington.

The company focuses on in-home therapy and primarily serves populations that are commonly underserved, Kunda explained.

In many cases, Kunda said, ABA providers stop working with children after they enter kindergarten. Step Ahead ABA works with patients until the age of 21, which is the cut off for Medicaid coverage.

"If you can be on a Medicaid plan, and it will cover ABA therapy, we will provide therapy for you in-home," Kunda said.

With rising costs and salaries, he explained, Board Certified Behavior Analysts and ABA therapists are pursuing higher salaries. If Medicaid reimbursements aren't able to cover salaries, some companies will likely turn to commercial plans to stay afloat.

"As much as a lot of those providers would want to help families like mine and my son, it's just not a business model that they can operate within," Kunda said.

Steward mirrored Kunda's thoughts.

"If changes come for Medicaid where it limits funding or limits services, you'll see a real deficit in what's available to kids and what they need," Steward said. "We have a waiting list that's probably a year and a half long. So we're already not meeting the needs of children. But we would be able to support even less if Medicaid shifts."

How is ABA therapy different than what teachers do?

The U.S. Department of Education cites the Individuals with Disabilities Education Act as a federal law that ensures free public education to children with disabilities.

During the 2020-21 school year, more than 7.5 million infants, toddlers, children and youth were affected by the act.

The act also outlines how states and public agencies are supposed to provide special education. For example, each student with special needs receives an Individualized Education Plan.

Suzie Reagle, director of the Kokomo Area Special Education Cooperative, explained students with IEPs, "receive services through specially designed instruction based on the student's unique and individual needs."

"The role of a teacher is instruction on multiple levels, addressing students' needs from an educational approach," Reagle said. "ABA is a medical therapy and focuses on the medical needs of students."

Some ABA providers, Reagle added, "work well with schools to collaborate and identify the strengths of the student, challenges the student may encounter and strategies appropriate to address student needs."

Steward had similar thoughts, adding special education teachers are guided by state standards and the district or school they work for. ABA organizations primarily focus on functional skills, such as coping strategies that allow patients to join groups and helping patients learn to dress themselves.

Indiana Behavior Analysis Academy is also partnered with Options Charter School. Students in sixth grade or higher are able to attend the school, where they spend half the day with ABA therapists and the other half with educators.

Challenges to ABA

Speaking strictly as a parent, Kunda said he's heard a range of criticism against ABA therapy. Some are more rooted in reality, such as questioning the psychological impact children face when they have to complete a task for a reward. Others are more far fetched, such as fears that ABA therapists electrocute patients.

From what Kunda saw and experienced, his son was happy working with ABA therapists and he learned a lot.

A lot of things the therapists worked on with his son were things he was already working on at home. Kunda said they acted as a support system while he taught his kid to look both ways before crossing a street or how to eat with a fork.

That being said, he understands other people have different perspectives.

"I know that there are families out there that have those feelings. I know there's a lot of people who are on the autism spectrum themselves who have certain feelings about ABA therapy, and I can't speak to their perspectives because they're going to be different than my own," Kunda said. "I've never received ABA therapy, but I've worked with my son and his clinician."

Steward says she welcomes the questions and concerns.

"If somebody had an experience in ABA that was hard for them or concerning, voice that so that it really brings light to what's expected and maybe what is happening," Steward said. "There are probably practitioners in any field that are doing things they shouldn't be, and that's unfortunate."

The industry has also changed a lot in the past decade or so, she noted. Older practices could be more rote and repetitive.

A happy end

Kunda's son is now in first grade. He spends half his day in a general education classroom and the other half working with a therapist — whether it's an ABA therapist, a physical therapist, speech therapist or otherwise.

Like any other kid, he has good days and bad days. He also has lots of friends who hang out on the weekends.

"I would say that overall, he's enjoying it and still learning a lot," Kunda said.

James Bennett III can be reached at 765-454-8580 or james.bennett@kokomotribune.com.