Shaunna Thompson was struggling to find childcare for her daughter Abbie. In 2022, Abbie was expelled from daycare due to her erratic behavior. Thompson eventually found a in-home provider but was informed that Abbie’s behavior was too much to handle every day.

Thompson’s experiences inspired her to seek help for her daughter, who was also not meeting developmental milestones. In October of last year, Abbie, now 3, was diagnosed with autism spectrum disorder.

In March, Thompson signed up for her daughter to receive applied behavior analysis, a form of therapy that focuses on improving communication, social, and motor skills. The therapy was provided for 40 hours a week at a nearby facility in northern Indiana. As a result, Abbie, who had been nonverbal for most of her life, was able to utter her first word: “Mom.”

Thompson stated that it made him cry.

However, Thompson and other families who depend on Medicaid are concerned that upcoming changes in January may restrict their ability to receive therapy. Indiana is trying to reduce costs and, like other states, decrease the scope of the low-income healthcare program.

The Family and Social Services Administration in Indiana announced that the expenses for Medicaid reimbursement for behavioral therapy, known as ABA, have significantly increased due to an increase in the number of children receiving these services and the amount charged by providers to the state. The state intends to implement a standard hourly reimbursement rate for the therapy, which is lower than the average amount received by providers in the past.

Advocates and facilities are concerned that this will result in fewer patients being accepted or potentially even closure, as has been seen in other states like Colorado in the current year.

According to J.J. Tomash, the leader of BehaviorSpan, an ABA provider in Colorado, numerous companies have departed and this has led to a critical situation. He holds the inadequate Medicaid reimbursement rates responsible for not matching the increasing cost of living.

Medicaid began covering the services in 2016, and providers in Indiana set their own rates until now. But centers say the new rates are still not enough to keep them running and are far below the previous statewide average of $97 per hour.

The Indiana Act for Families, a group that is against the new rates, stated that the plan is 10% lower than what providers need to cover their expenses. While Indiana claims that the rates are in line with those in other states, the coalition contests this by pointing out that the state relied on old data for their comparison.

Miles Hodge, owner and co-founder of Shine Pediatric Therapy in Indianapolis, said the effects of the new rates will take their toll over time. The state said the rates will be up for review every four years, a time frame Hodge said does not keep up with inflation.

He stated that it has the potential to put many individuals in a difficult financial situation.

In 2022, the state reported that approximately 6,200 children and young adults were provided with services through Medicaid.

According to Hodge, ABA therapy has a 1-to-1 patient to therapist ratio, making it a highly staff-intensive approach. He predicts that staff compensation and benefits will be affected throughout the state, potentially resulting in high turnover rates and inconsistent treatment for patients.

Hodge anticipates that his center will need to reduce the number of patients who receive Medicaid due to the alterations.

The Indiana Medicaid agency reported that the only service category without a standardized reimbursement rate was therapy, and the cost of these services has been continuously increasing, making it unsustainable. The agency also noted a 50% annual increase in ABA expenses over the past three years.

The state reported that ABA claims accounted for $420 million of Medicaid spending in 2022. The total Medicaid expenses for state fiscal year 2022 were over $16 billion.

At the same time as states are ending pandemic-related safeguards that provided Medicaid coverage for millions of individuals, there has been a significant increase in the number of people enrolled in Medicaid in Indiana. This trend continued from March 2020 until the protections were terminated on May 23 due to the federal budget law.

The total number of enrolled students in Indiana has decreased each month since that time.

Jennifer Lav, a senior attorney with the National Health Law Program, stated that it is common for states to establish universal rates. However, she also noted that low reimbursement can put individuals with disabilities at risk of losing access to important services.

According to her, reducing rates during periods of elevated inflation may result in employee turnover and shortages, which can be especially problematic in rural regions.

Zoe Gross, advocacy director at the Autistic Self-Advocacy Network, expressed criticism towards ABA. According to Gross, ABA aims to eradicate behaviors that are characteristic of autism and instructs children to conform to neurotypical behaviors.

She stated that it shows you that your natural behavior is unacceptable.

However, families who have benefitted from it struggle to envision a future without being able to access it.

Natasha Virgil, a 29-year-old resident of Westfield, a suburb of Indianapolis, stated that her family’s involvement in activities outside of their house significantly increased after her 6-year-old son, Elijah Hill, started ABA therapy.

Virgil expressed her biggest priority as ensuring her son has the necessary tools to thrive in this world and navigate life successfully. She held her 4-month-old daughter while watching Elijah play with soap bubbles by the family’s Christmas tree.

According to Virgil, it is challenging for parents of children with disabilities to maintain employment due to the frequent therapy sessions and doctor’s appointments.

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She stated that if they had not pursued ABA, she does not believe they would be in their current position.

Chanel McClure, the mother of King, a 2-year-old child, expressed that she has been losing sleep due to the upcoming change. She spoke with various centers in her search for the ABA therapy she desired for her son. Unfortunately, he was placed on a waiting list for 11 months before being able to receive treatment.

At nearly 3 years old, King does not speak and goes to speech, occupational, and developmental therapy. According to McClure, he has acquired fresh methods of communication and is at ease playing with peers since starting ABA. His therapists are currently addressing the tendency to run away or wander, which is typical in children with autism.

“According to McClure, King blossomed like a flower.”