Jumpstarting to Independence: A creative solution to improve equity in Applied Behavior Analysis therapy for children with Autism Spectrum Disorder

Children diagnosed with Autism Spectrum Disorder (ASD) often benefit from a type of therapy called Applied Behavior Analysis (ABA). ABA can help patients with common challenges of ASD, such as noise sensitivity, communication, attention and daily activities. ABA therapy is generally delivered in a one-on-one setting — typically in the family home, an ABA therapy center or school — to support children with ASD and help work through challenges.

With ABA therapy, clinicians utilize techniques to encourage behavioral changes, improve patients’ overall independent life skills such as getting dressed, develop communication skills and decrease maladaptive behaviors. Prior research has shown that for patients with ASD, ABA therapy has positive results.

Despite the evidence-based effectiveness of ABA therapy, in the state of Illinois, barriers exist for children insured by Medicaid, leading to disparities in care for ASD.

A new program at Comer Children’s Hospital aims to reduce this disparity.

Many children with ASD who have private insurance receive intensive, individualized ABA therapy in their homes (with the recommended intensity of 25 hours per week). With these intensive therapies, children may learn to communicate more effectively, show improvement in behavior and adaptive skills, and parents may feel more confident in their skills in supporting their child’s needs. However, patients with ASD without private insurance do not have access to these resources, leaving them without the proper tools to navigate challenges.

“It has always been a problem that children with Medicaid, who have autism, are not able to get recommended evidence-based therapy, and unfortunately, it just became an accepted reality of our practice,” says Sarah Sobotka, MD, MSCP, an assistant professor of pediatrics who specializes in developmental and behavioral pediatrics.

With the support of philanthropic funding from the Comer Children’s Development Board, Sobotka designed their program — Jumpstarting to Independence — to establish a short-term ABA program guided by both a developmental and behavioral pediatrician, as well as a Board Certified Behavior Analyst (BCBA). Sobotka and her team will use these funds to launch the clinical and research program.

Through Jumpstarting to Independence, Sobotka and her team hope to serve about 100 patients each year. The therapy program, which will launch later in 2023, will create a two-month therapy program for patients who have not had the opportunity to receive ABA therapy before. Parents will complete education modules online in-between visits with the BCBA in clinic.

Jumpstarting to Independence will also give medical trainees the opportunity to observe therapists working with patients with ASD.

Jumpstarting to Independence aims to deliver ABA therapy to patients who would otherwise not have access. “This innovative model aims to deliver education and short-term ABA therapy in our center in hopes of impacting more children,” Sobotka said.