Challenging Case: Leveraging Community Partnerships to Address Barriers to Care for Students with Autism

Sam is an 11-year-old young boy with autism spectrum disorder (ASD), unspecified anxiety disorder, and attention-deficit/hyperactivity disorder, combined presentation. He was initially diagnosed with ASD at 6 years of age after evaluation by a developmental-behavioral (DB) pediatrician. He presents to the DB pediatrics clinic to reestablish care. He established care with psychiatry 5 months ago after his school referred him to a hospital-school-community telepartnership bridge program following statements of self-harm and numerous concerns with his behavior, including elopement.Sam currently receives special education support under the classifications of "Emotional Disturbance" and "Speech Impairment." His parents report significant challenges with having his medical diagnosis of autism recognized by the school, which has impeded him receiving educational support as a student with autism. This has resulted in Sam being penalized for challenging behaviors related to his neurodevelopmental disorder. He is not currently making meaningful progress in the school setting. Sam currently demonstrates avoidance, physical and verbal aggression, and difficulty adapting to change across settings. In addition to difficulties advocating for more individualized support at school, Sam has never received applied behavior analysis (ABA) therapy because of challenges obtaining insurance approval. There are no additional barriers to accessing care, such as language, geographic, or socioeconomic factors.Sam's visit to reestablish care with DB pediatrics consisted of an individual clinician evaluation model. The Childhood Autism Rating Scale, Second Edition, (CARS-2) and Vineland Adaptive Behavior Scales, Third Edition (Vineland-3), were administered, and Sam continued to meet DSM-5 criteria for ASD following re-evaluation. A new referral for ABA therapy was submitted. Shortly afterward, his family received an insurance denial letter specifying that additional developmental testing was needed before ABA therapy would be approved. His clinician called the insurance company to appeal this decision but was unsuccessful. Sam was then seen by the DB pediatrics embedded psychologist, who completed additional testing, including assessment of cognitive functioning, administration of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), and autism-specific rating scales. This process led to further delays in access to ABA services. Throughout this process, the parents reported feeling helpless and frustrated given the barriers faced in receiving appropriate services. What are your next steps to advocate for supports through the school and insurance company?