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

This case describes an 11-year-old boy with autism who struggled to get proper support at school and therapy services through insurance. Even though doctors diagnosed him with autism, his school wouldn't recognize this diagnosis, so he didn't get autism-specific help. His family also had trouble getting insurance to cover ABA therapy, facing multiple rejections and needing extra testing. The case shows how families can face barriers across different systems when trying to get appropriate support for their autistic children.

This case study examines an 11-year-old boy with autism spectrum disorder, anxiety, and ADHD who faces significant barriers to appropriate care and services. Despite having a medical diagnosis of autism, the school system does not recognize this diagnosis, classifying him under 'Emotional Disturbance' rather than autism, which limits access to autism-specific educational supports. The family also encountered insurance barriers to accessing Applied Behavior Analysis (ABA) therapy, with multiple denials requiring extensive additional testing. The case highlights systemic challenges in coordinating care between medical, educational, and insurance systems, resulting in delayed interventions and family frustration.

The study demonstrates the need for improved community partnerships and advocacy strategies to address these multi-system barriers.

Clinicians should be prepared to advocate across multiple systems for autistic patients. Development of streamlined processes between medical, educational, and insurance systems could reduce barriers to care. Community partnerships and bridge programs may help coordinate services and reduce delays in accessing appropriate interventions.

This is a single case study limiting generalizability. The abstract does not provide specific outcome data or quantitative measures of intervention effectiveness. No follow-up information is provided to assess long-term outcomes or resolution of identified barriers.

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?