(PS11-D93) Understanding Care Coordination Needs for Autistic Children and Their Families

Background: Navigating the health care needs of children with Autism Spectrum Disorder (ASD) is a complex process requiring time, knowledge of systems (e.g., medical, insurance, educational), and health literacy. As a result of these complexities, families often experience long lags between their child receiving a diagnosis of ASD and starting interventions. This lag-time is doubly impactful, as most often families have waited for months and sometimes years to access an ASD diagnostic evaluation in a medical setting. This is particularly true for families identifying as Black, Indigenous, and People of Color (BIPOC) and for families experiencing poverty who face many barriers to accessing care (e.g., insurance-related network inadequacies, transportation needs, lack of daytime flexibility). Therefore, care coordination (CC) plays a vital role in mitigating health disparities by connecting children with ASD with needed resources. Given that traditional models do not include following families once a diagnosis and recommendations are made, it is difficult to know exactly how much support families require in accessing these services. The goal of this study is to quantify that need.



Objectives: To describe the length and intensity of CC involvement for children receiving ASD diagnostic evaluations in an urban primary care setting.



Methods: Children with suspected ASD were referred by their Primary Care Providers (PCPs) for an ASD evaluation conducted by an integrated primary care psychologist. Services were provided in-clinic and via telemedicine due to COVID-19 related disruptions to clinical services. CC services were initiated following completion of the evaluation in various modalities (e.g., phone, text, email). CC services included sending appointment reminders to families, generating referrals for treatment, supporting families in transitioning to special needs insurance, communicating with various organizations on behalf of the parent (e.g., government agencies, service providers), completing paperwork and applications, monitoring progress, and problem-solving barriers and roadblocks. Discharge from CC services was determined by connection to treatment providers (i.e., appointments scheduled or waitlist placement), expressed family readiness to discontinue, or failure to follow-up after multiple attempts made by the coordinator. Data was collected on number and type of contacts made, as well as duration of CC services.

Results: Twenty-two children who were diagnosed with ASD from January 2020 to September 2021 received follow up CC services (Average Age: 32 months; 45% male; 91% Black, 4.5% Hispanic, 4.5% Other). At the time of data analysis, only seven of 22 children had been discharged from CC with an average duration of support lasting 9.4 months (264 days). Analysis of number of contacts during this time noted an average of 11.3 coordinator-initiated contacts and an average of 9.1 family responses. CC is ongoing for 15 children and their families.  



Conclusions: CC is a critical service that provides a bridge from evaluation to treatment, and in doing so, influences outcomes for children with ASD. Areas for future research involve investigating time to treatment for children with and without CC support.