A Medical Neighborhood Model for Chronic Autism Care: A Compassionate Systems Perspective

Children with autism spectrum disorder (ASD) are four times more likely to have unmet healthcare needs compared to their neurotypical peers. This underscores the urgent need to address healthcare disparities and improve access to services. However, primary care physicians express concern about their ability to adequately serve patients with ASD and their families, indicating a potential capacity issue in the current healthcare system (Yerramsetti, 29.5 The other patients: caregiver and clinician stress in treating autism spectrum disorder. J Am Acad Child Adolesc Psychiatry 56(10). https://doi.org/10.1016/j.jaac.2017.07.176 , 2017). Additionally, specialists such as neurologists and psychiatrists acknowledge difficulties in addressing the secondary conditions associated with ASD (Kohane et al., PLOS ONE 7(4):e33224, 2012). The knowledge gap within the medical community and overarching health services system has resulted in barriers to treatment and disparities in healthcare access for children with ASD. Accordingly, this chapter aims to emphasize that ASD is a complex, multidimensional, multifactorial, and enduring condition requiring comprehensive and integrated services. Moreover, we submit that beyond compassionate interactions within individual relationships, what is essential for families with children with ASD are compulsory, skilled, and responsive systems of care. In this chapter, we present a novel, interconnected ecosystem for chronic care based on a medical neighborhood model comprised of four integral components. These components include (1) comprehensive assessment and care planning, aiming to develop individualized, holistic care plans derived from extensive patient evaluations; (2) care navigation and coordination, which employs a dedicated coordinator to facilitate communication among healthcare providers and resources; (3) anticipatory guidance, intended to empower patients toward active self-management and early intervention for potential complications; and finally, (4) technology-enabled clinical decision support and humanistic artificial intelligence systems, to provide evidence-based recommendations and personalized, empathetic patient plans of care. These four components synergistically operate to promote patient-centered care, enhancing outcomes and the overall quality of care. This chapter concludes with an outline of the requisite metrics for evaluating the impact of the proposed model of care and a payment structure to produce a high-performing healthcare system for children with ASD and their families.