21 Cross-sectoral Care for Transitional Aged Youth (TAY) with Autism Spectrum Disorders and Intellectual Disabilities (ASD/IDD)

Abstract

Abstract Background The Transition Clinic for Youth and Young Adults (TAY clinic) with ASD/IDD is a unique partnership between the Developmental Sector and Health care sector. Surrey Place Centre, St. Michaels Family Health Teams and Developmental Paediatrics work with families of adolescents and young adults ages 14-22 to help transition from paediatrics-based healthcare and developmental services to adult sectors using a structured approach to transition. This clinic was a pilot project over the past 5 years, and we are using a mix-methods study to evaluate the implementation of the clinic and its impact on the lives of TAY with IDD and their caregivers. Objectives To describe patient and caregiver characteristics, usage of clinic, transition goals stated and achieved, and level of support needed. Design/Methods Quantitative data was collected using standardized forms including demographics, transition planning goals, and dates of applications to critical services like Developmental Service Ontario and Ontario Disability Support Program. The frequency, intensity and duration of transition planning support provided in the clinic was documented, as well as involvement of crisis services, child protection services, networks of specialized care, and hospital admissions. Results To date, 94 families have been supported through this clinic, with notable differences in the intensity and type of services required. Families were evenly distributed across three levels of transitional support need: (1) required consultation only; (2) required short-term intervention and follow up from the team with future crisis planning; and (3) families with extreme complexity, disconnected from the developmental sector and requiring intensive support and, at times, crisis care. In this 3rd group, 30% were regular emergency and crisis service users because of significant risk of harm or death to client or caregiver associated with physical or mental health concerns, and 15% were at risk of homelessness. Barriers to social determinants of health (e.g., housing, food security, social support) and inequities (based on race, immigration status, employment, English language proficiency) were present in all cases. Across all 3 groups, trajectories within the current systems of care were often apparent years before their transition. Conclusion Cross-sector models of care are feasible for TAY with IDD. This model of care identified different levels of need for TAY with IDD. Barriers to transition support are rooted in inequities and are often present years prior to transition. Paediatricians can help with earlier identification of families who require and deserve more comprehensive support.