616 - Improving Cross Sector Transition Care for Youth and Young Adults with Autism and Intellectual Disabilities

Poster Number: 616
Publication Number: 616.2201

Background: A cross-sector clinic for transition aged youth (TAY) with Autism Spectrum Disorder (ASD) and Intellectual Disability (IDD) was created via partnerships between Developmental Services, Family Medicine and Pediatrics. This clinic facilitated transition from pediatric to adult based services.

Objective: Using a multi-phase, mixed-methods study, we are evaluating the implementation of the clinic and highlight the needs and goals of TAY with ASD/IDD and their caregivers.

Design/Methods: Phase 1 included a retrospective chart review of patients who accessed the TAY clinic during its pilot implementation (2018-2022). Data included standardized forms completed at clinic intake about patient and caregiver demographics and transition planning goals. TAY clinic service usage data was also coded, including frequency, intensity and types of the transition support provided; and involvement of crisis services and hospital admissions. Phase 2 (currently in progress builds on phase 1 and includes qualitative interviews to deepen our understanding of phase 1 findings, and explore the perceptions, experiences, and expectations of the families and professional stakeholders involved.

Results: The TAY clinic provided services to 81 families over the 5-year period. 64 families successfully met their stated transition goals and were discharged, 12 were lost to follow up, 4 did not meet their goals, and 1 was deceased.

Examination of service usage indicated a bimodal pattern, with families largely falling into 2 main categories - low intensity and high intensity support needs. The low group required less than 10 hrs total of service and mostly written materials; the high group required up to 94 hrs of direct 1:1 in person support. Key goals achieved across both groups included access to primary care, specialists, and completing applications for adult funding. For the high group, they accessed service navigation and crisis services. The high group’s profile included past involvement with Child Protective Service, documented aggressive behaviours, previous hospitalizations, and caregivers with physical and/or mental health concerns and financial instability.

Conclusion(s): Our data shows that high support needs TAY with ASD/IDD have specific characteristics, which can be screened by a trusted care provider. Phase 1 findings have informed our Phase 2 stage currently in progress and results are forthcoming. Further discussion across sectors can help operationalize the results towards earlier identification of high intensity support needs families and create a cross sector approach for transition.