About the Project

This research project aimed to understand the challenges and supports experienced by transitional-aged youth (aged 11 to 29) with intellectual or developmental disabilities (IDDs) and mental health or addiction (MHA) concerns and their families, when accessing MHA care. A key focus was to explore the obstacles, needs, and factors that help these young people obtain appropriate services. The research project also examined whether family navigation services could improve access to care and enhance youth’s quality of life. Additionally, a secondary part of the project analyzed referral patterns to IDD and MHA services to identify underserved communities that might benefit from targeted outreach.

Methodology

Part 1: Scoping Review:

A literature search was conducted to produce a scoping review using thematic analysis. The researcher analyzed psychology databases, with a focus on youth aged 11 to 29 with co-occurring intellectual/developmental disabilities (IDDs) and mental health or addiction (MHA) concerns, when accessing or receiving MHA care. From 1,297 studies identified, 168 were fully reviewed, and 18 were selected for inclusion in the final analysis.

Throughout this process, ongoing communication was maintained with the Family Navigation Project (FNP) team, and their feedback at various stages supported the successful completion of the project. A qualitative thematic analysis was then conducted to identify and develop key themes regarding the barriers and facilitators that youth with co-occurring conditions faced when trying to access MHA care.

Part 2: Referral Patterns Analysis (Family Navigation Project):

This analysis was conducted through the Family Navigation Project (FNP) using their established protocol. Navigators collected detailed information during consultations with caregivers or youth.

The project focused on:

• How frequently different types of clients were referred to the program.

• How referral patterns varied by factors such as age and ethnicity.

• Whether specific client characteristics were linked to the length of time clients stayed in the program.

Examples of data categories that were examined included client demographics (e.g. age, race, geographical location), length of navigation services, diagnosed psychiatric concerns and many others.

Analysis for part 2 is ongoing and expected to be completed soon.

Findings

Four major themes were identified through this scoping review:

1. Systemic and Structural Factors - The review identified significant obstacles affecting access to mental health and addiction services for youth, particularly those with co-occurring developmental disabilities. Key challenges included high costs, lack of insurance coverage, and difficulties transitioning from child to adult care. Many youths were denied services due to the complexity of their needs or their diagnosis, highlighting the need for enhanced training, increased funding, and more inclusive service systems.

2. Communication, Coordination, and Navigation of Care- Effective communication and coordination among caregivers, youth, and healthcare professionals were found to improve service access, transition experiences, and satisfaction with care. However, many youths still encountered difficulties finding services tailored to their specific needs, despite available resources.

3. Flexibility in Care Delivery– The importance of providing individualized, inclusive, and developmentally appropriate mental health and addiction care was emphasized, especially for youth with co-occurring conditions. Standardized, time-limited appointments were often insufficient, particularly for those with communication challenges, highlighting the need for flexible, accessible care models that promote continuity and responsiveness.

4. Continuity of Care and Transition Planning from Youth to Adulthood- Person-centered transition planning was identified as essential for youth with co-occurring intellectual/developmental disabilities and mental health needs. Flexible and individualized planning helped address unique requirements, but transitions were frequently overlooked within healthcare systems. This led to fragmented care and increased anxiety among youth who felt unprepared for adult services. While some experienced successful transitions, many faced service gaps and disengagement due to inadequate planning.

Project Outreach

The project is currently limited to the Greater Toronto Area, but the team plans to expand it using a research-based approach. They are sharing their findings through submissions to scientific journal platforms like SAGE and the Focus on Autism and Other Developmental Disabilities to reach a global audience. The project is also part of the researcher’s thesis, which will help increase its visibility and impact.

Resources Created

• 6 Presentations

  • Dissemination of findings at a lunch and learn will all staff from at Family Navigation Project (December 2024)

  • Presented preliminary findings at the Canadian Health Care Navigation Conference (May 1, 2024)

  • Poster presentation at Sunnybrook’s Research Institute Research Day (June 10, 2024)

  • Multiple poster presentation at the University of Toronto

  • Presentation at the Rehabilitation Sciences Institute Research Day (May 30, 2024)

  • Presentation at the Faculty of Medicine Conference (May 16, 2024)

• Abstract of this project has been submitted for future presentations in 2025 for the Best Practices Day at the GTA Rehab Network, Rehabilitation Sciences Institute Research Day 2025, and the Canadian Healthcare Navigation Conference 2025.

• Future publications, presentations, and project summaries will contribute to the ongoing dissemination of this project.