Supporting Youth Transitions: A Community-Driven Collaboration Between CESI and Developmental Support Service Agencies
A key principle of community-engaged scholarship is that it addresses community-identified research priorities. This means that community members - rather than researchers - determine the goals of a research project to ensure its findings will be relevant to their needs. A recent partnership between the Community Engaged Scholarship Institute (CESI) and a group of developmental support service agencies demonstrates the strengths of this community-driven research approach. Over two years, CESI worked with four Community Living agencies (Stratford and Area, Cambridge, Guelph and Wellington, and Owen Sound) on research into how to support youth with developmental disabilities as they transition from Child to Adult Developmental Services. The agencies spearheaded the project, while CESI contributed knowledge mobilization, methodological, and research support. The result was a mutually beneficial partnership that illustrates what can be achieved when community and academic organizations trust in and rely upon one another’s skills and knowledge.
Understanding the Priorities of Transitional Aged Youth
Developmental support service agencies across the province support youth aged 18 to 29 who have a dual diagnosis of developmental disabilities and mental health as they transition from Children’s to Adult services. These youth have priorities and dreams for their adult lives but face multiple barriers to living with dignity, health, and safety as adults. These include internalized stigma about their disabilities, histories of trauma, and involvement in the criminal justice system. They also face barriers related to the lack of youth-specific supports at Adult Services agencies and support systems that do not integrate developmental and mental health services for those with dual diagnoses.
In early 2017, multiple developmental support service agencies agreed that they wanted to better understand and support this youth population. To meet this goal, four agency directors formed a working group. In fall 2017, the group worked with a student researcher to conduct a pilot study on transitional aged youth with dual diagnoses. This pilot study included interviews with 25 youth and focus groups with managers and disability support workers from across the four agencies.
Working with CESI: A Partnership Created Through Trust
An initial partnership was formed to collect data and complete the early stages of the project. After collecting data, the working group looked for a research partner to assist with data analysis. Through a series of mutual connections, it was brought to Dr. Elizabeth Jackson, CESI Director. CESI then joined the project as an academic partner; PhD student Jess Notwell was recruited to analyze the collected data, and Caroline Duvieusart-Dery, CESI Knowledge Mobilization Coordinator, helped the group mobilize their research findings. Dr. Jackson noted that the trustworthiness of the relationships that connected CESI with the partner agencies enabled the two partners to jump into their collaboration confidently, despite having never worked together before. This laid the groundwork for a deeply collaborative research process in which CESI trusted the agencies’ sector-specific expertise, and the agencies trusted CESI’s understanding of their project’s goals.
“We knew what we wanted out of this process, but we didn’t know how to get there. And to be able to collaborate with CESI was an amazing partnership because they helped us walk that path. We’re in social services; we’re always collaborating across our agencies and trying to find the best ways to do things. But to be able to reach outside of that network and build these relationships and collaborations was such an enormous step forward for us. [Without CESI], our focus groups probably wouldn’t have gotten to the bottom of what we really were looking for, because we’re not skilled in putting those together. It was an amazing process to learn that we can have these partnerships and rely on the people who have the [research] skills.” - Sara Ropp, Manager, Community Living Stratford and Area
Mobilizing the Knowledge Created by Supporting Youth Transitions
As Jess conducted a thematic analysis of the interview and focus group data, Caroline helped the working group determine how to mobilize their findings. The group decided to create two separate research briefs for different stakeholder groups: one education-focused Youth Transitions report, and another policy-focused Youth Transitions brief. To further mobilize their findings, the agencies also decided to create individual regional infographics about the research project. Sara Ropp, Manager at Community Living Stratford and Area, noted that Caroline’s recommendations played a key role in helping the working group make their research findings actionable.
As another key knowledge mobilization contribution, Caroline and the four agencies collaboratively organized a launch event for the research briefs in November 2019. Caroline worked with the agencies to assess their desired impact so that they could make strategic invitations. This helped them determine that it would be most impactful to hold a small event where they could share their findings with policy and decision makers. Jess presented the findings from this research project, enabling decision makers to hear directly from the youth and practitioners impacted by their policies.
Humility: A Key Component of Community-Engaged Research
In reflecting on the partnership, both project partners noted that humility was key to working together effectively. For example, for Dr. Jackson, the project highlighted the power and capacity held by people with lived experience and the importance of using her skills and resources to meet community-identified research priorities. This was reflected in the fact that the research questions for the project were entirely developed by its stakeholders (developmental support service agencies, youth and practitioners). In turn, CESI contributed its research and knowledge mobilization expertise to help meet the needs identified by the community. Humility was also required of the four agency directors, who had to “leave their egos at the door,” as Sara put it, when investigating the barriers that youth faced at their agencies. The humility of both partners enabled the project to get to the root of how to best support transitional aged youth.
“It’s not to me to tell you what to care about… it’s to me to become an accomplice to the work and support it through the resources and skills that I am able to leverage to create the greatest impact. The project reaffirmed to me the power and capacity that lies in the knowledge of practitioner-experts and people with lived experience. It enriches everything to have [diverse] voices in the room, in our heads, and at the table throughout the process, including the transitional aged youth, who were a key part of the research.” - Dr. Elizabeth Jackson, Director, CESI
What’s Next?
The partnership between CESI and the group of developmental support service agencies has created strong momentum to develop better supports for transitional aged youth in the future. Since the reports were released, the working group has shared their findings with a variety of organizations and policy makers in Ontario and with their local Members of Parliament. These meetings led to the policy report being read by Ontario’s Minister of Children, Community, and Social Services. The working group has also begun to garner support for a second phase of the project that will investigate how to best support transitional aged youth province-wide. Sara noted that the working group is interested in another academic partnership for phase two, given the effectiveness of their partnership with CESI. This ongoing momentum, and the impacts that the partnership has already had, demonstrate the effectiveness of research that is driven by community-identified priorities.
For more information on the this project and its outputs, please see the Supporting Youth Transitions project page.