Engaging young adults with disabilities and their families to improve community programming: A Photovoice project

March of Dimes Canada (MODC) conducted community consultations and found that 58% of parents strongly agreed that there were gaps in services available for young people with disabilities. This led to MODC conducting community-based research to identify new ways to provide family-centered services and programming, while also deepening community connections. We conducted an arts-based research project using Photovoice methodology, which is a powerful research method that has been used by marginalized communities for many years to capture their experiences and perspectives. The study population for this project included youth aged 6 to 25 who are living with a disability; and parents/guardians of children/youth living with a disability. Participants were asked to take and caption photos based on a series of prompts that focused on: () what participants viewed as program strengths and gaps, (2) how they navigate the social and health systems, (3) participants interests, hopes and dreams, and (4) the barriers they face in their everyday lives. Between January 2023 and May 2024, a total of 29 participants from across Canada completed four separate photo activities exploring the foci described above. The participants also completed interviews and focus groups to further discuss their experiences and share their reflections on the photos they captured. Study activities were designed and reviewed by youth and parent advisory committees, ensuring the photo prompts, methods, interviews and focus group discussions were grounded in community interests and needs. To date we have identified five overarching findings: ) Community programs and services are not inclusive and accessible for young people with disabilities and their families/caregivers, with transportation presenting a key barrier; 2) community programs and services do not align with the actual needs of young people with disabilities, specifically young people are looking to connect socially with others and build a sense of belonging; 3) there are many unmet needs for families/caregivers of young people with disabilities, including supporting their mental health and well-being; 4) it is difficult to learn about and navigate both health and social care services; and 5) the transition to adulthood continues to be difficult for young people with disabilities. Currently, our organization is using these findings to improve current programming and inform the development of new, family-centered programming across Canada. This study has shown that young people with disabilities and their families still face many challenges when seeking the support they need to thrive in their communities. It is clear that as we move to improve integrated health and social care systems, we need to authentically engage with communities to ensure we are meeting their actual needs. Organizations and service providers also need to think carefully about accessibility, from transportation, to navigating physical and online spaces, as well easily accessing the right care at the right time. Using the findings from this work to inform program design and improvement is imperative to creating an accessible and barrier-free Canada where everyone can thrive.