Grant: Catalyst Grant: Moving Upstream- Structural Det. of Health - Inequities in HDCYH

Youth with intellectual and developmental disabilities (IDD) require lifelong cross-sectoral (health, education, and social) care. Between 14-22 years of age, youth transition from pediatric to adult care, and caregivers must help them navigate to adult services. Leaving familiar service providers and completing complicated application processes can be overwhelming for caregivers, especially those who have faced discrimination, or are less familiar and connected with services, or require help with complex application forms. Scarcity, long waitlists, and siloed processes from each sector further complicate the transition process for families. Ontario's Ombudsman has reported on increasing cases of severe mental and physical health crises among youth with IDD, caregiver burnout, homelessness, and incarceration of youth with IDD. Critically, these experiences reflect intersecting experiences of ablelism, racism, national origin discrimination and the legacy of colonialism that exists in our cultural norms, practices and policies in the IDD. To date Canadian research on IDD has largely overlooked racism and discrimination, sustaining a significant knowledge gap that fuels disparities in health and well-being. With this funding, we aim to address this significant gap by establishing a strong team of researchers and knowledge users, respectfully gaining knowledge from youth and caregivers who have experienced racism and discrimination in their interactions within the IDD transition care system. Findings will be shared with families, communities, care professionals, and policymakers to support improved understanding of what is needed for system reform. Achieving these goals will lay the groundwork for the next phase of our knowledge-to-action research program, which seeks to create family-centered care pathways that place equity and families' voice at the centre of its design.