Systemic Inequities in Health Care: Lessons Learned From Black People With IDD and Their Care Partners

Black people with intellectual and developmental disabilities (IDD) are disproportionately impacted by health disparities and endure distinctive systemic challenges as a result of their intersecting identities.

This manuscript describes a collaborative project between university researchers, people with IDD and their care partners, and providers to understand contextual and individual characteristics that influence equitable health services access and use.

The project follows a critical participatory action research approach to address issues of power and equity at the intersections of race, gender, and disability. Data collection strategies included individual semi-structured interviews and focus groups, as well as interactive activities to facilitate deeper discussion.

We describe strategies to manage challenges of delayed recruitment, power sharing, equitable and inclusive engagement, and dissemination.

Lessons learned underscore the diverse experiential expertise of Black people with IDD, their care partners, and providers in the co-creation of knowledge, the importance of opportunities for partners from different stakeholder groups to cultivate relationships as part of the research process, co-reflexivity as instrumental to assessing and reassessing engagement processes in real time, and implementation of inclusive strategies for participation in dissemination activities.