We spoke with Dr. Tonie Sadler, Co-PI of My ROAD, who studies how healthcare and support systems affect people with intellectual and developmental disabilities (IDD). Her work focuses on making these systems more responsive to people’s real needs.
What does it mean to shift from providing services for people with disabilities to creating services or resources with the disability community?
It means moving from a top-down approach to a partnership model where people with disabilities shape the design, content, and delivery of services. Co-creation is a creative, relationship building process where in the goal is to create resources that reflect real needs, are accessible, and reach people in meaningful ways. Without this collaboration, services risk missing the mark on what is actually useful or important to the community.
In your own work, why has it been important to co-develop healthcare supports in collaboration with people with disabilities?
In my work providing home and community-based services, I saw that resources developed without lived experience often lacked relevance, buy-in, and real-world usability. Co-development leads to more effective supports because people with disabilities bring essential expertise. Beyond offering input, they should hold leadership roles and decision-making power in both development and outreach.
Can you give an example of when co-development has led to better understandings or solutions on a project?
During a project on inclusive research methods with the IDD community, our advisory board included self-advocates, researchers, and organizational leaders. In our first meeting, a self-advocate shared her fear of research due to historical trauma and unethical practices. This insight reshaped our approach, leading us to adopt trauma-informed outreach and research practices that built trust and improved engagement.
Can you share about one of your projects that is helping people with IDD navigate their healthcare decisions?
The Pathways from Waitlists to Person-Centered Supports for People with Intellectual and Developmental Disabilities (PATH-IDD) project helps individuals with IDD and their families navigate access to Medicaid Home and Community-Based Services (HCBS). It supports informed decision-making about services and creates person-centered tools that allow individuals to clearly communicate their needs and preferences to the state.