Improving Health Outcomes for People with Intellectual and Developmental Disabilities: My ROAD
Every person deserves the right to make decisions about their own health, yet for adults with intellectual and developmental disabilities (IDD), that right is too often overlooked, minimized, or taken away entirely.
When people are not given the chance to direct their own healthcare, the consequences go beyond a single appointment or decision; they affect confidence, self-determination, and the fundamental belief that one's voice matters.
Dignity of risk is a pathway to a full life experience. Without the power of making mistakes, individuals do not build the fortitude necessary to develop into their true identities, establish careers, or fully participate in their communities.
- Chris Worth, My ROAD project co-director
The Free Online Toolkit
The My ROAD to Health team is creating a free online toolkit, expected to be available in late 2026, to help adults with IDD take charge of their own healthcare. The toolkit is built around the concept of dignity of risk, which means trusting someone to make their own decisions, try new things, and learn from experience, while still giving support when needed.
The toolkit will focus on four main areas:
- Using dignity of risk in everyday life;
- Building self-determination skills;
- Making informed healthcare decisions; and
- Strengthening one's circle of support.
It will include videos, tip sheets, and other easy-to-use tools, some available in Spanish, to help people with IDD navigate healthcare choices—no matter their guardianship status.
To make sure the toolkit is helpful and easy to use, My ROAD to Health is guided by a 12-member Empowerment Board made up of self-advocates, family members, and healthcare providers. The project also includes two rounds of focus groups with adults with IDD to give input on the toolkit.
In addition to resources for people with IDD, the toolkit will also include tools for family members and healthcare providers, so everyone can work together to support self-directed healthcare.
