Navigation Support and Access to Federal Programs: Self‐Advocate Facilitated Focus Group Findings

Background In Canada, people with an intellectual disability and their families often have trouble accessing federal programs. Applications can be hard to understand, services may be disconnected and information is not always easy to find. Methods Six online focus groups were conducted with 30 participants, exploring the question: What are the experiences of people with an intellectual disability and their families in trying to access federal programs and services in Canada, and how could a navigator help make these systems easier to use? Groups were co‐facilitated by researchers with and without disabilities using accessible materials. Findings Six themes emerged from the focus groups: (1) difficulty finding program information, (2) reliance on informal networks, (3) complex and inaccessible applications, (4) challenges at transition points, (5) need for holistic, personalised navigation and (6) importance of navigator quality and consistency. Conclusions Participants indicated that navigation supports are desired to help people with an intellectual disability and their families access federal programs. They work best when designed with input from people with lived experience with disability, and navigators are properly trained. Navigation can be a helpful tool to improve equity, but broader changes in policies and systems are also needed to remove barriers.