Partnering with People with Intellectual and Developmental Disabilities in Research

While the mantra “nothing about us without us� has guided disability advocacy since the 1990s, people with intellectual and developmental disabilities (IDD) are still frequently excluded from meaningful participation in the research process (Coons & Watson, 2013; Feldman et al., 2014, Rios et al., 2016). Literature suggests that this exclusion is not due to a lack of interest–studies of people with IDD have demonstrated that they have a desire to participate in research, to share their opinions, and to improve their lives and the lives of other people with IDD through research (McDonald et al., 2017). Additionally, the right of people to fully participate in their communities includes the rights to be involved in research as participants, members of research teams, and leaders (Johnson, 2009; Watson et al., 2014). This presentation will describe how we have included people with IDD in research that uses large datasets and secondary data analysis.

The use of large administrative datasets has been identified as a promising practice in IDD research, especially when multiple datasets can be merged. However, secondary data analysis can also be impersonal and divorced from the lived experiences of people with IDD and their families, particularly when research is led solely by an academic team. In this presentation, we will describe how we include an advisory board of self-advocates to ensure that our research centers the needs of people with IDD and their families and produces accessible, useful findings.

In this interactive session, people with IDD and academic researchers will share their experiences and host a discussion with attendees about how to make research partnerships authentic and mutually beneficial. Specifically, we will offer examples of how we have worked to build trust and relationships with self-advocates with IDD, how we have integrated feedback from the board into our research process, and how we share our findings to ensure that our research can be a useful tool for service planning, decision making, and advocacy. Examples of activities will include sharing videos from self-advocates involved in the research process, discussion of current practices among researchers who work with people with IDD, and small group discussion and practice developing accessible social media graphics to disseminate findings.

There is an urgent need for social work as a field to more intentionally include disability in its consideration of diversity, equity, and inclusion and to reckon with the historic harms committed by social workers against the IDD community (Slayter et al., 2023). Working to include self-advocates with IDD in the research process is a crucial first step towards this larger goal.