Reconciling the Past and Changing the Future
Engaging Young Adults with IDD-MH and Researchers in Comparative Effectiveness Research
This website shares what was learned during a project to begin to reconcile past harms and change the way research is conducted with persons with intellectual and/or developmental disabilities and mental health service experiences (IDD-MH) and their families.
Why does IDD-MH Matter?
People with intellectual and/or developmental disabilities and mental health service experiences (IDD-MH) have a long history of unequal services and exclusion from active participation in most elements of research. Many harms have occurred when people with IDD-MH have been excluded from research or included in ways that did not recognize the rights of people with IDD-MH as full participants. These harms affect the person and their family, the type of supports and services that are provided, and the community as a whole.
Together we must learn from past experiences and make things better going forward. The principles on this website can help people with IDD-MH, their families, and researchers to partner in comparative effectiveness research.
The website is organized around four principles that support partnerships between young adults with IDD-MH, family members, and researchers.
Click on each red box to learn more.
“We looked to the past. We learned from those mistakes, now we move forward together and make it better. And I think that was very positive”
- Young Adult, Truth & Reconciliation Forum
This project was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #15364).