Reconciling the Past and Changing the Future
Know about and work to prevent harms in IDD-MH research & practice
All aspects of research must have meaningful involvement of persons with IDD-MH and their families
When people use their individual strengths, the team is stronger as a whole
- Leadership team
- Truth & Reconciliation co-facilitator teams
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 box below to learn more.
Know about and work to prevent harms in IDD-MH research & practice
All aspects of research must have meaningful involvement of persons with IDD-MH and their families
When people use their individual strengths, the team is stronger as a whole
“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).
Visit the project page on PCORI.org
Thank you also to Truth & Reconciliation Leadership Team members Micah Peace and Destiny Watkins and the NCSS Communications Coordinator for their significant contributions to the design of this website.