Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in Comparative Effectiveness Research Project

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.

 

 

“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.