Reconciling the Past & Changing the Future

What is this project about?

Today, many people with the lived experience of intellectual and developmental disabilities are left out of research. In particular, young adults with mental health service experiences (IDD-MH) are left out of research for the following reasons.

  • Researchers may have false beliefs about the ability of young adults with IDD-MH to participate in research.  An example of a false belief is that young adults with IDD-MH are not able to answer interview or survey questions or they are not able to share their goals or priorities for research.

  • Due to a history of harmful research practices, young adults with IDD-MH and their families may not trust researchers. As a result, they may not be willing to participate in research.  

  • Discrimination, bias, and stereotyping happen when people or groups of people are treated differently from other people, in a way that is unfair, unequal, or in some instances illegal. Young adults with IDD-MH and their families may experience discrimination in research that is made worse by their racial and ethnic identity, gender identity and expression, sexual orientation, literacy, language spoken, preferred form of communication, country of origin and other reasons.

Because of these and other reasons, very little research includes young adults with IDD-MH and their families in a meaningful manner. When this happens, research may not reflect their interests and concerns. Without good research, young adults with IDD-MH and their families may not get the right type of support and services.

 

The goal of this project was to support  people with the lived experience of IDD-MH, their families, and researchers to learn how to partner in the conduct of research, specifically  Comparative Effectiveness Research.

To accomplish this goal, the project team:

  1. Collaborated with young adults with the lived experience of IDD-MH and START providers from four states to develop and implement the Truth & Reconciliation Forums.

  2. Held a Transforming Research Forum for IDD-MH Researchers.

  3. Evaluated the forums to see what worked and what we could do better next time.

Meet our leadership team!


Leadership Team (in alphabetical order)

Our Partners

Truth & Reconciliation Co-Facilitator Teams:
Forums were co-facilitated by teams of young adults with IDD-MH and certified START coordinators. We had four co-facilitator teams:

  • Marya Laviste & Lauren Oliver, Seattle, Washington

  • Stefon Smith & Julian Cantres, New York, New York

  • Demetra Grigley & Maudeb Maybin, Ashville, North Carolina

  • Kristin Gratz & Matt Bishop, San Andreas, California

Co-facilitator teams also participated in the Advisory Board.

Additional Advisory Board Members:

 


Special recognition to NCSS team members Andrea Caoili, Dave O’Neal, Anne LaForce, and Shannon Wedge for providing important support to the co-facilitator teams and Truth & Reconciliation Forums that led to their success.