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
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:
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.
Evaluated the forums to see what worked and what we could do better next time.
Meet Our Leadership Team
Leadership Team (in alphabetical order)
- Joan B. Beasley, PhD, Director, National Center for START Services, Institute on Disability, University of New Hampshire
- Tawara D. Goode, MA, Director, National Center for Cultural Competence at Georgetown University
- Elizabeth Grosso, MSW, Director of Training and Professional Development, National Center for START Services, Institute on Disability, University of New Hampshire
- Fiorella Guerrero, Fulbright Scholar & PhD Student, Youth and Young Adult Empowerment, Leadership, and Learning Lab, Department of Occupational Therapy, University of Florida
- Jessica Kramer, PhD, Director, Youth and Young Adult Empowerment, Leadership, and Learning Lab, Department of Occupational Therapy, University of Florida
- Micah Peace, Self-Advocate, Educator, and Community Organizer
- Destiny Watkins, Self-Advocate/Advocate, DoTerra Wellness Advocate
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:
- Max Barrows, Outreach Director, Green Mountain Self Advocates, Vermont
- Juliana Heureña, Self- Advocates Becoming Empowered Administration, Ohio
- Ravita Maharaj, PhD, LCSW, Director, Assessment Programs, American Association on Intellectual and Developmental Disabilities, Maryland
- Cordelia Robinson Rosenberg, PhD, RN, Professor Emerita, JFK Partners, University of Colorado School of Medicine, Colorado
- Janet Shouse, Parent of a young adult on the autism spectrum and Program Coordinator for the IDD Toolkit project, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, Tennessee
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