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
How we developed the Truth & Reconciliation Forums
The Georgetown University National Center for Cultural Competence created “Truth & Reconciliation Forums” for racial and ethnic groups most impacted by health disparities.
First, our leadership team reviewed the forums to make them relevant for young adults with IDD-MH and their families.
We picked the information that was important to include and thought of new information to add. We also created new materials and activities that accommodated the unique learning needs and interests of young adults with IDD-MH.
Second, our project Advisory Board and Co-Facilitator Teams reviewed the materials, provided feedback, and came up with new ideas for interactive learning and discussion activities.
Co-facilitator teams were made up of young adults with IDD-MH and certified START coordinators who worked as partners to run the forums. We had four co-facilitator teams from California, New York, North Carolina, and Washington.
Our partnership with persons with IDD-MH and professionals helped ensure that the forums were:
- Accessible
- Appropriate for young adults and family members with a range of disabilities, and educational and literacy levels
- A good fit for young adults and family members who may or may not be familiar with research
- Applicable to the everyday lives of people with IDD-MH
- Focused on individual strengths, abilities, and opportunities
Throughout this process, from August 2020 - August 2021, the local co-facilitator teams met once a month or more to review materials and practice running the forums.
Truth & Reconciliation Forums
Four virtual Truth & Reconciliation Forums were held in July and August 2021. They were attended by 9 young adults ages 18-40 with IDD-MH and 6 family members.
The purpose of the forums was to support persons with IDD-MH and their families to:
- Learn about harms in research and their impact on people, practice, and society
- Begin to reconcile past harms with researchers through apology and dialogue
- Learn about their rights as research participants and the different roles they can have in the research process
- Think about the benefits of research and the type of research that is important to them
- Learn from and with other young adults with IDD-MH about how to get involved in research
The Truth & Reconciliation Forums included two, 2-hour virtual sessions. Information was shared in multiple ways to accommodate different learning preferences and needs. The leadership team recorded videos to introduce specific content. After watching the videos, local co-facilitator teams led young adults and family members in discussion and other learning activities.
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Truth & Reconciliation Session 1 included: |
Truth & Reconciliation Session 2 included: |
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We developed a packet of materials to support the co-facilitator teams including an agenda, slides, videos, and a facilitator activity guide. Materials could be customizable for the co-facilitator team’s work style, and the support needs of the intended audience.
Transforming Research Forums
The Transforming Research Forum convened virtually in October 2021 during the National Research Consortium on Mental Health in IDD. A total of 46 researchers, providers, representatives from advocacy organizations, and members of the project Advisory Board participated.
The purpose of the Forum was to encourage IDD-MH researchers and other stakeholders to:
- Critically examine the beliefs and practices that many within the research community have about IDD-MH that may negatively influence studies
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Create strategies researchers can use to engage people with IDD-MH in meaningful research collaborations
To develop the Transforming Research Forums, the leadership team picked content from the Truth & Reconciliation Forums that was important for researchers. We also developed new content. We thought about:
- Harms in research
- Responding to race, ethnicity, and multiple cultural identities of research participants
- Strategies for collaborating with research partners with IDD-MH
The final agenda consisted of:
- The Introduction
- The Lived Experience of Persons with IDD-MH: Implications for Research
- Nothing About Us Without Us
- Reconciliation of Past and Current Harms
- Truth & Reconciliation Forums Evaluation
- Lessons Learned & Next Steps
The Transforming Research Forum included pre-recorded videos, live Zoom polls, chat activities, Q&A with each member of the leadership team, and small group reflection and dialogue.