April 2, 2020
In this episode we talked to the Intellectual and Developmental Disabilities Research Partnership (IDD-MH). This group is made up of researchers, including people with lived experience of IDD and/or mental health concerns. Members of this group involved in this interview include Destiny Watkins, Micah Peace, Janet Shouse, Jessica Kramer, and Ravita Maharaj; brief bios of each person are included below. The purpose of this group is to learn about and make recommendations to improve access to mental health services for young adults with IDD-MH and we learn about how they became involved in this project and the impact it has had.
Full transcript: http://https://www.mhddcenter.org/wp-content/uploads/2020/05/IDD-MH-Research-Group-Interview-Transcript.docxstaging2.mhddcenter.org/wp-content/uploads/2020/03/Group-Interview-Transcript.docx
Article by the IDD-MH Research Partnership:
MHDD National Training Center: www.mhddcenter.org
Thank you for listening to the Mental Health Crossroads Podcast - where we explore the intersection of mental health and developmental disabilities. This podcast is produced by Dr. Alex Schiwal and is hosted by Dr. Jeff Sheen. This podcast is a product of the Mental Health and Developmental Disabilities National Training Center, which is a grant from the Administration for Community Living. Remember to like, subscribe, listen, and share wherever you get your podcasts. Follow us on social media @mhddcenter.
*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"
I have many lived experience of Physical/Development/Mental Health challenges. I am a DoTerra Wellness Advocate. I played a central role as an advisory board member of the Intellectual/Developmental Disability and Mental Health (IDD- MH) Research Partnership (PCORI Tier A P2P award: #7675658-A), I helped design the techniques we used to better understand the needs and experiences of young adults with IDD and co-occurring mental health conditions. I have done several national presentations and webinars to share what we learned. I was also an advocate for our group at a national expert panel held by the Substance Abuse and Mental Health Services Administration (SAMHSA). I was also part of the Patient-Centered Outcomes Research Institute (PCORI) national conference and annual reauthorization. I have made multiple presentations about mental health advocacy and natural approaches including for the Association of University Centers on Disabilities (AUCD) and the START National Training Institute and I was also on a few other advisory boards for peer mentoring intervention also with Boston University. I am a primary member as a co-investigator for “Reconciling the Past & Changing the Future: Engaging young adults with IDD-MH and researchers in CER/comparative effectiveness research”.I also am involved in other projects around the country since my past project are connected and involved in project like The Arc Of United States and Self Advocates Becoming Empowered (SABE) I also am a self-advocate in my local city hall engineering and planning/development with helping improving ADA accessibility and also when I travel for conferences and expert panels presentations.I also bring awareness of wheelchair accessibility and how to be more aware of people with many disabilities not just visual disabilities.
Micah Peace is an Autistic, multiply-disabled educator and community organizer from Louisville, KY. Grounded in an Intersectional, interdisciplinary approach as well as their own personal experiences of Disability, Micah strives to foster collaboration between Disability service providers and the Disability Community to promote true access, inclusion, and empowerment through creativity, acceptance, and collaboration. They are a founding member of the Kentuckiana Autistic Spectrum Alliance (KASA), an affiliate group of the Autistic Self-Advocacy Network serving the Louisville Metro Area, including Southern Indiana.
Janet Shouse works at the Vanderbilt Kennedy Center in Nashville, TN, as the program coordinator for the IDD Toolkit, www.iddtoolkit.org, an online resource for medical providers to better serve adults with intellectual and developmental disabilities. The IDD Toolkit Project also offers online training to help build capacity of clinicians to serve adults with IDD. Janet also serves with TennesseeWorks, a partnership of state agencies and disability organizations aiming to improve the employment landscape for people with disabilities. As part of that work, she writes and edits a blog called “Rise to Work,” www.tennesseeworks.org/blog/. Janet has also been a member of the advisory board of a national research project examining the needs of young adults with IDD and mental health conditions, the IDD-MH Research Partnership. She is the parent of three young adults, including a son with autism
Links and resources: Here is the link to the journal article that we published that includes the findings of our survey and storytelling session, as well as our recommendations for research, policy and practice!
Dr. Maharaj is a licensed, clinical social worker in the District of Columbia, with extensive experience in program development and implementation for adults with developmental disabilities, mental illness, and substance abuse. Her previous employment includes 12 years at the Lt. Joseph P. Kennedy Institute, Washington, DC, in the position Director/Division Director, and three years as a Research/Evaluation Coordinator at Community Connections, Inc., the largest mental health agency in Washington, DC.
Dr. Maharaj earned a doctorate in social work at the Catholic University of America, with a research interest in organizational factors that influence the implementation of evidence-based practices. She also holds an MSW from Howard University and a bachelor's from the University of Manitoba, Canada. Originally from Trinidad, she has worked for over 20 years in human services in Washington, DC.
Dr. Jessica Kramer, PhD, OTR/L is an Associate Professor in the Department of Occupational Therapy, College of Public Health and Health Professions, University of Florida.
Dr. Kramer’s research draws upon theoretical concepts and methodologies from occupational therapy, disability studies, education and rehabilitation to: 1) Partner with youth with intellectual and developmental disabilities (I/DD) in the development and evaluation of rehabilitation products; 2) Develop community-based interventions that equip youth with I/DD and their families with the skills to identify and resolve environmental barriers to participation; and 3) Design high quality patient reported outcome measures (PROMs) using contemporary measurement approaches.
Dr. Kramer uses quantitative, qualitative, and participatory approaches to design projects that harness the optimal method needed to answer complex research questions and meet the needs of multiple stakeholders, including youth and young adults with disabilities, their families, and rehabilitation professionals.