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National Research Consortium on
Mental Health in IDD
at the National Center for START Services

 

2021 National Research Consortium Annual Meeting

The 2021 National Research Consortium in IDD-MH third Annual Conference occurred on October 14, 2021. The consortium is a first-of-its-kind initiative that seeks to improve the mental health and wellbeing of individuals with IDD, their families and communities. The National Research Consortium on MHIDD is comprised of people with lived experiences (including self-advocates and family members), caregivers, trainees, researchers, policy experts, and clinicians from over 30 organizations across the US including several UCEDDs, medical schools, state health departments, and service providers.

The conference was attended by over 50 research partners across the US who gathered to set priorities for next year. Our keynote presentation, the Transforming Research Forum, provided valuable lessons learned to consortium members through an almost two-year collaborative project to build capacity for research engagement with individuals with the lived experience of IDD-MH, their families, and professionals. The presentation, which is a part of a PCORI-funded project entitled Reconciling the Past and Changing the Future: Engaging Young Adults with IDD-MH and Researchers in Comparative Effectiveness Research, built the capacity of NRC affiliated researchers and partners to engage in research projects that partner stakeholders to reduce research harms and generate research relevant and important to individuals with IDD-MH and their families. In addition to the keynote presentation, all NRC Innovation Award recipients presented an update on their respective projects.


2020 National Research Consortium Annual Meeting

The second annual meeting of the National Research Consortium on Mental Health in Intellectual and Developmental Disabilities was held virtually on October 21st and was attended by board members and research partners from across the country and internationally. Tawara Goode, MA, presented the keynote titled, “Race, Ethnicity, Class and Culture in IDD/MH Research: What is getting in our way?” Ms. Goode is the Director of the National Center for Cultural Competence at Georgetown University and the Director of Georgetown University Center for Child and Human Development/UCEDD. 

Her presentation highlighted gaps in culturally competent research in IDD/MH and closed with four profound statements:

  • There is a need for standardized methods to collect racial, ethnic, linguistic, and cultural data for persons with IDD/MH and their families.
  • There is a need for research that documents racial, ethnic, and cultural variations in response to treatment and interventions.
  • There is a need for studies that validate the efficacy of culturally and linguistically competent, community engaged, comparative effectiveness research.
  • When discussing evidence-based practice, we must all ask the question, “Evidence-based for whom?”

These statements and other recommendations gathered during group discussions will set the stage for the National Research Consortium’s 2021 planning.
 
The meeting also included updates from the 2020 National Research Consortium Innovation Funding Award recipients. They each presented an overview of their research and initial findings/outcomes. Recorded presentations can be found by clicking on the project titles below:

Two other projects that are directly relevant to the National Research Consortium were also presented:


2019 National Research Consortium Annual Meeting

On October 10th, 2019 the Center for START Services held its inaugural meeting for the National Research Consortium on Mental Health in Intellectual and Developmental Disabilities (MHIDD) at the Kennedy Krieger Institute in Baltimore, Maryland. The mission of the Consortium is to advance research in best practice and policy to promote well-being in people with MHIDD.

The Director of the Consortium is Joan B. Beasley, Ph.D., Research Associate Professor at the University of New Hampshire, and Director of the Center for START Services at the UNH Institute on Disability/UCED. The Consortium Chair is Luke Kalb, PhD, Assistant Professor at the Kennedy Krieger Institute and John’s Hopkins University, and the Director of Consortium Operations is Andrea Caoili, LCSW, Director of Research and Quality Assurance at the Center for START Services at the UNH Institute on Disability/UCED.

 

National Research Consortium on Mental Health in intellectual and developmental disabilities

National Research Consortium on Mental Health in intellectual and developmental disabilities

 

The National Research Consortium on MHIDD is comprised of people with lived experiences (including self-advocates and family members), caregivers, trainees, researchers, policy experts, and clinicians from over 30 organizations across the US including several UCEDDs, medical schools, state health departments, and service providers.

The day began with keynote speaker, Dr. Yona Lunsky, Director of the Azrieli Adult Neurodevelopmental Centre and Professor in the Department of Psychiatry at the University of Toronto. Dr. Lunsky gave an inspiring talk about how to engage in evidenced-based programs (EBPs) in MHIDD with examples from around the globe, with respondent Dr. Angela Hassiotis, professor in the Division of Psychiatry at University College London, who provided a brief overview of work taking place in the UK. Each of the sponsoring members of the Consortium discussed their vision for our work together. The remainder of the day was spent in roundtable breakout sessions, each focused on one of six top priority areas identified by Consortium members: advancing EBPs, services and linkages, trauma informed care, crisis interventions, advocacy, and integrated care.

The day concluded with strategic planning incorporating specific projects that draw on the Consortium’s considerable expertise to address the identified areas of focus. Next steps are underway and include reviews for potential projects discussed during the inaugural meeting. The Consortium will pursue at least 2 research projects during the upcoming calendar year.