The National Center for START Services established the National Research Consortium on Mental Health in Intellectual and Developmental Disabilities (MHIDD) in 2019. The goals of the collaboration are:
- to improve the mental health and well-being of individuals with IDD, their families, and communities;
- to foster collaboration among research institutions, practitioners, UCEDDS, providers, and people with lived experiences;
- to generate co-sponsorships and collaborative partnerships to fund innovative, startup projects; and
- to promote engagement with new researchers and trainees.
Overview
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 United States, including several UCEDDs, medical schools, state health departments, and service providers.
Partnering with stakeholders in the prioritization, development, and dissemination of best-practice research will allow us to improve the quality of care delivered to those with IDD across the country. The Consortium aims to promote equity and inclusion by building a national community of practice and international partnerships. This work creates a vehicle for information dissemination, training resources, and peer-reviewed publications on factors that contribute to mental wellness for persons with IDD-MH. The National Center for START Services is uniquely positioned to advance this agenda by drawing on long-standing internal expertise as well as external research partnerships with universities and strategic partners across the country. Beyond scholars, the National Center for START Services is committed to partnering with self-advocates and families to help guide the research agenda and interpret the findings.
Research Priorities
The research agenda for the Consortium was set by the NRC Board. The current priority areas of research are:
- positive psychology and strengths-based practices;
- evidence-based interventions to promote well-being;
- participatory approaches to research;
- cultural and linguistic competence; and
- interdisciplinary and patient partnerships.
Annual Reports
Consortium Members
Consortium Leadership
- Joan B. Beasley, PhD, Consortium Director - Research Professor, UNH Institute on Disability - NH
- Luke Kalb, PhD, Consortium Chair - Assistant Professor, Kennedy Krieger Institute - MD
- Andrea Caoili, LCSW, Director of Research & Quality Assurance, National Center for START Services, UNH Institute on Disability - NH
- Luke Reynard, MBA, Contracts & Finance, National Center for START Services, UNH Institute on Disability - NH
Board
- Roberto Blanco, MD, Assistant Professor, University of North Carolina Chapel Hill Medical School - Chapel Hill, NC
- Katie Curran, MAPP, Chief Wellbeing Officer, Proof Positive - NY
- John Dickerson, CEO, Quillo - Indianapolis, IN
- Tawara Goode, MA, Director, Georgetown University Center for Child and Human Development - Washington, DC
- Angela Ott, Policy Fellow, Hogg Foundation at the University of Texas at Austin - Austin, TX
- Cheryl Karran, LMSW, Director, YAI START Programs, YAI - New York, NY and San Jose, CA
- Susan Klick, Family Member - Hartford, CT
- Jennifer McLaren, MD - Associate Professor of Psychiatry, Dartmouth Geisel School of Medicine; Chief Medical Advisor, National Center for START Services - NH
- Patricia Nobbie, PhD, Director of Disability Policy Engagement, Elevance Health - Washington, DC
- Kelly Nye-Lengerman, PhD, MSW - Director, University of New Hampshire Institute on Disability – NH
- Micah Peace-Urquilla, Self-Advocate, Educator, and Community Organizer - KY
- Dan Tomasulo, PhD, TEP, MFA, MAPP, Academic Director, Spirituality Mind Body Institute (SMB) MA Degree Program, Core Faculty, Department of Clinical Psychology at Teachers College, Columbia University - NY
- Matthew Wappet, PhD, Executive Director & Research Associate Professor, Institute for Disability Research, Policy & Practice, Utah State University - Logan, UT
- Patricia Wright, PhD, MPH, Executive Director, Proof Positive - NY
Advisors
- Yona Lunsky, PhD, Director, Azrieli Adult Neurodevelopmental Centre, Senior Scientist, Adult Neurodevelopment and Geriatric Psychiatry Division, and Director, Health Care Access Research and Developmental Disabilities (H-CARDD) Program, CAMH, Canada
- Angela Hassiotis, MRCPsych, MA, PhD, Professor of Psychiatry of Intellectual Disability, University College London, UK
Research Partners
- Chithra Adams, PhD - Director of Evaluation, University of Kentucky Human Development Institute - KY
- Jenny Alexander, MA - Director of National Initiatives, The Arc - DC
- Ty Aller, PhD, LMFT - Research Assistant Professor, Institute for Disability Research, Policy & Practice, Utah State University - Logan, UT
- Dan Baker, PhD - Internal Reviewer and Positive Support Lead with the Jensen/Olmstead Quality Assurance and Compliance Office, Department of Human Services - MN
- Jim Bedford, MD - Assistant Professor, University of North Carolina Chapel Hill Medical School - NC
- Alixe Bonardi, MPA,MS - Director of IDD Services Research, Human Services Research Institute - MA
- Ravi Dahiya, MPA - Chief Program Officer, YAI - NY
- Kristen Dahl, LPCC, CHES - Senior Program Manager, MHDD National Training Center, University of Kentucky - KY
- Nova Evans, MA - Senior Policy Analyst, Office of Mental Health Coordinator, Texas, HHSC - TX
- Brian Freedman, PhD – Director, Swank Autism Center, Nemours Children’s Health - DE
- Calliope Holingue, PhD - Faculty, Kennedy Krieger Institute - MD
- Diane Jacobstein, PhD - Associate Professor, Georgetown University Center for Child and Human Development - MD
- Jessica Kramer, PhD, OTR/L - Associate Professor, University of Florida Department of Occupational Therapy - FL
- Jessica Monahan, PhD, MSW - Spectrum Scholars Research Manager, Center for Disability Studies, University of Delaware – DE
- Marian E. Ofonedu, PhD, LCSW - Director of Training, Maryland Center for Developmental Disabilities - MD
- Brittany Powers, MPH - Early Childhood ASD Projects Coordinator, Center for Disability Studies, University of Delaware – DE
- Katy Schmid, MS - Director of Education and Technology, The Arc - DC
- Ariel Schwartz, PhD, OTR/L – Director, UNH-4U, Research Assistant Professor, University of New Hampshire Institute on Disability
- Kathleen Shepperd Jones, PhD - Director, University of Kentucky Human Development Institute - KY
- Marc Tasse, PhD - Director, The Ohio State University Nisonger Center - OH
Donors & Partners
Member since 2020
www.elevancehealth.com
Member since 2019
gucchd.georgetown.edu
Member since 2020
idrpp.usu.edu/
Member since 2019
www.med.unc.edu/
Member since 2019
yai.org
Funded Projects
Examining the Mental Health of Autistic College Adults
PI: Brian Freedman, PhD, Senior Associate Director, University of Delaware Center for Disability Studies, DE
Aims: 1) Examine the internal construct validity and reliability of a commonly used mental health instrument in college counseling centers, the Counseling Center Assessment of Psychological Symptoms-62 item (CCAPS-62), for students on the autism spectrum; 2) understand the specific mental health needs of college students on the autism spectrum when compared to college students with other disabilities and no disabilities; 3) explore predictors of mental health needs of autistic college students.
Long-term Goal: to increase educational supports for those with ASD in collegiate settings
Total Awarded: $9,360. Research institution’s match: $15,000
Examining Cognitive Accessibility and Clinical Applications of the VIA Character Strengths Survey
PI: Ariel Schwartz, PhD, OTR/L, MGH Institute of Health Professions
Aims: 1) Examine the comprehensibility of the VIA Character Strengths Survey, when used by adults with IDD and 2) Describe how knowledge of character strengths is used in clinical practice with adults with IDD.
Long-term Goal: This work is designed as a first step towards deploying the VIA Survey in an electronic application, which be filled out by persons with IDD, and design of strengths-based intervention for those with IDD.
Total Awarded: $11,360. Research institution’s match: $15,000
Positive Mental Health and Autism Spectrum Disorders
PI: Luke Kalb, PhD, Kennedy Krieger Institute, Johns Hopkins University, MD
Aims: Examine the: 1) profiles of well-being among parents raising a child with Autism Spectrum Disorders (ASD); 2) psychometric characteristics of the PERMA-Profiler, a measure of well- being, among adults with ASD; 3) profiles of well-being among adults with ASD; and 4) correlates of well-being among adults with ASD and caregivers of children with ASD.
Long-term Goal: To advance research and measurement of well-being on among those with ASD and their families. This is a major gap in the literature. Previous research is highly focused on deficits.
Total Awarded: $7,000. Research institution’s match: $15,000
Using Mixed-Reality Simulation to Train School-based Mental Health Professionals how to Support Students with Developmental Disabilities with Co-occurring Mental Health Concerns
PI: Emily Graybill, PhD., Director, Center for Leadership in Disability, Georgia State University
Goals: Through this project, we will train 20 school psychology students and 20 school counseling students on how to build the competence to support the mental health concerns of students with developmental disabilities (MH/DD) in schools. We will measure their attitude, knowledge, and skills related to receiving training on supporting students with MH/DD.
Aims: 1) Increase awareness of mental health concerns in students with developmental disabilities; 2) Increase knowledge of signs and symptoms of mental health concerns of students with disabilities; and 3) Increase skills in supporting students with developmental disabilities who are showing signs of mental health concerns.
Total Awarded: $15,000
Psychological flexibility in adults with ASD: Psychological distress in the context of COVID-19
PI: Ty B. Aller, PhD, LMFT, Utah State University Center for Persons with Disabilities/UCEDD
Aims: 1) Explore how psychological flexibility influences psychological distress in adults with ASD in the context of COVID-19 with a pilot epidemiological study; 2) Establish the dimensionality, internal consistency, test-retest reliability, and the concurrent and convergent validity of the Acceptance and Action Questionnaire II (AAQ-II) in adults with ASD; 3) Establish the dimensionality, internal consistency, test-retest reliability, and the concurrent and convergent validity of the Brief Experiential Avoidance Questionnaire (BEAQ) in adults with ASD; 4) Provide research opportunities for undergraduate and/or graduate research assistants and UCEDD trainees to learn more about the intersection of mental health and intellectual/developmental disabilities.
Beat It: US Based Pilot Evaluation of the Behavioral Activation Intervention, Beat It, for Young Adults with ID
PIs: Dave Buck, PhD, Chattanooga Autism Center, TN; Roberto Blanco, MD, UNC School of Medicine, NC
Aims: 1) Ensure suitability of the Beat It intervention and accompanying manualized materials in the US; 2) Ensure that the research group can administer Beat It with fidelity for up to 20 individuals with IDD identified as having low mood or meet clinical criteria for depression; and 3) Evaluate the experiences and outcomes for patients and therapists.
Long-term Goal: To bring an evidenced-based depression intervention, from the UK, to the US. This pilot work will lay the ground needed for a large, randomized trial in the future
ON HOLD
Submit a Project Proposal
The National Research Consortium on Mental Health in Intellectual and Developmental Disabilities (MH-IDD) is seeking innovation research grant applicants with a focus on improving the health and well-being of individuals with MH-IDD service needs.
Download Research Project Proposal Application
The application must clearly articulate how the project meets the National Research Consortium's mission. The National Research Consortium prioritizes four areas of grant funding: 1) expanding the use of positive psychological methods; 2) developing and scaling evidenced-based interventions; 3) expanding capacity and reducing service disparities; and 4) revising and/or developing accessible measures.
The National Research Consortium 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. Innovation grants are offered by the consortium to accelerate partnership with researchers in the development and implementation of evidenced-based mental health diagnostic, treatment and support practices for those with IDD.
The National Research Consortium will fund grants up to $35,000. Applications that request less funds are welcome. Applications require an institutional match, often represented as coverage of effort/salary. Matches can exceed the amount requested, but cannot be less than the total award. Funds can only be used for direct costs; indirect costs should not be included in the budget. Projects with an existing IRB and/or standing grant, in which this project can serve as a supplement, will be prioritized since the goal is to have actionable results within 1 year. Thus, secondary data analyses are of great interest. Applicants must have a terminal doctoral degree (PhD, Ed, MD, etc.) and appointment at a medical or university-based setting. Doctoral students and post-doctoral fellows are encouraged to apply, as long as a faculty advisor serves as a Co-PI. Funds will be released following IRB approval.
Notwithstanding Reference and Appendices, the application should be 4 pages maximum. Font should not be smaller than 11-point and the margins must be at least ½”. Additional information may be requested for consideration by the National Research Consortium operations team and board. Click here to download the application. If funded, an initial, interim (6 month) meeting and final report are expected. Investigators are expected to present their study and findings at the National Research Consortium’s annual conference. If you have any questions, contact Dr. Luther Kalb (kalb@kennedykrieger.org), Chair of the National Research Consortium, Ms. Andrea Caoili (andrea.caoili@unh.edu), Director of National Research Consortium Operations, and Dr. Joan B. Beasley, PI National Research Consortium on MH-IDD(joan.beasley@unh.edu ).
Applications will be accepted on a rolling basis.
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