National Research Consortium on MHIDD

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:

  1. to improve the mental health and well-being of individuals with IDD along with their families and communities;
  2. to foster collaboration among research institutions, practitioners, UCEDDS, providers, and people with lived experiences;
  3. to generate co-sponsorships and collaborative partnerships to fund innovative, startup projects; and
  4. to promote engagement with new researchers and trainees.

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Accepting Rolling Applications


The NRC 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

SUBMIT APPLICATION ONLINE

The application must clearly articulate how the project meets the NRCs mission. The NRC prioritizes four areas of grant funding: 1) the application of positive psychological methods; 2) the development of evidenced-based inclusive interventions; 3) building capacity to reduce service disparities; and 4) implementation of accessible measures. More information about the NRC can found here. The NRC will prioritize applications that address racial, ethnic, and socioeconomic disparities as well as utilize inclusive research practices.

The NRC is comprised of people with lived experiences in IDD-MH (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 evidence-based mental health diagnostic, treatment, and support practices for those with IDD.

The NRC will fund up to $70,000 ($35,000 over two years) per grant. Applications that request less funds are welcome. Projects with an existing IRB and/or standing grant, in which this project can serve as a supplement, will be prioritized. Thus, secondary data analyses are of great interest. Applicants must have a terminal degree (PhD, Ed, MD, etc.). Doctoral students and post-doctoral fellows are encouraged to apply if a faculty advisor serves as a Co-PI. Funds will be released following IRB approval. 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.

The application should be 4 pages maximum in addition to references and appendices. 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 NRC operations team and board. The application can be found on the next page. If funded, an initial, interim (every 6 months) meeting and final report are expected. Investigators are expected to present their study and findings at the NRC’s annual conference. If you have any questions, contact Dr. Luther Kalb (kalb@kennedykrieger.org), Chair of the NRC,  Ms. Andrea Caoili (andrea.caoili@unh.edu), Director of Consortium Operations, or Dr. Joan B. Beasley, Director, National Research Consortium on MH-IDD (joan.beasley@unh.edu).

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 research partners 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:

  1. the application of positive psychological methods; 
  2. the development of evidenced-based inclusive interventions; 
  3. building capacity to reduce service disparities; and 
  4. implementation of accessible measures. 

The NRC emphasizes and prioritizes inclusive and strength-based research methodologies.

Annual Reports

Outcomes

 

Published:

Aller, T. B., Barrett, T. S., Levin, M. E., McClain, M. B. (2022). Measuring psychological flexibility in autistic adults: The validity and reliability of the AAQ-II, BEAQ, and VQ. Journal of Contextual Behavior Science, 26, 125-133. https://doi.org/10.1016/j.jcbs.2022.09.001 (Pre-Reg: https://osf.io/8g4ha)

Under Review: 

Kelley, H. K. & Aller, T. B. (2023). Transcendent spirituality and psychological flexibility amongst autistic adults [Manuscript submitted for publication]. Institute for Disability Research, Policy and Practice. Utah State University, Logan, UT. 

Aller, T. B., Kelley, H. H., Covington, B., Barrett, T. S., Levin, M. E., & McClain, M. B. (2023) An examination of the protective effect of psychological flexibility among autistic adults experiencing psychological distress [Manuscript submitted for publication]. Institute for Disability Research, Policy, and Practice. Utah State University, Logan, UT. (Pre-Reg:  https://osf.io/8tc4s

In Preparation: 

Aller, T. B., Kelley, H. H., Covington, B., & Juhasz, A.. (2023). Health Related Stress and Satisfaction with
Life Among Autistic Adults: Does the natural strength of psychological flexibility help?  [Manuscript in
Preparation]. Institute for Disability Research, Policy, and Practice. Utah State University,
Logan, UT. (Pre-Reg: in Prep) 

Luke P. Grosvenor, Cheryl L. Errichetti, Calliope Holingue, Joan B. Beasley, and Luther G. Kalb. (2023). Self-Report Measurement of Well-Being in Autistic Adults: Psychometric Properties of the PERMA Profiler. Autism in Adulthood. Ahead of print.
View Journal Webpage  
View Plain Language Overview

Consortium Members


Consortium Leadership

Board

Advisors

Research Partners

Donors & Partners


 

  

Georgetown University Center for Child and Human Development logo featuring light blue silhouettes of children moving together

Member since 2019
gucchd.georgetown.edu

Institute for Disability Research Policy and Practice logo featuring blue and yellow intertwined ribbons

Member since 2020
idrpp.usu.edu/

Hogg Foundation for Mental Health logo featuring multi-colored bars in a circle

Member since 2019
hogg.utexas.edu

Proof Positive Autism Wellbeing Alliance logo featuring a blue and orange dotted line graphic

Member since 2022
proofpositive.org

Quillo logo with red lettering on a white background

Member since 2019
myquillo.com

University of North Carolina School of Medicine logo featuring a graphic of a domed structure with columns

Member since 2019
www.med.unc.edu/

YAI logo featuring an orange triangle and the slogan "Seeing Beyond Disability"

Member since 2019
yai.org

Funded Projects


Current


Beat It: US Based Pilot Evaluation of the Behavioral Activation Intervention, Beat It, for Young Adults with ID
PIs: Andrea Caoili, MSW, Mariah Sommers, MSW, Brittany Powers, PhD, and Karen Weigle, PhD

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.

Total awarded: $17,000. Research institution’s match $30,000.

 
Past

 

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. Research institution match $15,000.

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.

Citations: 

Monahan, J., Freedman, B., Singh, V., & Kalb, L. (2022) Validating the Counseling Center Assessment of Psychological Symptoms for Autistic Adults: A Step Towards Better Understanding of Mental Health. INSAR; Austin, TX.  

Edmonson, C., Monahan, J., Freedman, B., Singh, V., & Kalb, L. (2022) Psychological Symptoms of College Autistic. Postsecondary Training Institute. University of Connecticut.

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.

Citation:

Schwartz, A.E., Caoili, A., Beasley, J.B., Kramer, J.M., & Kalb, L.G. (2022). Clinical applications of the VIA Inventory of Strengths with individuals with intellectual/developmental disabilities. Journal of Positive Psychology. Doi: 10.1080/17439760.2022.2036797 [epub ahead of print] https://doi.org/10.1080/17439760.2022.2036797

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.

Citation:

Grosvenor, L., Hood-Bey, C., Beasley, J., Holingue, C., Errichetti, C., McLaren, J., & Kalb, L. (2022) Psychometric properties of the PERMA Profiler in autistic adults. INSAR; Austin, TX.

Total Awarded: $7,000. Research institution’s match: $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.

Citation: 

Aller, T. B., Barrett, T. S., Levin, M. E., McClain, M. B. (2022). Measuring psychological flexibility in autistic adults: The validity and reliability of the AAQ-II, BEAQ, and VQ. Journal of Contextual Behavior Science, 26, 125-133. https://doi.org/10.1016/j.jcbs.2022.09.001 (Pre-Reg: https://osf.io/8g4ha)