National Research Consortium on
National Research Consortium on MHIDD
In 2019, the National Center for START Services at the University of New Hampshire Institute on Disability/UCED established the National Research Consortium on Mental Health in Intellectual and Developmental Disabilities (MHIDD). 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. 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 (see Appendix for details on the list of all NRC participants).
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.
The research agenda for the Consortium was set by the NRC Board. We currently have five priority areas of research: 1) positive psychology and strengths-based practices; 2) evidence-based interventions to promote well-being; 3) participatory approaches to research; 4) cultural and linguistic competence; and 5) interdisciplinary and patient partnerships.
1 Cooper, S. A., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British Journal of Psychiatry, 190(1), 27-35.
2 Deb, S., Thomas, M., & Bright, C. (2001). Mental disorder in adults with intellectual disability. 1: Prevalence of functional psychiatric illness among a community‐based population aged between 16 and 64 years. Journal of Intellectual Disability Research, 45(6), 495-505.
3 Peña-Salazar, C., Arrufat, F., Santos, J. M., Fontanet, A., González-Castro, G., Más, S., Roura-Poch, P. & Valdés-Stauber, J. (2018). Underdiagnosis of psychiatric disorders in people with intellectual disabilities: Differences between psychiatric disorders and challenging behaviour. Journal of Intellectual Disabilities, 1744629518798259.
4 Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: health and health care access for people with intellectual disabilities. Mental retardation and developmental disabilities research reviews, 12(1), 70-82.
5 Kalb, L. G., Beasley, J., Klein, A., Hinton, J., & Charlot, L. (2016). Psychiatric hospitalisation among individuals with intellectual disability referred to the START crisis intervention and prevention program. Journal of Intellectual Disability Research, 60(12), 1153-1164.
6 Kalb, L. G., Stuart, E. A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatric Emergency Care, 28(12), 1269-1276.
7 Lauer, E., & McCallion, P. (2015). Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. Journal of Applied Research in Intellectual Disabilities, 28(5), 394-405.
8 Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self‐determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850-865.