National Research Consortium on MHIDD
In 2019, the 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 goal of this collaboration is to improve the mental health and wellbeing of individuals with IDD, their families and communities. Partnering with stakeholders in the prioritization, development and dissemination of best-practice research will uniquely allow us to improve the quality of care delivered to those with IDD across the country. 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.
This consortium is a first-of-its-kind initiative that seeks to accelerate the development and implementation of evidenced-based mental health diagnostic, treatment and support practices for those with IDD, in addition to our work on continuous evaluation and improvement of the START model. The 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 Center for START Services is committed to partnering with self-advocates and families to help guide the research agenda and interpret the findings.
Why do we need MHIDD research?
Individuals with IDD experience numerous health disparities, including higher rates of mental health symptoms and behavioral challenges, compared to their typically developing peers. 1,2 Unfortunately, these difficulties are often misdiagnosed, under-diagnosed, or undiagnosed.3 Even when detected, few evidenced-based treatments exist.4 This gap has translated into use of costly and ineffective care, resulting frequent psychiatric emergency department and hospital visits,5,6 poorer quality of life and earlier age of mortality for individuals with IDD.7,8 A critical goal of this consortium is to address the overall dearth of research regarding the mental health aspects of IDD, with a targeted effort to address the lack of collaboration between insurers, providers, service users, and families in this effort. While there are more studies from Europe and Canada the U.S. falls short in this area.
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.