Understanding the Impact of COVID-19

on Young Adults with IDD-MH and their Families

An Analytical Framework and Database to Identify Service Experiences and Outcomes Across Diverse Populations in Real Time

Many public health crises have a disparate impact on marginalized populations including subgroups at the intersection of race, ethnicity, and disability. It is unknown how the COVID-19 pandemic will affect young adults with intellectual and developmental disabilities who have mental health service needs and experiences (IDD-MH) and their families across the U.S. Most national databases either: (1) exclude this population, (2) collect such data but do not disaggregate by age and disability status, or (3) do not gather the granular data required to identify potential disparities across sub-groups by race, ethnicity, languages spoken, limited English proficiency, and low socioeconomic status.

This PCORI-funded project leverages the existing infrastructures of the Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in Comparative Effectiveness Research Project. Center for START Services (CSS) at the University of New Hampshire, Institute on Disability is collecting real-time data to document the incidence and effect of COVID-19 and mental health service use during this public health crisis. START programs provide mental health service supports in 25 regions and 13 states, including the COVID-19 initial hotspots of NYC, Seattle, and Northern CA. CSS operates the START Information Reporting System (SIRS), a comprehensive database with 8,000 START enrolled individuals. CSS distributed the “COVID-19 Family Survey” on 3/15/20 for START programs to collect granular quantitative and qualitative data on the effect of the crisis and to enhance START’s response. This project will provide a framework to analyze mental health service use and outcomes before and after the on-set of COVID 19. This is a unique and valuable source of information that will inform interventions and supports for this vulnerable and underserved population. The project will draw upon analytical frameworks developed by Georgetown University National Center for Cultural Competence (NCCC) that examine intersectionality and the convergence of cultural contexts. Applying similar frameworks to the SIRS dataset can identify crucial needs for future comparative effectiveness research (CER) and equip mental health systems with the information to facilitate more equitable outcomes in future public health crises.

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