As of July 23, 2021, the United States had approximately 34 million confirmed cases and over 610,000 deaths related to COVID-19. Individuals with intellectual and developmental disabilities (ID/DD) are at greater risk for infection and adverse health outcomes due to COVID-19 than individuals without ID/DD for a variety of reasons, including high prevalence of underlying medical conditions, difficulties accessing information, understanding or practicing preventative measures, communicating symptoms of illness, and residing in a congregate care setting.
Despite high risk of COVID-19 infection and mortality among individuals with ID/DD, there is no standardized national framework to facilitate the collection and sharing of COVID-19-related data for this population. An increased understanding of state collection and reporting of COVID-19 data; COVID-19 infection prevention strategies; and COVID-19 vaccine prioritization for the ID/DD population at the state level may help inform future policies, programs, and practices that aim to reduce the risk of infection and mitigate adverse effects of COVID-19 and other infectious diseases for the population.
The report was prepared under contract between HHS’s ASPE/BHDAP and RTI International. For additional information about this subject, you can visit the BHDAP home page at https://aspe.hhs.gov/about/offices/bhdap or contact the ASPE Project Officers, at HHS/ASPE/BHDAP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201; Emma.Plourde@hhs.gov, William.Haltermann@hhs.gov, Pamela.Doty@hhs.gov.
The opinions and views expressed in this report are those of the authors. They do not reflect the views of the Department of Health and Human Services, the contractor or any other funding organization. This report was completed and submitted on May 28, 2021.
COVID-19 and People with Intellectual and Developmental Disabilities Final Report
This report highlights the great variation across states in efforts to detect and prevent COVID-19 infection, and to collect COVID-19 vaccination data. During the COVID-19 public health emergency, states established data collection strategies with haste and urgency. The data collection strategies were influenced by existing state-level relationships and data infrastructure, and resulted in a variety of strategies that may inform future approaches to data collection and information sharing. The findings from this report also highlight the state-level collaboration necessary for a successful pandemic response for individuals with individuals with intellectual and developmental disabilities.
COVID-19 Data on Individuals with Intellectual and Developmental Disabilities Issue Brief
This Brief describes key findings found in the Final Report.
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