Available online 10 September 2023, 101539

Author links open overlay panel, Abstract

The Covid-19 pandemic drastically underscored the lack of proper health surveillance for people with intellectual and developmental disability (IDD) in the US. This data equity failure resulted in researchers having to rely on nontraditional data sources to develop an understanding of how this population was faring during the pandemic. To begin addressing this concern, in this commentary, we: 1) discuss the difficulties in accessing data during the pandemic specifically related to people with IDD; 2) provide guidance regarding how existing data can be used to examine Covid-19 outcomes for people with IDD; and 3) provide recommendations for improving data collection for people with IDD in light of lessons learned during the pandemic. In sum, the data currently available to examine Covid-19 as well as other health outcomes among people with IDD is severely limited, compromising the ability to both understand and address health disparities among this populatio

Section snippetsConflict of Interest Disclosures

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Funding/support

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Federal data

In response to early evidence of more severe Covid-19 outcomes among people with IDD, in October of 2020 the US Senate Committee on Health, Education, Labor and Pensions sent a letter to the Centers for Medicare and Medicaid Services (CMS), Department of Health and Human Services (HHS), “requesting CMS issue guidance for mandatory comprehensive data collection and reporting on congregate care settings to better understand and address the impact of Covid-19 on people with disabilities and older

Death certificates

Death certificate data – provided by the National Vital Statistics System (NVSS) – are crucial in understanding the mortality burden of a disease – the number and percentage of deaths from a specific disease. This data depends on health care clinicians using International Classification of Diseases, Tenth Revision (ICD-10) codes to accurately identify all health care encounters/procedures by diagnosis and/or symptoms for billing and claims processing. The importance of this data became

Recommendations

This commentary has focused on the paucity of useful and accurate data available to further understand the high case rates and case-fatality rates for people with IDD related to the pandemic. The critical missed opportunities through CMS, HPS, NHIS, and state data, and potential opportunities that existed during the pandemic and still exist with NVSS, and administrative data that researchers have used to attempt to piece together the puzzle of health outcomes for people with IDD have all been

Conclusion

The aim of this Commentary was to identify gaps and limitations in Covid-19 data, and potentially other pandemic or emergency situations, for people with IDD. Data are essential to monitor the health of all populations, including people with IDD. Without modifications to national, state, and local data collection, the IDD data equity failure that occurred prior to and during the pandemic will continue. If continued, the IDD data equity failure will limit the amount of meaningful data available

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