Research on the health and health care of disabled people has frequently been limited by insufficient measures for the identification of disability within US surveys and health records. This is especially the case among people with intellectual and/or developmental disability (IDD), which are conditions that are typically present at birth or onset early in life and involve lifelong physical, developmental, learning, language, and/or behavioral impairments.1,2 Pre-pandemic, the US public health system failed to engage in adequate health surveillance for people with IDD.3,4 This disability data equity failure5—the failure to identify and sometimes even include disabled people in data collection—continued and was pointedly underscored during the COVID-19 pandemic.

As a result of this dearth of nationally representative data, researchers investigating the severity of COVID-19 outcomes among people with IDD during the early part of the pandemic were forced to rely on data from private electronic medical records platforms,6 IDD provider agencies,7 private insurance companies,8 and the handful of states who shared data on people receiving services.9 Though not the primary topic of this commentary, the dearth of data was equally if not more pronounced for other disabled people.10 Results from these early studies about people with IDD were startling, consistently reporting higher COVID-19 case rates and case-fatality rates among people with IDD than the general population.

Several recent commentaries advocate for improving disability data equity—data equity broadly defined as the collection and reporting of data without bias or exclusion—as part of health equity,5,11,12 all in some way emphasizing that “who counts depends on who is counted.”12 The pandemic brought to light the inability to identify disability in general health surveillance, and specifically for people with IDD, due to limitations and inaccessibility of existing data and information. Individuals with IDD are identified through state and federal programs related to services and/or supports, typically receive a high level of medical care, and yet clear information related both to health and disability are not routinely collected. Since people with IDD die at younger ages, experience high rates of death from potentially preventable diseases, are not well understood by many providers working in the health care system, and have well-documented health care access disparities,13 an effort to provide health and community living surveillance is in order.

This commentary will provide a historic overview of COVID-19 data and outcomes for people with IDD from federal, state, and administrative sources. Limitations specific to data access related to COVID-19 outcomes for people with IDD will be identified and guidance provided on how existing data can be used to examine future pandemic outcomes. In closing, recommendations to improve health surveillance of people with IDD in COVID-19 and other public health emergencies will be offered.