The COVID-19 pandemic has shown the tight link between data and equity. Data are critical to identifying disparities, promoting social mobility, and advancing health for our communities. But gaps in data can have the opposite effect. Without data, opportunities to address inequities and social justice are erased.
Although more than 27 percent of US adults have a disability, there remain only limited COVID-19 data for this community. The available data have come from people with disabilities living in congregate care settings, nursing homes, or are limited to people with intellectual and developmental disabilities.
While these data represent essential members of the disability community and have provided critical insight, there are important lessons to be learned from the limitations of this information. The Household Pulse Survey, a biweekly survey assessing the impact of the pandemic on US households, did not include standard questions about disability until April 2021, during the second year of the pandemic. Gaps in disability data within electronic health records have prevented tracking of COVID-19 testing, vaccination, and mortality among people with disabilities. These disability data gaps have removed opportunities for evidence-based policies and limited the reach of the pandemic response for people with disabilities.