Anyone who has been to an emergency department can picture it: hurried footsteps, alarms and monitors, anxious faces filling the waiting room. When an emergency hits an entire community, like a hurricane, a heat wave, or a pandemic, that pressure multiplies. Real-time data can give public health staff the information they need to respond.
Enter syndromic surveillance, one of the most widely used tools in public health. Every day, emergency departments and urgent care centers across the country share data about visits with health departments and the Centers for Disease Control and Prevention (CDC), giving them a near real-time view of trends in visits in the community.
Until recently, that view had a blind spot: it couldn’t reliably show how people with disabilities access and experience care during emergencies. COVID-19 made that gap clear. People with disabilities faced much higher risks of severe illness and death, and public health lacked the data to see it clearly and act quickly.
“Public health responders work hard, are dedicated to what they do, and always lean in. The issue is that the response and the public health services we provide could be better if we’re more informed as it relates to people with disabilities. It’s a responsibility of everybody in public health to understand how to better use their data to better serve these populations.”
A Coordinated Approach
Fixing that blind spot took collaboration and time. Starting in 2021, the Association of State and Territorial Health Officials (ASTHO) and CDC coordinated with the Council of State and Territorial Epidemiologists (CSTE)-led National Syndromic Surveillance Program (NSSP) Community of Practice (CoP), which includes more than 1,600 public health professionals to tackle this problem. The work created a scientific panel of disability health subject matter experts, healthcare providers, public health professionals and people with lived experience from across jurisdictions, partner organizations, academia, and federal workgroups to develop standardized definitions for identifying emergency department visits by people with disabilities.
The result is a set of eight definitions: seven covering specific domains of disability (hearing, vision, mobility, intellectual and developmental, cognition, learning, and self-care and independent living) and one overarching definition that groups them together. The definitions were tested by state and local members of the CoP and added to ESSENCE, the national syndromic surveillance platform, in February 2025. At the national level, the overall definition correctly identified visits by people with disabilities nearly 93% of the time. These definitions help health departments examine disability as a demographic group to better understand the impact of emergencies on people with disabilities.
From Definitions to Action
A definition only matters if it is used. That’s where CSTE comes in. For the past two years, CSTE has funded several state and local health departments to put the definitions into practice and asked each to partner with a local disability-serving organization to test the definitions with its own data and community.
The early results show what becomes possible. In one rural community, the data revealed that people with disabilities were visiting the emergency department for mental health concerns at higher rates. The health department’s community partner used that insight to tailor its services to meet the needs of that community.
Health departments now have baseline information so they can spot when something changes in a public health emergency. During a hurricane, for example, they can see whether visits spike because people who rely on oxygen at home have lost power. That information helps responders decide where to send resources and support.
The partnerships turned out to be just as valuable as the data.
“Partnerships are fundamental to making this work successful. It’s been really inspiring to see these partnerships grow and continue past the funded period. That’s been the most unexpected bright spot in this work.”
When people with disabilities help decide how they’re counted, health departments are better equipped to see their needs and respond when it matters most.
“In emergencies, timelines are short. Decision pressures are immense. You must move quickly. Every opportunity to improve the way we collect and use that information to better serve people gives me hope. That’s a continuous opportunity for all of us.”
The Council of State and Territorial Epidemiologists (CSTE) is a national non-profit organization that represents public health epidemiologists and is a Core Member of the Joint Public Health Informatics Task Force (JPHIT). CSTE works alongside JPHIT members to build cross-sector relationships, apply technical expertise, and leverage their policy reach to advance work aimed at improving communities' wellbeing. JPHIT member organizations are committed to a vision where every public health decision is guided by timely, high-quality, actionable data inside an integrated public health and healthcare ecosystem, aligning local, state and national partners, so communities can experience healthier, more equitable, prosperous lives.