Nebraska DHHS Chosen for Pilot Program to Identify Individuals with Disabilities During Public Health Emergencies

News Release
For Immediate Release: 3/18/2022

Jeff Powell, (402) 471-6223,

Lincoln, Neb. – The Nebraska Department of Health and Human Services (DHHS) is one of eight public health institutions chosen to participate in a pilot program to better identify and help individuals with intellectual and developmental disabilities (IDD) during future public health emergencies.

The pilot program, organized by the Association of State and Territorial Health Officials (ASTHO) in coordination with the CDC is working to build public health capacity to monitor the health and well-being of people with disabilities before, during, and after public health emergencies. This will be achieved by developing, testing, and disseminating a syndromic surveillance definition that can be used to identify people with disabilities during emergencies.

Syndromic surveillance provides public health officials with a timely system for detecting, understanding, and monitoring health events. By tracking symptoms of patients in emergency departments, public health can detect unusual levels of illness to determine whether responses are warranted. This data can serve as an early warning system for public health concerns.

The COVID-19 pandemic shed a light nationwide on the lack of data available to detect, understand, and monitor health events among people living with disabilities. By taking part in this pilot program, Nebraska will be at the forefront and fully prepared to serve individuals with IDD during a future public health emergency, whenever that may occur.

“DHHS continues to learn from the COVID-19 pandemic and is preparing and planning for the next public health emergency to ensure we can respond in the most effective way possible to protect all Nebraskans," said DHHS CEO Dannette R Smith.

“This pilot program will have a lasting impact on national, state, and local capacity to respond, detect, understand, and monitor health events among people with disabilities during public health emergencies," said Developmental Disabilities Division Director Tony Green. “I am proud the State of Nebraska is at the forefront of this important program."

The pilot program will complete the following activities throughout the one-year project period:

Establish and facilitate a scientific panel to develop syndrome definitions for disability

  • Decide on disability definitions for mapping diagnostic codes
  • Identify existing algorithms using diagnostic codes
  • Map diagnostic codes and chief complaints to disability definition
  • Refine syndrome definition following pilot

​Pilot test and finalize syndrome definitions for disability

  • Test codes, terms, and chief complaint codes in the National Syndromic Surveillance Program's Electronic Surveillance System for the Early Notification of Community-based Epidemics (NSSP-ESSENCE) using national data
  • Test definitions on state datasets and compare results to other sources
  • Finalize syndrome definitions based on pilot results and scientific panel input

Disseminate and promote the use of syndrome definitions for disability

  • Create syndrome definition description and user guide
  • Develop manuscript summarizing methods for creating the syndrome definitions and implications for COVID-19 response 

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