Skip to main content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

HHS Logo Eagle IconU.S. Department of Health and Human Services

Engaging People with Intellectual and Developmental Disabilities to Enhance Functional Disability Representation in Point of Care Settings

Engaging People with Intellectual and Developmental Disabilities to Enhance Functional Disability Representation in Point of Care Settings
Agency
  • Centers for Disease Control and Prevention (CDC)
  • National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Start Date
  • 03/01/23
Functionality
  • Use of Clinical Data for Research
  • Standardized Collection of Standardized Clinical Data
  • Collection of Participant Provided Information

 

STATUS: Active Project

BACKGROUND

People with intellectual and developmental disabilities (ID/DD) experience systemic inequities in health care access, social determinants of health, morbidity, and mortality compared to people without ID/DD. The coronavirus disease 2019 (COVID-19) pandemic exacerbated existing inequities for people with ID/DD, who have been disproportionately impacted with increased infections, hospitalizations, and deaths, in addition to interruptions in essential services and supports and social isolation. Yet a lack of standardized and accessible data on people with ID/DD has made it difficult for researchers and public health professionals to comparably document and address the health inequities and needs of people with ID/DD. Ensuring consistent representation of people with ID/DD in health care and service data is necessary for identifying and addressing inequities faced by this population.

To address these data needs and improve data capacity for patient-centered outcomes research (PCOR) for ID/DD, the CDC’s National Center on Birth Defects and Development Disabilities will develop a data collection instrument based on existing survey questions, namely the six questions on disability from the American Community Survey (ACS-6) and the Washington Group Short Set on Functioning (WG-SS); informed by qualitative interviews; revised based on cognitive testing; and evaluated in a pilot feasibility study. The resulting functional disability demographic checklist will increase representation of people with ID/DD in administrative data systems by improving capture of relevant information at the point of care.

PROJECT PURPOSE & GOALS

The goal of this project is to develop methods to identify people with ID/DD in administrative data systems by engaging people with ID and/or DD and close informants to develop a functional disability demographic checklist for use at the point of care, which will be accomplished through the following objectives:

  • Establish a technical expert panel (TEP) to guide the project, including Federal agencies, community and academic researchers and professionals, public health experts, and people with ID/DD or their proxies
  • Conduct qualitative interviews on disability functioning with adults with ID/DD and an informant
  • Conduct cognitive testing on a minimal set of questions to identify people with ID/DD as a supplement to the ACS-6 and/or WG-SS checklist format in point of care settings (i.e., Functional Disability plus ID/DD Demographic Checklist)
  • Conduct feasibility study of Functional Disability plus ID/DD Demographic Checklist in point of care setting