STATUS: Active Project
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