ACL Issues Two Reports on the Importance of Data in Achieving Health Equity for Individuals with IDD

According to a recent news release, The Administration for Community Living (ACL) and other federal partners worked with researchers, community partners, individuals with intellectual and developmental disabilities (IDD), and other stakeholders to develop and release two reports. 

The first report, “Working Through the Data Conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys,” recommends new questions that could be used on national population based surveys, such as the National Health Interview Survey, to identify individuals with IDD. This would allow us to collect information about the health status and number of Americans with IDD. ACL is now working with the National Center for Health Statistics at the Center for Disease Control to test the recommended set of questions.

The second report, “Enriching our Knowledge: State and Local Data to Inform Health Surveillance of the Population with Intellectual and Developmental Disabilities,” explores how state-level data can be used to know more about the health status of the IDD population. The report highlights the following best practices from four states:

  • California has been collecting data on race, ethnicity, and language within the IDD population to work towards culturally competent services.
  • Washington has been collecting data on people with IDD who are not receiving state services, a population missing from administrative data sets.
  • South Carolina’s “data cube” brings together administrative data from a variety of sources to identify trends by age, gender, race, disability type, and more.
  • Ohio hired a “super user” to create data linkages that allow the state’s IDD department to use Medicaid data to better understand the populations they serve.”

FMI Access other free abstracts on this subject that ACL has contributed to writing here:  Free abstracts.