The Importance of Data in Achieving Health Equity for Individuals with Intellectual and Developmental Disabilities

October 28, 2019
Julie Hocker, Former Commissioner, Administration on Disabilities

How many people are currently living in the United States with Intellectual and Developmental Disabilities (IDD)?
What health problems do individuals with an IDD frequently have?
How many individuals with IDD have access to health care?

The answers to questions like these are critical to developing policies and services that effectively support the health and well-being of individuals with IDD and their families.

In other words, improving health outcomes and health equity require good policies.  Good policies require good data.

Unfortunately, when it comes to understanding the lives and health experiences of people with IDD, there is still a lot we do not know. This is in part because individuals with IDD are often left out of national health surveys.

To address this gap and ultimately achieve greater health equity, ACL and our federal partners across the U.S. Department of Health and Human Services worked with researchers, community partners, individuals with intellectual and developmental disabilities, and other stakeholders to develop two reports which were released earlier this month.

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.

I hope these reports will shine a new light on the importance of data in making sound policy decisions and spark much needed conversations and action to achieve greater health equity for the population we serve.

ACL staff also contributed to several articles published in the October issue of the journal Intellectual and Developmental Disabilities, titled, “On Counting What Matters: Finding Adults With Intellectual and Developmental Disabilities in Population Health Data," Free abstracts from the issue are available to the public.

All of us at ACL are excited about this momentum. We look forward to building on it to move the conversation forward and advance policies that achieve greater health equity.

Last modified on 05/07/2020

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