Data Collection Helps Agencies Serve All Adults with Disabilities

How to Collect Racial, Ethnic and Language Data

Collecting data on the race, ethnicity and language of adults with developmental disabilities currently supported by agencies will help achieve our shared goal of helping more people from underserved communities. Racial and ethnic data provide crucial information on where we are now and where we want to be.

“With data, we can see clearly what disparities exist, and then create policies and practices to provide equitable services,” said Lisa Lorraine, Jubilee’s Breaking Barriers Manager. “Agencies already collect a significant amount of information on the people they support, so adding data collection on race, ethnicity, and language should be fairly straightforward, and a best practice going forward.”

Breaking Barriers suggests the following three resources that will help you determine how best to collect race, ethnicity, and language data.

It is important to also keep in mind the unique needs of our community and adjust or add questions as needed. For example, when working with individuals with intellectual and developmental disabilities, it is a best practice to collect additional data about the primary language of the primary caregiver or legal guardian. 

Transparency is essential in sensitive data collection. Communicate with the people you support and their families about why you are collecting this data. The American Hospital Association proposes the following language, and more information is available from their Institute for Diversity and Health Equity.

“We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care.” 

These resources are a good starting point as you develop your data collection methodology. Jubilee’s Breaking Barriers program is available as a resource for you in this process. Contact Lisa Lorraine at