AAHD Calls for Action Following Census Bureau Meeting on Disability Data Collection
The U.S. Census Bureau held a much-anticipated stakeholder convening this Monday, September 30th with disability leaders and key federal partners across the country. This gathering was a space for advocates to affirm the urgent need for comprehensive disability data collection. Efforts to expand disability data come on the heels of a fall 2023 proposal from the Census to change how this information is collected in their annual American Community Survey (ACS). That proposal would have decreased the overall count of people with disabilities nationwide by as much as 40%, prompting a broader discussion of how disability data is already undercounted by existing measures
Here’s what Disability Data helps us to do:
Data helps us understand how many people across the United States might benefit from a multitude of programs. The number of people with disabilities has a direct impact on resource allocation to meet many different community needs, from housing to health services. Even the current measures in the ACS have been criticized for undercounting key disability areas including communication-related disabilities, mental health and chronic conditions – including Long COVID. Claudia Gordon, Chair of the National Council on Disability, presented at the stakeholder meeting on Monday and may have stated it best: “Accurate disability data is essential for effective advocacy and appropriate resource allocation [… ]If we have an undercount of people with disabilities , it means we have a truly incomplete picture of our population […] What is underestimated is underserved”.
When we’re talking about health equity, we need data equity too. Researchers have been raising the alarm on this issue for years, though the need for accurate disability data became a huge priority with the start of the COVID-19 pandemic. Without the right data collection measures, researchers had to get creative in how they tracked the health disparities in COVID outcomes[1]. Patient data from health care organizations allowed researchers to identify that people with intellectual and developmental disabilities (IDD) had a much greater risk of infection and death from the virus[2]. This information was necessary to inform vaccination priorities, care provision, and living arrangements to support better health outcomes for this disability community in particular. From a public health perspective, better data will help us to address health disparities across the disability community.
Disability Data Collection Demands our Attention
Following this meeting, disability advocates, researchers and public officials will need to ensure that improvements to disability data measurement keep moving forward[3]. This data is an essential tool in shaping ongoing policies that can help or hurt our communities. How we measure disability itself needs to demonstrate the complexity and diversity of this demographic.
During the convening, our Director of Research, Dr. Anjali Forber-Pratt shared about how we might move forward building the broader disability data ecosystem: “Input from key stakeholders is vital—this includes disabled individuals, data users, and those who develop the data infrastructure. It’s equally important to also intentionally include … voices from underserved communities with disabilities, as we face unique barriers. […] One immediate step forward is to start collecting and reporting disability as a demographic.”
We applaud the Census Bureau for hosting this gathering, and welcome ongoing dialogue and deliberations on how best to support federal data collection to better disability futures. AAHD will continue to elevate this important work with our partners, and we look forward to sharing updates over the coming months with our community.
Census Meeting Highlights
- Watch the recording of the Census Bureau’s Stakeholder meeting.
- AAHD’s Director of Research Anjali Forber-Pratt’s Remarks on the Importance of Disability Data Collection.
- AAPD President Maria Town’s Remarks on the challenges of surveying people about disability
[1] Landes, S.D. & Turk, M.A.. Health equity for people with intellectual and developmental disability requires vast improvements to data collection: Lessons from the COVID-19 pandemic. Disability and Health Journal, 17(1). https://doi.org/10.1016/j.dhjo.2023.101539
[2] Gleason, J, et al. The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States. NEJM Catalyst. https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051
[3] Landes, S.D. et al. A Research Roadmap Toward Improved Measures of Disability. Health Affairs. https://www.healthaffairs.org/content/forefront/research-roadmap-toward-improved-measures-disability