Building the Disability Data We Deserve: Why Federal Data Gaps Matter and What We Can Do Next
A recent Government Accountability Office report found a lack of accurate, community accountable data on the experiences of disabled people in accessing healthcare.
These data gaps limit research and civil rights protections for disabled people as well as minimizing the true scale of unmet accessibility needs.
Disabled people deserve better. Here’s how we can move forward.
On February 16, Prism Reports published an article written by one of our co-founders, Adam Beddawi, about the Government Accountability Office’s (GAO’s) latest findings on federal disability data and health care accessibility. From our analysis, one theme kept resurfacing: we cannot fix what we do not measure. The federal government estimates that nearly 44 million disabled people live in the United States—more than 13% of the population—but even that number is likely an undercount. And when the data used to enforce civil rights laws fails to capture the barriers disabled people face in clinics, hospitals, telehealth systems, and insurance processes, the result is predictable: inaccessibility becomes invisible, and invisibility becomes permission for the status quo.
At The Interdependent Futures Lab, we exist to interrupt that cycle. Our work is rooted in the belief that communities should shape the systems that govern their lives and that data, when collected ethically and used responsibly, is one of the most powerful tools for shifting policy, culture, and resource allocation.
This moment demands that we treat disability data not as a technical exercise, but as a civil rights imperative.
What the GAO Found and Why It Matters for Disability Justice
The GAO report highlights several critical gaps:
No national-level data on accessibility barriers in health care. Federal surveys rarely ask about accessible equipment, communication supports, telehealth usability, or provider training—despite these being among the most common barriers disabled people face.
Inconsistent disability measures across agencies. Without a shared standard, data cannot be compared, aggregated, or used to enforce anti-discrimination laws.
Limited pathways for disabled people to shape what gets measured. Federal agencies often design survey instruments without meaningful community input, leading to measures that miss the lived realities of disability.
These gaps don’t just limit research—they weaken enforcement of the ADA, Section 504, and other civil rights protections. They also obscure the true scale of unmet accessibility needs in health care systems across the country.
How This Connects to IFL’s Mission
IFL was built to help communities, coalitions, and organizations design futures grounded in care, interdependence, and shared power.
The findings in this report speak directly to our core commitments:
Community-led research: Disabled people and their care communities must define what accessibility means, what barriers matter most, and what data should be collected to design, implement, and evaluate efforts to ensure accessibility.
Ethical, participatory methods: Data collection must be accessible, trauma-informed, and accountable to the people it represents.
Policy and systems change: Better data is not the end goal. It is the foundation for stronger enforcement, smarter resource allocation, and more equitable health systems.
Our services—research and evaluation, policy analysis, communications, and capacity strengthening—are designed to help organizations move from insight to action. The GAO report underscores why our work is urgent.
What Disability Advocates and Service Organizations Can Do Now
The path forward is not just federal; it’s local, community-driven, and collaborative. Here are concrete steps organizations can take:
1) Ask disabled communities what a disability data standard should measure. Federal agencies will eventually need to adopt a minimum disability data standard.
Advocates can begin shaping that now by asking:
What accessibility barriers matter most in daily life?
What health care experiences are missing from current surveys?
What forms of discrimination or exclusion go unreported because they go unmeasured?
Community-generated measures are more accurate, more legitimate, and more enforceable.
2) Identify the most pressing accessibility needs in your service area.
Organizations can begin mapping:
Where inaccessible equipment is concentrated
Which providers lack communication supports
How telehealth platforms fail disabled users
Where transportation, insurance, or administrative barriers create bottlenecks
This kind of localized data can guide advocacy, funding requests, and program design.
3) Build internal capacity to collect and use disability data ethically.
This includes:
Training staff on accessible survey design
Developing community review processes
Ensuring data collection tools are accessible
Creating feedback loops so disabled participants see how their input is used
4) Engage policymakers early. The Domestic Policy Council, HHS, and OMB will all play roles in shaping future disability data standards. Advocates can begin preparing briefs, testimonies, and community-informed recommendations now.
How IFL Can Support This Work
IFL’s services are built for exactly this kind of moment; when communities need rigorous, ethical, and participatory approaches to data and policy.
Research & Evaluation: We design mixed-methods studies, facilitate focus groups and interviews, and conduct rapid qualitative and quantitative analysis to surface community-defined accessibility needs.
Policy & Advocacy: We translate findings into policy memos, reform pathways, and advocacy strategies that help organizations influence federal, state, and local decision-makers.
Communications & Training: We create accessible reports, data visualizations, and messaging frameworks that help organizations communicate findings to diverse audiences.
Capacity Strengthening: We support organizations in building internal systems for ethical data collection, program evaluation, and strategic planning.
Our goal is not just to produce data, it’s to help communities use data to build power.
A Future Where Disability Data Works for Us
The GAO report is a reminder that federal systems are still not designed with disabled people in mind. But it’s also an opportunity. We have a chance to define what disability data should look like, how it should be collected, and how it should be used to enforce our rights.
At IFL, we’re committed to helping communities seize that opportunity through research that centers lived experience, policy work that advances justice, and capacity-building that strengthens our collective ability to demand better.
If your organization is ready to explore what this work could look like—whether through community-led research, accessibility mapping, policy strategy, or training—we’d love to connect.