Across the country, federal and state databases with disability data are disappearing. Some have already been taken down. Others may be changed, lose funding, or be deleted. Once this data is lost, much of it cannot be recreated. This project is working to prevent that loss.

Why Disability Data Matters

Disability data is the information the disability community uses to be seen, understood, and heard.

This data affects real decisions. It shapes medical research that improves care and treatment. It informs policies about access to healthcare, education, employment, and housing. It also documents disparities in income, incarceration, homelessness, and health outcomes that might otherwise go unmeasured and unaddressed.

Some Data Cannot Be Recreated

Some datasets capture a specific moment in time. For example, a demographic survey records information about people and communities at the time the survey takes place. If that survey data is deleted, the same information cannot simply be collected again because that moment has passed.

Lawmakers, researchers, and advocates use this data to track what is changing, what is not changing, and where needs are greatest.

Losing Data Causes More Harm Over Time

When disability data disappears, we lose more than one dataset. We lose the ability to track trends over time, hold institutions accountable, and create policy based on evidence. Communities that are already underserved and undercounted may become even less visible in the public record.

We need to preserve disability data before it is gone.

What We Are Doing

We are building a long-term, sustainable archive of disability data. We are:

• Rescuing data that has already been taken down
• Protecting data that is still available but may be at risk
• Keeping the data open, accessible, and free for anyone to use indefinitely

A New Public Data Portal

The American Association of People with Disabilities (AAPD) is leading this work with support from Microsoft. AAPD is building a new public data portal where preserved disability data will be stored and maintained.

The data will be free and available to researchers, advocates, policymakers, and the public. The portal is designed for the long term so that important disability data remains available even if the original source changes or disappears.

The archive is being built. Sign up below to receive updates about the project and to learn when the archive launches.

Led by the Disability Community

This project belongs to the disability community.

Disabled people guide decisions about what data the project preserves and how the project preserves it. Anyone who wants to contribute can take part. People can offer technical skills, knowledge about a subject, or their time.

Disability data belongs to the disability community. We are working to make sure it stays that way.

Get Involved or Receive Updates

Use this form to connect with the Disability Data Archive Project. You can sign up for updates, tell us about data that may be at risk, or offer your skills, knowledge, or time.

Use this form to:

• Receive Disability Data Archive Project updates
• Suggest a dataset for inclusion in the archive
• Share information about at-risk or deleted data
• Offer technical skills or subject expertise
• Volunteer your time
• Explore a partnership
• Ask a question or share another idea

If you prefer to email us, send your message to technologypolicy@aapd.com. Use “Disability Data Archive Project” as the subject line and include the information requested above or let us know your preference for receiving updates about the project.