Access the full report here: Make It Count: Strengthening Disability Data through Partnership, Participation and Representation
PLAIN LANGUAGE EXECUTIVE SUMMARY
This report outlines the findings from a meeting of disability and Census field experts.
The focus of this group was to discuss barriers and potential improvements to Census and American Community Survey disability data. The participants and presenters made a case for why disability data matters. This data matters because it impacts funding, services, and representation within local, state and federal legislatures. The individuals involved in the meeting included National Disability Rights Network staff, Protection & Advocacy Network staff, community advocates from other disability organizations, and researchers in the disability data space.
There are several main problems that came to the surface during this meeting:
- People with disabilities are undercounted in federal data systems.
- Current data has gaps and limits.
- The questions within the surveys themselves do not reflect the lived experience of many people with disabilities.
- Some questions on these surveys are inaccessible or hard for people with disabilities to complete.
- Many people are afraid to complete the Census. They do not trust or know what their data may be used for.
These factors contribute to several key impacts for the disability community, including:
- Undercounting leading to less funding.
- Limited data leading to unidentified gaps: it’s hard to tell who we’re missing, and what voices are being left out.
- A lack of effective outreach leading to some communities being overlooked.
Main insights from the report include the following themes:
- Data drives real world decision-making.
- Data needs to be more detailed, inclusive, and accurate.
- Trust, accessibility and community engagement are important in Census outreach.
- Data is most effective when paired with real human stories.
- Advocates need stronger data skills and resources.
The attendees also defined what needs to change to improve the Census and its impact on people with disabilities. These changes include:
- Improving disability question design.
- Expanding intersectional and local data collection.
- Making surveys accessible and easier to complete.
- Increasing outreach through trusted community partners.
- Addressing concerns about privacy and misuse.
- Strengthening partnerships between government, researchers, advocacy organizations and community groups.
The report also emphasizes the need to act now in preparation for the 2030 Census. Improving our data and ensuring everyone is a long-term effort. Better disability data results in more equitable policies, funding and representation for people with disabilities.
