July 2024

On July 15, AERA and the Council of Professional Associations on Federal Statistics (COPAFS) submitted comments in response to a Request for Information (RFI) to inform the development of a federal evidence agenda on disability equity. The Disability Data Interagency Working Group (DDIWG), established by the White House Office of Science and Technology Policy’s (OSTP) National Science and Technology Council Subcommittee on Equitable Data (SED), is working to develop the evidence agenda with the aim of improving the federal government's ability to make data-informed policy decisions that advance equity for the disability community.

The DDIWG sought input on three areas as part of the evidence agenda: disparities; data collections and public access; and privacy, security, and civil rights.

In their comments, AERA and COPAFS highlighted two overall recommendations for the DDIWG. First, they encouraged the Office of the Chief Statistician and the Interagency Council on Statistical Policy (ICSP) to develop a statistical policy directive (SPD) to establish consistent measures of disability status, similar to SPD 15, which exists to establish standards for reporting race and ethnicity. This recommendation would aim to establish consistent measures of disability status due to the variation with how data on disability status and disaggregation by disability type are currently collected in federal surveys and administrative data collections.

Second, in their comments AERA and COPAFS called for adequate resources for data collection on disability status to inform an equity agenda, noting the constrained resources of federal statistical agencies. The comments focused on current data that can inform an evidence agenda on disability equity, as well as where data are needed to better understand and address disparities for access and outcomes in education and the development of the STEM workforce. One example is postsecondary education, where there are gaps in individual-level and disaggregated data for individuals with disabilities, data that are needed to understand education and workforce outcomes after individuals with disabilities leave higher education.

An additional gap is missing data and overall availability of data on the disability status of federal research and training applicants and principal investigators. One other area that the evidence agenda could explore is the intersectionality of disability with race and ethnicity, gender, and socioeconomic status.

The comments also noted the need for protecting privacy and confidentiality in collecting and reporting disability-related data, as well as for enabling restricted-use access of those data by researchers.

The RFI represents the most recent work of OSTP’s Subcommittee on Equitable Data, which also engaged the community on the development of a federal evidence agenda on LGBTQI+ equity, released in January 2023.