Disability inclusion in national surveys

Abstract

National surveys are important for understanding the disparities that disabled people experience across social determinants of health; however, limited research has examined the methods used to include disabled people in these surveys. This study reviewed nationally representative surveys administered by the Centers for Disease Control and Prevention (CDC) and the US Census Bureau that collected data in the past 5 years and sampled adults ≥18 years. Data from both publicly available online survey documents and a questionnaire emailed to survey administrators were used to determine whether surveys (1) oversampled disabled people, (2) had a data-accessibility protocol to support data collection, and (3) provided multiple data-collection modalities (eg, phone, paper). Of the 201 surveys identified, 30 met the inclusion criteria for the study. Of these 30 surveys, 1 oversampled disabled people, none had a data-collection accessibility protocol, and 21 provided multiple data-collection modalities. This study highlights barriers and opportunities to including disabled people in national surveys, which is essential for ensuring survey data are generalizable to the US population.

Keywords: accessibility; disability inclusion; equity; national surveys.

Figure 1.

National survey distribution methods. Source: Authors' analysis. Sample includes 30 national surveys administered or jointly administered by the U.S. Census Bureau and/or the Department of Health and Human Services that were described as nationally representative, fielded within 2018-2023, sampled at the person and/or household level, and sampled adults ≥18. The multiple formats bar indicates the number of surveys that used at least 2 of the following in survey distribution: online form, paper form, in-person contact, or phone call.

Figure 2.

Oversampling of disabled people in national surveys. Source: Authors' analysis. Sample includes 30 national surveys administered or jointly administered by the U.S. Census Bureau and/or the Department of Health and Human Services that were described as nationally representative, fielded within 2018-2023, sampled at the person and/or household level, and sampled adults ≥18. Twenty survey administrators provided responses. Zero survey administrators reported oversampling disabled people.

Figure 3.

Data-collection accommodation policies in national surveys. Source: Authors' analysis. Sample includes 30 national surveys administered or jointly administered by the U.S. Census Bureau and/or the Department of Health and Human Services that were described as nationally representative, fielded within 2018-2023, sampled at the person and/or household level, and sampled adults ≥18. Twenty survey administrators provided responses. Zero surveys had any publicly available information online or any administrator response that discussed an accessibility protocol, defined as a data-collection procedure that follows all federal standards for disability access and inclusion.