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Disability inclusion in national surveys
Caroline Cerilli1, Varshini Varadaraj1, Jennifer Choi2
1Disability Health Research Center, School of Nursing, Johns Hopkins University, Baltimore, MD 21205, United States.
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.
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