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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.
Health Affairs Scholar
|September 27, 2024
Summary
National surveys rarely include disabled individuals, hindering health disparity research. Few surveys oversample disabled people or offer accessibility protocols, limiting data generalizability.
Area of Science:
- Public Health
- Survey Methodology
- Health Disparities Research
Background:
- National surveys are crucial for understanding health disparities among disabled populations.
- Limited research exists on methods for including disabled individuals in national surveys.
- Ensuring representative data is essential for accurate public health insights.
Purpose of the Study:
- To evaluate the methodologies used in national surveys to include disabled adults.
- To identify barriers and opportunities for enhancing the inclusion of disabled people in surveys.
- To assess survey practices regarding oversampling, accessibility protocols, and data collection modalities.
Main Methods:
- Reviewed 201 nationally representative surveys from the CDC and US Census Bureau (past 5 years, adults ≥18).
- Analyzed publicly available survey documents and administrator questionnaires.
- Assessed surveys for oversampling of disabled individuals, data accessibility protocols, and multiple data collection modes.
Main Results:
- Only 30 of 201 surveys met inclusion criteria.
- One survey oversampled disabled individuals.
- None of the surveyed groups had a data-collection accessibility protocol.
- 21 surveys offered multiple data-collection modalities (e.g., phone, paper).
Conclusions:
- Significant barriers exist in including disabled populations in national surveys.
- Opportunities lie in developing data accessibility protocols and targeted oversampling strategies.
- Improving survey inclusivity is vital for generalizable health disparity data.
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