Harmonizing Disability Data To Improve Disability Research And Policy

Abstract

Disability is complex and multifaceted, complicating governments’ efforts to collect the high-quality, comprehensive data necessary for developing, implementing, and monitoring policies. Yet data are needed to obtain information on functioning in the population, to identify the population with disabilities, and to disaggregate indicators of well-being by disability to determine whether people with disabilities are participating in society to the same extent as those without disabilities. In this article we discuss the need for data harmonization to improve disability research and policy. We describe standard question sets on disability developed for inclusion in surveys and administrative systems, as well as the need for coordination of both statistical and administrative data systems. Until disability data become more harmonized, it will not be possible to support the development of comprehensive, evidence-based policies and programs to address the needs of the population with disabilities.

Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness

“…15 The growing attention to disability disparities has coincided with an increasing recognition of a need to capture high-quality data. 3,[19][20][21][22] Section 4302 of the Affordable Care Act calls for a minimum standardized measure of disability in all federally funded surveys. 21,22 The chosen method was a series of 6 yes-no questions from the American Community Survey (ACS-6) that ask about serious difficulty with the following basic functions: seeing; hearing; remembering, making decisions, or concentrating; ambulating; caring for self; and/or doing errands.…”

“…The growing attention to disability disparities has coincided with an increasing recognition of a need to capture high-quality data . Section 4302 of the Affordable Care Act calls for a minimum standardized measure of disability in all federally funded surveys .…”

Disability Documentation in the National Health Interview Survey and Its Consequence: Comparing the American Community Survey to the Washington Group Disability Measures

“…19,21 Closing this data gap necessitates a methodological standard for identifying the disabled population across data collections. 22 When disability status is not measured accurately, it is difficult to determine whether observed patterns of health inequities reflect existing realities or methodological variations. 22 Thus, inclusionary evidence-based policies cannot be developed without standardized and accurate measures of disability status within nationally-representative surveys.…”

“…22 Thus, inclusionary evidence-based policies cannot be developed without standardized and accurate measures of disability status within nationally-representative surveys. 19,22,23…”

“…22 When disability status is not measured accurately, it is difficult to determine whether observed patterns of health inequities reflect existing realities or methodological variations. 22 Thus, inclusionary evidencebased policies cannot be developed without standardized and accurate measures of disability status within nationally-representative surveys. 19,22,23 Recognizing the importance of harmonized disability data, Section 4302 of the Affordable Care Act requires establishing a data collection standard for tracking federal information on disability status.…”