2021 Compendium of Disability Data Collection Methods

2021 Compendium of Disability Data Collection Methods

Published: Jan 31, 2021
Publisher: Princeton, NJ: Mathematica
Associated Project

Disability Statistics and Measurement Rehabilitation Research and Training Center (StatsRRTC)

Time frame: 2018-2023

Prepared for:

U.S. Department of Health and Human Services, National Institute on Disability, Independent Living and Rehabilitation Research


William Rafferty

Entities involved in quantitative and qualitative data collection—such as federal agencies, university survey centers, and private polling firms—should (and sometimes by law must) consider the extent to which their methods create barriers to participation for people with disabilities. Yet few resources are available to address this problem. To fill this knowledge gap, we created the Compendium of Disability Data Collection Methods, an easily accessible source of research on the methodological issues associated with collecting data from or about people with disabilities. The 2021 version of the compendium, an indexed reference list, contains 441 references on the following subjects:

  • Disability/impairment type
  • Aging and later-life disability
  • Developmental, intellectual, and cognitive impairments, including dementia, traumatic brain injury, and learning disabilities
  • Sensory and communication impairments, including blindness and low vision, hearing loss and deafness, autism spectrum disorder, and speech impairments
  • Physical impairments, including musculoskeletal conditions, epilepsy, muscular dystrophy, multiple sclerosis, and other disabilities
  • Psychiatric impairments and mental health, including anxiety disorders, post-traumatic stress disorder, psychotic disorders, and mood disorders

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