Mathematica 2023 Compendium of Disability Data Collection Methods

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In 2018, the Administration for Community Living’s National Institute on Disability, Independent Living, and Rehabilitation Research, within the U.S. Department of Health and Human Services, funded a Rehabilitation Research and Training Center on Disability Demographics and Statistics (StatsRRTC). The goal of this center, which is housed at the University of New Hampshire’s Institute on Disability, is to bridge the divide between the producers and end users of disability statistics, thereby supporting better data collection, more accurate information, better decisions, more effective programs, and improved lives for people with disabilities. As a collaborator with the StatsRRTC, Mathematica is working on several integrated research and dissemination projects designed to improve existing methods of collecting disability data and to identify innovative ways to collect data on the experiences of people with disabilities.

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 2023 version of the compendium, an indexed reference list, contains 615 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
  • Data collection
    • Data collection mode and adaptive technologies, including interviewer-administered surveys, self-administered surveys, ecological momentary assessments, and mobiledevice-based data collection
    • Interviewing techniques and interviewer effects
    • Proxies
    • Inclusive strategies and participatory action research
    • Qualitative methods
  • Questionnaire design and measurement
    • Developing and validating measures and instruments
    • Measuring satisfaction and quality of life
  • Sampling and nonresponse
  • Special populations
    • Children and youth with disabilities
    • Veterans’ populations
  • Ongoing national surveys
    • American Community Survey (ACS)
    • Current Population Survey (CPS)
    • National Health Interview Survey (NHIS)
    • National Health and Nutrition Examination Survey (NHANES)

Chapter II of the compendium is an indexed reference list. The entries are ordered alphabetically
within each subject, and most include a URL so that users can retrieve the publication. Because
the references have been placed in all applicable categories, many of the sources are indexed
under more than one subject.