Challenges in the first ever national survey of people with intellectual disabilities

Sally Malam, Eric Emerson, Ian Davies

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review

3 Citations (Scopus)


Introduction and background

The population of adults with intellectual disabilities has been largely neglected in survey research, as the significant impairments in communication and understanding that are common among this population were considered too great a barrier to their participation in large-scale surveys. While there had been qualitative research, prior to 2002 there had never been a nationally representative survey conducted with this population. In surveys concerning this population, data was largely collected from proxy respondents, such as parents or caregivers. In the absence of a sampling frame for the whole population, surveys generally used convenience samples of those in touch with services. 

Original languageEnglish
Title of host publicationHard-to-Survey Populations
EditorsRoger Tourangeau, Brad Edwards, Timothy P. Johnson, Kirk M. Wolter, Nancy Bates
PublisherCambridge University Press
Number of pages21
ISBN (Electronic)9781139381635
ISBN (Print)9781107031357, 9781107628717
Publication statusPublished - 2014
Externally publishedYes


  • adults with intellectual disabilities
  • large-scale surveys
  • participation in large-scale surveys
  • nationally representative survey
  • proxy respondents
  • convenience samples
  • Valuing People: A New Strategy for Learning Disability for the 21st Century
  • UK Department of Health
  • lack of national information


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