An exercise in surveying a non-universally defined group in the population : the Northern Ireland survey of activity limitation and disability

Abstract

Developing policy and delivering services to people with disabilities is an important aspect of our society. As with all areas of policy and service provision, accurate, timely and reliable data are fundamental to the setting, monitoring and examination of that provision. Market and non-market service providers, advocacy groups and the general population seek increasingly detailed data on the prevalence, nature, severity and life circumstances of those people in our society who experience disability. However, disability is complex and difficult to measure. Whilst most people 'know' what disability means there is little consensus as to a complete but concise definition of the concept that could be employed in censuses, surveys or other data and research instruments. This paper explores the recent experience of the Northern Ireland Statistics and Research Agency in defining, identifying and surveying this seemingly growing group in our society. Previous survey instruments as well as current international models are examined. Experiences of surveying in the usual arena of the household are compared with the survey process experienced in communal establishments such as long-stay hospital wards and care homes. The key results from analyses to date are also highlighted.