Making numbers count: national datasets on intellectual disability

Abstract

Purpose – The purpose of this paper is to provide a commentary on “Adults with learning disabilities known to local authorities in Scotland: a national dataset” by Claire Stuart and colleagues. Design/methodology/approach – Drawing on experiences with the National Intellectual Disability Database in Ireland, the authors identify the key elements to be addressed such as the uses to which information from the database will be put; the definition of intellectual disability for inclusion of individuals; defining the information to be gathered; the systems for gathering information; checking and auditing the information that is collected, and the types of reports emerging from the analyses. Findings – A national database of persons with an intellectual disability is at least desirable – if not essential – to the delivery of equitable and effective service supports. The advent of computerised data management tools makes this a realistic option in most European countries although debates continue around the protection of personal data and the costs involved in establishing and maintaining dedicated databases. Originality/value – National data sets on intellectual disability can make a significant contribution to equitable and effective service planning. However, major challenges need to be overcome so that the information collected is reliable and valid.