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HRB at the International Association for the Scientific Study of Intellectual and Developmental Disabilities Conference

Dr Sarah Craig, Head of National Health Information Systems, HRB, co-presented a morning session at the above conference about 'Lessons learnt from the Irish National Intellectual Disability database and future plans'.

'Approximately 1300 people attended the four-day conference', said Dr Craig. 'It was interesting to see more papers at the conference in the area of 'big data', and that the HRB's National Intellectual Disability Database (NIDD) is just one of a very small number of data sources in the world that are dedicated to intellectual disability'.

Dr Craig and Professor Roy McConkey, Emeritus Professor of Developmental Disabilities, University of Ulster presented papers on four topics in a dedicated session about information collected from the NIDD.

Beginning with an overview of the National Intellectual Disability Database (NIDD), lessons learned and future plans, Dr Craig provided a background to the data and set the scene for the three following conference presentions.

  1. Professor McConkey presented on A case-study of policy change in residential service provision for adult persons with intellectual disability in Ireland. This paper reported  data on changes in the number of people on the NIDD that were living in congregated setting in two time periods, 2007-2012 and 2012-2017. These periods spanned a time of significant policy change and the research found significant variation across the country in levels of decongregation based on the ability and willingness of service providers to implement change. A full copy of the paper A case-study of policy change in residential service provision for adult persons with intellectual disability in Ireland is available at DOI: 10.1111/hsc.12803
  2. Dr Craig then presented on Family carers of people with intellectual disabilities in Ireland: Changes over ten years. This presentation was based on data in a paper of the same name that was published in the Journal of Intellectual Disabilities.  https://doi.org/10.1177%2F1744629519866313. The paper concluded that the quantum and type of support for carers needs consideration particularly as family carers are ageing.
  3. And lastly Professor McConkey presented on Support for family carers of children and adults with intellectual disability: Who gets priority? In this talk NIDD data for 2007 and 2017 were examined to explore changes over time in relation to the provision of respite and home support services. The analysis found that those in receipt of such services found it easier to access more of the services than those who did not receive either service. This primary paper that the presentation was based upon is available in the Journal of Social Work (online early). DOI: 10.1177/1468017319860312.

Dr Craig also said that,

'Along with the four presentations, Ms Anne Doyle, HRB presented a poster on Multidisciplinary services data from the NIDD. The poster highlighted that multi-disciplinary services are mostly availed of by those living at home, and that demand for services such as speech and language therapy and psychology remains high.

'The NIDD is a rich source of data with the potential to deliver information and insight over and above its primary function. We are always open to explore the possibility to collaborate with others in order to extract the maximum benefit from our data for people with disabilities'.