Caraíosa Kelly’s research while affiliated with Health Research Board and other places

Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40-49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge.

In Europe, many people with intellectual disabilities continue to live in congregated settings. In 2012, Ireland formally introduced a resettlement policy with people moving to live in more personalised arrangements. This longitudinal country case‐study aimed to monitor the implementation of this policy and the intra‐country variations that arose using the records maintained in the National Intellectual Disability Database. Details of over 4,000 people living in congregated settings were examined in 2007 and again in 2012 and 2017. In addition, people who moved from such settings from 2007 onwards were tracked and the number of new admissions to them was estimated over the 10‐year period. Overall there was nearly a 30% drop in the numbers of people in congregated settings but the reductions varied markedly across the country and by 2017 the disparity was greater than in 2007. Also by 2017 persons aged over 55 years were eight times more likely to be accommodated in congregated settings. The case‐study illustrates the value of a longitudinal dataset for monitoring policy implementation across a diversity of provider organisations and administrative areas.

Background: International prevalence rates for intellectual disability vary widely with estimates often based on samples. In Ireland people with an intellectual disability are identified in the national census. Moreover, a national register of people receiving or requiring intellectual disability services is maintained and updated annually. Aims: The prevalence rates from the census were contrasted with those from the register along with variations in prevalence across the 26 counties of Ireland. Methods: 2011 and 2016 Census of Population prevalence per 1000 for children (aged 5-19 years) and adults (20 years and over) stratified by the 26 countries were contrasted with similar prevalence in the national register. Publically available data from the 2011 census in Northern Ireland and Scotland were obtained. Results: The Irish census identified nearly twice as many children and adults than were on the national register. Prevalence rates also varied across the 26 counties; more so on the register than the census. The Irish census had lower prevalence rates than Northern Ireland but higher than Scotland. Conclusions: Determining the prevalence of intellectual disability is challenging due to variations in terminology. A national register has advantages over reliance on census data for service planning.