Sarah Craig

Access to respite breaks for families who have a relative with intellectual disabilities: a national survey

AIMS This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families. Background.  Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions. METHOD National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received. FINDINGS Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks. CONCLUSION Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

An audit of the Irish National Intellectual Disability Database.

This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the improvement in the quality of data contained on the NIDD. A nationally representative sample was generated from the NIDD. Twenty-five auditors were recruited from senior staff within statutory and voluntary intellectual disability services and trained by the authors. They carried out 250 clinical interviews with individuals with ID, their families and/or paid carers, using structured questionnaires. The data collected were analysed using frequency analyses and compared with the existing NIDD data set to assess accuracy. Qualitative information was also collected. Overall, the results from the audit indicate that almost three quarters (72.2%) of all the data recorded on the NIDD are accurate, with 19.3% inaccurate, and 8.5% of the sought audit data not returned. The audit found that the NIDD significantly overestimated the need for enhanced residential care services. The study highlights the need for clinician and service user involvement in specialist service data collection, in order to both conduct valid research and to best plan for ID service development.

A decade of change in mainstream education for children with intellectual disabilities in the Republic of Ireland

Abstract Inclusive rather than segregated schooling has been advocated in several significant international declarations during the past two decades. Even so children with significant intellectual disabilities are at greater risk of being excluded from mainstream education, unless particular efforts are made to support them in such settings. These children and young people are more likely to be educated in special schools or in special classes within mainstream schools. In the decade from 2003 to 2013, the Republic of Ireland enacted legislation and provided additional financial resources for pupils with special educational needs, although these were more constrained during the financial crisis that Ireland experienced from 2008 onwards. A national database, updated annually, is maintained of children receiving services from specialist intellectual disability services and this enabled comparisons to be made for the enrolments of over 8000 children aged 4–19 in mainstream and special schools following the introduction of legislation and availability of additional resources. The data showed a steady increase in children with significant intellectual disabilities attending mainstream classes and a decrease in the proportion attending special schools along with a much smaller but decreasing proportion in special classes. The profile of pupils with intellectual disabilities in mainstream and special schools also changed over the 10 years with higher proportions of males, of pupils with moderate disabilities and those of primary age attending mainstream schools, whereas special schools now tend to have higher proportions of females and those of secondary school age. However, there was marked regional variation in the proportions of pupils in mainstream schools which was attributed to the availability of special schools across the State. This study demonstrates how a national data-set can be used to track the impact that policy changes and legislation designed to enhance the development of inclusive learning environments had on the number of pupils availing of mainstream opportunities. It was also possible to identify prevailing trends in types of support provided within schools and the changing pattern of provision for pupils with different levels of intellectual disability. At the broader level of international trends in policy and provision aimed at establishing inclusive learning environments, this study demonstrates the need for a common frame of reference around which the national and international conversations on educational systems can take place.

A longitudinal study of the intra-country variations in the provision of residential care for adult persons with an intellectual disability

BACKGROUND Small-scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched. METHOD The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10-year period and the extent of the intra-country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community-based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation. RESULTS Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10-year period and the number of new admissions to this form of provision remained high in certain areas. CONCLUSIONS The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.

Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland

Purpose The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

Irish persons with intellectual disability moving from family care to residential accommodation in a period of austerity

BACKGROUND Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. METHOD A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. RESULTS An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. CONCLUSIONS More people will have to continue living with their families and for longer if funding for new places remains curtailed.

Making numbers count: national datasets on intellectual disability

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 prot...