Variations across Ireland in moving from congregated to community settings

by Roy McConkey, University of Ulster and Fionnola Kelly, Health Research Board

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The recently published report on congregated settings sets out a challenging agenda for the coming years. Internationally there is a consensus that small-scale, homely accommodation provides a better quality of life for persons with intellectual disability than do larger congregated settings or institutional provision (Kosma et al. 2009). Moreover, these more modern services generally offer better value-for-money (Mansell et al. 2007), they are in line with the aspirations of advocates (McConkey et al. 2005) (and are in accord with the International Declaration of Rights (United Nations 2007). Despite these persuasive arguments for divesting from congregated accommodation, the development of new styles of community-based provision seems to be further advanced in some countries than in others (Beadle-Brown et al. 2007), with Ireland lagging behind its European neighbours and other affluent nations. What is perhaps less appreciated is the variation that can exist within countries in the pace at which the move from congregated to community settings takes place. Surprisingly, this issue received scant attention by the review group on congregated settings, although it has major implication for the successful implementation of national policies.

The National Intellectual Disability Database (NIDD) managed by the Health Research Board on behalf of the Department of Health provides a unique tool for assessing changes in the intellectual disability service population over time. We identified from the database all the people living in some form of residential accommodation in 1999 and grouped them into congregated settings (mostly residential centres) and community-based accommodation (mostly group homes).

Over 7000 residents were recorded on the database, 64% of whom lived in congregated settings. A similar exercise was undertaken for the 2009 database. Over that ten year period, the total number of individuals in residential accommodation had increased by 700 persons to nearly 8000. Nationally the proportion in congregated settings had dropped to 52%, with a concomitant rise in the numbers and proportions of people living in community-based accommodation. Thus far, the story is in line with national policy aspirations that stretch back to 1990 (Department of Health 1990).

However, the change in the proportion of people living in congregated settings was not uniform across the country. In 1999, the health services were organised into eight health boards, roughly equating to a combination of county boundaries. Although by 2009 the health boards had been reorganised, we retained the old groupings in order to compare like.with-like. Figure 1 shows the reduction across the eight areas in the proportion of people living in congregated settings from 1999 to 2009, with the national average of an 11% decrease shown for comparison. By 2009, three areas actually had an increase in the proportion of people in congregated settings, whereas at the other extreme, two areas had decreases in excess of 30%.

So, what accounts for the variation in this reduction? Internationally the two main mechanisms for reducing institutional provision have been resettling people into community accommodation and reducing (prohibiting) admissions to congregated settings. The NIDD allowed us to test the extent to which these strategies were used by Irish health service planners. First, we were able to calculate the numbers of people who were living in congregated settings in 1999, but who by 2009 had moved to community-based accommodation. We could then compute this as a percentage of the total number of people in congregated settings in 1999, enabling comparisons to be made across areas. As the Figure shows, the percentage of people moving to community-based accommodation averaged around 10% in four areas, whereas in another four, the percentages were double or even triple that rate.

In terms of admissions, in 2009 we identified the people who were living in congregated settings, but who had not been there in 1999 (i.e. having resided elsewhere prior to that). This time we calculated this number as a percentage of all the people living in congregated settings in 2009 to give an indication of the proportion of recent admissions, i.e. people who had moved to congregated accommodation in the past 10 years. In six areas, around 30% of the residential population were recent admissions, but two areas had half this rate of admissions.

Taking all this information together, the areas that showed the largest drop in the proportions of people living in congregated settings were those which had the higher levels of resettlements and/or lower admission rates. Of course, there may well be other factors that contribute to this variation, although the usual one of lack of resources is unlikely to be a major explanation in this instance, as the decade under review witnessed an unprecedented level of investment into intellectual disability services. Rather, the explanation is more likely to be found in the policies and practices of service providers. It is worth remembering that within any area there will be a number of different providers—a total of 72 were identified in the congregated settings report.

These variations across counties are not peculiar to Ireland. They are found in Great Britain and even in smaller jurisdictions such as Northern Ireland. But that does not make them excusable. Two questions spring immediately to mind. What can providers in certain areas teach others about how best to manage a transfer from congregated settings, and are their achievements recognised and applauded? What are the mechanisms that will achieve transformation in areas that have been slow to do this over the last ten years and, if left to themselves, may continue to retain the status quo? The real test of national policies is their implementation locally and uniformly across the country, with its inevitable negotiations and compromises. However, these facts and figures should fuel that debate, and also provide a baseline against which progress can be assessed in another ten years.

Roy began his career in intellectual disability in 1970 at Manchester University. He moved to St Michael’s House Dublin in 1977 and then on to work with the Brothers of Charity in Scotland in 1988, before returning to Northern Ireland in 1997. In recent years he has maintained close contact with Irish services through his Visiting Professorship at Trinity College and his involvement with the Health Research Board, Genio Trust and the National Federation of Voluntary Bodies. A list of his publications is available at:  www.researchgate.net/profile/Roy_Mcconkey.

Fionnola Kelly works as a Research Officer for the Disability Databases Team in the Health Research Board, she has responsibility for the overall management of the National Intellectual Disability Database (NIDD). Fionnola has previously worked as a Data Analyst in the Economic and Social Research Institute (ESRI) where she analysed and reported on hospital inpatient data. She has also been employed by SPSS Ireland as a research consultant and SPSS trainer. Fionnola received her primary degree in Sociology and Psychology from Queens University Belfast and her MSc in Health Promotion from the University of Ulster (Jordanstown)

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