Late in 2007 the HSE established a national steering group to examine the area of people with intellectual, physical and sensory disabilities who reside in congregated settings. Prior to the establishment of the group, work had been done on this area by the National Disability Authority. Representations had been made to the HSE over several years from the National Federation of Voluntary Bodies and some discussions had also taken place involving the Department of Health with regard to the issue. Also of relevance is that Ireland had signed the UN Convention on the Rights of Persons with Disabilities, which clearly states in Article 19, that ‘people with disabilities should live in the community’.
The national committee was chaired by the HSE. On looking at the scale of the task, it was agreed that a full-time project manager was needed and late in December 2007, Christy Lynch, Chief Executive Officer of KARE, was seconded to take on the role of Project Manager. The committee were very clear from the outset that the approach to the task would be evidenced-based and recommendations coming from the working group would be based on international best practice. At the same time, it was also important that this was not solely an academic piece of work conducted behind a desk and it was agreed that the project manager would visit as many of the settings as possible, in order to meet residents and speak with management and frontline staff with regard to the issues and challenges they faced.
Early on in the project, it was evident that there is a huge amount of experience on the issue of ‘deinstitutionalisation’, and so, to avoid re-inventing the wheel, it was felt that we would invite some of the leaders in this area to a round-table which was hosted by the National Disability Authority. This proved to be extremely useful, with input from representatives from the experience in the United States, Norway and from the Tizard Centre in London (who had just completed a Europe-wide study on the issue). An early challenge for the group was to define what exactly is meant by ‘congregated settings’ and there was much discussion about what constituted a larger facility. On the one hand, the group were clear that we were not looking at smaller community group homes, even though there are those who would argue that these are, in fact, congregated settings. The group eventually decided that any facility with ten beds or more on the same site came within the scope of the project.
This included the de-designated units in some of the large psychiatric services around the country. It is important to note that the brief of the group was not to implement a closure programme. Rather, it was to identify the people concerned, where the places are, and to provide as much information as possible about the support needs of the individuals concerned and, of course, what we could learn from national and international best practice in terms of what the future alternative provision might look like. The report does, however, include a chapter on Proposed Implementation, because the then Minister made it clear that while it was not the brief of the group to actually carry out the implementation of the recommendations, we should give some thought to how this might be progressed.
The places and the people
When many of us hear words like ‘institutions’ or ‘large settings’, we conjure up images of old Victorian dilapidated and run-down buildings with large ward-type provision. While some of this does exist, in reality there are a huge range and variation in the type of physical facilities across the country—from one extreme of the very old, very run-down, completely inappropriate setting, to the other, which are brand-new, purpose-built campus-based facilities with all mod cons. During some of my visits, several of these had not even yet opened, but had recently been completed. This raises one of the key issues when looking at this project, because for the group reviewing experience in many jurisdictions, it was very clear that the measurement of success of this kind of strategy is not about whether people are living in more pleasant environments, rather it is about whether people are being active participants as citizens within their communities.
With regard to the people, the actual number of residents totalled 4099. Of these, 3802 were people with intellectual disabilities and 297 were people with physical or sensory disabilities. Clearly, the vast majority of the population living in these settings are people with intellectual disabilities. In terms of age, the largest group (69%) were aged in the 30-60 age group (18%, 30-39 years; 28%, 40-49 years; and 23%, 50-59 years).
The idea cannot be substantiated, therefore, that all of these people are extremely old and should be left to live out their lives in these settings. Most of the people have a lot of living to do and have, in the view of the committee, the right to receive the type of supports that will allow them to become fully active participating citizens in the community. In the course of the group’s deliberations, a significant amount of time was spent specifically looking at the issues of those individuals who have complex needs with significant medical issues, and the cohort of people with high levels of challenging behaviour. Having debated these issues and, importantly, having examined the evidence and experience internationally, the group concluded that all of these individuals could be supported in community settings once the appropriate supports were put in place. Advice from other jurisdictions where people have moved out of larger settings to community facilities was to ensure that, at the very outset of implementation, those with complex needs and challenging behaviours should be included in the groups to be moved. The rationale for this is two-fold. One reason is clearly that these individuals can challenge service providers and if they are not included in the early part of implementation, then providers will potentially not learn how the supports for these individuals need to be arranged. Secondly, if as has happened in some instances, it is decided to leave these particular individuals to the final stages of implementation, the result is that a large setting remains with only those people with the most complex needs. Again, those who have been down this road have advised that this is the wrong thing to do.
In visiting the various facilities around the country I was struck by the fact that for all of the people who I met in these larger settings, I had met people with similar support needs who are living in community settings. Yet some staff very strongly argued that ‘these people would not be suitable for community-based services’. It may be that the staff concerned had never worked in anything other than a larger campus-based setting and, therefore, the found it difficult to envisage how people with significant levels of challenging behaviour could be supported in a smaller more community-based facility. However, there are many examples (not just internationally, but indeed, here in Ireland) where these situations are being served quite successfully within the community. A standard question asked on all of our visits, particularly to staff who were providing direct support, was to describe the nature of the service. The answer we received most often was ‘basic care’. Many staff spoke of the fact that they found it extremely difficult to find time to spend with individuals or to take people out of the residential setting into the community on their own, because of the pressure and demands of work and the limitations in terms of numbers of staff available etc. I would like to put on record that what I saw, everywhere I went, was excellent care and staff who were working extremely hard and were very committed to the individuals whom they were supporting. It does beg the question, however, whether basic care is good enough for this group of citizens?
The group gathered data on staffing levels, details of which are outlined in the Report. The largest cohort of staff (39%) were qualified nurses, with the next group being care staff (35%). It should also be noted that medical/clinical staff (doctors, psychiatrists, therapists, psychologists etc.) accounted for, in total, 3% of the staff complement. Once again, the type of staff very much reflects the model of service, which is one of care, within many of the centres. It is also interesting to look at the low level of medical/clinical support, because often this is an argument for placing people in larger settings—on the basis that they will have better access to these services. I think it is clear, once again, that when you look at the data, this argument does not stand up.
I suppose the other burning question in terms of what the data has highlighted relates to costs. How much money was is in the system at the time of gathering the data in the project? The annual cost per capita (and it is important to note that this is an average), comes out at €106,000, of which 83% is made up of staff costs. The range, however, is significant—with the lowest per head being €37,394 and the highest being €231,575. At first reading, it might clearly seem that the reason for the wide range would be linked to the level of dependency of the service users. We completed a dependency rating scale on every individual covered by the project and, in fact, there is no statistical link between the level of dependency and the amount of funding in any given agency. Clearly, therefore, there are some agencies who will need additional financial support in order to deliver on moving people to appropriate community settings—for those significantly above the average of €106,000. Equally, I think there is a valid argument that we need to look closely at those services which are costing significantly more than €106,000, to ensure that they are offering value-for-money.
The Report concludes that all residents should move to a model of dispersed housing in the community and be provided with the individualised supports they need to become active citizens. It makes a total of 31 recommendations and argues for a radical shift in the way these individuals receive their support. It suggests that, in future, all housing should be provided under the auspices of the Department of the Environment, as would be the case for any other citizen who is not in a position to provide their own housing. In future, all clinical supports should be provided through the primary care strategy and that some members of the primary.care teams would have disability-specific training, in order to provide the expertise required (particularly for those with more complex needs). Agencies currently providing services would focus their efforts on the provision of individualised social supports. The working group are of the view that this shift, and all of these moves, could take place within a period of seven years. While some new funds will need to be made available for the transitioning period, ultimately, the money currently in the system could be used differently to support the new approach.
The Report was published earlier this summer and is available on the HSE website (www.hse.ie/eng/services/ Publications/services/Disability/timetomoveonfromcongrega tedsettings.pdf). The HSE have already drafted a high-level implementation plan, with a view to starting to action the recommendations in the Report.