The Alvernia unit, housed in a wing of the St Fintan’s mental health facility at Portlaoise, offered a 24/7 support to a group of individuals with intellectual disability since the early-to-mid 1980s. At that time a decision was made to ‘de-designate’ the unit (i.e. to remove it from the regulatory framework of mental health legislation) and to manage it as if it were a community-based facility. Persons with intellectual disability who had been distributed across various wards in the psychiatric hospital were brought together in Alvernia. Notwithstanding the best efforts of staff to individualise and personalise support arrangements, the context was inescapably group-based and institutional in character.
In July 2010, the Congregated Settings Report was published,recommending the closure of all congregate settings (defined as those in which ten or more people live together). At this time there were 28 people living in Alvernia. A collaborative initiative between HSE Midlands and Sisters of Charity of Jesus & Mary/Muiríosa Foundation, supported by Genio funding, was developed with a view to relaunching people’s lives in more personalised community settings. Animating this initiative was the positive vision of the alternative life that people could be supported to build, rather than a negative, tick-the-box motivation of ‘closing the institution’. There was a deep recognition that the institutional context presented insurmountable obstacles to developing a way of supporting people that would give them a realistic shot at a life worth living.
The main disadvantages flowing from the institutional context were:
1. Living in a context where the organisational and institutional needs dominate the agenda and shape the focus and rhythms of the day to a degree that overwhelms person-centred initiatives. While there were instances of good individualised work, these were generally promoted off-radar, or against the grain of how the institute typically operated, which made it very difficult to sustain commitment to person-centred initiatives and practices.
2. People are managed in groups throughout the day. This inevitably leads to individuals’ lives being geared to a lowest common denominator factor. The default position becomes one of what works best for the institution to function, rather than how do we optimise arrangements to best address the very particular and diverse needs of each individual.
One particularly adverse consequence of the group-managed situation is that individuals regularly have the emotional tone of their lives determined by the most distressed and distressing person with whom they are grouped.
3. Individuals experience a major loss of control over both the direction of their lives and their day-to-day experience.
4. People quickly adapt to living in this very different kind of world. Some become distressed and protest. The majority display a form of resignation. Some retreat into themselves to a degree bordering on a kind of shut down. Many seek to manage by becoming highly compliant and approval seeking, acutely sensitised to staff cues and expectations.
5. Routine and predictability are cardinal features of congregate environments. The narrowness and predictability of the ensuing lifestyle finds its complement in a narrowness and predictability of response by the service user caught up in the system. In the segregated, closed-circuit world of the institution, people typically only manifest a limited and impoverished expression of who they really are, or potentially can become. Deprived of the oxygen of possibility and spontaneous opportunity, all but the most resourceful become a shadow version of their deeper-lying possibilities.
Ongoing exposure to this hollowed out, narrow version of the person can lead staff to conclude that they know the person very well. Typically this activates a self-confirming chain of assumptions: evidence of the service user’s accommodation to the untypical and impoverished life within the institution becomes a basis for concluding that they would have little interest in or capacity for exploring alternative horizons and possibilities. Too often this can translate into a ‘what’s the point?’ fatalism.
The vision underpinning this initiative is a going somewhere life embedded in neighbourhood and community. The gap between where people are currently lodged and the ultimate destination to which we aspire is immense. Even though we had a good conceptual knowledge of the cumulative impact of institutional life, we had under-estimated the full effects of this experience on the individuals’ capacity to identify interests, exercise even simple decision-making, aspire to horizons beyond their immediate experience of the world. Even in their physical presentation, most service users appeared as if they were in their 70s, rather than their 50s. Physical health—activity levels, mobility issues, obesity—was very compromised. Diet, nutrition and medication levels also needed to be addressed. We had naively assumed that after an initial period of two-three months we could fast-track to address more ambitious lifestyle and inclusion issues. Our actual experience has been that enabling people to establish a home has taken longer than we thought. New experiences have to be introduced in a carefully phased manner. Moving quickly and spontaneously from this new base has not been as straightforward or automatic as we had assumed.
One assumption has been strongly confirmed, however: the domestic-scale house in the community is a much better context in which to get to know somebody. It also offers a more productive platform for launching a meaningful and fulfilling lifestyle. Challenges remain in breaking out of the closed-circuit, self-restricting patterns which many seek to reintroduce in these new arrangements. Three months after the move we recognise that we have now to commit to a very intentional investment in a discovery-based approach to getting to know people more fully and more deeply. This involves introducing people to new experiences and places, and paying close and mindful attention to how they react. Trying things on for size, and other forms of trial-and-error learning, will feature prominently. It will involve both staff and service users moving beyond our comfort zone.
Some of the people who have been quickest to adapt and flourish in the more personalised settings are those who were seen as being most in need of the scaffolding and security provided by the institution. Among this group were some about whom staff members had harboured anxieties that the move might trigger a sharp deterioration in physical and mental health.
The assessments conducted on people in the institutional context have been a poor, often misleading, guide to a) how people would react in these new arrangement, and b) what level of supports they would require. This has posed a particular challenge in making resource-allocation decisions. Some require less support than the detailed assessments had identified. Others require significantly more.
Of the 14 people who have transferred to the MuirIosa Foundation,
— 5 are currently living in a house with three other residents;
— 3 reside in houses with two other residents;
— 5 reside in houses with one other resident; and
— 1 resides in a single-person arrangement.
Our preference would have been to install an individualised arrangement for each person. Funding and other capacity constraints have impeded our ability to realise this aspiration. In forming the groupings that currently apply, we sought to honour the following criteria (although they do not always align conveniently with one another):
1. Preserving established friendships. (The evidence of how people have reacted to one another following the transfer does not always confirm the friendship patterns that were described in the institutional context);
2. Grouping together those with intensive support needs in order to optimise the cost-effectiveness and efficiency of resource allocation;
3. Moving people back to, or at least closer to, their area of origin;
4. Avoiding evident or likely incompatibility between people living in the same house.
What does this tell us about how we might implement the Congregated Settings recommendations?
We do not need to wait until the national implementation group has worked out all the details of its planning and secured whatever level of additional resources it believes necessary before taking local action. However, such local action is not without risk. Three months in, we are certainly spending more money on bedding down the transfer. It is currently costing us about 30% more than the average funding available (€85,000 per person to cover 24/7 supports). We did anticipate that it would cost more during the initial year, particularly during the first six months, than it would cost during the second year and beyond. This represented a calculated risk on our part, a risk which hopefully will not become an ongoing liability. (If the challenges of adequately supporting people in the current configuration of small, personal arrangements are of the magnitude we are currently experiencing, what does this say about the possibility of even beginning to address their needs in a congregate setting?)
Independent review of our current situation may validly diagnose inadequate planning. Alternatively, it may reflect a faith in a level of planning precision and foreseeability which is more in the realm of illusion than reality. A very significant level of information-gathering and profiling of need (involving the perspectives of families, frontline staff and multidisciplinary professionals) extended over many months before the transfer. The more fundamental issue may perhaps be the unreliability of planning for supporting people in these advantageous settings on the basis of how people manifested in the institutional setting. We were conscious of this from the outset and always operated on the assumption that the initial transfer settings to which we would move people were unlikely to be the ultimate settings in which they would be supported. They primarily constitute a new ground within which to discern what next needs to happen for the individuals. Some might construe this level of provisionality and open-endedness as deficient planning. We view uncertainty, provisionality and a what’s needed right now? orientation as the cardinal features of a going somewhere life.
The complement of the what’s needed right now? mindset is the orientation to provide a just-enough level of support. In practice, this means that the resources allocated will dynamically track the unfolding circumstances—additional resources may need to be invested, at other times resources may be scaled back. This introduces a strong focus on cost-effectiveness, frugality, and a recognition that over-committing resources to a situation introduces unjustifiable opportunity costs for those drawing on the same resource base. This contrasts sharply with the approach to resource allocation which has been more typical in the disability sector, namely allocating resources on a to be sure, to be sure basis (which can often relate as much to addressing staff needs for reassurance and comfort as the actual support requirements of the service user).
Mistakes will occur in this process. We have already made mistakes in the formation of particular groups and locations. These became evident very quickly and advertised the imperative to address them. Perhaps such errors and incompatibilites pressed less insistently for resolution in the context of the previous congregate setting?
Has it been worth it?
We are at a very early stage in implementing many aspects of our ambitions for this initiative. This applies particularly to connecting people to social networks of ordinary folk, building inclusive lifestyles, and helping them find meaningful roles in their local communities. To date we have been largely preoccupied with helping people adjust to the transition and building a sense of home. However, even within three months for many individuals, huge benefits are already evident. It is now apparent that many people spent much of their time in the institutional context living in a state of hyper-vigilance and alarm. The behavioural manifestations of this mode of hyper-arousal have reduced very significantly. In some cases this has allowed medication levels to be reduced. Some who, on the basis of previous reports, were inclined to self-isolate are displaying emerging capacities for interaction and relationship. Many are already revelling in having their own space, their own possessions, their own foothold in the ordinary world.