REPORT ON THE PERSON-CENTRED WING

by Brendan Broderick, CEO, Sisters of Charity of Jesus & Mary/Muiríosa Foundation Moore Abbey, Monasterevin, Co. Kildare

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As an organisation we have been struggling to put in place a faithful implementation of the principles of person-centred practice for the past five-six years. The initiatives which we ran with at the outset consisted of a regular programme of talks and seminars for groups of service users, staff and families, whose main focus was on the goal of ‘placing the idea in the imagination’. A US-based Canadian consultant, Michael Kendrick, was our main guide and touchstone during this phase of the work. These sessions spanned story.telling, show.casing exemplars from international settings, and a major emphasis on reflective practice. This initial planting.the.seeds phase was heavily reinforced by participation in a week-long symposium in North Carolina in May 2007, which profiled in detail the work of eight organisations who had steadfastly sustained a commitment to person-centred practice for a minimum period of fifteen years. This event was crucial in deepening our understanding of what was involved in faithfully implementing these values and principles.

By person-centred principles and values we mean:

1. Ensuring that the agenda everybody is working to is the agenda set by the person—not an agenda set by the service provider, nor by professionals with imposing credentials, nor an agenda set primarily by the person’s family (though paying meticulous attention to the family’s perspective is central);

2. Developing an agenda informed by a clear and appropriately ambitious vision of the life the person wants for him/herself. (We have been guided by the observation of John O’Brien and Connie Lyle.O’Brien that What people want is usually modest. When critics say we can’t afford choice, they have typically confounded what is important to people with what might be nice to have);

3. That the plans and arrangements made are based on an engagement with the person and their family that is full, considered and two-way. We are not passive participants, we do challenge and ‘push back’;

4. That the focus is relentlessly on building a life in the real everyday world, not within the parallel world of disability services;

5. That the arrangements put in place are individualised arrangements, based exclusively on what the person and their key supporters and advocates have chosen. There is a commitment to avoid all forms of group provision, however small. Our guiding principle is that ‘If it involves groups, if it involves centres, we haven’t got there yet’.

6. Meticulous care is taken to ensure that what is being built is both meaningful in the context of the person’s own goals and enhances how the person is profiled—ensuring that the supports and opportunities are aligned with the precepts of social role valorisation is core;

7. There is a clear recognition that what we are trying to build and support is not a version of a life frozen at a single point in time. It is an evolving open-ended life story. We recognise that we cannot predict or project the chapters that range far into the future.

While this introduces a good deal more uncertainty than what we have been used to promoting within traditional services, it is the uncertainty of growth, of possibility, of opportunity—of risk also. (While we are very clear that safety is a bottom-line, and one which requires our constant vigilance, safety is not the ultimate aspiration and cannot be the ultimate point of reference in helping to plan for a good life. Our mantra in this regard is Safety first, but not safety only.)

Notwithstanding the intensification of our educational and awareness-raising activities after the North Carolina event, we began to realise that while these inputs were undermining stakeholders’ faith in the traditional models and seeding a yearning to do things differently, they were not spontaneously translating into any level of significant change on the ground. At this stage, we became acutely conscious of the recognition that a vineyard is not a lettuce patch, i.e. significant levels of expertise, discernment and a resilient commitment to meticulous cultivation was going to be necessary. Person-centred services were not going to be hot-housed in pop-up fashion through a series of inspirational speakers and experts, or through the application of particular planning tools.

This awareness resulted in a more planned approach to developing our own internal examples of good practice. However, these initiatives were each undermined by the assumption that they could be run alongside our traditional services. There was an anticipation that senior and middle managers could straddle the parallel demands of keeping the wheels of the routine services turning while simultaneously seeding, scaffolding and nurturing into being the durable green shoots of an entirely different mindset and model. By the summer of 2009 we were forced to recognise the reality that we needed to carve out a dedicated management space and a dedicated resource base if our aspirations were to have any prospect of success. During the summer and autumn of 2009 we put in place, under the direction of Josephine Glackin (previously regional manager of our Laois/Offaly services), a group of six coordinators whose sole responsibility was to develop a Person-centred wing within the organisation. Taking our cue from the lettuce patch/vineyard parallel, we were very conscious that little by way of concrete product would be evident within the initial three-six months, that we would have to front-load a major investment in acquiring the core implementation competencies and in working with service users and their families to develop shared understandings and expectations. We were also acutely conscious of various jeopardies which needed to be avoided:

— working off an inadequately developed vision for the person;

— failing to listen deeply enough to the service user and family in developing with them the vision and set of personal safeguards;

— taking too strong a leadership and executive position in working things out, not paying enough attention to ensuring that all key stakeholders were on board and signed up;

— falling back on traditional centre-based and group-based arrangements as initial ‘holding’ measures;

— establishing an initial bridgehead of planning and support arrangements but failing to progressively extend and deepen this initial base;

— over-promising and under-delivering;

— paying inadequate attention to the dimension of social roles.

Person-centred practice

The person-centred wing has been running for the past 21 months. There are currently 26 service users involved with the wing, 5 of whom are in an early stage of engagement. Nine service users have been involved with the wing from the outset. Seven people have been supported to move into their own home with individualised supports (i.e. not grouped with other service users); 5 of these 7 previously resided in community group homes. Two individuals who had been living in a children’s community group home have been supported to return to their family home. Seven of the overall group of 26 are currently residing in community group homes—with the aim of securing individualised supports in their own home. (While the Person-centred wing will commence work with people who are currently in segregated, group arrangements, it is committed to develop opportunities and support arrangements that do not subsequently involve placing them in segregated, group arrangements.)

While much of the emphasis over the previous 21 months has been on supporting people to secure their own living base, there has also been a strong complementary focus on building more inclusive and socially-valued lifestyles and social profiles.

The major impact of the person-centred wing has been to secure much more fulfilling, more purposeful, going somewhere, lives. It is also resulting in more cost-effective arrangements—the direct-support costs of six of those currently living in their own homes is a fraction (typically less than 50%) of the direct-support costs associated with supporting them in group contexts. There are high costs linked to one of the seven who is being supported in her own home, although the costs that would be incurred in addressing her needs in a group context would be significantly higher than current costs, not to mention the massive quality-of-life costs that she, and those living with her, would incur.

Central to the success of the person-centred wing thus far has been week.long, quarterly sessions of implementation mentoring for the team by Hope Leet Dittmeier from Louisville, Kentucky. (Hope has been running a similar service in Louisville for a number of years.) An intensive programme focussed on vision-safeguarding and leadership development by Brian McGeough of PSM has also been of inestimable benefit in ensuring that the wing sets a high bar for itself.

Surveying the notes of the implementation mentoring sessions, among the most prominent lessons we have learned thus far are:

— ’Don’t rely too much on the plan. Plans often fall apart. Principles are more important than the plan’;

— ‘Failure and set-back are part of reality (failure from which people learn ultimately adds value)’;

— ‘Working with family is as important as working with the focal person’;

— ‘Workers without serviceland experience are better able to support people in more normalised ways’;

— ‘Have faith in the community around you. Work at getting more comfortable asking. We have underestimated ordinary people (those not connected to serviceland)—they are mostly open and welcoming. We are also getting more comfortable being uncomfortable.’

— ‘Be really clear about what the person-centred wing does not do: we do not rely on congregation as a method of supporting people; provide day services; provide group housing; provide service transport; service natural support our friends; provide activities solely for entertainment purposes.’

The learning insight which has had the most profound impact on how the Person-centred wing operates is the value of the discovery phase of the initial engagement with the person. We have been repeatedly struck at how this discovery phase has uncovered substantive and previously unknown information about strengths, preferences and positive possibilities. The discovery process is a very intentional one. We recognise that any attempts to compress or short-circuit this process will short-change the service user in the long-run (and often well before that). This discovery phase extends over the initial months of getting to know the person—it stands in stark contrast to the assumption that durable and value.adding life plans can be underpinned by a foundation of information gathering exercises and meetings compressed into a few weeks. Moreover, a recurring observation from coordinators is how limited the value of the information from standard multidisciplinary reports (the kind of reports regarded as the bedrock foundation of planning within the traditional model) in developing a fit-for-purpose vision and plan. In this regard, it is disturbing to note that the orientation to assessment of need embedded within the Disability Act perpetuates and reinforces an orientation to assessing need and potential likely to ill.serve us in striving to address the more progressive policy objectives emerging from the Department of Health and HSE.)

It is important to differentiate the role of coordinator and that of direct-support worker. The coordinator is centrally involved with the focal person during the initial engagement and discovery phase. This involves very significant face-to-face contact with the focal person, their family and wider networks. Once the core support needs have emerged, a separate cadre of direct.support workers are recruited. These workers are recruited to work with a designated focal person—not to work across the range of different focal persons within the wing. Each focal person and their family is centrally involved in the recruitment of their support workers. Typically these direct.support workers have very different backgrounds, experiences, and qualifications than the pool from which we generally recruit within traditional services. The majority of direct.support workers will have had limited, if any, association with disability services. Generally they will be recruited on a part-time basis, i.e. for a defined number of hours per week. The direction and management of these workers is the responsibility of the coordinator, working in close collaboration with the focal person and his/her family/supporters.

Where do we go from here? Our intention at the outset was that we would seal the numbers in the person-centred wing within the 25-30 range. This intention is based on the belief that the wing needs to be small enough for each person to be known in some level of detail by the person directing the wing. We do anticipate a fairly rapid expansion both in the number of persons seeking to be supported in this way and in our competence and capacity to provide such supports. From the very beginning we had been forewarned that the initial acquisition of competence and capacity would impress as painfully slow, but that once the initial cohort of persons were up and running we would find that we had grown the skill base to more quickly and more effectively put such arrangements in place for the follow.on generations. We would like to be in a position to open a second wing or cell in 8.9 months’ time—the individual coordinators within the wing have now acquired a very sophisticated skill base, one which should equip them to lead new cells.

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