In what is seen as an ongoing effort to improve ‘quality’ and reflect a more modern approach to service provision, many of us in services are striving to become person-centred. The way this concept has been interpreted and applied seems to be variable or selective but few services fail to make reference to it in their mission and value statements. Indeed some services claim that their mission is accomplished and that their services are already provided in a person-centred way.
Without refuting the claims made by such services, this short article will consider why we are (or should be) finding it extremely difficult to become truly person-centred and some of the traps into which we appear to fall. We made need to carefully take stock of how far we have actually come in what is, if nothing else, a sincere attempt to do things better.
What does person centredness entail?
Three essential aspects of person-centredness can be identified, although there are many more.
Firstly, a fundamental test of true person-centredness within a service is the extent to which transfer of power has occurred from the service system to those served. This implies a culture in which those served are seen as directors rather than recipients, players rather than spectators. It is, in essence, about the sincere adoption of a person-centred ethic and demands that we apply, rather than recite, our values.
A second feature of person-centredness is the extent to which services have supported people into valued social roles and the degree to which the client / professional role barriers have been breached. What roles are implicitly or explicitly assigned to the parties in the relationship? How are those served valued, viewed and—even—described?
Thirdly, person-centredness entails a sincere, sustained and authentic commitment to individual people’s well-being and interests in the very broadest sense. Unfortunately, there exists a widely held misconception that we will become person-centred, not by applying our values or attending to individual interests, but by the wholesale application of certain planning methodologies. In reality we could be person-centred without plans—and plans, however well intentioned, do not make us person-centred. It seems to be the case that many services are devoting their energy to person. centred planning, with much less attention being given to the real business of transferring ownership and control to those whom they serve.
This misconception is compounded and reinforced by, amongst other targets, HSE ‘performance indicators’ which tell us nothing about person-centred practice, but only about the bald statistics of how many plans have been produced.
Perhaps the reason why services seem to have taken the ‘planning route’ lies in the view that it is easier to adopt a technology than is it is to change a culture. We seem much more adept at devising systems, policies and procedures than we are at adopting new ways of thinking and acting. The concept of ‘accountability’ seems to fuel a need for easily measurable statistics, and ‘productivity’ while time spent working on ‘ideas’ or ‘new ways of working’ takes a far lower priority. It is worth considering that if we became truly person-centred the need for formalised planning might very well disappear.
The problem of design
One of the many simple definitions in the lexicon of ‘quality’ is that the quality of a thing may be measured by the degree to which it is fitted to its purpose. We need to remind ourselves that, for many of us, in asking our services to be person-centred we are expecting them to achieve something that they were never designed to do in the first place.
The services in which many of us work came into existence specifically to take people out of their existing communities. Many services developed as focal points for what was seen as largely a homogenous group of people who were viewed as requiring ‘treatment’ which could only be provided by certain specialised ‘professionals’ and in isolation from mainstream society. These service’ raison d’etre was segregation and it is such designed and built-in segregation that we are now in the process of trying to dismantle. It should be no surprise that this has proven to be challenging.
As a consequence of historically segregating service design and ethos, an individual’s identity was unlikely to extend beyond the presence of certain clinical conditions and the ‘level’ of one’s perceived disability, etc. For many the huge challenge remains the recovery of this lost identity.
The historical legacy
It is instructive to consider how the relict terminology occasionally used within services reflects their origins and stage of development (e.g. ‘admission’, ‘discharge’, ‘absconding’). The so-called medical model has left us with organisational structures and systems that do little to further the cause of person-centredness. Hierarchical structures, professionalised roles and patterns of working remain largely unchanged. In some cases, a view persists that people with disabilities remain forever bound to a need for institutionalised medical care, which is rarely if ever the case.
Of greater concern, and at the heart of being person-centred, are the very poor levels of real empowerment enjoyed by most people. Decision making is still very largely in the hands of the service system rather than those served and few have an influence over the major decisions which affect their lives. This may well be the legacy of the ‘patient’ role who received, rather than controlled, the service that was on offer.
In a similar way there is still a tendency to focus on people’s ‘differences’, when for many their overriding need and demand is to have ordinary lives, in ordinary places with ordinary people. We still focus on the ‘special needs’ of people rather than the common needs which we all share.
Professional vested interests as well as outdated views of disabled people were also inherited from the medical model. Again they form a barrier to the real change needed to become Person-centred. This is not to say that on occasions we all don’t need ‘specialists’, but what qualifications are really required to be someone’s friend, to get to know them, to respect them and to share with them the experiences of a full life?
For some of us our other historical legacy is the negative and stigmatising view of disability perpetuated by the religious bodies who originally provided many of our existing services. Whilst their work was of enormous and enduring value, the devaluing images of unfortunate eternal children requiring care and protection were reinforced. Again, in order to become person-centred we are challenged to revise this view.
Adopting a ‘social model’
Most services claim to have rejected the medical model in favour of a social model of disability. Although we may have changed our model, we need to be clear how far we have given life to the changes that the model should imply. Some examples exist where we don’t seem to quite understand either how far we have got or where we should be going.
Firstly, there is tendency to equate de-institutionalisation and community living with both person-centredness and evidence of the application of a social view of disability. The reality is that for many people, their lives remain largely segregated and they are apart from mainstream society and normal patterns of daily living. If you still attend a ‘day centre’ and live with other disabled people, what has really changed apart from your address? If we are adopting a social model, why are people still being moved into group homes? We may have removed some of the barriers to inclusion but this must be viewed as work in progress.
Secondly, most people remain supported by ‘rented strangers’ and the involvement of ‘natural supports’ remains largely unexplored. People are surrounded by staff, and those often described as their ‘friends’ tend to be housemates allocated by the service provider. Again there is little evidence here that we have breached the barriers.
We may need to consider that perhaps it is too early to make real claims that a social model has been successfully applied in advance of the real societal changes necessary to bring this about. A more authentic appraisal of how far we have actually come would keep us focused on the challenges yet to be faced.
Organisational and legislative frameworks
Unfortunately, some of the highest barriers to becoming Person-centred are located outside the control of individual service providers. Paradoxically, in some cases, it is the funding mechanisms used by the same controlling bodies who require us to become person-centred, which may actually stand in the way of this achievement.
Aside from the obvious issue of under-funding; inflexibility and a restrictive range of ‘packages’ form major obstacles to being person-centred. Similarly, although the Health Service Executive may claim to assess individual need, what actually exists tends to be a ‘foyer’ system where individuals are matched to options rather than individualised options being designed based on real need. Evidence of a real understanding of Person-centredness and its implications would be helpful here.
Questions we may need to ask
In order to become more authentically person-centred it may be instructive if services were to consider the following five simple questions:
1) Do we genuinely understand the implications of being
person-centred and applying a social model of disability?
2) Is there a gap between our claims to be person-centred and
our actual practice performance?
3) To what extent are service users involved in making the
decisions which affect their lives?
4) How do the lives of our service users compare to other, non-
disabled, people of the same age and gender? and
5) Is there a balance between the energy we devote to planning
and the energy we devote to changing our culture?
Only by such honest self-appraisal will we keep faith with those we claim to serve.