CRUcial Times Issue 30 - Editorial

editorial - Person-Centred Approaches: Pursuing the Means to an End

The large injection of funds that was announced in the recent state budget could be good news for many in the disability sector in Queensland. However it will also challenge the system’s capacity to offer personalised responses to the many individuals who receive funding. More money may actually cement routinised menu-driven ways of serving people. This edition of CRUcial Times explores a counter to these inflexible service orientations through the explication of personalised approaches to support.

Personalised approaches are not new, nor are they unique to the disability sector. For example, in the 1940’s, the field of clinical psychology and counselling embraced personalised approaches through the work of Carl Rogers. These approaches, which have relevance to responses to people with disabilities today, are underpinned by the assumption that individuals can grow and develop in terms of managing their own lives. They assume an inherent desire in all individuals to reach their full potential.

Within the disability sector the development of the theories of Normalisation and Social Role Valorisation provided people with systematic ways of understanding the impact of services, especially those that relied on congregation and segregation, on the lives of people with disabilities. As consciousness of the limits of many models of service grew, so too did the desire to respond in different ways that would lead to people with disabilities having access to the ordinary and valued things in life and that would change society’s perception of people.

An additional compelling force in the adoption of personalised approaches has originated in the people most affected by human services: the individual with a disability and their family. It has been fuelled by people’s desire to retain control of their own lives and to solve their own problems. Many of the articles in this edition of CRUcial Times explore the deeper
nature of the relationship between the parties in a helping relationship. They speak to the ethic of person-centredness which brings a stance to the relationship that is both humbling and focusing. As these writers acknowledge, person-centredness is not merely the application of certain knowledge and skills, nor the use of clever techniques and tools; it is a journey of the heart and spirit.

This journey calls forth certain personal qualities. Person-centredness rests on unconditional positive regard and empathic understanding. It is therefore incumbent on the paid worker to bring genuineness to the relationship, rather than a distant professional façade. A parallel belief is that the self-regard and autonomy experienced by the individual and the family should be protected in helping relationships. Another important quality is the paid worker’s commitment to humility and an abdication of the pursuit of control or authority over other people, in favour of sharing power and control.

Person-centredness is facilitated in a number of ways. For example, the structure of the human service can encourage a more personalised response by limiting the number of layers between those who are served and the organisational decision makers. The use of conditional delegated authority makes it possible for a service to meet its accountability requirements to a funder, while still transferring significant levels of power to individuals and families, within pre-negotiated parameters.

The nature of the employment arrangement between the individual and the worker can also facilitate a person-centred focus. For example, when the person or family is in an employing role, then it is more likely that the person with a disability and their family remains the focal point of all support arrangements. Who makes decisions will also influence the degree of person-centred focus.

The family or person being served may have responsibility for a range of decisions, from guiding and influencing the direct support arrangements to deciding the direction of the entire service. These types of arrangements can be contrasted with the experiences of many individuals with disabilities and families who are actually excluded by service processes, despite rhetoric of ‘respect and dignity’. Major decisions about how the service is delivered and the direction of the service can bar the participation of individuals and families in their own particular service arrangements. High levels of bureaucracy, a reliance on paperwork and the use of exclusionary language – especially acronyms and words peculiar to service-land – also result in the rejection of the people the service is intended to serve. The experience of the excluded individual or family is one of helplessness and disempowerment. Even if it is their life that is being discussed and coordinated, it becomes owned by the service and ultimately the service system. Individuals and families become disqualified from shaping their support arrangements and influencing the direction of their own lives.

The lack of person-centred approaches can be reflected in the failure to recognise limitations of the system in meeting people’s needs. This can lead not only to a misinterpretation of the service recipient’s needs, but also the needs of the staff. For example, one service that identifies ‘staff communication skills’ as its key training need allows staff a mere twenty minutes to assess and deal with the needs of people with intellectual disabilities. Similarly another service claiming a person-centred approach rotates different staff through people’s homes once every two weeks ‘to ensure clients do not become dependent upon staff’. These are system responses that prevent personalised approaches.

Working in a person-centred or family-centred way is a way of working from the ground up, not from the top down. This challenges the service to not rely on recipes. This can feel like working in ambiguity in an absence of certainty and black-and-white answers. It negates the possibility of one service model, or easy steps, or a check-list for service responses. It means letting go of the certainty of being right, or the comfort of well-trodden paths. Therefore workers should not try to find, for example, a list of workplaces that employ people with disability or clubs that include people with disabilities. For example, one worker revealed to us that she had never met any of the people she had been assigned to, and had no idea what their interests were ‘but if I can get a list of workplaces, then I can slot people in’. Person-centredness requires starting with the person, not the service. It means starting with what is desirable for the person and their family, not with what is currently available or possible for the service.

Responding in a person- or family-centred way is more challenging for a service than offering a fixed menu of responses. For example, from a service point of view, running an institution is much easier than responding to a range of people in multitudinous ways. There is a fixed environment, and a fixed number of staff with fixed shift arrangements and with fixed things to do. Likewise, minimising the participation of service recipients in the running of a service creates the illusion of harmony and predictability. In the current service environment other agendas, such as economic efficiency, ease and industrial matters take priority and trump the interests of the individual.

Personalised approaches are a counter to such technocracy. They are a counter to professionalism and the expert model, although the skills of the paid professional are still important. Person-centred approaches require that services truly appreciate the real identity of each individual, that resources are utilised in flexible ways, that forms of assistance are personalised in community settings and that they are committed to evolving the relationship with the individual and the family as circumstances change. Central to all of these is negotiation of the relationship between server and served, and of the ways that a good life will be pursued. Personalised approaches also require that each individual has access to social resources: unpaid relationships, membership of community through valued roles, influence over their own lives, and the presence of a range of people committed to understanding the person’s well-being. Person-centred approaches are a means, not an end: a rich and meaningful life in the community is the desirable outcome.