At Sense we have always taken pride in providing deafblind people a specialist and individually-tailored service. Now we are taking that approach one step further and introducing ‘person centred planning’ to enable people to live the life they want. Hilary Todd reports on how this evolution in practice can produce a revolution in people’s lifestyles.

It’s Monday morning and Paul and Sarah have finished hoovering and dusting their three-bedroom house and are relaxing with a fish and chip lunch in the TV room. “We are very happy in our new house,” signs Paul; “Lucky Sarah, lucky Paul.” The very ordinariness of the scene belies the extraordinary processes that enabled Paul and Sarah, who are good friends, to select and move to this house. It is not a Sense group home, but a housing association property where Paul and Sarah are the tenants and where Sense provides a rota of five staff to support them. Their move to their new home was the outcome of ‘person centred planning’, a subtly different way of supporting deafblind people to enjoy the lifestyle of their choice and to realise their own ambitions.

What is person-centred planning?

Put simply, person-centred planning (PCP) is a means to shape a service to an individual rather than slotting an individual into whatever service an agency provides. PCP has been defined as “A way of helping people who want to make some changes in their life, an empowering approach that enables people to plan their future and organise the support and services they need to do so. PCP seeks to mirror how ‘ordinary’ people make their plans.(1)”

But hasn’t Sense always been at the forefront of empowering disabled people, providing support to meet very individual needs? The movers and shakers behind this new approach acknowledge that Sense has always provided a quality, individual service but, as Virginia von Malachowski put it, “We all thought we were putting the individual first, but the more we thought about it, the more we realised we weren’t.” “We tended to be paper-driven,” admits Jenny Hardy, a General Manager in Sense South West and member of the Steering Group introducing PCP across Sense; “We used the same tools and care planning for everyone. We planned for people without listening or involving them in decision making.” David Morris, an Education Co-ordinator with Sense North agrees; “We made informed choices on people’s behalf, so there’s control there and it was hard to know how to move on from that. PCP represents a subtle shift in ideology which helps us to see the potential in the people we support.”

Supporting people differently

The ideology at the heart of PCP is critical and at its most basic is reflected in changing terminology. “Reflecting on how to support people differently, we realised that the words we use are important,” says Virginia. “We used to talk about ‘service users’, which puts the service first and the person second. If, instead, we refer to ‘a deafblind person we support’, or ‘Jim/Mary, whom we support’, it makes a subtle but important difference to the way we think about them.” Jenny Hardy agrees: “The words matter enormously because they indicate how we value the people we support”.

Understanding and respecting people’s choices are fundamental to the ideology. “PCP is based on the belief that everyone can tell us at least something about what is important and of value in their lives, whether or not they are using a formal communication system,” says Lucy Mackintosh, former Outreach Trainer and Consultant at Sense South East. “Another key principle is that what an individual tells you should profoundly influence what you do to support them.”

“Earlier approaches often included lots of goal setting that were not necessarily relevant to the needs of the individual,” Lucy says. Goals for individuals should not be imposed but should flow from what the individual wants to achieve. For example, someone likes visiting his friend along the road and wants to do this whenever he likes. However, his road sense isn’t brilliant so he has to be accompanied by a staff member, whose time for this is limited. The answer may be to give him training to use that particular section of road, rather than giving him mobility training at the day service, because that may help him to achieve his goal of seeing his friend more often.”

Understanding choice, the challenge for staff

The ideology throws up immediate challenges for Sense staff, how do the deafblind people we work with understand the concept of lifestyle choice and how do they communicate their preferences? “It can be very difficult for profoundly disabled people to understand and exercise choice,” says Jenny Hardy. “Some people, especially those who have come from long-stay hospitals, have had every decision made for them and need a great deal of support to understand and make a choice. For example, one person always wants to holiday at Center Parcs, but is this a real choice when he has never been anywhere else and can’t assess the alternatives?”

Communication is at the heart of the challenge, and though Sense staff are immensely skilled at finding ways to communicate with deafblind people, it is quite another skill to ‘listen’ and understand what someone is telling them. People don’t always mean what they seem to be saying. When manager Andrew Anderson and his team were supporting Paul and Sarah to move to their new home, it involved a prolonged process of getting beyond the stated aspirations: “We had to find out whether it was a real choice because we all fantasise about what we’d like in life. When someone says they want to live in a flat, for example, does it really mean that or does it mean, ‘I don’t like living here.’ When we established that Paul and Sarah’s wish to move house was genuine, we then had to introduce unfamiliar concepts, such as types of housing. We showed them videos of different types of housing, then, when we narrowed it down, we took them to see various properties and supported them to choose one. To help them decide how to decorate and furnish it, we used lots of visual aids such as catalogues so they could choose colours and so on. Paul and especially Sarah needed lots of support to make those choices, but the outcome has been to give them real control over their lives.”

For those with no communication at all, the only starting point may be close observation of what people seem to enjoy and what they dislike. David Morris reflects on the work done with one woman who has only limited communication skills. “We realised that her only interest was in being in the kitchen, where the major attraction seemed to be that the radio was always on. So we established that she liked music and got her some tapes, but we then realised that staff only offered her the choice of two tapes. Now we have given her a radio of her own and we are teaching her to use the switch so she can have music whenever she wants it.” Planning a lifestyle that makes sense to an individual involves a multiplicity of small steps such as this.

How does PCP work?

The key feature of PCP is a flexible planning framework and tools that enable deafblind people to contribute meaningfully to the review and planning process. Not everyone is as able as Paul, Sarah and Michael, all of whom can grasp ideas and communicate their wishes and preferences, so it takes immense skill on the part of staff to engage some people in the planning process or to represent ‘their’ views.

That is why the new framework begins with issues that may not have been considered before, such as where review meetings should be held to make the individual feel most comfortable. “It may be that someone is more relaxed, and will contribute more, in their own room or in the coffee shop than in an office,” says Jenny Hardy. “One person was always very stressed by review meetings so we devised a simple questionnaire, enabling him to express his wishes to a support worker, so that he didn’t have to attend.”

Who else should be invited to the review process is itself a key issue. The preferred option is to involve not just staff but also others who know the individual concerned, such as family members, friends and other regular contacts (sometimes known as a ‘circle of support’), to add other voices and insights to the review process. “When people can’t easily communicate their own wishes, this is a much more egalitarian and inclusive way of working,” says Barbara McIntosh.

How staff establish what people want involves a structured process of pooling knowledge, which may start with what they do and do not like. “With someone with severe learning difficulties, it took weeks of patient work to draw up a very short list of what he liked and didn’t like, but this list represented a real achievement for him and his support worker,” Jenny Hardy observes. A final plan is drawn up which takes in a range of issues, such as education, home, relationships, lifestyle, to give a rounded and medium-term view of how the service should be supporting each individual.

Dilemmas

Helping people to achieve personal goals is not without dilemmas for staff and for Sense more broadly. There are significant resource issues, such as flexible staff rotas that can cater for querky or out of hours activities. “Someone may want to go swimming every day, for example, says Asun Snow, General manager at Sense North, “But we may only be able to support that twice a week.” Training staff in PCP will also require resources, not least because staff turnover is high in some areas, while many staff also feel that trained ‘facilitators’ are needed to support the new-style planning procedures.

The logic of personal plans, however, may pose other dilemmas. What if someone wants a ‘sex, drugs and rock ‘ roll’ lifestyle or to take up activity that’s dangerous or anti-social? “In theory we would ‘approve’ any lifestyle choice,” says Asun, “But of course you can’t allow a lifestyle that conflicts with other people’s choices or which goes against our ‘duty of care’. So if an individual does not want to take a bath, for example, we would try to understand why (have they had a troubling experience of being bathed, or an accident in the bath?) and work through that, while trying to explain that being smelly may lose you friends!” Risk assessment is always part of the process and not just physical risk: “ We don’t want to fail if we are supporting someone who is making a change of lifestyle,” as Andrew Anderson says. In Barbara McIntosh’s experience however, most people’s free choices are pretty ordinary, 60 per cent of one large group of learning disabled people really wanted a job.

Is PCP making a difference?

As some of the personal stories here show, PCP is opening new doors for some of the people Sense works with. With others, it is less clear whether it is PCP that is delivering benefit or simply the skill that Sense invests in all its people. When Ellen arrived at Sense North with no way of communicating and challenging behaviour that included self-harm, the first priority was to teach her a means to communicate. Now, with an ability to use objects of reference and therefore some way of predicting what will happen next, Ellen’s behaviour is much less challenging. She is learning that some things take time and is beginning to enjoy activities, such as going out by car, that previously distressed her. “We will never really know whether PCP helped us to a different outcome, but PCP certainly changes the way staff think about people and what they should be aiming for,” says David Morris. In Asun Snow’s view, “This is how we should work – it’s our job.”

Michael’s new life

Michael is a young man who moved to Sense’s care in Margate, where he had been at school. Using the new planning process, staff discovered that Michael is Jewish and his great wish was to be part of the Jewish community in the town. Manager Andrew Anderson and his team contacted the local rabbi to discuss how Michael could be supported in his wish. “The rabbi was wonderful,” says Andrew; “He trained our staff in Jewish observance in Michael’s home and allowed a support worker to accompany Michael to synagogue. Now Michael is met by a young Jewish group when he arrives, so he’s much more independent.” Michael has now indicated that he wants a Jewish girlfriend so Andrew’s next challenge is to be a match-maker! “PCP means exploring the options to see if what the individual wants is practical; we don’t rule anything out,” says Andrew. As Lucy Mackintosh says, “It would be patronising to assume that disabled people should always be protected against disappointment”.

30 years of valuing people

Person centred planning is the culmination of almost 30 years of experiment, discussion and research. It began in the USA and Canada in the early 1970s as part of a move to ‘normalisation’ when long-stay institutions for disabled people began to be closed down. It reached the UK in the late 1970s. Initially developed to support people with learning disabilities, PCP has since influenced work with other groups of disabled people. It is not a single technique but a ‘family’ of approaches that, collectively, seek to give disabled people control over their own lives and ensure that they are respected and valued.

Now, PCP has become a critical plank in the Government’s policy. Following the publication of the White Paper, Valuing People, all social services departments and other care agencies were invited to draw up plans in April/May 2002 showing how they would introduce PCP.

Despite official support, some aspects of practice have not been resolved. PCP may conflict with the regulations imposed on care providers, for example, the new care standards. For example, one deafblind man who was always awake at 4am to watch the milkman at work was eventually enabled to go out with the milkman on his rounds, an activity which gave him immense pleasure. Yet the care standards very firmly state that no one with learning disabilities can be supervised by people who are untrained or have not been police checked. This restriction squeezes many people out of the frame who have something to contribute to the quality of life of disabled people. As Barbara McIntosh says, “It is not clear how this issue will be resolved. There are tensions in balancing protection and freedom of choice, but we have to be practical. No-one can have a risk-free life.”

Taking root in Sense

Virginia von Malachowski, who is Assistant Divisional Director for Children and Adults Services, is taking the lead on PCP, ably supported by an enthusiastic Steering Group drawn from every region. “We began three years ago, with the support of Barbara McIntosh from Kings College, London, first to educate ourselves about PCP, then to devise an action plan to put the approach into practice nationally,” says Virginia. PCP is gradually being extended across Sense and a Toolkit will be issued shortly to support staff awareness and training. “Some staff still need to be convinced,” says Jenny Hardy. “But others who have tried it not only see the benefits for the people they work with, they feel it actually empowers them too, because they feel really involved and valued.”

An adviser’s view

Barbara McIntosh, from the Institute of Applied Health and Social Policy at Kings College, London, has advised many agencies, including Sense, on how to introduce person centred planning. Her expertise is in the field of learning disability and she says it was ‘very stretching’ to work with Sense: “Staff need immense skills because deafblindness poses unique challenges, how do people communicate their needs and preferences? On the other hand, Sense also has some great advantages. First, its ‘education culture’ recognises that everyone has a capacity to learn throughout life. And, because everyone Sense works with has a unique and sometimes idiosyncratic way to communicate, Sense has been forced to be person-centred in much of its work.”

“Person centre planning does however represent a culture shift for most agencies, putting the individual first means that nothing is excluded, which can be very difficult for services. One agency I worked with had an autistic client whose life goal was to be an airline pilot. Clearly this was unrealistic, but the service had to respond somehow. His support worker decided to take him to Heathrow for an afternoon each week to find out what it was about being a pilot that really interested him – was it flying, the planes, the uniforms or what? After weeks of observing him, she discovered that he was most fascinated by the baggage carousels and eventually he was supported to get a part-time job as a baggage handler. This gave him a uniform and made him feel very important. Service providers can’t necessarily make people’s dreams happen but PCP enables them to get closer to them.”

“Another challenge is resources, agencies can’t always afford to meet people’s lifestyle preferences. But some changes don’t incur cost. One young man I worked with, Tom, hated Sundays because there was no day service and he was bored, but it was very difficult for the agency to provide extra support. However, the vicar was invited to join Tom’s circle of support and he invited Tom to help him at church services. Now Tom meets and greets the parishioners and helps take the collection, so he’s no longer bored. What is more, he met two women at church who started taking him line dancing, so his social life is widening out. We need to be creative about what we mean by resources.”

Barbara pays tribute to the creativity and talent she has found among Sense staff in the way they addressed the issues that PCP raises. “Sense has some real experts in the field and now has a great opportunity to influence practice elsewhere. Many other agencies are watching Sense with interest.”

Reference

1. People, plans and possibilities. Helen Sanderson et al. SHS Ltd, 2000