Person-centred approaches to improve the quality of life of people with learning disabilities

by Julie Beadle-Brown, Tizard Centre

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In Frontline 74 (2009: 19.21), David Felce presented the quality of life domains and how they were important in conceptualising the purpose and nature of services for people with learning disabilities. This article will take this discussion further and explore how using person-centred approaches (person-centred planning, person-centred active support, total communication, the SPELL framework and positive behaviour support can help services to support people to have a better quality of life (see Beadle-Brown 2006; Beadle-Brown et al. 2009; Mansell et al. 2004; Mansell et al. 2005).) Over the past 30 years in the UK, government policy and practice in service provision have seen a shift from larger congregate settings, through smaller congregate settings and small staffed homes to supported living and independent living. This shift to smaller, more individualised accommodation options has been accompanied by a shift in more person-centred approaches in the way funding is delivered and the way support is provided to people. The most recent policy guidelines from the Department of Health (2009) emphasised the need to extend these more individualised, person-centred approaches to those with the most complex needs, who often were the last to be considered for any such developments.

However, these approaches are not in themselves new—some  of the pioneers setting up community-based services back in the late 1970s-early 1980s based much of what they did on similar approaches. Although not called Person-centred active support back then, what staff were trained to do in the early models of community living for those with complex needs in Andover and the Nimrod services in Cardiff was to facilitate engagement in activity as part of a framework to improve quality of life and to reduce challenging behaviour. It is only relatively recently (since the publication of the Mansell et al. (2005) training materials) that increasing numbers of organisations have recognised the need for Person-centred approaches as part of a positive behaviour support framework. Change has taken a long time in the UK, partly because of our market economy—for every two steps taken forward in terms of individualisation and personalisation, one step is taken backwards when a larger private care service or private hospital opens to provide what is usually marketed as specialist support for people with a learning disability and mental health problems, challenging behaviour or complex health needs.

Although all the old learning disability hospitals are now closed and those in our campus-based NHS provision have basically transferred to supported living in social care sector (and even our village communities are starting to change the shape of their provision), there still remain larger medicalised and institutionalised models. Their existence is usually justified because social care services are not yet as skilled as they need to be, in providing support, resulting in placement breakdown. In the UK a lot of time and money is still spent fighting crises, rather than helping people to have a good quality of life, first and foremost.

Overall, however, the trend is in the right direction ideologically and social conscience keeps developments moving in the direction of increasing personalisation. More and more services are implementing person-centred approaches. Now the challenge in the UK is to make it universal to service provision so that the focus is on providing a good quality of life for people, not just on meeting their physical needs and keeping them safe.

As other countries in Europe and further afield shift towards community-based provision in line with the UN Convention on the Rights of Persons with Disabilities, the lessons learnt by the UK are useful. It would be wonderful to think that rather than repeating all the backward steps made by the UK, countries like Ireland, Croatia, Romania, Hungary and Poland could skip 30 years and move straight into provided good Person-centred services, without having to go through the stage of providing institutional services in community settings. However, this requires that those leading the change process have a good understanding of what good Person-centred support means and how it can be used to achieve a good quality of life for those living in the community. Finally, it is also important that those responsible for change can make the argument for why just settling for a quality of life that is better than in institutional services is not enough and that we should strive to help people achieve the best possible quality of life, the quality of life that we know is possible when Person-centred approaches are in place.

Engagement in meaningful activities and relationships is generally considered as an important means to achieving quality of life for people with learning disabilities. Engagement is about taking part in a range of tasks, activities or interactions, in an active role rather than a passive role. It is not just about special activities for people with disabilities or exciting activities such as holidays or riding lessons, but also about the everyday activities around the house, in the garden and in the community. Engagement can be taking part in the whole activity, interaction or task or just taking part for a few minutes, dipping in and out. It can be initiated by the individual or joining in as an active participant. The nature of the activities which people are supported to engage in will be determined by their age, their own preferences and agendas and the setting. So, for example, the range of activities available in a work placement or supported employment setting may be more limited and focused in nature when compared to those available around the home or in the community, where a variety of household tasks, gardening activities, leisure activities, admin activities and community-based activities such as shopping are all options. In addition, people in a home-based environment can be supported in maintaining contact with family and friends—making and sending cards, phoning, emailing, using Facebook etc. In a day service or educational setting, activities may be more structured and should naturally encourage participation, but this isn’t always the case so attention needs to be given to engagement even in these settings.

Mansell et al. (2005) suggest that engagement is important for four main reasons:

1. We know that activity is important for our physical and mental well-being. Lack of activity can lead to both health problems and depression, boredom, etc.

2. When people are doing things and participating in activities and relationships, it is a sign that they are reasonably well adjusted to their lives and happy. If people are unhappy and maladjusted then we are likely to see challenging behaviour and lack of engagement. If activities are presented well and based on knowledge of the individual, people enjoy being engaged or at the very least start by tolerating being involved and later request to be involved.

3. We know that experience underpins development—when we try new things we learn new things and gain new skills—we develop. If we don’t try anything we cannot develop.

4. Lifestyle and quality of life is the outcome. For example, personal development is only likely to be possible if the individual participates in activities which broaden their experience and allow them to develop new skills and interests; interpersonal relations and social inclusion depend on interacting with other people, which many people need help to do, as well as being supported to be present and participating within the community—engaging in activities with other people creates an opportunity for interaction and conversation, a common interest; physical health depends on lifestyle and activity (Robertson et al, 2000); material well-being is improved if people are supported to find and maintain a job that pays wages and provides benefits; self-determination, autonomy and true choice can only be achieved if people have options to choose from, the experience with which to make the choices and an accessible method of communication with which to make their choices known—central to doing this is access to and support in trying new things and in finding ways to communicate choices; Finally, emotional well-being is both indicative of and determined by participation in activities and relationships—in our experience, when people are engaged they show that they are happy—although initially people might start by tolerating activities, over time most people move to actively seeking and enjoying engagement that is successfully facilitated. There is sometimes a decrease in challenging behaviour, especially in behaviour for which the function is stimulation or to gain attention. In addition, if people engage in activities, it is a sign that they are reasonably happy and adjusted in their setting and happy with the support being provided to them. In addition, an important consequence of engagement in age-appropriate, real activities is an increase in self-worth and self-esteem and in the respect with which individuals are viewed by others.

However, whilst people with milder levels of intellectual disabilities can often engage in activities with minimal support from those who are around them, those with more severe disabilities are often dependent on staff or family carer support to get and to stay engaged. Research (Felce, de Kock and Repp 1986; Jones et al.1999; Hatton et al, 1995; Mansell 1995; Jones et al. 1999, 2001; Mansell et al. 2003) has demonstrated that the only thing that predicts level of engagement for people with learning disabilities is whether staff work in a facilitative way, providing assistance to help people take part in activities, using what was initially known as ‘active support’, but more recently as ‘person-centred active support’. The person-centred element of this is important. It is perfectly possible for active support to be ‘un-person-centred’—staff can decide on the activities and the way that these are presented to people or supported, with little reference to the individual’s needs and preferences. Person-centred active support is about providing enough help to enable people to participate successfully in meaningful activities and relationships, so that people gain more control over their lives, gain more independence and become more included as a valued member of their community, irrespective of degree of intellectual disability or presence of extra problems.

Active support starts from what is already known about the individual and uses that to work out how to offer the opportunity to take part in activities or interactions. If people are supported to successfully engage then they will experience positive consequences—increased self-esteem as well as demonstrating to others that they are capable (often exceeding expectations of all those around them). This earns them more respect from other around them at home and in the community, improving their quality of life in terms of the domains of social inclusion, rights and emotional well-being, and increasing the likelihood that they will participate next time.

We know that training and supporting staff to work in this way increases engagement in meaningful activities and relationships, increases the opportunities for offering and supporting choice and empowerment and helps to promote independence and new skills (Felce, de Kock and Repp 1986; Mansell, McGill and Emerson 2001; Mansell et al, 2002). It is particularly important and powerful for people with the most severe disabilities—the support provided by staff can compensate for the level of disability (Mansell 1994; Hatton et al.1996; Jones et al. 2001a; Smith et al. 2002)

There are other Person-centred approaches which should accompany person-centred active support. Firstly, active support is an important element of positive behaviour support in working with people who display challenging behaviour. For this group of people, additional support is required around strategies to manage challenging behaviour. Positive behaviour support (Carr et al. 1999; Koegel, Koegel and Dunlap 1996) is a way of working with people who present challenging behaviour, which doesn’t focus narrowly on reducing the challenging behaviour itself, but on preventative and educational approaches. It involves careful assessment of the function of the challenging behaviour, changing the situation so that triggering events are removed, teaching new skills that replace challenging behaviour, minimising natural rewards for challenging behaviour and an emphasis on improving overall lifestyle quality.

Secondly, active support and engagement are also important for developing communication strategies and skills—in order to have something meaningful to communicate about, staff need to be doing things with people not for or to people. It is also important to note that communication may be non-verbal and that interacting with people through an activity is an important part of building report. It also gives people the opportunity to work out how those they are supporting communicate and indicate their preferences and choices. This, in turn, allows staff to amend how they present choices and opportunities for engagement to maximise the understanding of the individual and the possibility that they will participate. Once people know how people communicate they can share this with others who are important in the person’s life and use this information to facility interaction with others in the community. This is sometimes referred to as total communication (Bodner-.Johnson 1996; Jones 2000). Total communication is a way of supporting people with communication difficulties which involves the complementary use of signs, symbols, pictures, photographs and objects, as well as speech, to improve understanding, expression and literacy or other forms of verbal communication such as vocalisations or humming. It involves ensuring that everyone providing support uses the same methods and that all means of communication are valued and responded to by staff.

Thirdly, for people with autism, knowledge of autism and empathy for how it affects the individual are essential, as well as the use of visual structure, positive approaches and expectations, a low.arousal environment and consistent support (NAS SPELL framework, cf Beadle.Brown, Roberts and Mills 2009). Active support and positive behaviour support are important to implementing positive approaches and expectations, but they need to be combined with an autism-friendly environment and empathy for the impact of autism on the specific individual.

Finally, knowledge of people’s capabilities and preferences based on doing things for people is much poorer than if the knowledge is based on doing things with people, trying things out and watching their responses etc. Only when you work with people and have this basic knowledge of them, can you help them to think about their future and what they might like to do in six months’ time, or several years’ time. Therefore in order to develop dynamic and effective person-centred plans, you need person-centred action, in particular person-centred active support. In addition, in order to implement person-centred plans you need person-centred action. A plan without action and review is just a piece of paper in the filing cabinet. Action without a plan can become stale and does not promote development for the individual. Using person-centred approaches for people living in personalised services or the family home is generally relatively easy.

However, implementation of person-centred approaches in service settings is not always straightforward. The bigger the service and the more institutional the setting, the more difficult it is to implement Person-centred approaches. This is partly because there are many more people’s needs, preferences and agendas to take into account and partly because the environment is not conducive to people being able to take part in everyday activities. We know that training for staff is important and effective but that the training needs to be both classroom-based and on-the-job training (Jones et al. 2001). However, this is not enough. We know that management commitment is important (Mansell et al.1994; McGill and Mansell 1995) and Mansell et al.(2005) suggest that a number of other things are essential to the implementation of active support: firstly, service users need to be at the centre of staff activity, not on the periphery; secondly, staff need to see themselves as enablers rather than carers; thirdly, frontline managers need to move from administration to practice leadership; and finally, senior managers in organisations need to provide ways of dealing with lost administration, supplying training and support—but just as important, they are responsible for maintaining motivation and keeping the message straight. Staff working directly with people need to really believe that the organisation believes that user quality of life and, in particular, engagement is the most important element of their mission, that what managers want them to do is to use active support to enable people to participant in all aspects of their lives and to know that the messages they will receive in other training, policies, job descriptions etc are all consistent with the message that active support is the way they are expected to work. If staff believe that what is most important is filling in paperwork or keeping the place clean and tidy, then that will be their priority (Mansell and Elliot 2001).

This leads to the final important element in implementing person-centred approaches such as active support—attention needs to be paid to the issue of monitoring, maintaining and improving person-centred practices. As noted above, it is important that the burden of monitoring is kept as light as possible and that measures of quality focus on what happens in the day-to-day experience of people receiving support. In the Avenues Trust, training senior managers to observe on a regular basis and frontline managers to observe and give feedback to staff on a regular basis as part of practice leadership was an important element of the implementation plan (see Beadle-Brown et al. 2008). The focus of these observations is on engagement for service users and the quality of staff support.

So if person-centred approaches are being successfully implemented, what would we see? Well, we would see people who are socially included in their local community, taking part in everyday activities everywhere, with other people, not just in special activities or special sessions for people with disabilities. We would see people growing in independence, learning new skills, even if their steps were very slow and small. We would see them trying new things with just enough help and support to experience success, moving at their own pace. We would see staff doing things with people not for or to them. We would also see people making real choices. They would be broadening their experiences through trying new things so that they have alternatives to choose from. We would see staff respecting the choices people make as much as possible, helping people to manage risks, not avoid risks. We would see managers modelling and giving feedback to their staff, leading their teams to work together consistently to support the people at the centre of the services. We would see senior managers recognising good practice and celebrating successes throughout the organisation and marketing their services on the bases of real achievements in people’s lives. Eventually we would see those commissioning services selecting services that have a reputation for successfully implementing person-centred approaches, creating the necessary incentives for widespread implementation of person-centred approaches.

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