Until the 1950s, the idea that adults with learning disabilities' had unique individual needs and rights was unheard of. Since that time, significant conceptual ideas have influenced policy development and subsequently changed the way in which services are delivered for adults with learning disabilities. It is valuable to briefly explore the journey and progression of thinking that have moved ideas from this custodial climate to one of more personal power control and inclusion.
The development of the Human Rights movement in the 1960s, and the work of Goffman (1961) in relation to the injustices experienced by people living in large institutional settings, laid the ground for radical change in service delivery for people with learning disabilities.
Perhaps the most influential idea to emerge was introduced by Wolfens-berger in Sweden in the 1970s. The principle of 'normalisation' sought to direct us to utilise our resources to provide services that ensured that adults with learning disabilities were enabled to experience the same opportunities as any other adult within their cultural context (Wolfensberger 1972). Wolfens-berger further developed this idea to include the concept of socially valued roles for people with learning disabilities, aptly termed Social Role Valorisation (SRV) (Wolfensberger 1998). SRV emphasised the need for adults to be given opportunities to develop roles within society that were valued by others in that society, such as the opportunity to be in paid employment, to use local social/recreation facilities or to have the right to express their sexuality - in other words, to have their individuality recognised, valued and respected.
O'Brien and Tyne (1981, cited in Gates 2003) interpreted these concepts in the United Kingdom, developing five service accomplishments: community presence, choice, competence, community participation and respect. Many of the services still use adaptations of these accomplishments in setting their service aims and objectives.
The People First service user movement, developed in the 1980s, heralded the beginning of a real contribution by adults with learning disabilities in the planning and development of services provided to support their own needs. The NHS and Community Care Act 1990 saw the emphasis being based on community care, highlighting the rights of adults with learning disabilities to be active participating members of the community, living and working within that community.
Within the process of care delivery, this emphasis on adults with learning disabilities being allowed to exist and contribute as individual, valued human beings was expanded further through the development of Individual Programme Planning (IPP). IPP asserted that adults with learning disabilities had the right to be involved in the assessment, planning, delivery and evaluation of their care. Adults with learning disabilities and their families were encouraged to actively participate in their needs assessments, in planning and review meetings. Key worker systems were established to help demystify these processes for adults with learning disabilities and allow them to make a valued contribution to the multidisciplinary approach offered by IPP. This was a significant concept and worked well to enable adults to be included in their own care assessment, management and delivery.
Adopting a person-centred approach (PCA) embraces some of the ideas within IPP but takes the concept to a higher level, as it incorporates greater involvement and responsibility for adults with learning disabilities in the decisions made in their lives.
This PCA is the contemporary concept adopted by service commissioners and providers in outlining the context and manner in which care provision for adults with learning disabilities will be constructed and delivered in the twenty-first century. It is a change not only in the processes of how we assess needs and subsequently set objectives and deliver services, but is a whole shift in the value base of services - a new way of thinking - and, as such, has a huge impact on the way in which carers and other professionals will be trained and educated to support adults with learning disabilities.
Within the constructs of Valuing People (Department of Health 2001a), a PCA to planning care is defined as:
'A process for continual listening and learning focussing on what is important to someone now and in the future, and acting upon this alliance with their family and friends. The listening is used to understand a person's capacities and choices. Person centred planning is the basis for problem solving and negotiation to mobilise the necessary resources to pursue a person's aspirations. These resources may be obtained from someone's own network, service providers or from non-specialist and non-service sources.'
(Department of Health 2001b, p. 12)
This definition is a directive from the Government, outlining how they interpret this concept of person centredness and providing carers working in support of individuals with a framework enabling this concept to be turned into a reality.
Adopting a PCA creates vast opportunities and challenges in supporting adults with learning disabilities.
The emphasis is on power and control being taken away from the service providers and placed squarely with adults with learning disabilities and their families and support networks, and represents a radical change from previous care delivery models.
Previously, choice and empowerment were valued, but such choice existed within a 'set menu' of services from which adults with learning disabilities had to choose. They were asked to fit in to whatever was the most appropriate service to meet their needs.
A PCA through PCP sees adults with learning disabilities identifying their own needs with their families and personal support circle, in partnership with service providers. It requires service providers to look at using resources to meet these individual needs, rather than fitting people into existing services.
PCP allows adults with learning disabilities to aspire beyond their current worlds. It gives people the opportunity to have dreams for the future. It takes away the focus on skills and deficits in their abilities and embraces creativity and innovative opportunities denied to adults with learning disabilities until now.
Community learning disability nursing aims to include individuals in their planning meetings. However, frustrations can be experienced in the scope of this inclusion. Adults with learning disabilities are sometimes present at meetings but conversations may be taken over by some professionals with their own agendas when acting in the 'best interest' of the individual. A PCA means just that - the adult with a learning disability sets the agenda; meetings are not set at particular times, but occur when required. The agenda both for the meetings and for individual lifestyle planning is set, directed and controlled by the adult with a learning disability, his/her advocates and supporters:
'A person-centred approach to planning means that planning should start with the individual (not with services), and take account of their wishes and aspirations. Person-centred planning is a mechanism for reflecting the needs and preferences of a person with a learning disability and covers such issues as housing, education, employment and leisure.'
(Department of Health 2001a, p. 49)
Smull (2004, cited in Grant et al. 2005) makes a poignant observation, demonstrating the need for care providers to change their attitudes. He talks about comfort rituals, noting that we would not deny ourselves a glass of wine for relaxation at the end of a 'bad' day, but would probably feel it was all the more reason to indulge in this comfort, whereas people with learning disabilities are often denied their comfort ritual if they have not been 'good', or have had a 'bad day'. This is a valid point in terms of care providers' controlling people's lives, and involves carers' having to change their attitudes and perceptions to give back that control to where it belongs - to the people themselves.
Criticism has suggested that a PCA is a concept that sounds ideal and forward-thinking; however, as with many well-intentioned concepts and ideas, it is open to interpretation. Hence, the true meaning and consequence of a PCA are still developing and we need to be conscious that the essence and original intentions of the approach are not lost. Other critics highlight the difficulties in service providers' responding to individual needs effectively in shifting resources to ensure that appropriate opportunities are available.
The reliance on unpaid carers and a circle of support for the person with a learning disability could exclude some adults with learning disabilities who, by the very nature of their needs and circumstances, may not have established trusted networks to support them. An example would be a person who has a high level of need with limited communication abilities and living in an institutional setting with little or no family contact. Such people will rely on paid professionals and carers to ensure that they have access to this approach to planning their lives (Grant et al. 2005).
As carers involved in supporting adults with learning disabilities, you need to ensure that you are equipped to provide appropriate support. Hence, you will need to be aware of PCP initiatives in the services that you will be working in:
'PCP may be best considered an evolutionary step in the long-standing trend towards the increasing individualisation of services.'
(Emerson et al. 2005)
You will need to develop innovative communication and interpersonal skills and be imaginative, along with colleagues, advocates and family members, in exploring creative ways to ensure that adults with learning disabilities take control of their life planning. Communication and interpersonal issues will be further explored by Randle in Chapter 2 of this book; however, the following section will explore issues relating to the need for you as a carer or student to be aware of the importance of fostering good working relationships with adults with learning disabilities.
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