So what is considered a ‘normal life’? Normalization involves the acceptance of people from all walks of life regardless of age, race, disability etc., and offering them the same conditions that are offered to other service users with regard to housing, schooling, employment, exercise, recreation and freedom of choice. Even though people who have disabilities are different, we are all different ages, races, types of disabilities etc., and our differences are something that characterizes the population of people who use health and social care services. In order to determine which health and social care services are relevant to a particular service user, they are given labels i.e. disabled, old, etc. Joe Bloggs suggests that sometimes labeling can offer an opportunity to develop new and positive identities. This is as long as the that labeling brings is managed sensitively by the health care professional. If not, it will create a sense of isolation which makes it counter productive (Joe Bloggs, 2012). Being labeled as disabled, can make it difficult for service users to form their identities, and also difficult for service providers to identify with them. Every disabled person is unique, they will have a variety of disabilities and identities, and their idea of normality will differ accordingly.
One idea which challenges normalization, disability, and difference is the social model of disability which argues that individuals are disabled by society rather than their impairments. Social, environmental and attitudinal barriers are claimed to be the primary cause of disability. (K217, Chapter 6, p. 41). The social model accepts that difference is an important aspect of life, but argues that disabilities are seen as ‘normal’ aspects of life, and the unequal relationship within society disables people with impairments. A simple example is that of a wheelchair user who has a mobility impairment. The service user is not actually disabled in an environment where he can use public transport and gain full access to buildings and facilities in the same way that a ‘normal person’ would.
The concept of normalization uses the terms ‘impairment’ and ‘disability’ identically, but the social model separates them and sees ‘impairment’ as a ‘biological entity’ and ‘disability’ as a ‘social entity’. Normalization principles are based on ensuring disabled people have access to the same opportunities as other people, regardless of their identity but the social model of disability encourages society to contemplate the ways that disabled people are ostracized from society by the way services are planned and provided. Both models do not provide resolutions to the problems that arise on a daily basis for disabled service users, but they help us to understand some of the concepts adopted in health and social care today, and one of these concepts is the person-centred care approach to enable service users to live a ‘normal life’.
The person-centred care approach is a recent development in the history of health and social care services and it can help health and social care providers to address issues of identity and difference. Person-centred care is a way of improving the experience of care, where individuals have more choice and control over the type of care received. It involves listening to what people who use services have to say, treating them with respect, communicating honestly, relating to each person as an individual and acknowledging different parts of their identity and focusing on what people can do, rather than what they cannot do (K217, Chapter 7, p51). This personalized approach to care assumes that service users can decide how their needs can be met, provided that they have the relevant information and support available. It also requires that service providers and practitioners take a personal approach to the service user and offers flexible and open services. It re-focuses attention on the outcomes that hold meaning for the person using the service, and creates an environment in which service users, families, advocates and professionals can develop support that is based on an individual’s capabilities, rather than their so-called deficiencies (K217, Chapter 7, p53).
Person-centred care is a relatively new concept and is still a work in progress. It may eventually replace the more traditional model of care whereby agencies provide services in line with what they are able to provide as opposed to what the service user needs. Person-centred care has also led to the recent concept of ‘personalisation’, where …. individual and personal aspects are a central aspect to personalisation policies, which aim to give people more control over how they spend state funds to which they are entitled (K217, Chapter 7, p56).
This is demonstrated in the case study of Mitchell who has been in receipt of direct payments for the social care element of his care package so he could employ carers directly or from an agency of his choice (K217, Learning Guide 7.1, p.14). Mitchell’s family describe his previous care, where “the hospital-based team who provided staff to support us in caring for our son at home was a ‘one-size-fits all’ and which did little to recognize Mitchell’s individuality or the specific needs of the family. However, using the person-centred approach, Mitchell’s family were able to put him at the centre of his care package, seeing him as a whole person and empowering the family to live a good life. These positive changes to Mitchell’s life represents his move towards greater independence, thus allowing Mitchell to obtain a less stigmatized identity as proposed by Goffman.
The person-centred approach fits into the ‘consumer empowerment model’ as argued by Hunter and Ritchie, which assume that everyone can and wants to make choices about their care, provided that sufficient consumer information is available (K217, Chapter 7, p.58). The foundation of the consumer empowerment model is confidence that service providers will become more responsive to service users as power shifts away from the professionals. Inevitably, a minority of vulnerable service users will not have a family to support them and may face difficulties with personalisation policies, and they may require support or advocacy to achieve a ‘person-centred’ care approach. In addition, service users may spend their direct debit budget on less cost-effective treatments, questioning the effective use of public resources. However, in Vidhya Alakeson’s report on the Social Market Foundation, the National Centre for Independent Living argues “that direct payments generate greater value for money. Services purchased directly by individuals cost between 20 percent and 40 percent less than the equivalent services provided in-house” (Alakeson, 2007 quoted in K217, Learning Guide 7.3). However, the person-centred care approach does not always suit everyone, and this is demonstrated in the case study of Jane in her move from an institutionalized setting to a more person-centred approach.
Person-centred care has had a significant impact on care within institutional settings, where service users were labeled as ‘mentally retarded’ or ‘sub-normal’, and were placed in large overcrowded institutions. Orchard Hill, which was the last learning disability hospital in England to close, is one example where service users identities were stigmatized and the process of normalization was put into place, by placing residents in their own purpose-built one-bedroom flat within the community, where they now have their right to privacy, choice and independent living. This process of person-centred care was seen by many as a positive change in the provision of health and social care services for disabled people but not everyone supported it. David Lee, whose daughter Jane was at Orchard Hill for many years, speaks highly of the staff, facilities and systems available, and felt that the environment at Orchard Hill was suitable for Jane’s needs (K217, Audio, Learning Guide 7.1, Task B). It could be argued that there are no advantages for Jane living independently and that no stigma exists about the current arrangements for Jane or her family.
Hilary Brown and Jan Walmsley argue that normalization ideas can too easily be taken to mean that what’s ‘ordinary’ is what’s best for people, and also that it can be used to excuse failures to provide services that an individual genuinely needs (K217, Chapter 6, p.43). However, for others, including the government and disability activist groups supporting the social model of disability, the move towards independent living fits with the belief that ‘normalization’ and integration in society is ‘valued’ and allows the development of a positive identity.
Some service-providers and professionals may also argue that a service user’s choice of provider and treatment may take precedence over clinical outcomes or the values of choice, control and independence may come into conflict with a practitioner’s towards a service user. However, the author argues that even though there are risks involves, this risk must be managed by the service-provider, the service user and carers. Risk exists in all our lives and …. for people who receive services, risk can be something that defines their identity and limits their opportunities (Booth and Booth 1998) (K217, Chapter 7, p. 62).
In conclusion, person-centred care can have a positive impact on the majority of disabled people by addressing issues of identity and difference, and increasing their activities, opportunities, and well-being, in terms of happiness and self-esteem. It can make a difference to the quality of a service user’s day-to-day life as we saw in the case study of Mitchell. However, person-centred care does not suit everyone as we saw in the case study of Jane in her move from an institutionalized setting to a more person-centred approach. Her family do not feel that furthering her independence into new community accommodation is beneficial to her or her needs. The debate regarding person-centred care will continue for some time but in today’s modern world, person-centred care should be an option for all service-users, where it is logical to do so. Despite the initial difficulties in setting up person-centred care services, ultimately a personalized approach to care will enable the majority of service users to lead a ‘normal life’ where everyone is accepted into society, everyone is offered the same conditions and everyone gains their right to freedom of choice.
Word Count: 2112 words
References:-
Bloggs, J. (2012) ‘Block 2 Task’, 30 March, 2012, 21:09, forum message to K217 2012
The Open University (2010), K217 Exploring identity, difference and inequality: Printable Version, Book 2, Chapter 5, ‘Who are you? Identity in health and social care’, Milton Keynes, The Open University
The Open University (2010), K217 Exploring identity, difference and inequality: Printable version, Learning Guide 7, Activity 7.3, Task C, ‘Person-centred care and health’, Milton Keynes, The Open University.
The Open University (2010), K217 Exploring identity, difference and inequality, Audio, Learning Guide 7, Activity 7.1, Task B, ‘What is person-centred care?’
The Open University (2010, K217 Exploring identity, difference and inequality: Printable version, Book 2, Chapter 6, ‘The social model of disability’, Milton Keynes, The Open University
The Open University (2010), K217 Exploring identity, difference and inequality: Printable version, Book 2, Chapter 7, ‘Providing person-centred care in practice’, Milton Keynes, The Open University.
The Open University (2010), K217 Exploring identity, difference and inequality: Printable version, Book 2, Chapter 7, ‘The role of the practitioners’, Milton Keynes, The Open University.
