1.6 Understanding personalisation: citizens and consumers
In the UK the Disability Rights Movement flourished at the same time as Margaret Thatcher and the ‘New Right’ took over the political centre ground, and sought to dismantle the role of the state that Beveridge had proposed. The state was to cease being a provider of services and instead become an ‘enabler’ of service provision. The NHS and Community Care Act 1990 crystallised this move away from state provision and towards an increased role for the private sector. These changes have, though, been much less pronounced in Scotland than in other parts of the UK, especially in rural areas where the public sector may be the principal provider of health and social care services.
Introducing ‘markets’ into health and social care emphasised people’s rights as consumers of services. It underlines the fact that that people with disabilities have the same rights as anyone else who ‘consumes’ any type of service, whether that service is provided by a high street shop, a local authority or the health service.
At the same time there is increasing emphasis on disabled people as citizens, and on establishing rights based on the social model of disability. For example, in 2000 Children's Charter of Rights for young people at risk of abuse or neglect, underpinned by the United Nations Convention of the Rights of the Child (UNCRC).– the report of a major review of services for people with learning disabilities in Scotland – stressed the importance of people with learning disabilities exercising control over their lives, including decision making about their support needs, and having the same opportunities as other people in society (Scottish Executive, 2000). Increasingly, these rights are also enshrined in laws such as the Human Rights Act 1998 and the Equality Act 2010, and the principles of Scottish statutes such as Adults with Incapacity (Scotland) Act 2000 and the Mental Health (Care and Treatment) (Scotland) Act 2003. Scotland also has a
However, consumers’ and citizens’ rights are not the same. The first establishes a private relationship between the consumer and the producer of a service . The state is at least at one remove from the consumer. If there is something wrong with something that you buy, it is the consumer who must battle with the firm that provides the service to redress wrongs. But are patients or clients really ‘consumers’? Can they buy goods and services for their own use as they choose? The answer is no, because the services on offer depend largely on the assessment of need made by health and social work professionals. Meanwhile, professionals’ choice is often constrained by budgets allocated to each service.
Citizenship, on the other hand, establishes a relationship between the citizen and the state . A focus on citizens’ rights leads to a focus on what the state ought to provide to its citizens as a matter of entitlement. If there is a breach of this kind of entitlement then redress comes from political engagement with local councillors, members of parliament and the ballot box – democracy in action. In Scotland, although a ‘consumer model of citizenship cut very little ice’ (Law, 2006, p. 62), the concept of citizenship – both in terms of rights and of responsibilities of citizens within communities – has become increasingly influential. This focus on citizenship is evident in the language of education as well as health and social care. For example, education for citizenship is seen as a key aspect of the Curriculum for Excellence in Scottish schools:
Young people are citizens of today, not citizens in waiting. Education for citizenship is about developing in learners the ability to take up their place in society as responsible, successful, effective and confident citizens both now and in the future.
‘ Citizen leadership ’ is a good example of how language can help to change our understanding of people’s capabilities, and their relationships with professionals and services. The User and Carer Panel of Changing Lives has said that citizen leadership is fundamental to bringing about much needed changes in social services in Scotland. They said:
Citizen leadership is an activity ... it is what happens when individuals have some control over their own services. It is also what happens when citizens take action for the benefit of other citizens.
This illustrates how two words – ‘citizen’ and ‘leader’ – can together convey a quite different message from referring, for example, to a ‘patient’ or a ‘service user’. Citizen leaders have rights and responsibilities in their communities, and can influence others and make things happen. You will have more opportunities to explore citizen leadership later in this section and in other parts of this course.
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