Learning Disabilities Report

Organizing to encourage effective direct support

The following report is based upon the experiences and perceptions of direct support (and of the ‘social model’ of disability provision) of a particular person with learning disabilities: Mark. The experiences and perceptions in this case study are taken from interviews and discussions with Mark himself, with members of his family, and with his social workers and managers. The purpose of the report is to describe Mark’s experiences of social care under direct support and to compare these with the types of social work that he experienced before the introduction of direct support. The report focuses upon Mark’s growing sense of ’empowerment’, ‘ability to help himself’, and ‘individuality’ that emerge from his experiences of direct support. Thus a major theme of this report is to examine how direct support assists people with learning disabilities to gain recognition as contributing members of the community.

The report has the following structure:

A (i). An analysis of the government’s seminal white paper Valuing People: A New Strategy for Learning Disability for the 21st Century (DOH, 2001). This white paper was a momentous recognition by government of the ‘social model’ of social provision, and it thrust direct support to the front of the government’s strategy for learning disability. A discussion of this white paper allows an analysis of Mark’s own experiences of direct support: how successful it has been for him, how he perceives the changed attitudes of the social workers he works with – how they now perceive their work differently now.

(ii). This section also examines the notion of ’empowerment’ and the idea that people with learning disabilities must be recognized as contributing members of society also, rather than ‘medical problems’.

(iii). The model, Organizing to Encourage Effective Direct Support, stresses the need to examine direct support from the perspectives of all involved: the person with learning disabilities, his carers and also the government and managers who make decisions that affect him. This white paper then is a highly useful document for understanding the government’s perspective and attitude to the needs of people with learning disabilities.

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B. An analysis of the biographical material furnished by Mark’s case study. Does his experience of direct support match that set out by the government in Valuing People? Which direct support schemes in this white paper has Mark benefited from? What are does he perceive the benefits of direct support to be in contrast to previous types of social care that he has experienced? How do those people who live and work with Mark perceive these changes?

C. An analysis of three theoretical and practical existing models of disability provision – moral, medical, social – and Mark’s various experiences of these models. How does Mark experience the theory of social provision when it is put into practice?

D. Conclusion. The report concludes with an examination of Mark’s future prospects working with direct support, and the future prospects of direct support itself

A: Valuing People: A New Strategy for Learning Disability in the 21st Century

‘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.’ (Valuing People, 2001, p49)

This quotation from the government’s seminal white paper Valuing People: A New Strategy for Learning Disability for the 21st Century encapsulates the radically new ideas and ideals established by this document for the provision and practice of social work for people with learning disabilities. This white paper represented both an important official recognition of the validity of the ‘social model’ of disability provision, and also a promise to implement its ideas and philosophy of learning difficulties, as had been advocated by social work practitioners and academics for some time. Thus this white paper was a significant move away from the ‘medical model’ of disability provision that had held supremacy for most of recent healthcare history. As the above quotation suggests, this new approach to disability gives the individual far greater freedom to make decisions about his own future – the philosophy is ‘person-centred’ and ‘individualized’ – and, more than this, recognizes that people with learning difficulty have exactly the same rights and should have exactly the same opportunities as non-disabled people. The white paper acknowledges the new phenomenon of the ’empowerment’ of people with learning difficulties and suggests how empowerment can be extended amongst those with such difficulties.

An analysis of this white paper is vital for any student with learning difficulties who seeks to analyse how direct support works in practice. Valuing People established guidelines and proposed schemes that have to be met in practice, in the lives of people with learning disabilities. In the next section, this report looks at how this government model has been experienced by one particular person with learning difficulties: Mark.

This present analysis focuses upon Chapter 4 of the white paper: More Choice and Control for People with Learning Disabilities. The introductory statement of this chapter sets the tone for the entire document. It states:

‘Government objective: To enable people with learning disabilities to have as much choice as possible over their lives through advocacy and a person-centred approach to planning the services and support they need.’ (Valuing People, p44)

Thus from the very beginning of this chapter the paper makes it clear that people with learning difficulties must have ‘as much choice as possible’ and be helped by a ‘person-centred approach’ to take control of their own lives. A second key promise emerges soon afterwards: ‘Services should respond to the wider aspirations of people with learning disabilities and give them more choice and control’ (Valuing People, 2001). This phrase reveals that people with learning disabilities are no longer thought of only in terms of those disabilities, but that their ‘aspirations’ and ‘personalities’ are taken into account also. The paper contends that social workers must seek to reverse the many problems halting direct support at the time: for instance, services were too lethargic, advocacy was limited, and people with learning difficulties had far too little say and involvement in the management of their own care. The paper suggests methods as to how these faults in the system might be changed. For instance: advocacy services must be extended considerably, more people must receive direct payments, and a person-centred approach must be developed by social workers and managers. Managers have the vital responsibility of ‘personalizing’ people with learning disabilities and getting to know those difficulties intimately. Managers and organizations cannot help unless they take such an approach.

Valuing People made several proposals to affect such reform: the Disability Rights Commission, £1.3 million per annum to expand advocacy services, The Learning Disability Development Fund are all examples of proposals made in the white paper. Let us look at several of these methods of direct support in more detail.

Disability Rights Commission: The role of the DRC is to assist people to guarantee their rights as secured by the Disability Discrimination Act (1995). The Commission’s work involves getting disabled people into consultations about major policy initiatives that concern them; ensuring that decision-making material is available in user-friendly formats; and educating businesses and institutions about how to work with people with learning disabilities.

Advocacy: Advocacy is absolutely crucial for successful transfer of responsibility and decision-making to people with learning disabilities themselves. Advocacy can be of two types: self-advocacy or advocacy through organizations. The government gives £1.3 per year to further advocacy programmes.

Direct Payments: Direct Payments are a further means of giving people with learning disabilities more control over their own lives. Direct Payments enable Local Councils to allow people to pay for support they are entitled to before that support has been given. This was extended by the Carers and Disabled Children Act (2000) which facilitated immediate payments to carers and to 16 and 17 year olds with learning difficulties. (The Health and Social Care Act (2001) widened the availability of Direct Payments still further.) Once these payments are received disabled people have far greater freedom to choose what type of support they require for themselves. The Implementation Support Team was set-up to improve application rates for this critical scheme.

Person-Centred Planning: This initiative is intended, as its name suggests, to ensure that the planning of care for a person with learning disabilities is organized as much as possible by working with individuals themselves. The paper suggested that Learning Disability Partnership Boards begin to implement this approach throughout care management and practice as soon as possible.

Care management: According to the white paper care management is the ‘formal mechanism for linking individuals with public services’ (Valuing People, 2001). In other words, care management is the vital instrument of direct support. Therefore it must be ‘responsive to person centred planning, and have the capacity to deliver the kinds of individualized services likely to emerge fro the process’. Connexions Gateway was set-up to establish vocational plans, as well as health, housing and communication plans for people with learning disabilities.

Fair Access to Care: Free Access to Care was aimed to establish the basis by which eligibility for social care for adults should be determined.

In conclusion, Valuing People was a sea-change in the policy of the British government and its care agencies towards the care of those with learning difficulties. Its emphasis upon direct support through person-centred care and individuality gave people with learning difficulties rights and confidence to exercise those rights that they would never have previously thought possible. It empowered disabled people to help themselves. Managers and social workers too were seen as vital instruments for changing the prejudices and attitudes of the public, and creating awareness that people with learning disabilities are valuable members of the community.