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Independent futures

Independent futures: Creating user-led disability services in a disabling society

Colin Barnes
Geof Mercer
Consultant Editor: Jo Campling
Copyright Date: 2006
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  • Book Info
    Independent futures
    Book Description:

    The number of disability related support services controlled and run by disabled people themselves has increased significantly in the UK and internationally over the past forty years. As a result, greater user involvement in service provision and delivery is a key priority for many western Governments. This book provides the first comprehensive review and analysis of these developments in the UK. Drawing on evidence from a range of sources, including material from the first national study of user-controlled services, this book provides a critical evaluation of the development and organisation of user-controlled services in the UK and identifies the principal forces - economic, political and cultural - that influence and inhibit their further development. It summarises and discusses the policy implications for the future development of services and includes an up-to-date and comprehensive literature and research review. Independent futures is essential reading for academics and students on a range of courses including: health and social care; social work; allied health professions, such as nursing, occupational therapy and speech therapy; social policy; sociology; and psychology. It will also be of interest to practitioners and policy makers who need a reliable overview of current policy and critical analysis of key issues affecting future policy and practice.

    eISBN: 978-1-84742-157-9
    Subjects: Sociology

Table of Contents

  1. Front Matter
    (pp. i-ii)
  2. Table of Contents
    (pp. iii-v)
  3. List of figures and tables
    (pp. vi-vi)
  4. Acknowledgements
    (pp. vii-vii)
  5. Notes on the authors
    (pp. viii-viii)
  6. ONE Examining user-led services
    (pp. 1-8)

    An extraordinary politicisation of disabled people began to gather momentum in Britain during the 1960s. It ranged from demonstrations and protest campaigns to the growth of self-help groups and disabled people’s own organisations. The driving force was a deep sense of injustice fuelled by poverty, discrimination and social exclusion. Despite the expectations of improvement associated with the welfare state reforms of the 1940s, the ‘reality’ of living with an accredited impairment, long-term health condition or ‘disability’ was very different.

    How was this wide gulf between the life chances of disabled and nondisabled people explained or justified? The dominant account equated...

  7. TWO Traditional approaches: disability policy and the welfare state
    (pp. 9-28)

    This chapter provides an overview of social policies that have influenced the lives of people with impairments, and how these have changed historically across different political and economic contexts. First, we outline available assistance from the 17th to the early 20th century for individuals broadly categorised as ‘sick and infirm’. This ranged from state poor relief and charitable aid, to ‘informal’ support from family members and the local community. Into the 19th century, there was increasing resort to segregation in institutions. By the start of the 20th century, with poverty increasingly regarded as a social problem requiring collective action, Poor...

  8. THREE Disability activism and the struggle for independent living
    (pp. 29-50)

    Through the last quarter of the 20th century, disabled people developed a remarkable challenge to the dominant understanding of disability. It has involved the politicisation of disability with the setting up of many new grass-roots organisations around the country, the involvement of an increasing number of disabled people in campaigning activities, and the production of a crucial body of writings by disabled people and their allies advancing a socio-political analysis of disability. Moreover, these interventions have recently begun to exert a discernible impression on government thinking and policy (Barnes et al, 1999).

    This chapter begins by examining the emergence of...

  9. FOUR Researching user-led organisations
    (pp. 51-70)

    In the last quarter of the 20th century, the critique of established ways of theorising disability was extended to mainstream social research. The starting point was the refocusing of analyses of disability on the ways in which social barriers rather than individual limitations contributed to the exclusion of disabled people from everyday life. In turn, this socio-political approach stimulated the adoption of a research paradigm that similarly challenged the social oppression of disabled people.

    This chapter begins with a review of disability theorists’ criticism of traditional ways of researching disability, particularly its theoretical standpoint and the disempowering role of ‘research...

  10. FIVE User-led organisations: building an alternative approach
    (pp. 71-92)

    This chapter begins the review of the fieldwork data collected as part of theCreating Independent Futuresproject. First, we examine disabled activists’ dissatisfaction with the ways in which successive governments promoted consumerism, via the marketisation of services, particularly the ideas and practices associated with user involvement and consultation. This is contrasted with the commitment of organisations of disabled people to a democratic or participatory approach. Second, we trace the diverse origins and growth of user-led organisations, looking in detail at nine case study sites. In the third section, we consider the adherence of user-led organisations to a social model...

  11. SIX Service design and delivery: opportunities and constraints
    (pp. 93-114)

    This chapter focuses on the activities of user-controlled organisations as service providers and the associated constraints of a policy environment still dominated by traditional ideas about disability and dependence. How far and in what ways has service support for independent living worked out as intended in practice? This includes consideration of the ‘seven needs’ for independent living (and their subsequent extension) by user-led or user-controlled agencies. The discussion is grounded within recent trends in community-based services; in particular, the increasing emphasis on ‘Best Value’ with the goal of integrating high standards with efficiency and effectiveness in their achievement.

    A specific...

  12. SEVEN Service users’views and experiences
    (pp. 115-136)

    This chapter, first, foregrounds users’ experiences using mainstream, community-based support services. A contrast is drawn with disabled people’s experiences of user-led services. The discussion concentrates on the perceived advantages and disadvantages of the two forms of provision. Second, consideration is given to the impact of current economic and policy contexts on the promotion of ‘independent living’. As previously noted, the growing emphasis on market forces and user involvement in government policy statements has provided a fertile context in which user-controlled initiatives have developed. Although small in number, organisations controlled and run by disabled people have provided a range of services...

  13. EIGHT Politics and campaigning
    (pp. 137-158)

    The unprecedented politicisation of disability by disabled activists and groups in Britain was fuelled by the philosophy of independent living and the social model of disability. Political campaigning has been an important factor in the government decision to introduce major legislation such as the 1995 Disability Discrimination Act and the 1996 Community Care (Direct Payments) Act. Despite their shortcomings, these have enhanced both disabled people’s claim to citizenship rights and their participation in disability-related services. It is also necessary to consider how the changing politics of disability have impacted on Britain’s network of user-controlled organisations and Centres for Independent/Integrated/Inclusive Living...

  14. NINE Policy change or retrenchment?
    (pp. 159-180)

    We now draw together the main themes raised in previous chapters concerning the implementation of a social model approach to service provision for disabled people. Attention centres on the practical implications of developing user-controlled services.

    Throughout its history the Disabled People’s Movement has campaigned for recognition of the right of disabled people not to be forced into routine and significant dependence on non-disabled people. The political goal has been a society that facilitates and supports an independent lifestyle. In this struggle, user-controlled organisations have been accorded a crucial role.

    The discussion in this chapter will concentrate on three main areas:...

  15. TEN Future directions
    (pp. 181-192)

    Since the middle of the 20th century, there has been a gradual but intensifying politicisation of disability by disabled people and their organisations, with an evident impact on government social welfare policies. The economic, political and cultural upheavals of the 1960s coupled with the harsh realities of traditional exclusionary policies for people with accredited impairments provided a fertile breeding ground for radical new ways of thinking about disability. These include the concept of independent living, the re-interpretation of disability as social oppression, the social model of disability, and the demand for choice and control of disability-related services.

    Subsequent trends in...

  16. References
    (pp. 193-216)
  17. Index
    (pp. 217-223)
  18. Back Matter
    (pp. 224-224)