Disabled People, Service Users, User Involvement and Representation

The issue of representation and representativeness has become central in debates about user involvement, disabled people and users of social care services. This article examines the emphasis of service agencies on the 'unrepresentativeness' of disabled people and service users; looks at how this is experienced by the latter and considers why the issue has gained such importance. It examines the different meanings attached to representation by recipients and providers of services. As well as looking at how the issue of representativeness is used to devalue, exclude and disempower disabled people and service users, the article explores its relation with the competing participatory and representative models and practices of democracy employed by disabled people and service providers.     

Increasing Opportunities for Co-production and Personalisation Through Social Work Student Placements in Disabled People's Organisations

Social work student practice placements in disabled people's organisations offer several advantages for individual students, their peers and tutors, and DPOs themselves, who can offer placements for students in supporting service users to give their views as well as delivering social care services. In this context professional skills and anti-discriminatory practice are fostered through learning directly from disabled people as experts without the constraints of local authority policies.

This paper draws on my experiences of such student placements at Wiltshire and Swindon Users' Network over a 15-year period, 1993–2008, in collaboration with different universities. The social work student on placement here experiences an alternative organisational culture which recognises service users' expertise over professionals. The student learns to value collective peer support and working with activists who view their experience through the framework of the social model of disability. This facilitates a two-way exchange as the student learns about user-led practice and the disabled activists appreciate the skills the student brings.

The advent of policies of personalisation, the Big Society and the decreased role of local authorities is challenging the traditional model of adult care social work within local authorities. The placement of social workers in local centres for independent living, in order to provide intensive one-to-one support in support planning for those in complex situations, is only likely to increase in future. This can be seen as a positive alternative which enables professionals to rediscover their professional values and practice and extends the opportunity for placements beyond DPOs concerned with user involvement only.     

Representing the Views of Disabled People in Community Care Planning

The 1990 NHS and Community Care Act requires social services departments in Britain to involve representatives of service users in the preparation of their annual community care plans. This paper gives a critical account of the different ways in which the views of disabled people are sought and represented in community care planning; and of the organisational and practical barriers which disabled people and their organisations are likely to encounter in representing their views to service planners. People with learning disabilities, older disabled people, people with sensory impairments and disabled people from Black and ethnic minority communities are particularly likely to be excluded from current consultation procedures. The paper concludes that present methods of representation place considerable burdens on both individual disabled people and on their organisations. Consequently, disabled people may increasingly question the effectiveness and usefulness of their involvement in community care planning, in the light of the many other issues which are important to them.     

Disability in Adulthood: Ten-year Follow-up of Young People with Disabilities

This study investigates the attainment of adult status among a sample of 39 physically impaired people aged 25 to 30 years. Compared with the general population, they were much less likely to have worked in paid employment, to have established independent households, or to be married and have families of their own. Few had achieved their teenage aspirations for marriage or parenthood. Most of those who had never had a job since leaving school still wanted to work. The majority still hoped to live in a place of their own. The findings point to major inadequacies in provision for disabled people, particularly in practical and financial support for those who want to work and live independently. Policies and services for young disabled people need to be developed within a common framework which includes a comprehensive definition of the transition to adulthood and agreed goals for the achievement of adult status.     

The Future Challenge for Direct Payments

Since 1997, Local Authorities have had the discretionary power to pay cash directly to disabled adults up to the age of 65 and assessed as needing social service support. More recently, the scope of Direct Payments has been widened to include people aged over 65 years and will, under the Health and Social Care Act 2001, be extended to further groups including disabled people from 16 to 18 years of age and parent carers of young children with impairments. Direct Payments have the potential not only to impact radically upon an individual's quality of life but also to influence the 'community care' market economy and the way personal support services are purchased and delivered in the future. Recent figures from a survey undertaken by the Association of Directors of Social Services suggest that 80% of local authorities have already introduced a Direct Payments scheme and that over 3500 people are already in receipt of direct payments (Jones, 2000). This paper is based upon evidence from a user-controlled Best Value Review of Direct Payments (BVDP) in Wiltshire. It explores, from disabled people's perspective, the advantages and disadvantages of Direct Payments, and demonstrates the challenges still facing both service users and service providers.     

‘It’s like having another job’: the invisible work of self-managing attendant services

Abstract

This reflexive ethnographic study examines the work disabled people do to ‘self-manage’ attendant services. The data reveal diverse facets of work reported by ‘self-managers’, their support networks and program administrators. The analysis found that self-managers’ work is often represented as ‘something other than work’, if and when it is represented at all. In this paper, disability studies and feminist perspectives on work inform a discussion of factors that may be seen to render self-managers’ work ‘invisible’, and implications of self-managed models that require contributions of invisible work.     

Disability and sex work: developing affinities through decriminalization

This article argues that strong policy frameworks are required to support the health and well-being of sex workers, disabled people, and disabled sex workers. Through an examination of the context of sex work in Canada, we articulate the flaws of sex work criminalization and the persistent barriers that criminalization creates. Our analysis of the intersection of disabled sexuality and access to sexual services identifies how the sex industry can aid in the flourishing of the erotic lives of disabled people. The article culminates in a discussion of the benefits of sex work decriminalization for sex workers, disabled people, and disabled sex workers.     

Choice: what,when and why? Exploring the importance of choice to disabled people

Extending choice and control over public services is central to current policies in England. Such policies have immense potential for independence and well‐being. However, it is still not clear how disabled people conceptualise choices, what choices are important, for which groups of people, in what areas of life and why. This paper presents findings from the first phase of a longitudinal qualitative study of choice and control over the life‐course. Semi‐structured interviews were carried out with 111 participants including disabled young people with progressive conditions; their parents; adults and older people with fluctuating support needs and those experiencing sudden deterioration in health. The findings suggest that while most people across all study groups wanted to be able to make choices in all areas of their lives, there are significant differences in the importance they attach to specific choices. The findings have implications for service reforms and identify some policy and practice issues that need to be addressed.     

Do self‐assessment and self‐directed support undermine traditional social work with disabled people?

In recent years, self‐assessment and self‐directed support have become mainstream options within disability services. The Disabled People’s Movement has advocated the need for such change for a long time but this has been persistently resisted by many social workers. In this article, it will be argued that both self‐assessment and self‐directed support undermine traditional social work and that social workers need to begin to work alongside disabled people, rather than ‘for’ disabled people, in order to achieve substantial system change.     

Work and Work Alternatives for Disabled Young People

This paper presents results from a population based action research study in East Devon of the needs of 383 young people aged 16-25 years with a whole range of impairments and disabilities, and 152 able-bodied controls. A comparison between these two groups is made of their current and past experiences of work and work alternatives. The aspirations and expectations of the disabled young people are also compared with those of their families and service providers, and the preferred occupations of the young people, with various profiles of disability, are explored. Although the analysis pinpoints groups of disabled young people with particularly high levels of employment handicap, there is, throughout the study group, a need for progress out of static or unstable occupational paths. The handicapping features of employment services that impede this progress are discussed together with an examination of society's response to high levels of unemployment among disabled people. The research findings, set within this context, provide a basis for action research now being undertaken in local communities within East Devon to improve employment opportunities.     

Precarious social inclusion: chronic homelessness and impaired decision-making capacity

This paper presents findings from an online survey of practitioners working in the homelessness sector in Australia, that explored practitioner perspectives of policy and service delivery to people with impaired decision-making capacity who experience chronic homelessness. This paper identifies from the research that unrealistic, inflexible and conditional policy, program and service responses from both the public and community sectors restrict positive outcomes for people with impaired decision-making capacity who are chronically homeless. These are significantly affected by sectoral silos whereby service types could not coordinate to facilitate adequate support. Supportive practices constructed of unconditional, flexible and wrap around support are needed along with “no exclusion” eligibility criteria for access to services. New approaches are needed in developing policy and delivering human services to people with impaired decision-making capacity that redress chronic homelessness, and enhance the prosperity of social inclusion for this vulnerable group of people.     

Disability and Self-help: A Case Study of the Spinal Injuries Association

This paper provides an 'insider' view and suggests that organised self-help has a role to play in improving the quality of the lives of disabled people. Through a discussion of the work of the Spinal Injuries Associations, it shows the kinds of services that can be provided, controlled and run by disabled people themselves. Finally, it considers the implications of the self-help approach for the work of professionals and suggests that such an approach should be seen as complementary to medical and administrative approaches.     

‘Now I’d like to sleep with Rachael’ – researching sexuality support in a service agency group home

Many intellectually disabled people living in agency services require significant forms of support to live safe and satisfying sexual lives. Research reveals that despite support personnel working in service systems now holding largely positive attitudes towards sexuality assistance, proactive practice is rarely initiated. This article probes what might lie within this attitude/assistance gap. This investigation reveals a complex picture of practices that rely on intellectually disabled people showing conformation to a ‘couple doing normal’ ideal, so as to be judged capable of being supported. It examines how wider social locations of meaning related to ‘intellectual disability’ and ‘sexuality’ might substantiate these judgement calls. The degree to which it can be said that worker’s own attitudes and values underpin their reluctance to provide support is then explored. Finally, why researchers and practitioners might need to reappraise the complex interactions that shape worker’s practice in this area is discussed.     

Survival and Abuse: What We Can Learn From It

This article is about a journey involving survival, abuse and learning. It is written by two people who have considerable experience of being involved with mental health services; both are currently making an active contribution to social work education. It describes the way in which, in situations of survival and abuse, service users can use their experience and knowledge to learn how to support and advocate for each other. It suggests that the relationships that are built between service users as a result of these experiences can be used to address some of the gaps in service provision. At the same time these relationships can provide mutual learning which can be used to improve the education and training of social workers and other professionals.     

The changing landscape of public service delivery systems for disabled people in China: a Shanghai case study

This article will consider the current development of an emerging contract culture for the delivery of social services and its impact on disabled people in China. The discussion is based on an original qualitative study in Shanghai. The past 30 years have seen dramatic changes in China, which in parts have led to improvements in the lives of disabled people. The China Disabled Persons’ Federation (CDPF) became a key player in delivering these changes with the government. However, the CDPF is being criticized by disabled people for being too bureaucratic and not being effective enough in its delivery of services. One of its responses is to work with newly emerging not-for-profit organizations (NPOs) of and for disabled people. The CDPF has now begun to contract the delivery of some services to such NPOs. It is hoped that this may improve their effectiveness but the development of a contract culture in the delivery of services for disabled people may also be seen to pose a threat.     

New Voices in Iceland. Parents and Adult Children: juggling supports and choices in time and space

This paper deals with parents' perspectives and experiences of bringing up children with a variety of impairments in Iceland, and how they impact the young disabled adults' approach to the status of adulthood. The paper is based on a qualitative study that explored perspectives and experiences of 36 young disabled adults (16-24 years old), their parents, friends and teachers. The purpose of this paper is to share themes related to patterns of parents' reactions and choices when coming to terms with parenting a disabled child, the support they found from their social network and professionals, and their sons or daughters' subsequent views of themselves and their prospects as young adults. The paper includes different perspectives on adulthood and the extent to which the young disabled people expect to reach that status or remain as 'eternal youth' enmeshed in segregated services. Findings show that the type and nature of early support for parents of disabled children is critical for the young adults' approaching adulthood in regular society or expecting to remain in the limbo of 'eternal youth' within segregated settings. Early 'betrayals' may, however, be revisited at each subsequent transition point. Furthermore, parents and their disabled children who struggled for social inclusion could obtain full active membership in society, even against social and physical barriers, and medically defined disability labels.     

Preparation for Practice: Can Philosophy Have a Place in Helping Students Incorporate the Social Model of Disability Within Their Praxis?

This short paper emerges from an engagement with the paper by Morgan in this special edition which argues that the social model of disability can be viewed as a threshold concept which students struggle to ‘get’. I suggest that introducing social work students to philosophical concepts such as recognition at an early stage of their learning about skills, values and anti-oppressive practice, could facilitate the transition over this disability studies threshold, reducing the potential for ritualised performance instead of true understanding. It will be argued that Honneth's account of recognition in particular can be helpful in reducing the risk of psycho-emotional disablism within professional relationships between social work students and disabled service users. However, I also suggest that encouraging students to engage with philosophical questions about personhood and humanity are crucial to maintaining true anti-oppressive practice at a time of financial cutbacks in social work services.     

Sexual professionalism: for whom? The case of sexual facilitation in Swedish personal assistance services

Sexuality is a taboo subject in disability services, leading to insecurity for both service users and personnel about how to handle upcoming situations. In Sweden, there is also a lack of policy in this area, highlighting the need to study sexuality both as an individual and a political, and in this case also, depoliticized issue. A critical feminist policy analysis reveals that norms around disability, sexuality and professionalism in a particular legal, political and cultural context strongly influence the willingness to recognize disabled people’s sexual rights. The Swedish case indicates a need for increased transnational work to develop ethical, professional and non-discriminatory rights-based approaches to sexual facilitation.