Peer assistance for personal assistance: analysis of online discussions about personal assistance from a Swedish web forum for disabled people

This paper describes and analyses a community of disabled people in Sweden that use an online forum to discuss personal assistance issues. The forum is a community of practice (CoP) that has its roots in everyday living with personal assistance. The contributions to the forum were studied over a 4½ year period, including a total of 2755 postings from 146 persons. The levels of the CoP learning system were analysed using the FACE tool, which examines function based on attitude, control and enabling. The results indicate that a learning system was established within the CoP that made it possible for disabled people to complement, confront and counterbalance the influences of existing learning systems, theories and methods of professionals in the area of personal assistance.     

'We're not asking for anything special': direct payments and the carers of disabled children

1997 saw the introduction of the Community Care (Direct Payments) Act in the UK. This piece of legislation introduced a mechanism that enabled local authorities to make cash payments to disabled people aged between 18 and 64 in lieu of directly provided services. The years since 1997 have seen the introduction of additional legislation resulting in direct payments now being an option for many more groups of people, including the carers of disabled children. Following the changes in the legislation, government now wishes to see local authorities significantly increasing the numbers of families that receive direct payments. This paper will report on a research project carried out within one local authority in the north-west of England that has one of the largest numbers of carers of disabled children receiving direct payments in the UK. Using a variety of methods this paper explores how the local authority has made direct payments so widely available to carers and the effect that this has had on their own and their children's lives.     

Chinese disability independent living policy

Despite strong statements on disability rights in Chinese legislation since 1990, independent living policy as experienced by disabled people falls short of the social inclusion goals expected from such a policy commitment. Analysis of empirical research about disabled people's experiences shows that responsibility for independent living rests primarily with disabled people and their families. Only when they have no family does the government provide support, in the form of institutional care. Very little personal assistance or community-based housing is available. Minimum income support and the introduction of social services are slowly addressing the social exclusion of disabled people in China.     

Personal assistance from family members as an unwanted situation,an optimal solution or an additional good? The Swedish example

The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people’s control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families.     

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.     

Independent living and community care: a disempowering framework

The British disability movement has had significant achievements in its struggle for independent living. However, the current community care framework contains many barriers to independent living. This article sets out a conceptual framework for an understanding of independent living and provides an analysis of the barriers posed by the social care system. These range from financial incentives for placing disabled people in residential care, to a failure to address needs relating to employment, parenting and leisure. Disabling attitudes held by social services professionals about 'risk' and 'capacity' are also major barriers. It is clear that, unless the legislative framework is amended to include an entitlement to independent living, disabled people will continue to be denied their full human and civil rights.     

Organizing survival and resistance in austere times: shifting disability activism and care politics in Ontario,Canada

Following the 2008 financial crisis, all levels of Canadian government implemented austerity measures that dramatically restructured welfare, employment, and social service infrastructures. This has significantly affected how disabled people access services. We argue that this restructuring has been an impetus for new forms of disability activism and care politics in Ontario as disabled people fight for services necessary for survival. We discuss examples of politicized forms of care and resistance in Ontario, namely self-care, the Ontario Direct Funding programme, and collective forms of care. We contend that while these examples of care can be practical modes of resistance, they can all be co-opted and restructured to suit neoliberal ideologies and must therefore be continually interrogated.     

Vestiges of the medical model: a critical exploration of the Ontario Disability Support Program in Ontario,Canada

Although ample literature exists on workfare in Ontario, Canada, research on the social assistance programme for disabled people, the Ontario Disability Support Program (ODSP), is relatively scant. What we do know points to similar shortcomings. We present a critical disability study considering four policy domains to explore how disabled people are identified and accommodated in Ontario. Discussing the principles of universal design, we argue for policy design that meets the needs of as many individuals as possible, while accounting for significant human variability. We conclude that the ODSP, in failing to adopt a rights-based framework, violates the dignity and rights of disabled people.     

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.     

Losing Ground: Social Policy and Disabled People in Great Britain, 1980-90

This paper reviews some of the major themes of social policy in Britain over the past decade and examines in detail the impact on disabled people in three major areas: employment; income and social security provision; and the organisation and delivery of health and social welfare services. It will be argued that, despite some superficial similarities between the demands of disabled people and the rhetoric of the New Right for reductions in dependency and control by the state, the dominant policy themes of free market forces, privatisation and reductions in the scope of welfare state services have not served disabled people's interests well. Moreover, attempts to “protect” disabled people within a much reduced welfare state have not been effective and have in any case had the unwelcome consequence of increasing the scrutiny and control exercised by professionals and others. This stands in contrast to the alternative policy agenda articulated by disabled people themselves, which stresses autonomy, integration, an end to discrimination, and rights—to equal chances in employment, to an adequate level of income, and to services which enhance personal choice and facilitate independent living.     

Towards an Affirmation Model of Disability

In this paper we argue that a new model of disability is emerging within the literature by disabled people and within disability culture, expressed most clearly by the Disability Arts Movement. For the purposes of discussion we call it the affirmative model. It is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Critiques of the latter have been consistently expressed as, or interpreted as, re-affirmations of personal tragedy, particularly in relation to impairment. In this analysis the affirmation model addresses the limitations of the social model through the realisation of positive identity encompassing impairment, as well as disability.     

Disability in Uzbekistan: when will the social model of disability arrive?

The topic of this article is the analysis of statistical data of the disability situation in Uzbekistan. The number of new registered people has been decreasing since 2000. On one hand the Government accepts various state programmes on population health care improving and the integration of disabled people into the society. On the other hand, authorities begin restrictive policy concerning disabled people. In the conditions of low living standards state pension has a vital importance for disabled people. Therefore, a number of those who can have it are falling.     

Facilitated Sex and the Concept of Sexual Need: disabled students and their personal assistants

This paper explores the complex issue of facilitated sex, an issue that has received very little attention by the disability movement. It draws on a small, qualitative study of a personal assistance scheme in a British University, and on interviews and correspondence with disabled students and personal assistants. The paper discusses the way in which disabled students define their sexuality as a 'need', but highlights how this view is not shared by those providing assistance. Personal assistants are more inclined to define sexuality as a sexual 'want' and to conflate physical impairment with either asexuality or a limited potential for sexual activity. The discussion concludes by suggesting that, whilst the issue of facilitated sex is morally complex, the sexual needs of disabled people are more likely to be met if the issues of sexuality and facilitated sex can be discussed and negotiated, in a frank and open manner.     

Nothing to be had 'off the peg': consumption, identity and the immobilization of young disabled people

Contemporary sociology makes the case that the concepts of society and social structure are past their sell-by dates. Our world is marked by impermanence and social life is characterised by mobilities. Even self-identity has become liquid. Social actors use consumption artefacts and services to re-design themselves in ways that are commensurate with their deepest desires. However, we argue that disabled people are unlikely to recognise themselves in these debates. Young disabled people, in their quest for identity and consumer citizenship, meet with ubiquitous barriers and closed markets. In their experience choice and mobility are rhetorical. They encounter immobilization and exclusion from the kinds of consumer lifestyles that their non-disabled peers take for granted. Furthermore, we argue, that at the heart of consumer culture is an aesthetic of youthfulness that is profoundly alien to 'the anomaly'. The signifiers of 'youth' and disability are in profound tension. Cultures of consumption are constituted in ways that mark young disabled people off as outsiders who need not apply for entry.     

Clothing Workshops: Shaping Services to Individual Needs

The government's community care proposals give importance to the role of voluntary and not-for-profit organisations in meeting the needs of elderly and disabled people, and underline the need for local authorities to foster their development. To do this, they must ensure their financial security. This paper reports the decline of the specialist clothing workshops which, because of changes in government funding, have dwindled from more than 20 in 1988 to five at present. The importance of this service to disabled people is discussed. Although many value skilled advice and sympathetic personal attention, for a few there is no other alternative than specially made or adapted clothing. It enhances self-esteem, independence and participation, as well as practical benefits. However it is an expensive service, so that subsidy is essential. Recommendations for the future of the service are outlined.     

‘The dying of the light’: the impact of the spending cuts,and cuts to employment law protections,on disability adjustments in British local authorities

Adjustments to working arrangements and the working environment have enabled organisations to recruit and retain valuable staff and helped disabled individuals to work and progress in their careers. The qualitative study reported in this paper indicates that generally good adjustments-related practice across 33 British local authorities was beginning to deteriorate under the impact of government spending cuts; and was at further risk from the dismantling of legal protections. The findings have implications for local authorities, but also for national policy-makers and those wishing to influence them.     

Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.     

Do public representatives in local governments know about “disability rights” in Pakistan? An awareness assessment case from Southern Punjab

Local self-government systems have been adopted in many countries to supervise local interests in development and provide a range of goods and services to localities. It is believed that awareness of certain issues itself guides duty-bearers to reshape and divert development in a certain direction. In Pakistan, elected representatives in district governments are the key duty-bearers at the local level. Hence, their awareness is indispensable to decision-making for local development and, thus, it is pertinent to assess it from a disability rights perspective. In-depth information collected from two districts has reflected that most of the public representatives are ill-informed about disability, day-to-day problems of disabled persons and their rights, which results in inadvertently disability-biased local development planning. An overriding impression gained from the results is that raising elected representatives’ awareness on disability and the rights of disabled people is imperative to embracing disability rights practice in local development.     

Rights discourses in relation to education of people with intellectual disability: towards an ethics of care that enables participation

In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses; namely, rights to full participation, rights to special services and rights to protection. These draw off a social model, a medical model and a protective model, respectively. We note that these discourses may be set up in contestation with each other. However, we argue that they can be seen as complementary if viewed within an ethics of care that enables participation. Within this conceptualisation, participation is viewed within relations of care but is subject to a critique that examines the role of context and disciplinary power in constructing dependency.     

Personal assistance in Sweden

This article provides an overview of the Swedish personal assistance program for persons with severe impairments, introduced in 1994. The personal assistance program makes it financially possible for people with severe disabilities to appoint a personal assistant, by themselves or through a provider, to create support adapted to the individual and to optimize the person's influence over how the support is arranged. The article describes how the reform has increased the opportunity for people with severe disabilities to choose their own way of living. Overall, the personal assistance has enhanced the quality of life for people with severe disabilities and their families.