Negotiating user preferences, discrimination, and demand for migrant labour in long-term care

The restructuring of long-term care for older people has been marked both by the role of the market and by the role of migrant labor. This article develops the analysis of these processes at the microlevel of the provision of care. It draws on data collected as part of a cross-national comparative study on the employment of migrant care workers in residential care homes and home care services for older people in England and Ireland. The article examines, first, the ways in which divisions of race, ethnicity, and citizenship shape the preferences of service providers/employers and some service users as regards who provides care. Second, it examines how the institutional context of quasi-markets in long-term care shapes the negotiation of demand for migrant labor, the racialized preferences of individual users, alongside the rights of care workers to non-discrimination. It is argued that market-oriented policies for personalization, as well as for cost containment, raise implications for divisions of race, ethnicity, and citizenship in the provision of long-term care. At the same time, those divisions point to the limits of framing care in terms of the preferences of the individual as opposed to the social relations in which care is embedded.     

Disability,social groups,and political citizenship

The problem raised in this article is whether disabled people can and should be considered as a social group with respect to political representation. The question is first discussed on the basis of theories of social and status groups. Next, the article examines how the topic is reflected empirically at the local political level in Norway, expressed by party political leaders and elected disabled representatives. The authors suggest that disabled people can and should be considered as a social group in relation to political representation. Not doing so, they argue, will in effect delay the process towards full recognition and active political citizenship.     

Personal assistance at work: the Visual Assistance Service in Taiwan

'Personal assistance' is a key to equal and full participation by disabled people in society. In Taiwan, there are services provided to 'care for' disabled people, but not to support them at work. In view of this, a pilot scheme called the 'Visual Assistant Service' was developed in 2003. This study explores how the visually impaired users, project workers and Visual Assistants viewed the service. The findings show that this service has improved visually impaired workers' sense of control at work and reduced their enforced dependence on their informal support networks. However, users had little control over the way the services were provided. This reveals a lack of full understanding by professionals with regard to the western ideas of 'personal assistance' and the independent living movement.     

Service Provision for an Independent Life

How is an independent daily life possible for disabled people when relying upon professional service provision and the bureaucratic gate-keeping systems of the welfare state? This article discusses this question in relation to an interview study. Eighteen mobility disabled and 20 service providers in one local setting in Norway were interviewed. We point out at least three categories regarding how independence is interpreted among the disabled: the super-normal, the independent living activists, and those experiencing powerlessness and lack of support. The analysis points out how these categories are constructed in relations between the disabled person, professional service providers and the gate-keeping systems of the welfare bureaucracy.     

Communications Technology—empowerment or Disempowerment?

Developments in communication technology can reduce dependence on others and facilitate independent living for disabled people. Recently developed telephone-based services allow users to call up help quickly, as and when they need it. But the dominant model of provision emphasises vulnerability, assumes a need for protection and imposes rules about appropriate use. The article identifies the influence of manufacturers and providers of communication alarms in perpetuating paternalistic approaches to services for older disabled people and limiting the potential for user determination of need. Emergent models which aim to facilitate user-control face low expectations among users, the entrenched attitudes of providers and the dominance of the market in influencing practice. The mixed economy of social care is likely to increase the gap between providers' interests and users' needs.     

Explanatory models for disability: perspectives of health providers working in Malawi

Health providers’ understanding of disability determines how disabled people are treated, and hence it is imperative to address conceptualisations of disability, as this will contribute to better opportunities and realisation of human rights for disabled people. This article will use data from a qualitative study exploring conceptualisations of disability by 22 health service providers from the total health care system in Malawi, including the professional sector (e.g. medical doctors and nurses) and the folk sector (healers and indigenous practices). We will discuss how these perceptions influence the lives of disabled people, using the case of a health service user with physical and speech impairment as an example. Our data show that health providers largely conceptualise disability according to the medical model for disability, contributing to the exclusion of disabled people. The bio-psycho-social model for disability, largely absent as an explanatory model for disability among our informants, is the most inclusive and rights based.     

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.     

Exploring the Hidden Nature of Gambling Problems among People Who Are Homeless

Abstract

Although people with gambling problems are now recognised to be among those groups of people at increased risk of homelessness, little research has explored their experiences. This qualitative interpretive study explored the experiences of people who were homeless and had gambling problems, and the housing and gambling service providers assisting them. In-depth interviews were conducted with 17 service users and 18 service providers. A key finding was that gambling problems among those experiencing homelessness are often hidden; few people presented to housing services admitting to gambling problems. Shame, stigma, and identity issues were described as the main reasons service users did not disclose their gambling activities. The research highlighted that the relationship between service providers and service users was infused with power imbalances and shaped by social discourses and policies that demand self-responsibility and hinder information sharing between service providers and service users.     

International guidelines and the inclusion of disabled people. The Ugandan story

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi‐structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of representation; policy and legislation issues; and the effects of devolution. Five specific findings relate to how legislation and services can improve: more resources to increase access for disabled people; strong leadership and collaboration between Disabled People’s Organisations (DPOs) funding bodies and governments; awareness raising and training; representation from all impairment groups; and raising the profile of disabled people through further legislation.     

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.     

建设服务型政府,实现公共服务提供主体多元化

服务型政府将满足公民需求作为最高工作目标,不仅要求强化社会管理和公共服务职能,更需要通过体制机制创新来促进公共服务的有效供给。其中,公共服务的供给机制有效与否是政府不同层级和不同部门都要面对的普遍性问题。针对公共服务的混合性和复杂性,以及我国在公共服务提供方面的问题,参考发达国家的政府改革经验,我国应培育多元化的公共服务供给主体,通过将分散、异质性的服务需求与非规模化的服务供给对接来间接满足服务需求。多元化供给机制有利于发挥行政机制、市场机制和社会机制的各自优势,并实现三者的有机结合,从而有利于整合各种社会资源,满足公民的异质性公共服务需求。     

In Whose Service? Technology,Care and Disabled People: The case for a disability politics perspective

This paper discusses the introduction of telematics technologies, which are advancing rapidly in Britain and throughout the world, and which impact increasingly on the lives of disabled people. The authors argue that, to date, technology-based services have been largely, if not exclusively, determined by the interests of care service professionals, technologists and the commercial sector. Missing from the debate has been the perspective of the disability movement, which challenges professional hegemony, and introduces important issues such as choice, control and access to the wider environment. Such a perspective is needed if technological advances are to empower disabled people and not simply provide administrative solutions to the problems of increasingly hard-pressed service providers.     

Application of the International classification of functioning,disability and health in Taiwan: victory of the medical model

Since July 2012, eligibility for disability benefits and services in Taiwan has been assessed based on the International Classification of Functioning, Disability and Health. This study examines disabled people’s experiences of this new assessment system: does it incorporate the social model or a multidimensional understanding of disability and assess the needs of disabled people adequately? In-depth interviews were employed with 24 disabled persons to answer these questions from the perspective of disabled people. The findings show that the new assessment model is still medicalised: social roles and social participation are not considered, the assessment process is dominated by professionals, users’ perspectives are not included and only those who are assessed to have a high level of disability are satisfied with the new system while many others would prefer the old assessment system. These findings have relevance for the analysis of needs assessments of disabled people in different countries.     

Marketing ‘madness’: conceptualising service user/survivor biographies in a period of deinstitutionalisation (1975–2014)

This article aims to present the lived experiences of psychiatric service users/survivors who have experienced the transition from institutional care in the 1970s and 1980s to community care services in the 1990s and post-2000s. By using a biographical narrative approach the study compares service users’ historical experiences with their contemporary experiences of community and residential care. Sixteen biographical narratives were analysed to explore how mental health services have changed over time, from the perspective of service users/survivors, their families and mental health practitioners. The study examines how the closure of NHS mental hospitals in the 1980s, which were replaced in the 1990s with new types of community and residential care services, has changed the lives of service users/survivors. Thus, the article presents these lived biographical experiences which, for the majority of service users/survivors, were defined by the process of trans-institutionalisation rather than de-institutionalisation, within a neoliberal context.     

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.     

Coordinating health, extended care, and community support services: reforming aged care in Australia

Under pressure to maximize the cost-effectiveness of programs, efforts to improve coordination have become increasingly central to the development of the broader health and welfare service delivery system in Australia in the past few years. This article reviews recent experience in two related fields: (1) the coordination of different community care services for older people and people with disabilities, funded by the Home and Community Care program; and (2) the attempt to enhance links between community and residential care services, hospitals, and other health care providers. Why coordination has emerged as such an important issue in the field of community care and, increasingly, across the entire system of what the Australian government now terms health and family services is discussed. A number of measures that have been introduced or are proposed to improve a coordination of services are briefly reviewed. These range from individualistic approaches based on information and referral, through schemes involving gatekeeping, case management and brokerage of services, to models involving the reconfiguration of organizational structures, linkages, and finances. These measures are not mutually exclusive and are increasingly likely to be applied in more complex mixed models of service coordination. It is argued that coordination at the level of direct-service provision is difficult if government policies that direct services lack coordination.     

Coordinating Health,Extended Care,and Community Support Services

Abstract

Under pressure to maximize the cost-effectiveness of programs, efforts to improve coordination have become increasingly central to the development of the broader health and welfare service delivery system in Australia in the past few years. This article reviews recent experience in two related fields: (1) the coordination of different community care services for older people and people with disabilities, funded by the Home and Community Care program; and (2) the attempt to enhance links between community and residential care services, hospitals, and other health care providers. Why coordination has emerged as such an important issue in the field of community care and, increasingly, across the entire system of what the Australian government now terms health and family services is discussed. A number of measures that have been introduced or are proposed to improve a coordination of services are briefly reviewed. These range from individualistic approaches based on information and referral, through schemes involving gatekeeping, case management and brokerage of services, to models involving the reconfiguration of organizational structures, linkages, and finances. These measures are not mutually exclusive and are increasingly likely to be applied in more complex mixed models of service coordination. It is argued that coordination at the level of direct-service provision is difficult if government policies that direct services lack coordination.     

Personal assistance—direct payments or alternative public service. Does it matter for the promotion of user control?

Personal assistance organised as direct payments is seen as an important means for securing user control and freeing disabled people from their reliance on welfare professionals and unpaid carers. The hypothesis put forward in the article is that just looking at whether personal assistance is organised as direct payments or as an alternative service represents an overly restricted approach to judge how the user’s preferences are taken care of. By comparing models of personal assistance in the US, the UK, Sweden and Norway it will show that several other factors influence user control. In the final part of the article the question is raised as to whether paternalism is always negative for welfare service users. Since the users constitute a broad group it might be questioned if the assumption of the service users as rational, well informed and competent to make the best choices is always valid.