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Being in Control: Personal Budgets and the New Landscape of Care for People with Learning Disabilities
Abstract
A central element in the shift to a ‘personalised’ care system in the UK is the opportunity for disabled people to hold and manage budgets for the purchase of care and support, to replace local authority services. The delivery mechanisms of ‘Direct Payments’ and ‘Individual Budgets’ have allowed many disabled people to control their care and support better, and have promoted their social inclusion. However, the particular contexts and issues for people with learning disabilities in holding personal funding have been little considered. The paper sets out the broad themes of the introduction of personalised care, and examines the limited use by people with learning disabilities of Direct Payments and the subsequent development of Individual Budgets. The paper considers the challenges to the nature, spaces and relations of care commonly used by people with learning disabilities that personal budgets present, in particular for those with more severe disabilities. The paper concludes by suggesting ways in which people with learning disabilities can use personal budgets, whilst maintaining the collective relations and spaces of caring desired by many.
... Growing dissatisfaction particularly by working age disabled people, about the rigidity and unreliability of local authority services led to sustained demands by disabled people for opportunities to live independently and exercise greater choice in the provision of care and support (Hall, 2009). The issue of 'choice and control' also affects people with learning disabilities (PwLDs), 25% of whom live in poverty (Emerson et al., 2005) and over 50% of whom have no control over their finances (Abbott and Marriott, 2012). ...
... However, Cambridge (2008) submits that personal budgets have been crucial to the de-institutionalization of individual services and support across welfare regimes such as England, Netherlands, Belgium, Germany and Sweden. This is despite Hall's (2009) conviction that personal budgets offer no political clout crucial for promoting, developing and investing in better forms of caring that place less emphasis on what he calls 'commodified collective' patterns, which, arguably, remain key to a progressive ethics of care for PwLDs. ...
Personal budgets are a part of the transformational change in social care, which the Care Act 2014 includes into law for the first time, thereby making it the standard for people with care and support needs. This paper critically explores evidence for the impact personal budgets are having on people with learning disabilities, most of whom would require support to live a fulfilling life. Considering that their lives are interwoven with those of the people who care for them, the research also seeks to know if the impact on carers differs.
To be able to do this, a systematic review of 10 papers that met the inclusion criteria was carried out using the EPPI-Centre methodology as well as the Social Care Institute for Excellence guidelines, while extracted data were analyzed using narrative synthesis.
Though findings from the reviewed reports show positive outcomes for people with learning disabilities, it was clear that opportunities for choice and control would, for now, be restricted by resources. However, if personal budgets are correctly implemented, they could help social workers reconnect to the values of their profession.
The small numbers of research participants in the studies impose methodological limitations, which make generalizability cautionary. It is therefore the view of this paper that further research would need to be undertaken into how to truly empower people with learning disabilities to be more in control of their lives. Being truly in control gives PwLDs the opportunity to improve their quality of life.
... In analyses of deregulated care markets (Hall, 2009(Hall, , 2011, geographers commonly understand competition as a background against which they analyse service users' experiences of increasingly individualised service provision and workers' experiences of increasingly precarious work. These approaches have created important insight into the shortcomings of market dynamics for disability inclusion, as it has shown, for instance, that it encourages an understanding of cost reduction as an 'improvement', even when this goes at the expense of inclusion or quality (Macpherson et al., 2023). ...
... Personalised support for people with intellectual disabilities is intended to place them at the centre of decision-making about their lives and promote their self-determination in terms of how they want to live and receive support (Christensen 2009;Christensen, Guldvik & Larsson 2013;Christensen & Pilling 2014;Fisher et al. 2019). A personal budget is a funding and support model that can facilitate implementation of personalised support (Hall 2009). It consists of allocated money to a person based on an assessment of their needs and is intended to empower them (Christensen 2009;Horsell 2020). ...
Support organised through a personal budget aims to promote people's choices in how they arrange their support. Participation in choices of people who use little or no verbal speech to express themselves requires that support workers use personalised communication. This article explores how support workers use personalised communication to prioritise the choices of people with intellectual disabilities about organising support through a personal budget. It applies Gormley and Fager's framework of dimensions for personalising communication to analyse ethnographic data from four people with intellectual disabilities using personal budgets and their support workers. The analysis found that workers promoted people's participation in choices about their support when they focused on how people preferred to express themselves. Support practice, policy and research that target people's communication preferences in making support arrangements can have direct impact on their satisfaction with the arrangements and the quality of their personalised support.
... The intended benefits of direct payments for people with a learning disability have been contested (Hall, 2009;Hall and McGarrol, 2012). However, in the case of care farms they may have provided an opportunity for people with a learning disability to appropriate these spaces and experience a space of wellbeing that might not have been available to them previously. ...
People with a learning disability in the UK are increasingly choosing to spend their time on ‘care farms’ but there is limited research examining these spaces from their perspective. A qualitative research design was used to ask eighteen of these clients how care farms contributed to their health and wellbeing.
For these participants care farms can be understood, using Fleuret and Atkinson's (2007) framework, as a ‘space of wellbeing’ and as a positive and life-enhancing space.
Positive language was used by participants to describe the farms contrasting with ne gative language describing other spaces and activities. Farms were identified as contributing positively to mental and social wellbeing.
... Critics fear that it will favour the articulate, informed users and point out that for example the particular contexts and issues for people with learning disabilities have been little considered. In the UK, such a criticism has been marked against the direct payments models which are a main ingredient in the arrangement with Individual Budgets for disabled people (Hall 2009;Wilberforce et al. 2011). Critics fear that persons with competence and capacity to manage the arrangement will be favoured while collective care services provided by the local authorities and which are desired by for instances persons with learning disabilities will be replaced or undermined. ...
The concept of empowerment has been closely linked to the development of personal assistance (PA) and the independent living ideology. However, the use of the concept of empowerment has been disputed as it has begun to be used in both the marketization of the PA scheme and as a government strategy to promote active partnership. In this article, we take a closer look at the concept of empowerment and how different approaches capture different relationships between the state and the users of PA. We distinguish between empowerment as a form of resistance, as a form of consumer choice, as co-productions and as a liberal strategy of dominance in the modern society. The analysis indicates how the different notions of empowerment run alongside each other in the development of the PA arrangement in the Scandinavian countries and that the different perspectives will have different consequences when PA is to be analysed as a tool of liberation for disabled people.
This paper analyzes how personalized disability support interacts with the uneven and incomplete neoliberalization of community organizations and how this affects access and inclusion for people with intellectual disability. In many countries, the introduction of individual budgets for disability support has shifted some responsibility for community inclusion onto individuals with disability and their carers. Concurrently, geographers have shown that community organizations have adopted commercial and bureaucratic qualities while continuing to facilitate opportunities for active citizenship and participation. This paper highlights how personalized disability support funding interacts with community organizations that have adopted some neoliberal ideas about responsibility and entrepreneurialism. Drawing on in-depth interviews with people with intellectual disability and the managers of community centres in the State of Victoria, Australia, the paper analyzes how the resultant community spaces shape the terms on which people with intellectual disability participate. The paper demonstrates that individual support packages issued by the federal government turn people with disability into entrepreneurial employers and that this comes up against a branch of community organizations that has come to understand its responsibility for inclusion in entrepreneurial terms. The paper offers avenues for future geographical work on disability inclusion and for understanding neoliberalization that go beyond direct state interference.
People with disabilities have a difficult and ambiguous relationship with housing and home. This fact can be explained by the processes of economic marginalisation, cultural stereotyping, spatial segregation, and political disenfranchisement that have shaped the lives of disabled people in many Western societies. The association of disabled people with 'institutional care' offers perhaps the clearest example of the population's struggle with regard to housing. In recent decades, institutional care has been replaced by an emphasis on community living, although the legacies of the institution as well as current challenges in the provision of accessible and affordable accommodation continue to limit the housing choices of many disabled people.
With the increased commitment towards personalisation in adult social care, allied with more ‘austere’ funding of social services and day centre closures, support is increasingly becoming less placement-driven and woven into everyday spaces within the community. Consequently, support is being re-framed from ‘care’ in formal settings towards an effort at enabling meaningful lives in a post-service landscape nested in local neighbourhoods and ordinary spaces. This paper explores what it means to live in a ‘welcoming community’ within the context of day care centre closures from the perspective of adults with learning disabilities. It draws on empirical data collected from focus groups and photo diaries with adults with learning disabilities on their experiences of negotiating support arrangements. We identify a process of ‘self-building’ safe havens in ordinary British spaces, including allotments, marinas and ‘fish and chip shops’, and argue that adults with learning disabilities are reclaiming the welcoming communities agenda.
Discussions on the various issues surrounding the provision of health care within the framework of human geography and social welfare are presented. These issues are centred on the on-going debate on the ethics of care in relation to social differences, beneficence, citizenship, rights and responsibilities.
After years of activism by disabled people's organizations, the Community Care (Direct Payments) Act 1996 made Direct Payment (DP) schemes a reality. Proponents of DP argue that it allows greater freedom and control for those people using it, but as these programmes only came into effect in 1997, few studies have tried to substantiate these claims. This paper reports on a two‐year evaluation of two DP schemes in Wales. Using primarily users' feedback the paper focuses on the effects of DP and difficulties encountered, as well as why people chose—or did not choose—DP in the first place. User responses indicate a broad range of beneficial outcomes, including improved self‐esteem, increased control over lives, deeper and more lasting relationships, and new interpersonal, vocational and lifestyle opportunities, as a result of the greater flexibility and freedom of choice enabled by DP. Family carers expressed similar satisfaction with DP schemes, also citing greater freedoms as a result of increased flexibility. While some potential users expressed concern over the administration of a DP scheme, users found that, with support from a user driven Independent Living Scheme, the administrative burden was manageable, and that ultimately the DP scheme was a welcome approach to support.
Direct payments enable individuals to purchase their own care rather than have directly provided services. This article unpacks the complexities involved in the implementation of direct payments by addressing the need to reconcile the strong evidence of their benefits with emerging concerns about the wider consequences of their implementation. One practice that highlights the conflicts at the heart of direct payments is the employment of personal assistants. While directly employing personal assistants offers maximum benefit for recipients, it also produces the strongest concerns. Therefore, an understanding of the context of direct payments, specifically the practice of employing personal assistants, is used to explore these complexities in greater depth. The discussion concludes by arguing for a more critical awareness of the wider context in which direct payments are being developed in order to understand how this context can open up or limit opportunities for greater self-determination. It suggests a number of factors that need to be addressed to ensure that direct payments continue to be a progressive strategy. These include reconciling conflicting ideologies such as those advocating individual choice and/or collective provision; the need for political action to secure adequate resources; and the development of alternative strategies such as cooperatives to address the collective needs of direct payment recipients and workers.
Direct payments have moved to the heart of the government's drive for increased user choice. At the same time, implementation has remained disappointing. This article explores the demand, supply and related factors associated with patterns of local variability in uptake and intensity of care package provision. Statistical analyses are conducted for key client groups – people with physical disabilities, older people, people with learning disabilities and people who use mental health services – using data for England from 2000–01 to 2002–03. The results suggest that direct payments variability reflects a complex array of factors, both within and beyond the control of local public actors. In particular, while local policy preferences appear to shape the extent of direct payments growth, the results also demonstrate that understanding levels of activity requires attention to local circumstances.
I see direct payments, personal cash budgets, and other ways of extending choice and control as key to developing social care for the twenty-first century (Parliamentary Under Secretary of State for Community Care, Department of Health, 2004).
Direct payments have been heralded by the disability movement as an important means to
achieving independent living and hence greater social justice for disabled people through
enhanced recognition as well as financial redistribution. Drawing on data from the ESRC
funded project Disabled People and Direct Payments: A UK Comparative Perspective,
this paper presents an analysis of policy and official statistics on use of direct payments
across the UK. It is argued that the potential of direct payments has only partly been
realised as a result of very low and uneven uptake within and between different parts
of the UK. This is accounted for in part by resistance from some Labour-controlled local
authorities, which regard direct payments as a threat to public sector jobs. In addition,
access to direct payments has been uneven across impairment groups. However, from a
very low base there has been a rapid expansion in the use of direct payments over the
past three years. The extent to which direct payments are able to facilitate the ultimate
goal of independent living for disabled people requires careful monitoring.
Government policy frameworks on the support of disabled people can often be difficult to 'read', as they contain contradictory elements that simultaneously support and confront social processes that create inequalities and oppression. Valuing People (VP), the UK government's policy framework for learning disability (intellectual disability), provides such a context for work that enhances learning-disabled people's inclusion in community and society, and to reverse some of the systemic disadvantage they have experienced. However, as an uneasy amalgam of the progressive and the neoliberal, the romantic and the practical, it has been difficult to evaluate in order to use its opportunities and minimise its dangers. This article attempts to decode VP in terms of ideologies in human services, and the current New Labour policy mix. Its emphases on Person Centred Planning, Direct Payments and employment will be analysed to try to establish what VP means, and to suggest more adequate priorities. This analysis might also be relevant to other sectors where there is a similar problem of decoding their particular policy context.
This metadata relates to an electronic version of an article published in Disability & society, 2006, vol. 21, no. 4, pp. 299-313. Disability & society is available online at informaworldTM at http://www.informaworld.com/smpp/content~content=a747692306~db=all~order=page
In New Zealand, the role of voluntary agencies in healthcare provision has gone through significant change in recent years. Overall, there have been changes in the relationship between the state and the voluntary sector, with tensions evident between central and regional/district levels of decision making as health funding has been devolved but central constraints maintained. This chapter describes the changing environment of health non-governmental organisations (NGOs) involved in the health and disability sector in New Zealand under state restructuring from the mid-1980s to 2005. First, it discusses the emergence of a representative health and disability NGO collective organisation, which are supported by the state and with access to high levels of government and the bureaucracy. Second, it describes how three key groups of agencies — community mental health, primary healthcare, and public health agencies — have dealt with specific issues in different ways. Third, it explains how decentralisation resulted in variable regional responses, especially in service organisation and contracting. The introduction of the internal market in the 1990s resulted in the rapid growth of health NGOs, as well as in the emergence of substantial regional differences in contracting relationships and public accountability. At the same time, however, the new decentralised contracting environment, while encouraging innovation, undermined good service practice by making it more difficult for health NGOs to cooperate with each other and represent their communities effectively.
What is good care? In this innovative and compelling book, Annemarie Mol argues that good care has little to do with 'patient choice' and, therefore, creating more opportunities for patient choice will not improve health care. Although it is possible to treat people who seek professional help as customers or citizens, Mol argues that this undermines ways of thinking and acting crucial to health care. Illustrating the discussion with examples from diabetes clinics and diabetes self care, the book presents the 'logic of care' in a step by step contrast with the 'logic of choice'. She concludes that good care is not a matter of making well argued individual choices but is something that grows out of collaborative and continuing attempts to attune knowledge and technologies to diseased bodies and complex lives. Mol does not criticise the practices she encountered in her field work as messy or ad hoc, but makes explicit what it is that motivates them: an intriguing combination of adaptability and perseverance. The Logic of Care: Health and the problem of patient choice is crucial reading for all those interested in the theory and practice of care, including sociologists, anthropologists and health care professionals. It will also speak to policymakers and become a valuable source of inspiration for patient activists.
It is possible now to identify a small field of geographical studies exploring how space, place, environment and landscape are bound up in the worlds of people experiencing mental health problems. Some of these studies take seriously the institutions which have been provided to shelter, control, care for and even cure such people, and this interest has often touched upon the rise of the 'asylums' in Europe and North America (chiefly as an eighteenth- and nineteenth-century phenomenon). This paper surveys the geographical literature tackling asylums and other mental health facilities, and then offers an interpretation of the theoretical claims and substantive research undertaken in this respect by Michael Dear and various co-workers. Running through the paper is an argument about the need for studies of 'asylum geographies' to be attentive to what Gunnar Olsson terms 'ontological transformations' between thoughts and things.
We describe research done in the London Borough of Tower Hamlets under the supervision of the local Coalition of Disabled People. It involved three different client groups-people with learning difficulties, mental health service users and those with physical disabilities. Few of these service users, their carers and staff had any experience or knowledge of people with disabilities receiving cash to purchase their own support. The study focused on several issues: how to provide effective information; what sorts of support could direct payments purchase; how could it be accessed; how could users handle the money; how could it all be evaluated? Most carers, staff and users considered this radical idea favourably, but were suspicious of their own local authority and would want independent systems of supervision and monitoring, accountable to other users, rather than professionals.
The development of direct payments has been greatly influenced by the combined pressure of governments' determination to create a mixed economy in social care and action from the Disability Movement in its quest for independent living and social justice. The extent to which the ideals of these perspectives have been realised by the reality of direct payments is unclear. One of the outcomes of the shift to a market economy is that social care provision is treated progressively as a commodity to be bought and sold. This paper charts the background to cash payments, explores these issues and considers what the future may hold.
The Community Care (Direct Payments) Act 1996 enables local authorities to make cash payments to service users with physical and sensory impairments and learning difficulties under the age of 65. This gives users control over money spent on meeting their community care needs, rather than receiving services arranged for them by the local authority. The policy is often represented as a victory for the disability movement and as a push towards user empowerment and social justice. However, direct payments also need to be understood as part of a wider market discourse prominent in the restructuring of welfare. Therefore, a growing culture of localized care markets with increasing ideological diversity may ultimately erode its scope for a meaningful level of user empowerment. By examining these market and social justice discourses, this article draws on analysis of two local authority approaches to direct payments and examines the level of meanings of control.
This article examines the link between a justice and rights discourse and disability policy and practice. Specifically, it considers social worker responses to direct payments, a policy which has been linked to a discourse of social justice and rights. The article initially considers the nature of justice and rights, arguing that these can plausibly be seen to be grounded in the idea of autonomy and that a rights or justice based social policy and practice must be grounded in the protection, enhancement and development of the capacity for autonomous action. The article then presents partial findings of a research project, which sampled social workers' views and attitudes towards direct payments in three local authorities. The findings suggest that social workers are aware of the link between direct payments and autonomy and are generally very supportive of the move to a rights based approach to policy and practice as evidenced by programmes such as direct payments. The paper also concludes that structural constraints limit social workers' ability to fully function from a rights based approach to disability.
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.
Despite the empowering nature of direct payments, progress has often been slow and uneven, with different areas of the country responding less enthusiastically than others to the new reforms and with different user groups getting less access to payments than others. While numerous barriers have been identified, a key factor is the ignorance and anxieties of front-line social work practitioners, who may sometimes be suspicious of the way in which direct payments will affect their work and jobs. In addition to this, this paper proposes a further and more engrained obstacle to progress, highlighting the way in which the making of cash payments to individual service users re-establishes a link between social work and financial matters that was deliberately and seemingly irreversibly severed during the welfare reforms of the 1940s. As a result, those seeking to promote direct payments need to be aware of the magnitude of the task ahead of them in seeking to overcome workers' opposition to this new way of working.
This article is based on extracts from a forthcoming introductory textbook, Social Work and Direct Payments, published by the Policy Press. Throughout, the argument employed is that of the authors alone from their reading of the historical and cultural context in which the social work profession has developed and should not be seen as the only possible interpretation of the events or period in question.
Background The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities.
Materials and methods The paper draws on a UK-wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families.
Results Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family.
Conclusions The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.
• The rise of new public management has seen the role of the social worker becoming increasingly administrative and less about face to face contact with service users.
• When commissioning managers seek to help people with learning disabilities plan their services, who actually makes the decisions?
• Direct payments are proposed as the answer for people with learning disabilities to take the lead, but is this a real shift in power from managers to service users?
This paper examines what commissioning and contracting means for people with learning disabilities. It asks if the voices of service users are heard when it comes to planning their services and, more significantly, are their choices respected and acted upon by commissioners? The government believes the introduction of direct payments will change the way social care is administered, by placing both the decision-making and funding, firmly in the hands of people with learning disabilities. However, the question remains as to how far this can be successful, considering the complicated administration and financial processes involved.
The paper explores new ground in terms of research by investigates the effects that new public management, in the form of commissioning and contracting, has on the lives of people with learning disabilities. It looks at the relationship between the service user, care manager and commissioner, and asks whether management structures help individuals or actually create further barriers to participation and inclusion.
This paper seeks to critically assess the impact made by the introduction of commissioning and contracting as a new culture of social care in learning disability services. It offers an evaluation of the growth in importance of the user as consumer. Does the commissioning and the contract process give users with learning disabilities a greater influence over their services and ultimately their lives? It is suggested that far from empowering people with learning disabilities to have a say in the services they want, the emerging culture of business contracts and new public management transfers power firmly back into the hands of professionals making the decisions. Social work practice is changing in response to major shifts in social trends and at the behest of market values. Traditional models are being rejected and the challenge for social work is to adapt itself to operate within a competency based paradigm. The paper argues that at the centre of this new culture is a government use of a system of performance management that successfully drives down cost.Thus there remain contradictions between the adoption of a mixed economy of care; services planning; consumerism; resource constraints; and the communication difficulties experienced by many people with learning disabilities.
This article suggests it is important to unpack the notion of “empowerment” in community care so that the position of those who provide “hands-on” care is scrutinised alongside the empowerment of “users” of care. The particular case of the forthcoming Direct Payments legislation, whereby disabled people will be able to opt for cash rather than services and become employers of personal assistants, is considered. It is argued that both employers and employees in these care relationships are likely to be on low incomes, that the work is likely to be insecure and possibly unregulated, that there might be a problem of labour supply, and that in the long run, this form of employment might generate hardship for the workers so employed. Other forms of reconciling the interests of both users and “carers” are considered.
Background Inclusion is one of four policies for people with disabilities in the UK. Criticisms of its three key attributes – mainstreaming, independent living and employment – are reviewed.
Methods This study of 28 young people, most with severe intellectual disabilities, investigated engagement with inclusion at their transition to adult services. Data were collected from the young people where possible; from their carers, mostly parents; and from professionals responsible for brokering transition. Narrative analysis of this material investigated ways in which respondents did or did not engage with the goals of inclusion as defined in various policy documents.
Results Both mainstreaming and independent living were experienced as moral imperatives which generated tension for many respondents. Employment was associated with less tension, probably because only a minority of respondents considered it salient. Possible alternative goals invoked by parents/carers and professionals were meaningful activity and same‐age social relationships.
Conclusions There is a need to acknowledge the moral pressures and judgements arising from inclusion policy that complicate decision‐making at transition and to shift the moral horizon away from individual attainments and towards the activities and relationships that take people beyond themselves.
Across the decades geographers have been concerned with questions of our ethical responsibilities to care. It would seem that care is nothing new in geography. I argue however, that contemporary societal shifts are extending market relations into caring realms of our lives and that we are witnessing reductions in public provision of social supports. These twin trends have made care a more pressing concern and have simultaneously marginalized care from view. Geographers are well positioned to draw attention to these trends and I urge us to think about our responsibility to care about these issues, and the geographies that they make. I ask us all to think about our responsibilities as geographers to pose questions in the face of (i) market extensions, (ii) currently pervasive discourses of personal responsibility (for poverty, inner city decline, unemployment, etc.), and (iii) the withdrawal of public support from many crucial arenas. Care ethics focuses our attention on the social and how it is constructed through unequal power relationships, but it also moves us beyond critique and toward the construction of new forms of relationships, institutions, and action that enhance mutuality and well-being. I consider how our research, teaching, and professional practices might shift in conversation with care ethics. Care ethics suggests that we build spatially extensive connections of interdependence and mutuality, that we attend to the ways in which historical and institutional relationships produce the need for care (extension of market relations; famine, unnatural disasters, environmental and cultural destruction), and that we take up social responsibility in our professional practices.
Book Review
Virginia Held: The Ethics of Care. Personal, Political, and Global. Oxford, New York, Oxford University Press 2006, 211 s.
The book presents the ethics of care as a promising alternative to more familiar moral theories. The ethics of care is only a few decades old, yet it has become a distinct moral theory or normative approach, relevant to global and political matters as well as to the personal relations that can most clearly exemplify care. The book examines the central ideas, characteristics, and potential importance of the ethics of care. It discusses the feminist roots of this moral approach and why the ethics of care can be a morality with universal appeal. The book explores what is meant by "care" and what a caring person is like. Where such other moral theories as Kantian morality and utilitarianism demand impartiality above all, the ethics of care understands the moral import of ties to families and groups. It evaluates such ties, differing from virtue ethics by focusing on caring relations rather than the virtues of individuals. The book proposes how values such as justice, equality, and individual rights can "fit together" with values such as care, trust, mutual consideration, and solidarity. In considering the potential of the ethics of care for dealing with social issues, the book shows how the ethics of care is more promising than other moral theories for advice on how limited or expansive markets should be, showing how values other than market ones should have priority in such activities as childcare, health care, education, and in cultural activities. Finally, the book connects the ethics of care with the rising interest in civil society, and with limits on what law and rights are thought able to accomplish. It shows the promise of the ethics of care for dealing with global problems and with efforts to foster international civility.
Since coming to power, New Labour has embarked on a programme of modernization. Few areas of state activity have been more visibly subjected to New Labour’s modernization agenda than the personal social services. Local authority social services departments have largely ceased to exist as separate organizational entities. However, modernization has also required that the relationship between state and citizen be reconstructed. This is evident in New Labour’s vision for adult social care which envisages a move towards individual budgets. The individualizing nature of such schemes may be thought hard to reconcile with the discourse of integration and partnership prominent elsewhere. However, a key linking concept is that of ‘person-centredness’. It is often assumed that this simply means that public services become more flexible to meet the needs of ‘the person’. This paper uses the example of direct payments to demonstrate how modernization also requires flexibility of ‘the person’. It would appear that inherent in New Labour’s project of modernization is the assumption that the modern citizen should be both managerial and entrepreneurial. What were once public responsibilities are being transferred to the individual. The implications for the users of adult social care are discussed.
The policy and theoretical discourses of deinstitutionalisation have been centred on a fundamental normative polarity that opposes the 'dehumanising' institution to the more humane environment of community care. We reconsider this moral polarity by drawing upon three philosophical currents that emphasise the need for inclusive and compassionate governance. We argue that there are strong political - ethical and practical reasons why inclusive governance can improve human-services planning and delivery. First, by recognising and addressing the vulnerabilities of nonservice users, an inclusive ethics is most likely to maximise the welfare of all groups with interests in community care. Following from this, an inclusive ethics is more likely to foster the broad social support that we argue is necessary for successful community care. Third, an inclusionary outlook has the potential to broaden the design of community-care services and facilities. An inclusive ethics would radically open up policy design to a range of other service options that account for the complexities of place, policy context, and the needs of key interest groups, such as service users, workers, relatives/advocates, and local communities.
In New Zealand, the process of deinstitutionalization is continuing to unfold as a specific manifestation of welfare state restructuring rather than as a discrete process within the health care sector. In this paper we consider the geography of mental health care in Auckland, New Zealand's only metropolitan city. Here, a highly fluid and competitive housing market has profoundly (re)shaped the opportunities for community care. We report on findings from a survey of representatives of the key agencies providing mental health care in central Auckland. We argue that the re-placing of mental health care into the community has often involved the separation of residential and treatment issues, to the detriment of the communities, institutions and (especially) individuals involved. We trace this fragmentation back to the primacy of the ideology of restructuring over the philosophy of deinstitutionalization. We build our argument around a discussion of the Mental Health (Compulsory Assessment and Treatment) Act 1992 and the apparent subordination of the Act to the emerging of a 'contract state' and broader legislation, such as the Resource Management Act 1991, the Privacy Act 1992 and the Commerce Act 1986, which underpins the re-regulation of New Zealand society.
There is a growing body of work on geographies of deinstitutionalisation and its consequences, but the weight of this scholarship has focussed on people with mental health problems and physically disabled people. With only few exceptions, the 'post asylum geographies' of intellectually disabled people remain neglected by geographers. We advocate a redressing of this imbalance. First, we assess reasons for the relative absence of 'intellectual' considerations in geographies of disability. We then consider ways in which the full spectrum of those with mental differences might be included in geographical research. We conclude that Wolpert's call 25 years ago to 'open closed spaces' is just as applicable to our efforts to conceptually link health, place, and disability, as it is to the material welfare of vulnerable groups in society.
This paper draws on interviews with users of direct payments and focus group discussions with the personal assistants (PAs) who assist them with personal and daily living activities. It discusses the benefits and the drawbacks of directly employing such assistance, from the perspectives of both the purchasers and the providers of these services. The paper shows that direct payments can enable disabled people to purchase a much wider range of flexible help, better continuity, greater control and an enhanced quality of life, compared with conventional services. PAs also valued the trust and close relationships they developed with their employers. However, these benefits were much less marked when direct payment users recruited and employed personal assistants through care agencies. On the other hand, both direct payment users and PAs also sometimes experienced difficulties in managing the relationships between them. Some of these problems could be alleviated by changes in the support provided by direct payment schemes themselves; other difficulties were more intractable and arose from the nature of the work and the close relationships which it entailed. The paper recommends a number of measures which could reduce the risks and vulnerability of both disabled direct payment users and personal assistants, without reducing the enhanced quality of life which direct payments can confer.
People with learning disabilities (PWLD) are one of the most marginalised groups in Western society. Social policies attempting to redress this situation focus on their 'reinclusion' into mainstream socio-spaces through engagement in 'normal' activities, primarily paid employment and independent living. Drawing on group interviews in Scotland, the paper develops a nuanced account of the lives of PWLD, exploring their experiences of exclusion and seeming 'inclusion', and also the alternative spaces and networks of inclusion developed by many PWLD. The paper argues that the situations and experiences of exclusion/inclusion are complex and 'entangled', shaped by the socio-spatial contexts within which PWLD live. The paper 'reimagines' social inclusion as a transformation of mainstream social spaces to incorporate PWLD, achieved through self-advocacy.
- Glasby J