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The Introduction makes an argument for the importance of disability as an analytical category and sets out an agenda for doing this work. The basis of this argument lies both in the historiographical demand for this kind of analysis, and the historical, political and theoretical importance of including disability as a key concept in discussions of the nineteenth-century British empire. The relationship between disability and race is an element to this and historical examples are used to demonstrate this argument. The introduction also defines key terms that are used throughout such as ‘disability’, ‘disablism’, ‘ableism’ and sketches out the scope and structure of the book.
This chapter examines how the English Care Act deals with care, support, paid work and disability, particularly how it addresses the tension between supporting women’s unpaid care and their paid work participation and the tension between supporting carers’ claims and supporting disability rights claims. In light of its apparent support for multiple activities and multiple constituencies, a purpose of this second case study analysis was to explore opportunities to build on elements of the policy that align, or at least partly align, with the rights-based approach proposed in this book. The analysis in this chapter indicates that the policy has positive features but is far from a panacea. It applies only to adults, and only a small subset of care and support users and carers with the greatest level of need can access financial support. While the reforms purported to enhance individuals’ self-determination and choice in a manner consistent with disability rights claims, they were also consistent with neoliberal goals of shifting responsibility from the state onto individuals and the market. In the wider context of austerity-related reductions in local authorities’ resources, the policy can make only a modest contribution to the realization of care and support rights.
The English Care Act recognizes the possibility that carers may be both unpaid carers and paid workers. It also recognizes both care and support users and carers as potential rights-holders on the basis of their needs and/or responsibilities and partly contemplates that people may be in both roles at the same time. While its gaps and limitations mean many people cannot access rights-based support, these policy features do offer a scaffolding for developing a policy that aligns with the six principles proposed in this book. This chapter sketches the reforms that would be necessary to overcome the limitations of the policy in terms of its inadequate support for unpaid care and paid work, lack of recognition of the gender division of labor and inadequate responses to the claims of carers and people with disabilities. These include removing the ‘hard’ eligibility threshold and introducing greater flexibility and user control in assessment and eligibility determinations; ensuring that budgets are sufficient to ensure decent pay and conditions for paid workers; and revising the definition of ‘well-being’ to ensure that the policy captures human rights considerations and all of the matters care and support users and carers consider to be important.
This chapter introduces the second case study analysis, which explores the manifestation of the two care policy tensions, and the potential application of the care and support rights principles, in a different context. It is focused on England’s Care Act, which introduced fundamental changes to the form and purpose of care and support policy, also referred to as ‘adult social care’. The Care Act makes provision for some people with disabilities – and other adults with care and support needs – as well as some carers to access personal budgets for the purchase of services to meet their needs and promote their ‘well-being’. It contemplates recipients’ participation in a range of activities (including unpaid care and paid work) and applies to multiple constituencies and thus appears – at least on the surface – to be more closely aligned with the care and support rights principles than the Australian policy discussed in earlier chapters. This chapter outlines the history and key features of care and support policy in England and sets out the eligibility criteria that care and support users and carers must meet in order to qualify for support.
Drawing on a 2010 analysis of the reform and costs of adult social care commissioned by Downing Street and the UK Department of Health, this paper sets out projected future costs under different reform scenarios, reviews what happened in practice from 2010-19, explores the impact of the growing gap between need and funding, and explores the relationship between future spending and economic growth. In the process, it identifies a ‘lost decade’ in which policy makers failed to act on the warnings which they received in 2010, draws attention to the disproportionate impact of cuts on older people (compared to services for people of working age) and calls for urgent action before the current system becomes unsustainable.
The study explored the lived experiences of people with injury events in their residential environment. Participants were 65 people with disabilities and chronic diseases in Sweden with residential living injuries (females = 40 (61.5%), men = 25 (38.5%), age range 20–90 year old). They completed qualitative interviews on their experiences of injury events in their residential environment. Thematic analysis of the data yielded evidence to suggest the following issues: (1) individual coping resource preferences; (2) support services; and (3) family engagement needs. Participants coped utilizing positive reframing of their living with injury and the incidents they experienced. Social support functions were important for safety in the housing environment. Rather disconcerting is the fact that participants would not always tell their social network about the risks and injuries they experienced.
This article argues that a new understanding of the indivisibility of human rights has emerged through the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD has blurred the distinction between civil and political rights, on the one hand, and economic and social rights, on the other. After showing how this distinction has been blurred in the Convention, the article critically analyses the impact this has had on the concept of indivisibility, as well as its consequences for international human rights law more generally. It shows that there is now a shift away from a preoccupation with different categories of rights and towards concern for the real and actual enjoyment of human rights.
This article contributes to the search for suitable approaches to combat social exclusion faced by disabled people in capitalist wage labour markets. Referring to policy and service examples in Hong Kong, it reviews four social exclusion approaches – the Moral Underclass (MUD), Social Integrationist (SID), Redistributive (RED) and Collective Production (COP) approaches. These approaches are explored in relation to three key issues: (1) the diverse preferences of disabled people; (2) the myth of infeasibility regarding unconventional approaches and (3) the defects of the medical model of disability. The article argues that the MUD and SID approaches are more associated with the medical model of disability and emphasise individual changes. The RED and COP approaches contain more features of the social model of disability and are in favour of social and structural changes. The COP approach stresses the diverse preferences of disabled people and supports innovative services to combat social exclusion.
Choice is central to developments in many areas of welfare. Making choices, for example about health, social care, employment and housing, can be very emotional. This article draws on theories from experimental psychology and behavioural economics to analyse empirical evidence from a longitudinal, qualitative study of support-related choices. It argues that if people are expected to make emotion-laden choices, and to minimise negative aspects associated with the process of making a choice, they need to be supported in doing so. It contributes to the limited evidence and debate to date about the process costs to individuals of choice.
The focus of this article is on the ways in which emotions are engaged in the discursive construction and treatment of disabled people in receipt of social security benefits. The article draws upon the literature related to the social importance of emotions and that concerned with moral boundary drawing. It argues that the evocation of emotional reactions is crucial in understanding the ways in which changes to out-of-work benefits for disabled people (the development of Employment and Support Allowance) have recently been effected and the ways in which this has reflected a desire to more closely denote those judged able and not able to work in a redrawing of the ‘disability category’. While this has been done in the name of ‘inclusion’, the article concludes that its consequences are, in various ways, the ‘exclusion’ and stigmatisation of disabled people.
This chapter argues that a metric based on Sen's capability approach suggests a more promising, and to a certain extent, more just scheme, than one based on social primary goods. It is divided into two sections. In the first section, the chapter discusses the main elements of the primary goods metric in relation to disability. The second section outlines the capability metric and comparatively considers its merits over the "rival" approach. John Rawls broadly defines social primary goods as those "all-purpose means" and resources that free and equal moral persons need for "carrying out their plans in life". While disabilities caused by social factors receive attention under the social primary goods metric, those resulting from natural causes, such as "any combination of ordinary genetic variations, self-caused factors, and differential luck" are more problematic, and give rise to different and more controversial responses.
The purpose of this study was to: (1) explore experiences and responses of staff in caring for sheltered, frail, Hurricane Katrina evacuees; and (2) identify how planning and training can be enhanced for staff who may care for frail older populations during and after disasters.
Methods:
Individual, in-person, semi-structured interviews were conducted with 38 staff members in four nursing homes in Mississippi, sheltering 109 evacuees in November 2005, nine weeks after Hurricane Katrina.Twenty-four were direct care staff, including certified nursing assistants, licensed nurses, dietary aides, and social workers; 14 were support staff, including maintenance and business managers. The number interviewed in each nursing home averaged 9.5 (range 6–15). Using a discussion guide and focusing on their experiences caring for nursing home evacuees, staff were asked to describe: (1) experiences; (2) problems; (3) what helped; and (4) what was learned. Data were processed using grounded theory and thematic analysis. Responses of direct care staff differed in emphasis from those of support staff in several areas; responses from these groups were analyzed separately and together. Three of the researchers identified recurring themes; two organized themes conceptually.
Results:
Staff emphasized providing emotional reassurance to evacuees as well as physical care. Many described caring for evacuees as “a blessing,” saying the experience helped them bond with residents, evacuees, and other staff. However, caring for evacuees was difficult because staff members were extremely anxious and in poor physical condition after an arduous evacuation. Challenges included communicating with evacuees' families, preventing dehydration, lack of personal hygiene supplies, staff exhaustion, and emotional needs of residents, evacuees, and staff. Teamwork, community help, and having a well-organized disaster plan, extra supplies, and dependable staff helped personnel cope with the situation.
Conclusions:
Staff of nursing homes that sheltered Katrina evacuees demonstrated resilience in the disaster's aftermath. Many placed the well-being of residents as their first priority. Results underscore the importance of planning, teamwork, and adequate supplies and staffing. Training for long-term care staff should emphasize providing emotional support as well as physical care for residents and evacuees during and following disasters. Nurses, social workers, and other staff members responsible for promoting emotional well-being for nursing home residents should be prepared to respond to disasters.
The costs of higher education in the UK have shifted increasingly from the state to the student (and students' families). In 1998, a fee contribution of £1,000 per annum was introduced for new entrants to full-time degree courses. This paper examines its effect on debt, term-time employment and student satisfaction. The analysis uses data from a survey of two cohorts of students and identifies how the impact varied with student and course characteristics. Fees led to an increase in student debt (particularly for disabled students and for students who did not receive financial support from their families) and a decline in student satisfaction. No general impact on term-time employment was identified, but term-time employment increased for students who did not receive financial support from their families. Whilst for these two groups inequality was increased, fees appeared to lead to greater equality, in terms of term-time employment, between children of graduate and non-graduate parents. The paper discusses the implications for the introduction of top-up fees in 2006.
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