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This chapter discusses efforts to transcend disagreements between carer and disability rights perspectives in relation to care and support. The tension between these perspectives rests on a dichotomous view of people with disabilities as being either dependent on others and in need of ‘care’ or independent holders of rights. Ethics of care theorists have challenged this dichotomy, arguing that interdependence – both giving and receiving care – must be reconceived as normal and universal human experiences and elements of citizenship. Some disability scholars have engaged with the ethics of care perspective, drawing especially on a human rights perspective on disability, to devise an approach that can recognize and meet care and support needs on the basis of shared dignity rather than shared vulnerability. This would require the introduction of care and support policies that recognize and extend support to people in all forms of care and support relationships, recognize diversity of need, impairment and preference and facilitate the exercise of the full suite of citizenship and human rights. While this approach is promising, some conceptual differences between the carer and disability rights perspectives remain unaddressed, including a persistent tendency to prioritize one side of the care or support relationship over the other.
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 examines how Australia’s Carer Payment (child) policy treats the activities and constituencies of interest in this book and highlights the discourses and norms of care, disability and paid work that underpin this treatment. The policy has limited benefits and many shortcomings for both carers and children with disabilities. Its availability to some carers with the most ‘intense’ care loads does place economic value on the traditionally undervalued activity of care but reinforces the full-time caring role and provides inadequate support for alternatives. Consequently, many of the ‘burdens’ identified by carers are ignored and perhaps exacerbated. Carer Payment (child) treats unpaid care and paid work as largely incompatible activities and does not problematize the unequal gender division of labor or address its consequences for women. Carers’ eligibility assessments are focused on the individual, medical needs of the child, and carers are assumed to be the best people to meet those needs. As a result, the views and preferences of children with disabilities are not sought or expressed, and their broader rights are not considered.
This chapter sets out the rationale, scope and organization of the book. It situates the two policy tensions of interest in the book within wider debates about the meaning of ‘care’ and appropriate policy and legal responses to societies’ care and support needs, in light of the growing demand for, and declining supply of, care and support. While the book is intended to contribute to international conversations currently underway, its main focus is on policy in ‘liberal’ welfare states. The principles proposed in the book are designed to respond to the shortcomings of both long-standing features of these systems (including the provision of modest ‘safety net’ benefits for those who cannot resort to the family or market) and more recent effects of neoliberal reforms that had led to the withdrawal and marketization of services and the prioritization of paid work participation as the essential activity of citizenship. Case studies of recent policy reforms in two broadly liberal welfare states – Australia and the UK – explore the care policy tensions and application of the principles in this wider context later in the book, and this chapter also includes an explanation of the purpose of these case studies and the case study methodology.
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.
This chapter introduces the first of two case study analyses presented in the book. The case studies explore how the care policy tensions manifest in different policy contexts and demonstrate how the principles might be used to amend specific policies. This chapter describes the history and key features of an Australian care and support policy that prioritizes one activity (unpaid care) over another (paid work) and one constituency (carers) over another (children with disabilities). Carers’ income support has been available to some citizens and permanent residents since the 1980s. Since 1998, Carer Payment (child) – a pension payment administered by Australia’s federal government – has been available to people whose constant care for a child with a severe disability or medical condition prevents them from supporting themselves through paid work. The most recent major reforms to the policy in 2009 introduced a new eligibility test that focused on the ‘care load’ that a child’s medical needs produce for the carer. This extended access to a greater number and wider range of people, although the payment is still only available to those providing constant care and have no, or limited, involvement in paid work.
This chapter introduces a set of six principles to guide the evaluation and design of rights-based care and support policy in liberal welfare states. The principles build on and extend the reconciliation efforts discussed in earlier chapters, using the common thread of social citizenship rights claims that runs through the feminist, carer and disability rights perspectives. The principles provide criteria for evaluating the extent to which existing policies encompass the concerns of multiple care and disability perspectives, including whether they ease policy tensions between supporting women’s unpaid care and paid work and between meeting the claims of carers and those of people with disabilities. The principles can also inform the design of policies that promote equal social citizenship rights to care, support and paid work participation for all parties to these relationships. The principles address matters including access to financial resources and good quality services; flexibility in how life is organized; time for unpaid care, paid work and self-care; incorporation of the ‘voice’ of all affected people in the policy design; and responding to difference associated with gender inequality, disability and impairment, and citizenship status.
This chapter discusses a second source of care and support policy tension – the tension between supporting the claims of carers and supporting those of people with disabilities. Organized carer movements in Australia, the UK and other liberal welfare states have argued successfully for policy support on the basis of the burden of providing intensive care to older persons and/or children and adults with disabilities. Disability studies scholars and activists have challenged this characterization of disability as an individual deficit and source of burden, arguing instead that disability is a consequence of a failure to accommodate difference and recognize the rights of people with disabilities. They have advocated instead for policies that enable people with disabilities to be independent and choose how they live. Each approach has some benefits for one constituency at the expense of others. Support for carers to ‘care’ can produce disempowering arrangements for people with disabilities, while independent living arrangements sought by people with disabilities may disempower support workers if they do not have appropriate pay and conditions. Calls for choice and independent living have also coincided with the neoliberal marketization of care and support, resulting in a narrowing of choice that is only available to some.
This chapter discusses ‘Wollstonecraft’s dilemma’ – the quandary facing feminists concerned with social provisioning in terms of whether to pursue women’s equality through support for their unpaid caregiving roles or through support for their paid work participation. Each option is based on (and assesses women against) the male norm of citizenship and social participation, with policy either supporting women’s ‘difference’ from men in unpaid caring or treating women ‘like’ men in paid work. Care-supportive and work-supportive policies in liberal welfare states have had both advantages and disadvantages for women. Policies that support women’s unpaid care for children or adults offer some recognition and remuneration of such roles but limit women’s ability to participate in the public sphere. Policies that support or require women to engage in paid work may offer economic autonomy but do not generally recognize or address women’s disproportionate responsibility for care. This chapter also discusses the neoliberal trend away from support for care and maternalism toward ‘employment for all’ regardless of care and support responsibilities.
This chapter discusses feminist efforts to transcend the question of whether policy should support women’s unpaid care or their paid work participation. It focuses on Nancy Fraser’s ‘universal caregiver’ model of the family and similar ‘dual-earner/dual-caregiver’ proposals. In this model, both women and men are expected to participate in both unpaid care and paid work and share equal responsibility for both activities. The chapter discusses the features of this model and the kinds of policies that might promote it. They include ‘work–care’ or ‘work–family’ reconciliation policies such as flexible working arrangements; care leaves that are available and appealing to women and men; and services to replace unpaid care. While some policies along these lines have been implemented in the liberal welfare states and other parts of the world, the universal caregiver model still exists largely in the theoretical realm. The model has also been criticized for its singular focus on the equal gender sharing of unpaid care, which might not be universally preferred or possible, and for its lack of attention to the perspectives of the recipients of unpaid care and paid care workers. Consequently, it is inadequate on its own to deal with the tensions of concern in this book.
In light of the many shortcomings of Carer Payment (child) policy described in Chapter 7, this chapter explores the potential of the six care and support rights principles to place the interests and claims of carers and children with disabilities on an even footing and realize their citizenship rights to care and support. Many current restrictions on access to this payment would need to be amended to achieve this, including removing the limitation of eligibility to sole carers with intense, constant care loads, reconsidering the income tests and paid work requirements that limit carers’ paid work options, and expanding the ‘care load’ test’s focus beyond individual, medical needs to incorporate the rights and dignity of children and their carers. Other necessary measures would include ensuring that a variety of care and support services are available for all parties and increasing the availability and appeal of flexible working for men and women. Such changes would constitute a major departure from prevailing policy settings and require reform across multiple areas of policy including social assistance, care and support and employment, but the potential benefits of such changes for a range of people with care and support needs and/or responsibilities are clear.