This book series arises from the Sustainable Care: connecting people and systems research programme delivered by a multidisciplinary partnership of 35 scholars in eight universities, funded by a UK Economic and Social Research Council Large Grant. It offers novel, internationally-informed interdisciplinary contributions based on work by linked research teams studying care systems, care work and care relationships.

The focus of the book series is timely and important. We hope it will inform and inspire scholars, policymakers, employers, practitioners and citizens interested in care. Books in the series offer new empirical, conceptual and methodological writing, in scholarly but accessible form, and aim to make an innovative and distinctive contribution to understandings of care challenges and how these can be addressed.

The books bring together data, practices, systems, structures, narratives and actions relevant to social care. Some relate specifically to the UK's unique policy, demographic, cultural and socio-economic circumstances, but all have clear global relevance. Similar concerns are salient around the world, especially in other advanced welfare states, where population ageing is profoundly changing age structures; developments in technology and healthcare mean more people who are ill or have long-term conditions need support at home; and ‘traditional’ gendered sources of daily caring labour are dwindling, as levels of female labour force participation rise, and family networks become more dispersed. The Covid-19 pandemic has amplified all these challenges.

Subject areas, disciplines and themes

The series critically engages with crucial contemporary debates about care infrastructure; divisions of caring labour and the political economy of care; care ethics, rights, recognition and values; care technologies and humantechnological interactions; and care relations in intergenerational, emotional, community and familial context. Within its overarching concept, sustainable care, its subject areas span social and welfare policy and systems; family and social gerontology; ageing and disability studies; employment and workforce organisation; diversity (including gender and ethnicity); social work and human resources; migration and mobility; and technology studies.

The new multi-disciplinary work on care we offer embraces progress in global scholarship on diversity, culture and the uses of technology, and engages with issues of inequality, political economy and the division of labour.

Introduction

This chapter focuses on older people who need care in Australia and England, liberal democracies in which the state has long recognised some responsibility for older people's welfare, introducing ‘old age’ pensions (from 1908) and allocating some public funds to provide residential care, home care and local community services for sick, frail or disabled older people.

The limited public eldercare services developed in England after 1945 were initially delivered by public sector employees: social workers, residential care staff, ‘home helps’ and community health workers. Services for older people in Australia, developed from the colonial period onwards by voluntary societies and charitable and religious organisations, were later mainly funded by government (Murphy, 2011: 30; Productivity Commission, 2011a: 12–14). Although neither country made providing care or financial support to older relatives a legal obligation for family members, it was assumed in both countries that while they lived at home, older people's care needs would mainly be met by their families.

Australia's national (Commonwealth) government assumed greater responsibility for social services in the decade after 1945, creating what some consider a ‘social service’ rather than a European-style ‘welfare’ state (Phillips, 1976: 259; Roe, 1976). Public support for aged care developed at the intersection of pensions, housing and health care policy (Productivity Commission, 2011a: 12): the 1954 Aged Persons Homes Act made capital funding available for residential eldercare and nursing home benefits were introduced in 1963 (Dixon, 1977: 147). Residential care was subsequently expanded within a mixed economy of government-subsidised non-government and commercial providers (Fine, 2007a: 275). In 1985, responding to escalating expenditure on residential support and older consumers’ desire to stay at home, an Aged Care Reform Strategy shifted the emphasis from residential to home care (Howe, 1997: 306–8; Pfeffer and Green, 1997: 282). Since that date, the Home and Community Care (HACC) programme – delivered under the aegis of the states and jointly funded by the Commonwealth, State and Territory governments – has provided domestic assistance, personal care, meals, transport, home maintenance and nursing health care (AIHW, 2011: 187).

Introduction

In both Australia and England, the needs of families with a sick or disabled child are recognised and addressed in legislation and in national health, care and education systems. Relevant policy frameworks and support measures, which continue to develop and change, have been put in place over several decades (HMT and DES, 2007; Broach et al, 2010) and both countries have made disability discrimination illegal (including in education and social support systems). Each has policies designed to meet the additional educational needs of children with a disability, and offers financial support that parent-carers may claim. Yet, in both countries, many parent-carers feel unsupported, their health and financial circumstances are poor compared with those of other parents and carers, and their employment rates are low (Audit Commission, 2003; Burchardt, 2006; Yeandle et al, 2007; FaHCSIA, 2008).

What help do parent-carers get in these countries to enable them to reconcile work and care? Why are outcomes for them so often unsatisfactory? Is policy adaptation and change addressing these problems? This chapter begins by outlining the context for these issues, focusing first on the prevalence of sickness and disability among children in Australia and England and the services and support available to their families.

Prevalence of disability among children and their families’ financial circumstances

In Australia in 2009, an estimated 288,300 children aged 0–14 had a disability: over 3% of 0–4 year olds, and almost 9% of 5–14 year olds (ABS, 2011). Of these, 166,700 had a severe or profound ‘core activity limitation’, meaning that they need assistance with regular communication, mobility or self-care tasks (AIHW, 2009a; ABS, 2011). Estimates suggest that about half of all disabled children aged 0–14 have two or more disabilities and that almost 7% have four or five (AIHW, 2009b). The type of disability a child has can be important to his or her care needs. A review of payments to primary parent-carers in Australia found intellectual and learning disabilities (4.3% of all children) and physical/diverse disabilities (4.2%) to be most prevalent (FaHCSIA, 2007: 4), while analysis of the primary disability of service users found that this was ‘intellectual’ for about 30% of people, ‘physical’ for almost 17% and ‘autism’ for about 6% (SCRGSP, 2011: Table 14A.13).

Introduction

This book, while not the first to address the reconciliation of paid work and the care of older, sick or disabled people in an international context, offers an updated and extended perspective on an issue whose importance is increasingly recognised around the world. The book is characterised by three features: (1) the distinction it makes between caring in three different relational contexts; (2) its focus on the influence of carers’ organisations as well as of demography and labour force participation; and (3) its coverage of Nordic, liberal-democratic and East Asian societies. It aims to offer readers insights into the personal worlds of working carers in varied cultural and social contexts, to present available statistical evidence about the scope and nature of the care they give, and to review trends and developments in relevant policy fields in six countries.

As mentioned in Chapter One, two earlier books first analysed issues affecting working carers using an international comparative perspective almost 20 years ago. Judith Phillips’ (1995) edited collection Working carers: international perspectives on working and caring for older people broke new ground in the mid-1990s, bringing the relationship between caring and employment into international focus for the first time. Her collection centred on research findings from Britain and North America and also presented early analysis of the circumstances of working carers in Ireland and Germany. It emphasised that since in every country, women were increasingly needed in the labour market but also remained the main carers of older people, caring should be understood as a workplace issue. The book developed a discussion that had begun in Britain and presented examples of workplace initiatives and empirical findings from different countries.

Work and caring for the elderly: international perspectives, edited by the American researchers Viola M. Lechner and Margaret B. Neal (1999), both broadened earlier US studies on working carers and offered an extensive international comparison. Aiming to heighten awareness of the options available to address the ‘work–eldercare dilemma’, their book presented a range of approaches used in supporting people to combine work and care in 11 countries. Its objectives – similar in some ways to those of the present volume – were to explore support for older people and their employed carers in different national contexts, including three of the countries covered here.

Introduction

In recent decades, the reconciliation of work and family life has become a key focus in social research and policymaking at both national and European levels. Thanks to the altered gender composition of the labour force and a new feminist-inspired understanding of the interconnections between work and family, many policymakers no longer see the public sphere of paid work and the private sphere of family life as two separate worlds. A long-standing resistance to any kind of intervention in family life in many welfare states, including most English-speaking and East Asian countries, has given way to new policy approaches addressing the needs of working families, and many areas of family policy, including childcare services and parental leave, have been reconceptualised as support measures for work–family reconciliation. The European Union (EU), aiming to increase overall employment rates and generate economic growth in Europe, has become an active advocate of women's labour force participation and has begun to require member states to develop and extend their reconciliation policies. Faced with struggling economies and falling birth rates, many European nations have adopted the reconciliation agenda and launched new measures to support families, especially working mothers of young children. These changes represent a remarkable policy shift and have led to the rapid development of family policies in Europe.

Despite its significance, the scope of this policy reorientation has nevertheless been limited. Research and policy on reconciliation have focused almost exclusively on parents of young children, even though, in most countries, it is not growing numbers of children that are putting pressure on families’ capacity to provide care. Instead, as ongoing and anticipated changes in population structures confirm, it is people who are ill or disabled, especially in old age, whose numbers and needs are growing fast (Colombo et al, 2011). Previous research has shown that in virtually every nation, the bulk of care is overwhelmingly provided by the family. It is therefore hardly surprising that the growing needs of disabled and older people are expected to place greater demands on adult family members. Meanwhile, the ‘adult worker model’, with its expectation that everyone – including women, who in the past provided most family care unpaid – will participate in paid work (Lewis, 2001), has been adopted as a normative assumption almost everywhere.

Introduction

This chapter presents the key features of the welfare state and policy context, as they affect carers, for each of the six nations included in the book – Australia and England, Finland and Sweden, and Japan and Taiwan – providing a point of reference for readers of later chapters. Outlining similarities and differences between the six countries, the chapter presents an overview of how carers and the support they may need have been conceptualised in the public policy sphere in three welfare systems (referred to in this book, as already explained, as ‘liberal-democratic’, Nordic and East Asian welfare systems).

Chapter One has already outlined basic information about people requiring care and carers in the six countries and has shown that care needs are expected to increase. This chapter considers the policy background and context affecting people of working age who help or care for relatives or friends who are sick, disabled or old, focusing on how far they are recognised and responded to in policy provisions. It outlines the support and services available to them in each country, noting any financial support carers receive and any employment options and rights accorded to them. At the end of the chapter, the focus turns to advocacy and the role played by carers’ organisations in framing public policy in this field.

In each country, giving at least some kinds of care to sick, frail or disabled family members, friends or neighbours is normal and ubiquitous for people of working age, especially, but by no means exclusively, by women (see Chapter One). As the roles and activities of carers have come to the attention of policymakers in recent decades, each nation has chosen to adopt measures covering at least some of the types of support for carers identified in other international analyses (Colombo et al, 2011). The chapter considers three types of support relevant to the reconciliation of work and the care of frail, elderly, sick or disabled people: (1) the services carers can access; (2) the financial assistance available to carers if they give up, take leave from or reduce their hours of paid work (or to remunerate their caring labour); and (3) their rights and entitlements in employment, which may protect carers from dismissal or unfair treatment and/or enable them to vary their working arrangements to facilitate caring activities.