Landscapes of Care

Comparative Perspectives on Family Caregiving

Andrew Power

• Publisher: Routledge
• Year: 2016
• Topic: Politics & International Relations
• eBook ISBN:
  9781317108092
• Subtopic: Social Policy
• Index: Politics & International Relations

Given the increasing shift of care from state residential services to community-based support, this book examines the complex geographies of family caregiving for young adults with intellectual disabilities. It traces how family 'carers' are directly and indirectly affected by a broad array of law and policy, including family policy, disability legislation, and health and community care restructuring policy. Each of these has material and institutional effects and is premised on the discourses, ideologies, and interactions in the state over time. Focusing on the welfare models of England, the US and Ireland, this book compares the welfare ideologies in each country and examines how the specific historical, cultural, and political contexts give rise to different landscapes of care and disability. Further, the book explores the unique lifeworlds of family carers of young adults with intellectual disability within the broader landscape of care in which they are situated.

Chapter 1
Introduction

There are only four kinds of people in the world – those who are currently caregivers, those who have been caregivers, those who will be caregivers, and those who will need caregivers.

Rosalynn Carter (former First Lady) Helping Yourself Help Others

Since de-institutionalisation began in the 1970s in many Western jurisdictions, family caregiving has been affected by an orchestrated set of policies and measures aimed at reducing state involvement in welfare provision. Home care has arguably been a victim of larger neo-liberal processes in which economic, socio-cultural, and political problems are displaced into voluntary services and the family in order to restructure state responsibility and save public finances. Support provided by family and friends is the critical foundation of community care. In particular, caregiving for young adults with intellectual disabilities is in large part determined by the resources of individual families and the mix of community services available. Often a lack of support mechanisms for carers can lead to other considerable social and economic costs such as family breakdown and institutionalisation.

Over the last decade or so, the landscape of care support within capitalist welfare states has become more and more decentralised, with increasing reliance on the voluntary sector. This has occurred after years of political and ideological debate about the potential for voluntarism to resolve their fiscal problems (Salamon et al., 2003). Parallel to this, there has been a greater tendency to introduce increased competition, procurement and contractual management across these states, for managing the relationship between the different actors within the welfare sector. The Compact in the UK and the Accord in Canada are examples of new ways in contracting with the voluntary sector (Plowden, 2003; Creese, 2006). This has led to a significant debate in social policy and new public management literature which discusses the relative merits of increased contracting and governance by the state in the nonprofit sector. Central to this debate are the effects on family caregivers themselves. Both the type and extent of family care have been shaped by differing political and socio-cultural constructions of care and how these have been interpreted within a framework of rights and responsibilities. As the book shall explore, this framework and the precise form of neo-liberalism that states have adopted are historically and geographically specific.

In discussing welfare systems and support provision, it is clear that they are about much more than the organisation of services or benefits; they are about how societies value different roles and responsibilities, and how major social divisions – such as class, gender, disability and indeed family carers – are conceptualised. From the classification of social membership and personal need to the management of resources, social welfare is embedded in a wide range of political, economic and cultural discourses (O’Brien and Penna, 1998). The discourse of care thus holds considerable implications for the socio-spatial arrangement of care. These discourses have undergone significant restructuring in the wake of neo-liberalism, and consequently so have the packages of care provided to family carers. In light of these changes and in the context of new social movements centred on ‘identity politics’, the way in which a State constructs the notion of rights and welfare has become a key indicator in assessing care provision. Examining the differences across countries illustrates the relative impacts of their historical, social, economic and cultural contexts on the landscapes of care for family caregivers. Here, care is largely interpreted within a relational framework that examines the linkages between care-giving expectations, the context in which it occurs and those charged with its delivery.

Intertwined with this broader welfare debate over how best to support care providers, recent discourses on care have included a more fundamental debate around the contested nature of care itself, from those in receipt of it. Given the long history of paternalistic forms of congregated care and enforced dependency of people with disabilities, particularly for those with intellectual disabilities, there has been much resistance to varying social notions of care. Terms such as service user or client have served to replicate this resistance. The person is often viewed as a dependent recipient of care, rather than an active citizen being in reciprocal and interdependent supporting relationships. Such thinking has arguably continued to undermine or negate individuals’ capacity for autonomy and self-determination (Thomas, 2007). This view continues to inform debates on care and independence. Hence, despite the shift to family care, the term ‘care’ is one that remains synonymous with dependency in disability studies (Oliver, 1996; Oliver and Barnes, 1998). Indeed, Twigg and Atkin (1994) go so far as to suggest that while informal (family) carers are by and large seen as part of the solution, they may also be part of the problem.

The complexity of understanding family care then, is obscured by the ways in which family ‘informal’ carers have become the subjects of debate themselves within health and social care policy in recent years. Twigg and Atkin (1994), for example, noted how family carers could (and were) being classified as service-users, resources, and co-workers. As a result, the intricacy of care relationships between family carers and other groups, has led to complex policy intersections, which in turn has had a substantial impact on the people involved and vice versa. Notable areas of work have therefore focused on the implications for who cares (Twigg and Atkin, 1994; Milligan and Power, 2009); as well as multiple definitions of care (Watson et al., 2004; Morris, 1993).

In the context of these debates, this book examines the discourses of care and the resultant landscape of caregiving policy for families caring for their young adult children with intellectual disabilities in three different jurisdictions; the U.S., England and Ireland. The comparative analysis unpacks these central debates regarding how care is viewed by the state and demonstrates the intricate interplay of historical, social, cultural and political factors in shaping such care policy. It shows that any attempt to ‘read’ the landscape of care cannot be undertaken without an understanding of the particular context within which it is situated. While there are some commonalities across the three jurisdictions, how care policy is manifest in each country is rather different.

In order to explore the impacts of these debates on family caregivers themselves, the book examines the local scale within Ireland in more depth. Ireland serves as a particularly interesting case study of what can happen to a care system when the state operates a decentralised ‘relaxed-control’ approach. Given its unique social history, particularly in terms of the influence of the Roman Catholic Church and state subsidiarity,1 Ireland offers a distinctive perspective in unpacking these broader welfare debates, as well as examining the experiences of family members within the context of such contested notions of care. This book thus examines in more depth the social and spatial implications of its particular model on family caregiving on the ground. It provides a timely analysis of home care for families of people with intellectual disabilities in Ireland in comparison to England and the US.

The use of the term ‘Landscapes of Care’ in the title represents an attempt at presenting a critical study of the informal care sector and the spatial experience of care beyond a surface identification of spatial patterns. It draws on concepts in human and cultural geography which have a broader understanding of landscape as a humanistic and culturally constituted phenomenon that extends beyond a purely physical environment. The term in some ways builds upon Gleeson and Kearns’ (2001) original concept, ‘moral landscapes of care’, in which they critically look at the moral geographies associated with re-locating care in the community. In their paper, they question the moral binary of presenting institutions as inhumane, and community care as nurturing and emancipatory. Rather, they advocate a critical perspective which goes beyond formulaic ideals of community care to try and identify a landscape which has a sincere and inclusive ethic of care. Similarly, rather than solely focusing on the physical caregiving infrastructure on the landscape, analysis is extended to examine how and why care ideology is structured and experienced as it is. At the comparative scale, this means examining the ideologies and discourses which underlie care support. At the local Irish scale, this means uncovering the lived experiences of those who deliver care, thereby placing them ‘in’ the landscape. Since community care is as much about private lives as it is about public policy, this book is thus centrally concerned with the way in which caregiving is experienced by those who live within a landscape of intersecting community care policies.

At the same time, the concept ‘landscapes of care’ echoes many of the themes emerging from the therapeutic landscapes literature, in particular the everyday milieu of caregiving in which a carer lives and the emotional ties between the individual and their ‘place’ (see Williams, 2002). On the one hand, ‘landscapes of care’ resonates with Gesler’s (1992) original conception of therapeutic landscapes, articulated as ‘settings or situations that encompass physical, psychological and social environments that are associated with healing [and wellbeing]’. The home for many carers and adults with intellectual disabilities can represent a haven from public scorn and awkwardness. However, on the other hand it is important to recognise that the familiar sites of the home and the ‘in-between’ social spaces in which care takes place are often simultaneously places of contestation, isolation and hurt. The therapeutic landscapes concept is thus better understood in this context as a dynamic and evolving process, in which the carer has to continually manage circumstances to help ‘maintain’ a therapeutic landscape of care.

Given the limited academic research on geographies of caregiving for young adults with intellectual disabilities and the broader comparative analysis of caring in geography more generally this book works towards two ends. Firstly, to develop a critical study of home care and to construct a cross-cultural comparison through charting the ideologies, provision and experiences of home caring in different countries. Secondly, to expand theoretical understanding in relation to the support provision and experiences of home care. This is achieved through incorporating the perspectives of post-structuralist theory to focus on the discourses of citizenship, social justice and care, in order to construct a moral geography of care.

Carers for Adults with Intellectual Disability

This book takes as its focus families caring for young adults aged 18 and above with intellectual disabilities. When an individual turns 18 years of age, there is often a significant transition from second-level education into adult services, and a different set of structures and benefits provided by the state. In general this is typified by means-tested assistance, day care services, and occupational and life-skills training. The progression into adulthood is one of the most significant transitions experienced by individuals and their families and a lot of planning and mentoring is required to set up sustainable and individually tailored supports for the person. This process is compounded by the young adult’s capacity to make decisions, and the level of advocacy required in planning for future supports. As a result, this transition into adulthood often represents a significantly more stressful time for people with intellectual disabilities and their families. Leaving education for teenagers with learning difficulties may only serve to highlight differences from intellectually-able peers. It appears that the education system (whether mainstream or segregated), offers a secure environment that many families find it difficult to envisage their child ever having to leave. Most parents of young adults with intellectual disabilities worry therefore about their child’s move into adulthood and are apprehensive about the uncertainty of the future (Redmond, 1996).

Intellectual disability2 is a problematic and complex concept that is difficult to define. Generally, an individual with an intellectual disability has a greater than average difficulty in learning, there are difficulties with everyday life skills; and the condition is present from childhood. People often require alternate training methods and speech therapy in order to reach their full academic potential. However, the meaning and interpretation of intellectual disability are negotiable and vary across time and place. For instance, people with Down’s syndrome can be highly independent, yet at the same time can be particularly vulnerable to dependency creation (Swain et al. 2003). They do not necessarily have a general learning disability; rather, they have a characteristic learning profile with specific strengths and weaknesses. There are factors that facilitate learning which can be used to offset factors that inhibit learning. While definitions of intellectual disabilities may provide some insight into the disability itself, it is important that these definitions do not overly label the person and that generalised assumptions are not made.

The role of caregiving for people with intellectual disabilities is thus a complex area, particularly given its contested history. ‘Good’ care can depend on the policy commitment to provide and design the most appropriate services, the level of funding made available, and the attitude of society in general towards those who have an intellectual disability. Good care also depends on how appropriate the caregiving relationship is, in relation to the needs and preferences of the individual. Moreover, it is important that such forms of care are not paternalistic, overbearing or restrictive.

Scales of Study

As Townsend (1995) has argued, welfare policy can no longer limit itself only to the national arena but must address the connections between the local and the global. Any narrative of health and social care restructuring must take into account the relationships between actors operating at various spatial scales (Milligan, 2000a). Addressing such connections also necessitates an encounter with political, economic and cultural forces. Given that carer support services are structured differently in each country, the book provides a comparative analysis of how services developed over time across three different jurisdictions (the US, England and Ireland) and the extent to which the services meet carer demand on the ground. While recent research is increasingly recognising the uneven geography of welfare, many of these descriptions have been static snapshots in time rather than dynamic, which makes it difficult to determine how policy developed over time (Powell and Boyne, 2001).

The book is structured in three related parts, and the content makes a logical progression from the macro to micro scales:

• Part I examines the different concepts of welfare, citizenship, and rights and responsibilities related to care.

• The comparative analyses in Part II explore how different jurisdictions apply these notions in constructing their landscape of care. In addition, each chapter illustrates the models of citizenship and social justice from which the family carers (and their associations) draw their political strategies. In other words, the book seeks to examine the ways in which hegemonic discourses of welfare and care are being challenged by carers and those they care for, and to document alternative care strategies being pursued. This provides a context for considering the merits and limitations of how home care is institutionally and ideologically framed and in particular how various discourses (e.g. political ideologies, conceptions of citizenship and social justice) create and reproduce care support provision.

• Finally, Part III offers a more detailed case-study of whether institutional structures in Ireland interlock at regional and local levels to provide an effective system of care support. The analysis evaluates critically how carer support is spatially structured, the services provided, and how they target carers. An important component of this is an investigation into the experiences of carers themselves and how the care services offered shape their lives. Issues regarding carers in the community are held in focus with broader issues such as the contested history and notion of care, individual rights of the care recipient, citizenship rights, and the role of welfare.

A Note on Methods of Analysis

In order to examine the ‘place’ of caregiving within broader debates of welfare, the book aims to move beyond reductionist typologies of each country towards a deeper examination of their historical, cultural and political contexts. Therefore, in order to develop the international comparative part of the book, the methodological framework was based on a detailed examination of literature followed by site-visits to each country. The site visits provided a means to investigate the broader social factors such as different conceptions of disability, family responsibility, and role of community in each country.

Stage One

To move beyond the typologies and to provide a detailed examination of literature, a wide range of material needed to be consulted, across a range of disciplines, as well as from public, voluntary, and academic sources. Furthermore, a historical perspective was needed to trace how these discourses developed and changed over time, and so a detailed archival search was undertaken of policy and legal documents, organisation mission statements, media stories and book publications. Government and voluntary body websites were also consulted to gather data on welfare benefits, payments and entitlements. This was an ongoing process and continued throughout the later stages. This was supplemented by examining peer-reviewed journal articles and books in the field. The research throughout all the comparative chapters is heavily based on the policy and academic literature consulted.

Stage Two

The purpose of the site-visits was twofold: to facilitate getting to the hard-to-find ‘grey’ literature (including studies on health, welfare, disability, and caregiver policy) and to meet key academics and carer organisations to learn their thoughts on local community care practices. Because of the differing definitions and practices of carer support in each country, initial contact was made with the research staff at host universities, and from there, prospective interviewees were formed wi...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• List of Tables
• Preface
• Acknowledgements
• 1 Introduction
• PART I CONCEPTS OF CARE
• PART II COMPARATIVE PERSPECTIVES IN THE DEVELOPMENT OF CARE
• PART III LIFE WITHIN THE LANDSCAPE
• Bibliography
• Index