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Care: A Critical Review of Theory, Policy and Practice

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‘Care’ is a source of critical tension in current social theory, and the policy and practice implications of that tension are evidenced in its current prominence on the political agenda of developed welfare states. This article critically appraises current developments in the theory, policy and practice of care, drawing on interdisciplinary developments in political theory, sociology and social policy. Developing feminist and disability-rights theories, it explores a critical synthesis of conflicting normative and theoretical positions regarding the giving and receiving of care, and of the ethics and justice of care. It examines case studies of current comparative policy developments across a range of different welfare regimes, including the marketization/commodification and de/re-familiaization of care, exploring ideological and normative trends in the design of contemporary policies. It discusses the impact of theory and policy on the practice of care, looking particularly at the issue of long-term care for disabled and older adults. Finally, the authors argue for the development of a citizenship-based approach to care that decouples it from individualistic and paternalistic paradigms that disempower those who give and receive care.
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Care: A Critical Review of Theory, Policy and Practicespol_845 321..343
Kirstein Rummery and Michael Fine
Abstract
‘Care’ is a source of critical tension in current social theory, and the policy and practice implications
of that tension are evidenced in its current prominence on the political agenda of developed welfare
states. This article critically appraises current developments in the theory, policy and practice of
care, drawing on interdisciplinary developments in political theory, sociology and social policy.
Developing feminist and disability-rights theories, it explores a critical synthesis of conflicting
normative and theoretical positions regarding the giving and receiving of care, and of the ethics and
justice of care. It examines case studies of current comparative policy developments across a range
of different welfare regimes, including the marketization/commodification and de/re-familiaization
of care, exploring ideological and normative trends in the design of contemporary policies. It
discusses the impact of theory and policy on the practice of care, looking particularly at the issue of
long-term care for disabled and older adults. Finally, the authors argue for the development of a
citizenship-based approach to care that decouples it from individualistic and paternalistic para-
digms that disempower those who give and receive care.
Keywords
Care;Feminist theory;Disability rights;Long-term care;Carers;Older people
Introduction
For a seemingly innocuous and positive word, ‘care’ is a source of critical
tension in current social theory, policy and practice. Prior to the exploration
of the theoretical and normative frameworks underpinning care, initially by
feminist social scientists in the 1980s, it was a relatively underexplored phe-
nomenon. ‘Care’ as an emotion, and as labour, was largely hidden from the
scrutiny of academics and policymakers, seen as both private and feminine.
This, of course, has changed dramatically. Not only has there been an explo-
sion of scholarship, both theoretical and empirical, in the area, but due in part
to socio-economic, demographic and political developments, care is increas-
ingly under the scrutiny of policymakers across developed welfare states.
Address for correspondence: Kirstein Rummery, School of Applied Social Science, University of
Stirling, Colin Bell Building, Stirling FK94LA, UK. Email: Kirstein.Rummery@stir.ac.uk
Social Policy &Administration issn 0144–5596
DOI: 10.1111/j.1467-9515.2012.00845.x
Vol. 46, No.3,June 2012, pp. 321–343
©2012 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX42DQ , UK and
350 Main Street, Malden, MA 02148, USA
In this article we trace some of the sources of the critical tension surround-
ing care. We explore the theoretical debates that have arisen from the con-
ceptualization of care as a labour of love, and as a commodified activity (paid
labour), looking at the way in which this dispute has arisen from the identifi-
cation of care as the unrecognized and unpaid domestic duties imposed on
women as a result of the sexual division of household and familial labour. We
look at the significance of the different roles and relationships of the different
roles and relationships associated with the responsibility of providing care and
the way in which this discussion has reflected issues associated with the sexual
division of labour. Men have been seen as taking responsibility for caring about
someone but overwhelmingly (but not exclusively) women have been seen as
having the responsibility for caring for someone (Graham 1983,1991). We
explore some of the more troubling theoretical questions that have arisen
since the first wave of feminist scholarship into care that arose in Europe and
North America in the 1980s, such as the place of the care recipient in the
provision of care; tensions around the value of care, and how to understand it
as a moral value, comparable with justice; and how to assess its true value in
a market society given the problems associated with giving it an economic
value. Finally, we explore some of the policy implications of these theoretical
tensions by examining contemporary developments in care policy, focusing
particularly on a comparative analysis of the marketization of long-term care
as a case study exemplifying the theoretical and policy tensions embedded in
the phenomenon of care.
The (R)evolution of Care Theory
Defining ‘care’
Following the work of Raymond Williams and other cultural theorists on the
political significance of definitions (Williams 1976; Schiappa 1998), it is not
surprising that the attempt to define and claim the elusive and ambiguous
concept of care has proven to be a rich source of dispute. The process is well
illustrated by the struggles over the meaning of words such as ‘carer’ and
‘caring’. The term ‘carer’ is now in common use in the UK, Australia and
New Zealand as it is in India and many other former colonies. But ‘carer’
remains a term that is not widely used or understood in the USA or Canada.
This is perhaps not so surprising when it is considered that it is an older word
only recently inscribed with its contemporary meaning (Fine 2007). The word
‘carer’, in common use over 200 years ago, previously described someone with
cares, that is, a person who worried constantly, someone who today might be
referred to, perhaps unkindly, as neurotic. The current use of the term first
appeared in the late 1970s when it was first used in Britain to identify women
excluded from public life by their lifelong commitment to provide unpaid care
to an aged or disabled family member or spouse (Barnes 2001). Although
contested as obscuring the activities of others who care but are excluded from
the definition (Bytheway and Johnson 1998; Fine 2004) the definition of ‘carer’
and ‘primary carer’ has been incorporated into national measures in a
number of countries – such as those used by the UK’s Office for National
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Statistics (ONS 2011) and Australian Bureau of Statistics’ Survey of Ageing,
Disability and Carers (ABS 2009), and is used to enumerate the target population
of carers.
In contrast to this highly focused definition, the definition proposed by Joan
Tronto extends the concept of caring to encompass a vast range of human
activity:
On the most general level, we suggest caring be viewed as a species
activity that includes everything that we do to maintain, continue and
repair our ‘world’ so that we can live in it as well as possible. That world
includes our bodies, our selves, and our environment, all of which we
seek to interweave in a complex, life-sustaining web. (Tronto 1993:103)
This definition seeks to delimit rather than confine the concept. The tension
between these two approaches – the focus on defining care narrowly as the
property or virtue of a particular group, or broadly as a widespread and
necessary ‘species activity’ – underlies the disputes that surrounded the use of
the concept by feminists and others since care first emerged as a political issue
and a theoretical proposition in the final decades of the twentieth century.
Each of these themes is evident in contemporary care theory in which care
emerges as both a complex and evolving social phenomenon and as an
enduring and inspirational moral value. Beyond the question of focus, there
are three clearly distinguishable facets or manifestations evident.
First, care is understood as a feeling or emotion involving a disposition
towards others (Benner 1994a; Bowden 1997). This appears as a personal
concern for the well-being of one or more others. The other may be a
dependent child or frail elderly parent, a lover, spouse, sibling or close friend.
But care as a disposition is not confined to those who are vulnerable, nor to
close family members or intimate others. It is also expressed as a concern for
the well-being of strangers and those, such as neighbours, who are generally
less well known. As Slote (2007) argues (Slote, 2007), empathy and the recog-
nition that the condition of another is important and that this involves both an
interest in their life and a degree of responsibility for their well-being is
fundamental to what we consider to be care. It is essentially a cognitive and
emotional orientation towards the other, insofar as this is understood also to
commonly involve culturally sanctioned moral sentiments. For some theorists,
this facet of care is its core and defining feature, while others see it, following
Hochschild, as a form of potentially stressful emotional labour (Benner 1994b;
Lee-Treweek 1998; Leidner 1999).
A second and distinct facet of care is the work and physical activity involved
(Harrington-Meyer 2000; Ungerson 2000; Glucksmann 2005). This perspec-
tive sees care as a form of labour, tending to the needs of another. This work
is time consuming and in many cases physically demanding. At its most
intense levels it involves the caregiver in extensive direct (skin-to-skin) contact
with the care recipient (Twigg 2000). Issues associated with work are high-
lighted from this perspective – including work load, financial reward and
opportunity, physical stress and burnout and the costs of care (Himmelweit,
1999). Competency is also clearly important here (Larson 1977). While mental
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©2012 Blackwell Publishing Ltd. 323
or physical exertion is sufficient for an activity to be designated as work, for the
activity to be considered care it is necessary that it benefit and not harm the
recipient. Incompetent or dangerous actions undertaken in the name of care
are likely to have an effect of causing damage rather than resulting in a
beneficial outcome for the recipient. The link between competency and work
is particularly crucial in the field of professional care, especially medical or
nursing care (McKechnie and Kohn 1999).
Acknowledgement of a third facet, in which care is understood as a social
relationship (Lloyd 2000), also serves to distinguish care from other forms of
work. The care relationship can be intimate, familial and enduring, but may
also be occupational or professional, limited in time and focused primarily or
exclusively on mental and physical well-being. Focusing on the emotions
involved, these are what Ungerson has labelled, in this order, warm and cold
care relationships (Ungerson 2005). The care relationship is a complex and
often difficult relationship involving power and dependency. Although the
provision of care was often portrayed as a process of control, in which the
caregiver was seen as the active agent providing assistance to a passive and
obedient recipient, this formulation has increasingly been portrayed as both
unrealistic and unacceptable, a point we return to in discussing disability and
care below. As Kittay points out, care is not a simple matter in which the
caregiver dominates the recipient. The caregiver, as much as the recipient,
loses autonomy through the acceptance of responsibility, and may risk being
dominated by the other through the sacrifices and processes of (over)identifi-
cation with the other involved in offering care. Like those who receive care,
those who give it experience dependency – although unlike the recipient’s
bodily dependency, in the case of the caregiver the dependency is likely to be
a social constructed dependence on what Kittay calls ‘the provider’ (Kittay
1999; Fine 2005).
Insofar as there is a common concern, the authors of care theories typi-
cally seek to address the way in which each of these facets is connected or
sequenced. While some seek to reduce care to just one of these facets, it is
more common to attempt to seek to address ways in which each facet is
linked to the others. Indicating the way that much of the subsequent care
theory would develop, an important distinction was made in what Ungerson
(2005:188) claims as the ‘founding collection of papers on care in the British
literature’ (Finch and Groves 1983) between caring about and caring for
someone. The former denotes the disposition towards the dependent, while
the latter is concerned with the physical work of caregiving. The distinction
served to reveal the gender gap in care – as men were seen as caring about
dependent children and others at home, but it was women who were
assigned the duties of work and who bore the ‘burden of care’ as a result
(Graham 1983; Ungerson 1983). Interestingly, recent research by Dutch
health economists has sought to measure the effects on carers of caring for a
person with high level needs and the family effects of caring about that
person (Bobinac et al.2010). Their results indicate that amongst their large
sample of care budget holders there were measurable effects of approxi-
mately equal size associated with both being a carer and with the family
effects of caring about that person.
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Without referring to the British or closely related European work (Waer-
ness 1984,1987; Knijn and Kremer 1997), Joan Tronto in the USA sought to
make similar, slightly more developed distinctions when she identified four
phases of care: caring about, the first phase, which involves an awareness of
another person’s needs for care; taking care of, the second phase, in which
responsibility is assumed and preparations are made to respond to these
needs; care-giving, the third, which involves physical work by individuals and
organizations; and care-receiving, the fourth phase, which requires collaboration
of the recipient. Tronto saw the caring process as a ‘full circle, with respon-
siveness requiring more attentiveness’ (Tronto 1998:1617). In this form-
ulation Tronto acknowledged that it was not possible to understand care as an
action by caregivers, alone. While caring about was a necessary first step,
common to men and women, she was quick to point out that men’s caring is
typically confined to the first two phases, while women caregivers, and other
oppressed and socially undervalued groups, are assigned responsibility for the
giving of care. Her insertion of the fourth phase is significant and indicative of
the direction that care theory was to develop in the following decade. Yet its
place in the scheme at first sight seems suspiciously like an afterthought.
Care and Justice
While the four phases of care set out in Tronto’s work echoed the distinction
made by British feminists between caring about and caring for, she was in
other ways working to advance a different paradigm: the ethic of care. Devel-
oped from the work of Carol Gilligan, the approach sought to value rather
than demean the ideals of care and to bring them into the public sphere as
shared public values. Rather than demanding that women adopt the values of
masculine style competitive individualism and abandon responsibility for care
as a burden holding them back, the ethic of care approach was seen as
acknowledging the importance of care as part of the recognition of women’s
rights.
Gilligan’s identification of the ethic of care initially grew from her research
as a cognitive psychologist with Lawrence Kohlberg. Her analysis of the
responses to some of Kohlberg’s vignette’s focused on the gender differences.
While many of the young men in the study appealed to a set of overarching
universal principles as a way of settling disputes about the right way to deal
with the issues of what is right or wrong, the young women concerned more
commonly sought to find ways of reconcile conflicts and to settle disputes by
keeping everyone happy. The approach they took, argued Gilligan, was not
evidence of a less developed approach to morality, but a different one which
she labelled an ethic of care (Gilligan 1977,1982). The approach was quickly
taken up by other feminists, initially in the USA (Noddings 1984; Tronto
1993).
One of the legacies of Gilligan’s research was that the values of justice and
care came to be treated as antagonistic and gendered (Crittenden 2001). This
has had particularly lasting effects in North America. There, despite a number
of dissenting voices (Armstrong and Armstrong 2005), care was primarily
understood as an ethical and psychological contruct, an essentially subjective,
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©2012 Blackwell Publishing Ltd. 325
particularistic and emotional value. Justice was similarly understood as an
ethical construct, one that was portrayed as a principle that is at once objec-
tive, universal and rational. The argument that ethical principles deriving
from care must be in conflict with principles of justice was vigorously
advanced by philosophers, including a number of leading feminists (Hoagland
1991; Benhabib 1995). As theorists of care, such as Tronto and Kittay (Kittay
1999), in the USA worked with Gilligan’s legacy, they sought to shift the focus
of debate away from a understanding care as merely a concern of one person
for specific dependents (such as the particularistic concern of a mother for her
child) and drew attention to the ideal of care as a universalist principle and to
the importance of constitutional recognition of an ethic of care. Perhaps
reflecting the more receptive political environment, Knijn and Kremer
argued from the Netherlands that the right to receive care, as well as the right
to give care needed to be given political recognition (Knijn and Kremer 1997).
This claim to give an ethic of care a constitutional level of recognition was
echoed and amplified by others, particularly in Europe (Sevenhuijsen 1998;
Morris 2001; Bubeck 2002; Engster 2007), making it increasingly difficult to
sustain the claim that ethical values based on care violate the ideals of justice.
Instead, the right to care – to give care, receive care and the right care for
oneself – as Fiona Williams neatly summarized it (Williams 2001), needed to
be seen as the most fundamental of the struggles for justice.
A ‘justice’ model of care translates neatly into the core concerns of social
policy: the well-being of citizens and the outcomes of policy for individual
citizens, communities and the state. It allows a focus on the social rights
associated with care: both the right to have the giving of care recognized and
legitimated, and the recognition of the right to receive care and support. This
concern for care as an issue of justice has been central to the approach
adopted to care and to research on caregiving in the UK, Northern Europe
and Australasia since the late 1970s (Barnes 2001; Fine 2007) where responding
to the isolation, poverty and social exclusion of primary caregivers has become
central to civic campaigns for the recognition of informal care. One of the
tangible results has been the creation and expansion of a vigorous carers
movement and a number of corresponding gains in the recognition of the
contributions of carers through benefits, payments and through acknowledge-
ment in national legislation, such as the Carers Recognition Bills in the UK
and Australia. In contrast, in North America where the emphasis has been
placed on demonstrating the burden of care through the ever finer measure-
ment of the psychological construct of ‘caregiver burden’ (Chappell and Reid
2002), the carers movement has been less influential and has struggled to
develop a strong national presence. As will be seen in the section on long-term
care policy, both social policy and care practice have struggled with the
tensions inherent in the ethics and justice of care (Rummery 2011).
Giving and Receiving Care: Feminist and Disability
Rights Perspectives
The tension between the feminist and disability rights perspectives on care has
been presented as irreconcilable. One the one hand, feminist writers have
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argued for a recognition of the ethic of care and a valuation of its practice
(Gilligan 1982; Tronto 1993; Sevenhuijsen 2000). Feminist social policy writers
have pointed out that the way in which care is feminized and undervalued
in market terms has led to care policies which rely on women providing
their labour either ‘free’ in the private sphere of the family, or in the
‘public patriarchy’ of the paid care sector (Daly 2002; Daly and Lewis 2000;
Ungerson 1990; Szehebehely 2005). Occupational segregation and the over-
representation of women in lower-paid care jobs are the main factors behind
the ongoing pay gap and women’s increased risk of in-work poverty (Rubery
et al.1998), and periods spent outside the paid labour market to provide
unpaid care is a major contributory factor to their increased risk of poverty
over the lifecourse (Walby 1997). Care policies are also responsible for
women’s under-representation and under-valuation in the non-care market
(Lister 1997; Fraser 1994). Ellis (2004) and others have used this evidence to
argue for a increased valuation of care, particularly women’s role in providing
care. Any moves towards the marketization or commodification of care (e.g.
through the introduction of care payments) have been viewed with caution by
feminist writers who are concerned that such approaches ‘close off the possi-
bility of an ethic of care’ (Hughes et al.2005:263).
On the other hand, disability rights authors such as Morris (2001,2004) and
Brisenden (1989) have argued that arguments for increasing the valuation of
care have relied overwhelmingly on the theoretical and empirical perspective
of those who provide care, and have neglected or downplayed the perspective
of those that receive care. For example, Waerness asserted that ‘the receiver of
care is subordinate in relation to the caregiver’ (Waerness 1984:189), and
Ungerson (1990) and Daly (2002) reaffirm the view that care recipients are
‘dependent’ upon care givers because of their incapacity and inability to
care for themselves. Brisenden has argued that relying for support on unpaid
carers is:
the most exploitative of all forms of so-called care delivered in our society
today for it exploits both the carer and the person receiving care. It ruins
relationships between people and results in thwarted life opportunities
on both sides of the caring equation. (Brisenden 1989:10)
Morris (1997) has also argued that care itself is a form of oppression against
disabled people:
The only way to empower disabled people is to throw off the ideology of
caring which is a form of oppression and an expression of prejudice.
Empowerment means choice and control; it means that someone has the
power to exert choice and therefore maximise control in their lives
(always recognising that there are limits to how much control any of us
have over what happens in our lives). Care – in the second half of the
twentieth century – has come to mean not caring about someone but
caring for in the sense of taking responsibility for. People who are said to
need caring for are assumed to be unable to exert choice and control.
One cannot, therefore, have care and empowerment, for it is the ideology
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd. 327
and the practice of caring which has led to the perception of disabled
people as powerless. (Morris 1997:54)
Disability rights activists such as Shakespeare (2000) and Finkelstein (1998)
have also sought to reject the language and ethos of care, preferring instead to
hark back to a ‘justice’ model of self-determination, control and clearly
defined and executable rights. Barnes (2006) and Williams (2001) have argued
that a model of citizenship rights to receive care as well as the right to give care
may be one way to reconcile what Kroger calls the conflict between perspec-
tives which are ‘poles apart and fully incompatible with each other’ (Kroger
2009:406). Others, including Lloyd (2000), Barnes (2011), Rummery (2011),
Watson et al.(2004) and Kroger (2009) have also attempted a synthesis
between these opposing theoretical positions. They have pointed out that a
revaluation of care is possible without it becoming oppressive and exploitative
for both carers and people receiving care. However, much of the strength of
their argument lies in two areas: first, the recognition of the reciprocal nature
of care and support and, second, the possibilities opened up by the marketi-
zation of care. On the first point, the role that disabled people play in giving
care is often overlooked – for example, as parents, grandparents, spouses, and
as children of older parents. Williams (2001) has argued for a universalist
approach to caring that recognizes interdependence. Caring relationships are
often complex, reciprocal and mutually supportive rather than being a simply
binary carer/care-recipient relationship (Rummery 2002; Fine and Glendin-
ning 2005). However, an ethic of care is arguably most important where there
is the least reciprocity: for example in the case of very young children, those
with severe learning impairments and advanced dementia (Kittay 2002;
Brannelly 2011). Some recognition of the need for care without care being
oppressive is called for.
On the second point, feminists initially lay great store in the role of the state
as an alternative provider of care which would free women up from enforced
caring (Parker 1992,1993) – but, as Morris and others have pointed out,
state-provided care can be just as disempowering as that provided by unpaid
family members, and disability rights campaigners have fought long and hard
to free themselves from the oppression of segregated accommodation and
state care (Keith 1992; Kroger 2009). Alternative solutions have been posited
whereby disabled people control the provision of care and support, either
through state or market providers. Beckett argues for such a solution:
Placing care into the marketplace, and giving financial as well as social
rewards to carers would begin to shift discussion towards a greater
valuing of both care and disabled people. Professionalizing care and
introducing policy that truly values both cared for and caring people
would result in a change in approach and a move away from traditional
understandings of both the position of women and the place of disability.
(Beckett 2007:377)
Beckett’s faith in the market is not shared universally. Lewis, Ungerson and
others have pointed out that the feminization and under-valuation of care
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328
work drives down wages and leaves carers open to exploitation and abuse,
while Rummery (2009) draws attention to the way in which the commodifi-
cation of care can lead to the exacerbation of social divisions between both
wealthy and poor carers and wealthy and poor recipients of care. Thomas
(2007) has argued that there is potential mutual benefit in raising wages for
both care recipients and disabled people. However, in an era of welfare
retrenchments where disabled people are facing cuts in the funding of publicly
provided social care and in income-replacement benefits it is likely that they,
rather than the state, will have to find the extra money for improved wages.
Nevertheless, choice and control for both parties would appear to be the key.
Rummery argues:
Carers are in a much stronger position to be able to be attentive,
competent, responsive and take responsibility for people if they entered
into caring relationships on a basis which enables them to exercise choice
over which elements of care they provide, and how. Disabled and older
people are in a much stronger position to ensure that the care they
receive is attentive, competent and responsive if they can exercise choice
and control through paying for it directly. (Rummery 2011:148)
Spandler (2004) astutely reminds us that welfare states in their present itera-
tion are largely needed because of the failure of the market to adequately
provide for citizens’ needs. (Re)commodifying care places both carers and
care recipients at risk of market failure.
Synthesising Care Theory and Practice: Self-determination
and Social Participation
A critical appraisal of care theory is necessarily complex. On the one hand, it
is important to be precise about terms, and to distinguish between caring about
and caring for; and as well as to acknowledge that both the feeling and doing
of care is an interpersonal relationship involving both individual and struc-
tural power dynamics. Those providing care can be in a relatively powerful
position vis-à-vis those receiving care, but this is not always the case. Care as
labour is provided in many different ways and the motivations and circum-
stances of those undertaking care vary considerably. It must be acknowledged
that carers, both in the family and paid sphere, are often undertaking work
that is undervalued, unpaid or subject to low wages, viewed as unskilled, and
open to exploitation and abuse: see for example current concerns about
migrant care workers in the informal ‘black’ and formal social care economies
of Western Europe (Williams 2010; Shutes 2011).
On the other hand, the advantages of disentangling and being precise
about terminology are perhaps outweighed by the disadvantages of acknowl-
edging the complexity of care: that it is simultaneously emotion and labour and
relationship, and that this is the case for paid and unpaid carers, as well as for
those receiving care. Barnes (2006) has argued that the social care policy and
practice shows that legal frameworks and ethical codes govern much of the
behaviour of professional carers:
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Both legal frameworks and professional codes aspire to ensure that the
practice of social and health care contributes to social justice objectives.
(Barnes 2006:159)
However, attempts to codify care and bring it within the public domain of
‘justice’ run the risk of divorcing it from its ethical and emotional roots. This
has been explored with regards to family carers but it is increasingly also the
case for professional care workers, even where such workers are relatively well
paid, respected and supported (Rostgaard 2002; Szehebehely 2005). There is
overwhelming empirical evidence that care workers are motivated by the
emotional aspects of their labour and that it is for them difficult to divorce
caring ‘about’ from caring ‘for’ (Waerness 1984).
When viewed alongside the evidence from the recipients of care, this places
us in a difficult and complex analytical position. The emotional, ethical side of
caring cannot be easily marketized or professionalized: genuine emotional
caring ‘about’ cannot be bought or forced. While the importance of training
and professional selection for care is widely stressed, this is also no guarantee.
At the time of writing, a series of abuses in UK care homes of adults with
learning disabilities was prominent in the news, as was news of neglect of older
people in geriatric wards in hospitals: in both cases, the care facilities had
passed inspection by the legal frameworks designed to protect the quality of
care given to care recipients – ‘justice’ aspects of care had been met (Ramesh
2011). Sadly, readers of this article will be able to find recent comparable
examples in their own national contexts, regardless of when they read this.
When divorced from the caring ‘about’, it is very easy for the labour of caring
‘for’ to become mechanistic at best, and abusive at worst. Morris and other
disability rights authors have posited this phenomenon as being due to the lack
of control and empowerment experienced by disabled people in the context of
receiving care (Morris 2004; Shakespeare 2000). However, we would argue
that it is also due, at least in part, to the provision of care becoming a technical
process of labour, divorced from the ethical and moral precept of care out-
lined by theorists such as Gilligan and Tronto. In the sense of the ethical,
emotional aspect of care, the right to receive care must always be regarded as
qualified by the fact that it is difficult to enforce emotion. Despite their
imperfection, legal sanctions against abuse and neglect in all care relationships
remain essential.
However, this does not render untenable calls for the right to receive care
to be treated as a citizenship right (Knijn and Kremer 1997; Williams 2001). A
synthesis of the two ostensibly opposing theoretical perspectives on care as
ethics and justice is possible if we introduce (maintain a focus on) the concepts
(or ‘conditions of democratic citizenship’) of self-determination, social partici-
pation and choice. Although originally developed as a way of conceptualizing
poverty (see, e.g. Townsend 1993; Sen 1992; Ringen 1987; Nolan and Whelan
1996; Veit-Wilson 2004), the idea of the ability to participate in social life
framed by access to resources works also as way to conceptualize care. Access
to care, and the giving of care, can be seen as an important part of the
resources which are both drawn upon and needed for social participation.
Correspondingly, both the giving and receiving of care – if given, and
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330
received, out of choice, rather than out of obligation or because no other
options are available – should be conceptualized as citizenship rights. If carers
(both family and professional) freely chose to provide the labour of care, we
know from the empirical evidence that part of their motivation to provide that
labour will be the emotional aspect of caring ‘about’ the person, which is not
necessarily the same as the paternalistic caring ‘for’. Providing that care will
be an important part of the way in which they ‘participate’ socially, particu-
larly if that care is recognized and valued by themselves, the recipient, and by
wider social structures. If care is provided by choice, and valued, then those
providing the care will be highly likely to link both the ethics of care and
justice.
Social participation, choice and control must also be also key elements of a
citizenship approach to receiving care. As discussed above, when care is not
given freely, it places care recipients in a position of being under a ‘burden of
gratitude’ (Galvin 2004), feeling disempowered, exploited and unable to par-
ticipate socially in the way they would wish (Morris 2001; Brisenden 1986). It
is for this reason that Morris and others claim than unpaid care provided by
family is the ‘most exploitative’ form of care. If care recipients are in the
position to be able to chose the type of care they receive (including who
provides that care, what they do, and how and when they do it) then they are
also freer to fulfil the moral and ethical dimensions of being a ‘good’ recipient
of care. We would not necessarily assert, based on the evidence, that this
means that all care should be provided by paid carers rather than unpaid
family carers, but it is clear that having choice and control over care is a key
element of disabled people’s aspirations to have access to the resources to
exercise self-determination (Shakespeare 2000).
In the next section we use this ‘citizenship’ framework of care to examine
current developments in long-term care in developed welfare states, examin-
ing whether these developments are increasing or limited the ability of those
who give and receive care to have access to resources which enable their social
participation.
Tensions in Care Policy: Care Regimes and Marketization in
Long-term Care
Comparative trends in long-term care
Long-term care (LTC) is the term usually used for non-health care that is
provided to disabled and older adults in developed welfare states. Until
relatively recently, the bulk of state expenditure was on services provided
through residential institutions and extended hospital care and the rest was
provided through non-state means (usually through informal care and the
family) (OECD 1999). Due to demographic and social changes (a mix of social
and economic changes including ageing populations, changes in family struc-
ture and increased female labour market participation) this has changed
rapidly and who provides and funds long-term care is fast becoming one of the
most contentious contemporary political and social policy issues in developed
welfare states. Beyond the well accepted but very general ideas such as the
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd. 331
promotion of community care and ‘ageing in place’ (OECD 1998; Casey et al.
2003), it is difficult to establish a dominant ‘policy paradigm’ that provides a
coherent framework of ideas that guides policy in the field of LTC, as there
are inherent conflicts and tensions underpinning policies between as well as
within countries (Fine 2007; Pfau-Effinger and Rostgaard 2011). In this
context, the concept of care regimes is important as an attempt to extend care
theory from a normative moral philosophy into a political analytic framework.
If we look at table 1, in which six European comparator countries are listed
in rank order of expenditure on LTC, we can see marked differences in both
expenditure on care and in the proportion of the population receiving care. It
is clear there is no direct correlation between potential demand and supply of
formal long-term care and that other factors must be coming into play.
The most common explanatory framework used for understanding varia-
tion in long-term care patterns is that of welfare regimes. Esping-Andersen
(1987,1990) with whom the approach is closely associated, identifies three
relatively distinct constellations of regimes in Western capitalist democracies
which he argues provide a political-institutional logic for the formulation of
social policy over time. One of the features of this is the extent to which
welfare policies are based on familiastic and de-femalialised care systems, a
distinction which Lewis (1992) asserts is over-simplistic and of limited use in
understanding policy developments. Anttonen and Sipila (1996), analyzing
both child-care and institutional care for the over-65s, found not three, but
four groups: those with abundant social care services (Denmark, Sweden and
Finland), those with scarce social care services (Portugal, Greece, Spain,
Ireland and Germany), those with abundant services for older people but
scarce services for children (Netherlands, Norway and the UK) and those with
abundant services for children but scarce services for older people (Belgium,
France and Italy) (Anttonen and Sipila 1996:93).
Table 1
National expenditure and use of long-term care in six European nations
Country Public
expenditure
on long-term
care as %
of GDP
%of80+in
population
%of65+
receiving
formal care
%of65+care
recipients
receiving care
in institutions
% of public
expenditure
on formal
care spent on
institutional
care
Sweden 3.95.415 38 59
Netherlands 3.63.627 24 68
Italy 1.75.212 17 26
Austria 1.34.417 19 43
UK 1.24.416 22 47
France 0.94.7 7 39 57
Source: National data sets for 2007 compiled by Huber et al.(2009).
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd.
332
Bettio and Platenga (2004), again looking at formal and informal care for
children and older people, found clusters of care regimes following similar
patterns. If we focus, for the purposes of this article, only on their findings
regarding care strategies for older people, we can see in table 2that strategies
area variable even within clusters or regimes.
As Daly and Lewis (2000) have pointed out, different patterns of care
provision often reflect different (and sometimes internally conflicting) ideolo-
gies and normative frameworks, rather than reflecting need or demand.
Looking at our country comparators, in the UK, care ideology has favoured
a female part-time worker/carer model, with family care shared with the state
and increasingly residual and rationed access to formal long-term care: politi-
cal support for ‘family care first’ is strong, despite there being a choice of
publicly funded care options and locally determined eligibility for care services
and some regional differences in eligibility for free long-term care (Forbes et al.
2010; Moffatt et al.2011). The Netherlands has also favoured a female part-
time worker/part-time carer, although there is much more specific political
support for publicly funded long-term care (considered to be one of the
‘cornerstones’ of the Dutch welfare state), with choice of provision and reduc-
ing ‘dependency’ on family care considered important (although the popular
care payments system has recently been revised and reduced in response to
funding problems) (Da Roit 2010; Hurenkamp et al.2011). Italy has shown very
little support for the development of formal, state-provided care (favouring a
housewife/carer model), but has developed relatively unregulated care pay-
ments, and a concern about migrant labour replacing family care (Da Roit
2010; Pavolini and Ranci 2008). Austria – although having a more strongly
social-democratic commitment to the state provision of welfare and social
insurance scheme to cover long-term care – has a similar ideological and
normative commitment to family care being the preferred/default option, and
a similarly relatively unregulated use of care payments (Oesterle 2001;
Kreimer and Schiffbaenker 2005; Le Bihan and Martin 2006). France has
developed a combination of a familiaist regime of predominantly relying on
Table 2
Care strategies and public expenditure on pensions in six European nations
Index of public
pension schemes
Informal
care
Residential
care
Community
care
UK Medium High High Medium
Netherlands High High High Medium
Italy High High Low Low
Austria High Medium Medium Low
France Medium Low Medium Low
Sweden Medium n.a. Medium High
Source: adapted from Bettio and Platenga (2004) and Eurostat figures on expenditure on old
age pensions and number of residential places/community care personnel per 100/65+.
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd. 333
unpaid family care whilst also developing a system of insurance and needs-
based care payments designed to be used in a highly regulated market (Da
Roit and Le Bihan 2010). Sweden retains the most strongly articulated ideo-
logical commitment to state-provided long-term care, with a dual
breadwinner/institutional care model and the ‘right’ to claim state assistance
with care if needs cannot be met – it has also developed care payments but
these are used by relatively low numbers of recipients (Aronsson 2007; Pav-
olini and Ranci 2008).
Common themes and policy drivers are apparent across welfare regimes,
even if different ideological and normative cores underpin the drivers and
show themselves in different policy responses (Pavolini and Ranci 2008). Care
policy provides several areas where policy ‘tensions’ are played out (Pfau-
Effinger and Rostgaard 2011). A split in the governance of care between social
rights managed through central government with universal eligibility criteria
(such as income-replacement benefits for carers who do not work) and those
which are managed by municipalities at a local level (such as the right to
access community-based or residential care, where it is available) is one
tension that is apparent across welfare regimes. Another is a sustained pres-
sure to move care services away from hospital or residential-based services
into community and domiciliary-based services (often shunting costs from
health providers to municipalities in the process). A third tension is evident in
moves towards the commodification of care, through attempts to stimulate a
mixed economy of paid family, state and third or private sector providers.
One does need to approach the issue of ‘marketization’ or commodification of
care services with some caution: a closer analysis reveals that these terms do
not necessarily mean the same thing in different welfare contexts – there has,
for example, been relatively low levels of non-state provider involvement and
real marketized choice and competition in Denmark and Sweden as com-
pared to Germany and the UK (Eichler and Pfau-Effinger 2009; Theobald
and Kern 2011; Winslow and Borg 2008; Pavolini and Ranci 2008; Martin
et al.2011). However, what is particularly interesting to note is that all six
countries under review have developed some kind of cash-for-care scheme,
whereby cash is routed either to disabled/older people or to carers to facilitate
direct purchase of care in lieu of directly provided care services (Ungerson and
Yeandle 2007; Da Roit and Le Bihan 2010; Rummery 2011).
Analysis of such cash-for-care schemes as have been developed by the
comparator countries here reveals that different typologies are emerging that
do not necessarily correspond to the Bettio and Platenga model. For example,
different levels of governance for schemes means that in some cases they are
highly regulated and used for formal care providers (France and the Nether-
lands), and in others they are used to purchase care from migrant labourers or
family members (Austria, Germany, Italy) (Rummery 2009; Da Roit and Le
Bihan 2010). Issues concerning the protection of formal, unionized care
workers have affected policy developments in the former, and issues concern-
ing the under-development of formal care provision and a black economy of
low-waged labour, particularly southern Europe and non-European migrants,
have played an important role in the latter. These policy drivers are not
necessarily directly connected to the gendered assumptions underpinning
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd.
334
welfare provision, but they do have outcomes that sharpen social divisions
such as gender and class (Rummery 2009), reflecting the fact that that care
policy is the site of many different policy tensions (Pfau-Effinger and Rost-
gaard 2011).
Care regime theory and comparative analysis of developments in care
policy is still dominated by scholarship which has its roots firmly in feminist
concerns about those who provide care. Patterns of supply of care – formal and
informal, state- and market-oriented, funded and unfunded – provide the
evidence base upon which classifications are predicated. Whilst there is a
growing body of research that focuses within national systems on the perspec-
tives of those receiving care that looks at issues of access, social citizenship,
independence, control, quality of care, dignity, ethics and justice, there is as
yet relatively little research that does this comparatively. We can say with
some confidence that some types of care regime provide better social rights
and protection for formal and informal carers than others, that some (notably
the Scandinavian regimes) offer more equitable outcomes on gendered lines
than others (particularly the familiastic and neo-liberal regimes – the UK,
Austria, France, the Netherlands and Italy, for example). We can even go so
far as to say some provide relatively generous state support for the provision
of care compared to others, and give individuals access to different types of
benefits (or policy ‘inputs’). However, notwithstanding the growing body of
excellent but relatively small-scale qualitative comparative studies of care
quality there has as yet been no systematic body of evidence gathered to
compare the different types of care regime to establish whether some types are
better than others at providing equitable policy ‘outcomes’ for those who
receive care.
Just as care theory, in its initial stages, was overly focused on the activities
of the care provider, neglecting the recipient, so too does the care regime
approach face the challenge of incorporating care recipients. This reflects
both the epistemology of disability studies body of scholarship, which would
focus on the experiences of those who receive care, but rejects the ideology of
care as inherently disempowering and the emphasis in policy discourse and
practice on giving the care recipient increasing responsibility for his or her
own care arrangements through personalization, care payments and related
developments. It also reflects the fact that the other body of scholarship
focusing on those who receive care are gerontologists and other academics
concerned with ageing but, by definition, not old or receiving care themselves
– in contrast to the feminist and disability studies scholars who are often
examples of Ungerson’s assertion that ‘policy is personal’, drawing on their
own lived experiences to develop theoretical frameworks and empirical
approaches based for a large part on a concern for those providing the care.
Care, Citizenship and Empowerment
While the development of the ethic of care approach has seen care advocated
as a political value, an alternative approach based largely on care research
undertaken mainly within the British and European social policy traditions
has seen care as a form of unpaid work, often exploitative and frequently a
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd. 335
burden on those charged with its responsibility, whether unpaid as carers or
paid as careworkers (Land 1978; Finch and Groves 1980; Waerness 1987,1989;
Ungerson 1990; Land 1991). Not surprisingly, it is writers from the social
policy tradition who have most readily engaged in discussions linking the
economics of care and carework to the moral concerns of care theories. Yet,
as Nancy Folbre points out, economics has long ignored the phenomenon of
care (Folbre 2001). In turn, the concept of care developed in recent decades by
feminist and other scholars has quite rightly posited as a rejection of economic
notions and explanations of human behaviour. Yet an understanding of
economics of care, unpaid as well as paid is essential if care theory is to
reshape policy and to provide the basis for further empirical and analytic
research.
To the extent that care is understood as a labour process, then the eco-
nomic circumstances of carers and careworkers matter. Similarly, the finan-
cial impacts of different forms of care payments and approaches to the
financing and operation of care services are important topics for research.
Recognition of these sorts of concerns is prominent in the work of a number
of researchers (including Aronson and Neysmith 1996; Ungerson 1997; Him-
melweit 1999; Ungerson and Yeandle 2007). The contribution of each of these
writers (and many more) has been important, for the detailed empirical
analyses they have presented, for the critical contribution to policy-making,
and for the development of thinking about carers and care work. While this
work has also included considerable attention to the different financial ques-
tions associated with care services and payments, without an underlying
theoretical analysis that draws together the links between care and economics
it has proven difficult to bridge the divide between the separate worlds of
economic analysis and care.
Others have followed an alternative approach. Perhaps the most influen-
tial of all has been the work of Bleddyn Davies and colleagues, who have
developed an economics of care provision, based on the concept of the
production of welfare (Davies et al.1990; Davies and Knapp 1994). While this
and a number of related approaches provide important tools for the eco-
nomic evaluation of different forms of care provision, the approach in prac-
tice is effectively a ‘nothing but’ reduction of care to economic fundamentals.
Systematic techniques for the quantification of such elements as carer stress
enable care to be analyzed as an economic activity, but the intrinsic char-
acter of care, the interpersonal human relationship at its core, is difficult to
trace.
Increasingly, developments in policy associated with the retrenchment
and move away from direct provision of care by the state are being reflected
in the development of care theory. Developments such as the marketization
of care through the development of mixed market economies in statutory
services and the direct payment of care allowances to users has been par-
ticularly important in this regard, as has the development of flexible care
‘markets’, the use of low-waged (often migrant) labour and debates on the
finance of aged care.
It has been argued that these developments have the potential to move
away from a ‘professional gift’ model of welfare delivery (Le Grand and Duffy
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd.
336
2009) towards ‘citizenship’ model: whereby disabled and older people are no
longer the passive recipients of care, but actively involved in their care
(through designing and commissioning services, and through directly purchas-
ing and providing care). However, we would argue that this marketized vision
of citizenship does not necessarily represent unmitigated good news for the
social participation and self-determination of carers and cared-for.
First, the ‘labour’ involved in providing care is, as we argue earlier, femi-
nized and typically undervalued. Where the state has been actively involved in
employing carers there has been some progress towards the professionaliza-
tion of care workers (Sweden, France), providing employment rights and
prospects, although it has not made a significant impact on the gendered
division and segregation of labour involved in providing care. If marketization
happens with the main driving force being the push towards cost containment,
then wages and conditions for care workers are likely to suffer. This gives rise
to concerns about the social participation for both low-paid, undervalued care
workers and for care users relying on their labour: people working in under-
valued conditions for low pay are likely to be under significant pressure and be
less supported to provide ethical care which is ‘responsive and attentive’
(Tronto 1998), and those being cared-for by such carers are likely to be at
significant risk of exploitative, low-quality care that fails to meet their needs at
best, and is abusive at worst.
Second, writers such as Le Grand lay a great store in markets in the delivery
of care because it gives users the ability to exercise ‘choice, voice and exit’.
However, unless these choices are well-resourced then they are not real
choices in any meaningful way, and the exercise of choice is likely to heighten
social divisions. For example, well-resourced carers can choose whether or not
to provide care, to whom, and whether they wish to be reimbursed financially
for that labour. Well-resourced care-recipients can chose who provides their
care, what those carers do, and whether or not they are reimbursed financially
or do so through kinship or emotional ties. Poorly resourced carers, and
poorly resourced care-recipients have far fewer choices, and fewer options to
‘exit’ care relationships and chose other arrangements. Access to resources is
key to social participation, and as Daly and others have pointed out, care is a
good like any other resource.
We would argue that care needs to reframed within a discourse of citizen-
ship, rather than markets, for it to become a means of self-determination and
social participation for both carers and cared-for, so long as this discourse
encompasses an element of choice. Carers need to be free to choose whether
or not to care, and how to provide the labour of care, and care-recipients need
to be free to choose the level and type of care they receive, and from whom.
Marketization is only one means of offering choice and, as the example of
LTC policy shows, it does not work perfectly to support autonomy amongst
poorer, disenfranchised people with access to fewer resources. The role of a
developed welfare state in improving access to resources is crucial in care, to
support the citizenship of carers and care-recipients.
The challenge remains to develop social-economic frameworks through
which the deeper connections between economics (broadly understood) and
care can be explored. This sets out an agenda for research and theory at two
Social Policy &Administration,Vol.46, No. 3,June 2012
©2012 Blackwell Publishing Ltd. 337
levels. The first involves an exploration of the capacity of economic analyses
to extend our understanding of care. The second requires a demonstration of
the importance of care for understanding broader social and economic pro-
cesses. Such a framework needs to examine the way in which care is gendered
and has the character of an embodied social relationship, structured by
relations of power and dependency.
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... That such norms of reciprocity exist in caregiving relationships have been shown by a number of studies (e.g., Blieszner & Hamon, 1992;Lee et al., 2003;Silverstein et al., 2007). This also points to the complexity of caregiving as the intertwining of love, work, and relationships, which is discussed especially in the area of gender studies (Rummery & Fine, 2012). ...
... Supplemental material for this article is available online. Notes 1. See, among others, Rummery and Fine (2012) for a critical review of care in social theory and its relevance for and inclusion in policy and practice, and Hochschild (2001) and Kittay et al. (2005) for a probing consideration of long-term care as a profession with cross-national mechanisms ("global care chains"). 2. Social inequality is not a uniquely defined concept, and it involves a variety of parameters and correlations. ...
Article
Objectives: In Germany, roughly 8.3 million people are in need of care, but only one-third of them receive state care benefits. The study investigates whether the individual network of a care-seeking person, as well as its resources, interact with health status on the likelihood of accessing formal care services. Methods: German data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from 2015 were used in several Firth logistic regressions with interaction terms. Results: Health limitations are a significant predictor for the probability of receiving formal care benefits. As moderating factors, caregivers from the immediate family as well as caregivers with lower levels of education tend to contribute to an increase in this probability. Discussion: Findings are based on a limited data set and indicate the importance of further research in this area to examine the mechanisms of access to formal care more precisely.
... As a result, decision-making concerning the care solutions may imply a varying degree of involvement of and different relations between three main actors: the person in need of care, the informal caregivers and the care professionals. Rummery and Fine (2012) argue that choice for carers implies being free to choose whether or not to care and how to provide care, and that choice for care recipients implies being free to choose what type of care to receive and from whom to receive it. Following this perspective, we suggest that these choices are interdependent to degrees that differ depending on the circumstances of the person in need of care and his/her family configuration, on the specific design of the cash-for-care scheme and on the context in which decision-making is embedded. ...
Chapter
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Introduction Public responsibility for long-term care (LTC) – in particular, care for frail older people – has expanded rapidly in most advanced nations in the past two or three decades. A key issue is resource allocation: how much money to spend and on what. But although the LTC field has drawn more and more attention from researchers – we know far more about how various approaches work than ever before – patterns of resource allocation have not been adequately studied. As a recent report indicates, ‘the current available statistics about public LTC programs are somewhat patchy’ (Carrera et al, 2013, p 31). Actually, information is available about LTC expenditure in most individual countries, and recently several admirable surveys of LTC policy across several countries have appeared (see, for example, Colombo et al, 2011; Riedel and Kraus, 2011; Mot et al, 2012; Rodrigues et al, 2012; Genet et al, 2013; OECD, 2013; Ranci and Pavaloni, 2013; Mor et al, 2014). However, systematic comparative analysis of expenditure and coverage of national LTC systems has been lacking. The objective is simple; the task is quite difficult. Two of us discovered this in trying to compare expenditures in just three countries, Germany, Japan and the US (Campbell et al, 2010). It took far longer than we expected and required many delicate decisions to match up the categories. The present study takes on seven countries, a number small enough to manage the necessary mutual adjusting with our limited time and resources, but large enough to represent significant models of LTC policy. To draw on quite conventional images in the welfare state literature, we have Sweden in social-democratic Northern Europe, Italy in familial Southern Europe, Germany in corporatist mid-continent, Australia, the US and England as quite different versions of the Anglo-Saxon ‘residual’ model, and Japan as the relatively new entry that shares aspects of all the other models. This chapter presents details of each country's approach to LTC and how their policies have changed over time. This chapter is essentially a ‘snapshot’ cross-sectional analysis of spending and coverage data. Since our contribution is largely methodological, we begin by explaining how we have tried to deal with the inherent problems of comparing LTC policy. There are four key approaches.
... As a result, decision-making concerning the care solutions may imply a varying degree of involvement of and different relations between three main actors: the person in need of care, the informal caregivers and the care professionals. Rummery and Fine (2012) argue that choice for carers implies being free to choose whether or not to care and how to provide care, and that choice for care recipients implies being free to choose what type of care to receive and from whom to receive it. Following this perspective, we suggest that these choices are interdependent to degrees that differ depending on the circumstances of the person in need of care and his/her family configuration, on the specific design of the cash-for-care scheme and on the context in which decision-making is embedded. ...
Chapter
Full-text available
The previous chapters have examined a range of strategies across OECD countries for organising, regulating and funding long-term care (LTC) public services for dependent older people in the face of the rising needs of ageing societies. These chapters have highlighted the main LTC models and reforms adopted internationally, provided a critical assessment of their successes and limitations, and drawn key recommendations for future policies. This concluding chapter reviews their findings in order to map and discuss the most important challenges and dilemmas that LTC policies will face in the years to come. Rising demand Future policies must take account of the expected rise in demand for LTC for older people. Chapter Two, by Wittenberg, shows that demand for LTC is expected to rise throughout the developed and developing world. The number of older people needing care is projected to rise partly because the large post- Second World War baby boom cohorts are starting to reach old age, and partly because increasing life expectancy means that a rising proportion of older people are surviving into late old age. The growth in demand for formal LTC is a complex issue which requires careful consideration. Need for care is not determined simply by age. Much will depend on whether there is a compression or expansion of disability, that is, whether, as total life expectancy increases, the number of years with severe disability remains constant, rises or falls. The issue of the compression or expansion of disability is the subject of much continuing debate. It would not seem prudent for policymakers to count on future reductions in the prevalence of severe disability among older people to offset the rising demand for LTC that will result from population ageing. An expansion of severe disability, including dementia-related disability, cannot be excluded. Demand for care services is not solely a function of the numbers needing care. It also depends on the availability of alternatives to services, the cost of care services, incomes, and expectations and preferences. The main alternative to formal care services is unpaid care by family and friends. Uncertainty about future supply of unpaid care, as discussed in the next section, could have a major upward impact on demand for formal services.
... As a result, decision-making concerning the care solutions may imply a varying degree of involvement of and different relations between three main actors: the person in need of care, the informal caregivers and the care professionals. Rummery and Fine (2012) argue that choice for carers implies being free to choose whether or not to care and how to provide care, and that choice for care recipients implies being free to choose what type of care to receive and from whom to receive it. Following this perspective, we suggest that these choices are interdependent to degrees that differ depending on the circumstances of the person in need of care and his/her family configuration, on the specific design of the cash-for-care scheme and on the context in which decision-making is embedded. ...
Chapter
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Introduction A key policy debate in long-term care (LTC) policies across OECD countries today can be summarised by the following question: what measures and strategies can be adopted to optimise resources? New policies are required for balancing finances and access to care, with different options on the table and waiting for governments’ decisions. This chapter looks at changes over time in public resource allocation among LTC users in the same OECD countries considered in the previous chapter (except for Australia). As in Chapter Four, this chapter focuses exclusively on public care inputs, defined as those inputs that are (at least partially) publicly funded, and looks at users aged 65 and over. Chapter Four led the way to reconsidering how public resources are allocated in different LTC systems through an in-depth analysis of current spending. To complement that analysis, this chapter adopts a long-term perspective, investigating the changes that have occurred over the last 20–25 years in three crucial dimensions of resource allocation: the mix of LTC services for older people, their intensity, and their coverage. The countries considered are representative of the OECD environment with respect to both the overall welfare models and the models of LTC policies. Concerning the former, as Campbell et al have noted in Chapter Four, ‘we have Sweden in social-democratic Northern Europe, Italy in familial Southern Europe, Germany in corporatist mid-continent, Australia, the US and England as quite different versions of the Anglo-Saxon “residual” model, and Japan as the relatively new entry that shares aspects of all the other models.’ From the point of view of LTC policies, the sample of countries selected represents the different models in the OECD context: • • Universal coverage within a single programme: this model guarantees people access to formal services without taking into account users’ income or assets as eligibility criteria. It is also organised as a single system, separated or integrated with the overall health system (Germany, Japan and Sweden). • • Mixed systems: in this case, LTC is provided through a mix of different universal programmes and benefits operating alongside, or a mix of universal and meanstested LTC entitlements (England and Italy). • • Means-tested systems: under this type of scheme, LTC coverage is provided through safety-net programmes. In countries using this system, income and/ or asset tests are used to define thresholds for eligibility to publicly funded care.
... Thomas (1993) emphasises that care is differentiated, not generic, focusing on the need to describe and analyse empirical instances of care, instead of seeing care as an analytical category in its own right. Lawson (2007) also examines care as produced within particular, historically emergent, social and institutional relationships, and as potentially riven with tensions because it involves a mix of emotions, social and power relationships as well as work (see also Rummery and Fine, 2012). Lawson describes how an ethics of care draws on 'a social ontology of connection … care ethics understands all social relations as contextual, partial, attentive, responsive and responsible ' (2007: 3). ...
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This paper engages with debates surrounding practices of care in complex situations where human and non-human lives are entangled. Focusing on the embodied practices of care involving farmers, their advisers and cows and sheep in the North of England, the paper explores how biosocial collectivities fabricate care around endemic health conditions in specific farming situations. Based on in-depth research with farmers and advisers, the paper examines how Bovine Viral Diarrhoea (BVD) and lameness are made ‘visible’ and become cared about, what practices are mobilised in response to an evident need to care, and how some animals are, paradoxically, made ‘killable’ in the practising of care for populations of cows and sheep. The paper discusses how the perspectives of farmers and advisers are aligned in developing practices of care for animals, although there are some tensions and differences between these groups. Advisers focus on making endemic diseases important to farmers, so that they become enrolled into taking prescribed action. However, the sets of competing priorities farmers have to address, in complex on-farm situations, along with some resistance to taking prescribed action, produces other perspectives on and practices of care. The paper concludes by emphasising the problematics of practising care in farming, showing how care for endemic disease coexists with harm to some animals and the reproduction of modes of farming which make it more likely that endemic conditions persist.
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Critical studies of men and masculinities [CSMM] aim to advance gender equality by critiquing and deconstructing male hegemony and hegemonic masculinities. Although the implicit value of gender equality is clear in CSMM generally, the conceptualization of equality is frequently vague, implied, and lacks conceptual definition. The problem is compounded in caring masculinities studies which additionally often lack engagement with critical feminist and other socio‐political perspectives on caring. These shortcomings hide the complex interrelation of different dimensions to inequality as they intersect with multiple relational identities. Caring practices are also complex, having distinct phases that engage different forms of labor within separate relational contexts. In response, this article proposes the model of affective equality (Lynch et al., 2009) and the concept of care as relational social practice (Tronto, 1993) as normative perspectives that explicitly link care with equality. The case of professional caring, where the impact of CSMM has been especially limited, is used to illustrate the micro‐politics of how men manage their identities within the context of feminized caring. Here, men face the precarious task of managing their masculine status while navigating emotional expectations. Caring masculinities studies can be advanced with greater theoretical and empirical attention to (i) the intersection of multiple inequalities; (ii) the affective circles of caring; (iii) the specificity of caring work; (iv) the inequalities of caring; and (v) the ethics of caring practices.
Article
Due to demographic ageing, many welfare states have restructured their long‐term care (LTC) policies by simultaneously extending older people's social rights to publicly‐funded care and strengthening their active role in handling their care situation. By doing so, they are increasingly constructing older people as active social citizens. However, the consequences of this shift for older people's social risks are controversial and whether it comes at the cost of public responsibility for ensuring sufficient care provision. Therefore, this study investigates to what extent European welfare states differ in terms of how they conceptualise older people as active social citizens in their LTC policies and how these differences affect older people's social risks. It introduces an innovative typology to classify LTC policies with respect to different approaches towards active social citizenship and related social risks. It applies this approach to a cross‐national comparison of five European countries using data on LTC policy regulations, comparative policy databases and secondary literature. The findings indicate that European LTC policies promote active social citizenship to different degrees and that we have to consider whether strengthening older people's active role coexists with generous social rights to publicly‐funded care in order to understand the consequences for their social risks.
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This paper sets out a theoretical agenda for Cultural Landscapes of Care. It highlights the importance of engaging the cultural vectors within different ‘care-ful geographies’, in order to highlight the role of culture as both a lens of knowing a meaningful way of life, and a critical hermeneutic. Through revisiting discussions around everyday practices of care, both in this journal and elsewhere, we outline a research agenda that re-engages culture with inquiries into the relations between place and care, including spatialities of care, ethics and justice. We call for a shift to thinking with culture and its moral dimensions in order to make sense of the tensions, ambiguities and boundaries of care marked by austerity, neoliberalism and globalisation. We therefore coin the term ‘cultural landscapes of care’ to advance an agenda that is contextually and culturally sensitive, and committed to understanding what good care means in diverse trans-local contexts. Gathering together the papers in this collection, we show how culture ‘filters’ through meaningful everyday care practices. We argue for an understanding of culture as a toolkit and a condition for ethical encounters of care. Thus, we translate situated examples of caring experiences into a global standpoint of care-ful geography.
Presentation
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Resumo: O direito a viver de forma independente e incluída na comunidade, consagrado no artigo 19º da Convenção sobre os Direitos das Pessoas com Deficiência, consubstancia uma das questões mais debatidas internacionalmente no quadro dos direitos humanos nesta área, carecendo de aprofundamento no contexto Português. Esta comunicação apresenta uma construção teórica, a partir da revisão de literatura, baseando-se nos seguintes eixos: as alterações e debates políticos e legislativos relativamente à vida independente em Portugal e suas implicações para as pessoas com deficiência intelectual; os significados da vida independente reunindo perspetivas de várias abordagens teóricas e atores sociais; e, por fim, os principais fatores facilitadores ou constrangedores para promover a vida independente das pessoas com deficiência intelectual, integrando particularmente os discursos das pessoas com deficiência mas também dos familiares e profissionais. Algumas das conclusões que se procuram desenvolver na apresentação incidem nos seguintes aspetos: no contexto português assiste-se a mudanças, como a transformação no modelo da capacidade jurídica que possibilita o processo de tomada de decisão, mas o desenvolvimento dos suportes comunitários e (des)institucionalização suscitam discussão, exigindo uma análise sobre os significados e práticas associados a tais processos; o termo “vida independente” é controverso e pode beneficiar de uma aproximação entre múltiplos contributos teóricos, procurando conciliar o cuidado e a independência, o que justifica reforçar a articulação entre as perspetivas teóricas feministas, os estudos críticos da deficiência e os discursos e práticas no quadro dos direitos humanos; os elementos facilitadores ou constrangedores para a vida independente exigem uma abordagem que contemple, por exemplo, a aprendizagem / aquisição de competências, as práticas dos suportes formais e informais, os suportes residenciais e as relações na comunidade (reconhecendo as possibilidades de vulnerabilidade e isolamento social). Por fim, apontam-se alguns dos desafios para promover a vida independente das pessoas com deficiência intelectual em Portugal.
Book
This new edition of Eva Feder Kittay's feminist classic, Love's La,bor, explores how theories of justice and morality must be reconfigured when intersecting with care and dependency, and the failure of policy towards women who engage in care work. The work is hailed as a major contribution to the development of an ethics of care. Where society is viewed as an association of equal and autonomous persons, the work of caring for dependents figures neither in political theory nor in social policy. While some women have made many gains, equality continues to elude many others, as in large measure, social institutions fail to take into account the dependency of childhood, illness, disability and frail old age and fail to adequately support those who care for dependents. Using a narrative of her experiences caring for her disabled daughter, Eva Feder Kittay discusses the relevance of her analysis of dependency to significant cognitive disability. She explores the significance of dependency work by analyzing John Rawls' influential liberal theory and two examples of public policy-welfare reform and family leave-to show how theory and policy fail women when they fail to understand the centrality of dependency to issues of justice. This second edition has updated material on care workers, her adult disabled daughter and key changes in welfare reform. Using a mix of personal reflection and political argument, this new edition of a classic text will continue to be an innovative and influential contribution to the debate on searching for greater equality and justice for women.
Chapter
In this chapter we trace the dramatic history of this concept and attempt to explain how it has acquired its statutory status. There are two distinct threads to this history: that of pressure groups seeking to improve the situation of those looking after disabled and older people, and that of researchers and policymakers who have been concerned to develop the policies and practices of service and support agencies. Both interest groups have focused primarily on the policies of central government and have frequently collaborated. Nevertheless, as will become apparent, their distinct interests have also generated tension in the course of the category of carer being constructed and promoted.
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This article suggests that the literature on care, which originally was heavily influenced by a gendered perspective, has now taken on other important variables. However, it is argued that if we look at the particular impact of the marketisation and privatisation of long-term care, we can see that gender is still a useful perspective on the production of care, especially paid care. The reordering of the delivery of domiciliary care within the ‘mixed economy of welfare’ is having important effects on the labour market for care and is likely to lead to further inequalities between women, both now and in old age. The article proceeds to look at the impact of these inequalities on the consumption of care in old age, particularly by elderly women and considers factors that may provide women with the resources to purchase care and/or pay charges for care. The article argues that gender does still matter, but that its impact has to be understood within a context of growing inequalities between women, and an analysis that takes account of wider social and economic relations within kin networks and between generations.