What is a person‐centred approach? Familiarity and understanding of individualised funding amongst carers in New South Wales

Person‐centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person‐centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person‐centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person‐centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person‐centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.     

Navigations between regulations and gut instinct: the unveiling of collective memory in decision‐making processes where teenagers are placed in residential care

The decision to take a young person away from his or her family into out‐of‐home care and treatment is the most drastic intervention within the statutory powers bestowed upon social services. The results of reports on the quality of residential treatment reveal that state supervision has not proven to be a good substitute for parental care. In this paper we analyse the decision‐making process when young persons are placed in residential care. Focus groups and individual interviews with different stakeholders were conducted. The results show that the placements are a collective process involving negotiations between the different parties with a coordinating social worker in the middle, with the aim to bring something to build hope on in often desperate situations, regardless of the specific treatment method used. To inform the process, the social workers draw on a ‘collective memory’ shared among colleagues in the department. Important signs of quality of a residential unit were the relational and collaborative competence from the staff. The inclination to use soft, diffuse information in decision‐making shows a striking lack of evidence upon which social workers can build well‐informed and knowledge‐based decisions.     

Parents' involvement in care order decisions: a cross‐country study of front‐line practice

This article examines parents' involvement in care order decision‐making in four countries at one particular point in the care order process, namely, when the child protection worker discusses with the parents his or her considerations regarding child removal. The countries represent different child welfare systems with Norway and Finland categorized as ‘family service systems’ and the USA as a ‘child protection system’, with England somewhere in between. The focus is on whether the forms and intensity of involvement are different in these four countries and whether the system orientation towards family services or child protection influences practice in the social welfare agencies with parents. Involvement is studied in terms of providing information to parents, collecting information from parents and ensuring inclusion in the decision‐making processes. A vignette method is employed in a survey with 768 responses from child protection workers in four countries. The findings do not show a consistent pattern of difference regarding parental involvement in care order preparations that align with the type of child welfare system in which staff work. The goal in each child welfare system is to include parents, but the precise ways in which it is carried out (or not) vary. Methodological suggestions are given for further studies.     

The disability self‐direction movement: Considering the benefits and challenges for an Australian response

The following article provides a snapshot of the current self‐direction movement within the disability sector across the industrialised world, with particular emphasis on the Australian context. As a global movement, self‐direction has been in progress for several decades through a variety of implemented responses. Despite implementation variation, all self‐direction models aim to facilitate individual control and decision making in care and support services. We describe self‐direction, its various models and programs, and explore its benefits and challenges. We conclude by making broad recommendations for decision makers involved in self‐direction. In particular, we offer a hierarchical decision tree that can be used to inform policy decisions at a systems – government policy – and organisational level.     

‘Replacement Care’ for Working Carers? A Longitudinal Study in England, 2013–15

In the context of rising need for long‐term care, reconciling unpaid care and carers’ employment is becoming an important social issue. In England, there is increasing policy emphasis on paid services for the person cared for, sometimes known as ‘replacement care’, to support working carers. Previous research has found an association between ‘replacement care’ and carers’ employment. However, more information is needed on potential causal connections between services and carers’ employment. This mixed methods study draws on new longitudinal data to examine service receipt and carers’ employment in England. Data were collected from carers who were employed in the public sector, using self‐completion questionnaires in 2013 and 2015, and qualitative interviews were conducted with a sub‐sample of respondents to the 2015 questionnaire. We find that, where the person cared for did not receive at least one ‘key service’ (home care, personal assistant, day care, meals, short‐term breaks), the carer was subsequently more likely to leave employment because of caring, suggesting that the absence of services contributed to the carer leaving work. In the interviews, carers identified specific ways in which services helped them to remain in employment. We conclude that, if a policy objective is to reduce the number of carers leaving employment because of caring, there needs to be greater access to publicly‐funded services for disabled and older people who are looked after by unpaid carers.     

Professional Perspectives on Decision Making about the Long-term Care of Older People

With the increasing pressure on social and health care resources,professionals have to be more explicit in their decision makingregarding the long-term care of older people. This groundedtheory study used 19 focus groups and nine semi-structured interviews(99 staff in total) to explore professional perspectives onthis decision making. Focus group participants and intervieweescomprised care managers, social workers, consultant geriatricians,general medical practitioners, community nurses, home care managers,occupational therapists and hospital discharge support staff.The emerging themes spanned context, clients, families and services.Decisions were often prompted by a crisis, hindering professionalsseeking to make a measured assessment. Fear of burglary andassault, and the willingness and availability of family to helpwere major factors in decisions about living at home. Serviceavailability in terms of public funding for community care,the availability of home care workers and workload pressureson primary care services influenced decision ‘thresholds’regarding admission to institutional care. Assessment toolsdesigned to assist decision making about the long-term careof older people need to take into account the critical aspectsof individual fears and motivation, family support and the availabilityof publicly funded services as well as functional and medicalneeds.     

Comfort with discussions about death,religiosity, and attitudes about end‐of‐life care

In end‐of‐life (EOL) care research, death anxiety and religiosity are often overlooked. Terror management theory (TMT) may provide a useful conceptual model with which to examine how comfort discussing death and religiosity influence attitudes related to EOL care. A telephone‐based survey was conducted among community‐dwelling adults in the Unites States. Via random sampling, with over‐sampling of Hispanics/African Americans, 123 completed survey interviews (response rate = 46%) were analyzed. Respondents were more likely to have better attitudes toward EOL care if they were older or white, religiously active, and comfortable with the subject of death. Religiosity and comfort discussing death were correlated with each other and remained significant predictors of attitudes about EOL care even without demographic covariates. Findings suggest that promoting an open dialogue about mortality may improve attitudes about EOL care and utilization of palliative care services. The study also provides evidence about the utility and applicability of TMT for EOL care.     

Participation of youth in decision‐making procedures during residential care: A narrative review

Participation in decision‐making procedures of young people in care is considered a key element that affects their current or future living circumstances and might improve the quality of decision‐making on and delivery of provided services. This narrative literature review, covering the period 2000–2016, focuses on the opportunities of young people to participate, the challenges and facilitators to participation, and the outcomes of care related to participation. Sixteen studies met our search criteria. Several studies show that young people seem to have limited possibilities to “meaningful” participation in decision‐making. Various challenges and facilitators in the participation process emerge with regard to the level of the young person, the professional, and the (sociocultural) context. None of the studies provides evidence for a connection between the “amount” of youth participation in decision‐making and/or treatment during the care process and the outcomes of residential care. Implications for research and practice are reflected upon.     

The emerging role of Financial Counsellors in supporting Older Persons in financial hardship and with management of Consumer‐directed Care packages within Australia

The role of financial counsellors as providers of information, support and advocacy for those in financial difficulty is a well established mechanism in the mainstream welfare landscape in Australia. In general, the role of financial counsellors is in helping people alleviate or resolve their financial difficulties through improvement of their financial literacy. It is recognised as an important component of policy responses to assist low‐income households and individuals in financial stress. The use of financial counsellors for older persons (i.e., those aged 65+ years), however, appears to be underutilised. Financial hardship and abuse of older persons within our community are becoming key issues as the population of Australia “ages”. Existing evidence also suggests that service providers alone do not have adequate skills to address these issues. This paper firstly examines the development of financial counselling in Australia. It then examines the newly emerging role of financial counselling in supporting older persons in addressing barriers to financial literacy and then in navigating the complex landscape of aged care service provision. The current financialisation, marketisation and complexities of consumer‐directed care are identified as key contextual factors. The paper will then discuss an evaluation study of the provision of financial counselling to the older person population designed to support financial hardship and navigation of the complex aged care services system. The findings of the paper are based on an evaluation of the Financial Consumer Rights Council (FCRC), Victoria: Dignity and Debt Financial Difficulty and Getting Older initiative. This pilot initiative included older persons from both community‐based and aged care residential facilities in one regional area of Victoria. The initiative, conducted over 2016, was designed to assess the effectiveness of one‐on‐one financial counselling sessions with older persons that provided consumer advocacy and information about support services and entitlements (including hardship protections) associated with ageing. The evaluation found that the provision of financial counselling to the older person population could be a key mechanism in improving overall financial literacy, avoiding periods of financial hardship and in maintaining financial well‐being, quality of life and positive ageing. Findings also demonstrated a need for an expanded outreach financial counselling model to better service older persons in more isolated living environments and/or with mobility impairments living in the community, and the potential to situate offices of financial counsellors within medical centres (a space often visited by the ageing population), to co‐situate financial health check‐ups as an overall element of health and well‐being. As such, financial counselling was viewed as well placed to support older persons in improvement of financial literacy and in supporting navigation of the increasingly complex marketised and consumer‐directed care (CDC) landscape of aged care service provision in Australia.     

Cash‐for‐care payments in Europe: Changes in resource allocation

Resource allocation has been a main policy issue in cash‐for‐care schemes (CfCs) for older people in Europe since their inception. It regards how publicly funded care benefits and services are distributed among older people. The raising pressures of an ageing population and the tensions on the financial sustainability of welfare regimes in place have further exacerbated the relevance of this topic over the recent years. Nevertheless, comparative research so far has overlooked changes in resource allocation in CfCs over time. This article contributes to fill this gap, exploring changes in resource allocation of CfCs for older people in a sample of European countries—Austria, England, France, Germany, Italy, and The Netherlands—since the early '90s (or since the introduction of the scheme). It examines three analytical dimensions: (a) The mix of public services and benefits provided to older people (CfCs, community services in kind, residential care); (b) the level of CfCs coverage; and (c) its generosity. A combined view of these dimensions leads to the discussion of two dilemmas: How to allocate the resources devoted to CfCs in the light of the trade‐off between its coverage and intensity? And, within the whole long‐term care system, how to allocate resources between CfCs and services in kind?     

Micro‐provision of Social Care Support for Marginalized Communities – Filling the Gap or Building Bridges to the Mainstream?

As English social care services reconstruct themselves in response to the personalization agenda, there is increased interest in the contribution of micro‐providers – very small community‐based organizations, which can work directly with individuals. These micro‐providers are assumed to be able to cater for the ‘seldom heard’ groups which have been marginalized within mainstream social care services. This article reviews recent literature from the UK published in peer‐reviewed journals from 2000 to 2013 on support provision for people with protected characteristics under the Equality Act 2010. It considers the marginalising dynamics in mainstream, statutory social care support provision, and how far local community, specialist or small‐scale services are responding to unmet need for support and advice among marginalized groups. The review found that there is a tradition of compensatory self‐organization, use of informal networks and a mobilization of social capital for all these groups in response to marginalization from mainstream, statutory services. This requires recognition and nurturing in ways that do not stifle its unique nature. Specialist and community‐based micro‐providers can contribute to a wider range of choices for people who feel larger, mainstream services are not suitable or accessible. However, the types of compensatory activity identified in the research need recognition and investment, and its existence does not imply that the mainstream should not address marginalization.     

Garbage‐can Policy‐making Meets Neo‐liberal Ideology: Twenty Five Years of Redundant Reform of the English National Health Service

The garbage‐can theory of decision‐making (Cohen et al. 1972), has been adapted into a perspective on policy‐making, with adaptations of the approach placing notable emphasis upon the health sector (Kingdon 2006; Paton 2006). This article creates an adapted ‘garbage‐can’ framework to help explain each stage of the reform of the English National Health Service (NHS) over the last 25 years. The emergence of the key idea and resultant policy at each stage of reform of the English NHS has been arational and indeed sometimes irrational. Policy has reflected advocacy by policy‐salesmen (Kingdon 2002), proffering ‘solutions’ to ill‐defined problems and answers to unasked questions, and politicians' short‐termist responses at each decision‐point. Yet the garbage‐can alone is not enough: if arationality rules in policy‐making day to day, this does not mean that there is not an overall ideological context, trend or bias in reform. The article also posits that ‘market reform’ has derived from the ideological hegemony of a naive anti‐statism (hostility to a misleadingly defined and often mythological ‘centralist state’) in public services and enthusiasm for market competition rather than any evidence‐based application of pro‐market ideas to health policy. A question arises: how are these two approaches (short‐term arationality and longer‐term ideological bias) combined in explanation of how policy over time is biased in a particular direction while seemingly arbitrary and directionless at each messy decision‐point. The article attempts to combine the insights of a garbage‐can approach with wider explanations of ideological hegemony.     

A Brave New World of Personalized Care? Historical Perspectives on Social Care and Older People in England

Social care policy for older people in England continues to generate extensive discussion around the need to break with the past and to deliver a personalized response to need. This article explores the extent to which this represents a complete break with the past by looking at four key reports from the past, namely the Rucker Report (1946 ) on the break up of the Poor Law, the Seebohm Report (1968 ) on the personal social services, the Griffiths Report (1988 ) on community care and The Royal Commission on Long Term Care ( Sutherland Report, 1999 ). Each is interrogated in terms of how social care is defined, how services are to be delivered, how quality is understood and the assumptions made about who will be able to access services. This analysis is used to draw out key continuities in policy assumptions such as the primacy of family and the ongoing debate about ‘What is social care?’ and how it can be distinguished from health care. The article also argues that the voluntary sector has always been seen as a ‘key player’ in social care. Finally, the analysis of the four reports is used to trace the ever changing role of local authorities in the planning, purchase and provision of social care services for older people.     

Putting the child at the centre of inter‐professional cooperation in out‐of‐home care

A large part of most children's childhood is about taking part in educational and leisure‐time activities together with other children across various contexts. However, children in out‐of‐home care do not always have easy access to these possibilities for participation. In general, parents coordinate their children's everyday lives, but in the case of children in out‐of‐home care, the responsibility of care is distributed between several professionals and institutions. Research often recommends that inter‐professional cooperation should put the child at the centre and be more child focused. But what does that mean? The paper investigates theoretical understandings of ‘child centredness’ in inter‐professional cooperation. It also includes an empirical example taken from a research project that followed four children in their everyday lives in two residential homes in Denmark. The research explored how professionals work together across contexts in order to support children to take part in school and leisure‐time activities. The overall reasoning leads to the point that for children in out‐of‐home care, the possibility of exercising personal agency in their everyday life constitutes a difficult but vital issue. How children in out‐of‐home care learn how to conduct their everyday lives, is closely related to the ways professionals cooperate across contexts. It points to the need for close inter‐professional cooperation in order to encourage and support children's initiatives and engagements in activities in communities with other children.     

When parents love and don't love their children: some children's stories

This paper discusses a small pilot study with Anglo‐Australian children aged 6 to 8 years. The children expressed through stories of what it meant for them when parents love and care for their children, and when they do not. Themes from stories of parental love and care included: relationships, shared special times, being safe and protected, and physical affection. Stories about parents who did not love or care for their children covered themes of abandonment, isolation and sadness. The study contributes an approach that can improve professional practice with children and early outcomes showing the importance of seeking children's perspectives in decision‐making about their welfare.     

The restructuring of WA human services and its implications for the not‐for‐profit sector

Western Australia provides an interesting case study of the outsourcing of human services to the not‐for‐profit (NfP) sector. This article presents and discusses some of the key themes that emerged from a recently completed research project examining one large NfP in Western Australia. Key themes included the recruitment and retention of staff linked to pay and changing funding arrangements, and the sector becoming increasingly corporatised in outlook and goal orientaiton. Despite evidence that the shifting policy and funding environment within the NfP sector has had some negative consequences, the research findings highlight a degree of agency within which organisations can resist or counterbalance these changes. Efforts to avoid this trend, however, are reliant upon a number of factors; for example, a strong commitment to vision and mission supported by skilled leadership and adequate resourcing. Significantly, these factors are unlikely to be readily available, particularly for smaller NfPs. This discrepancy in organisational capacity is set to become more conspicuous with the potential introduction of ‘Big Society’ policies derived from the United Kingdom, and funding cuts proposed by the Coalition government.     

From Official Supervision to Self‐monitoring: Privatizing Supervision of Private Social Care Services in Finland

In October 2011, a new Act on Private Social Care Services came into force in Finland. The Act included a provision on a ‘self‐monitoring plan’. According to the provision, providers of private social care services are required to draw up a self‐monitoring plan and to follow its realization. The plan must be kept publicly on view so that clients and their relatives can also keep an eye on the realization of self‐monitoring. In this article, self‐monitoring is first explained and then briefly analyzed against the background of a wider theoretical discussion on accountability. It is argued that the introduction of client involvement in the supervision of private social care services represents a new mechanism of accountability that is typical of the Post‐Keynesian welfare state. Because public authorities are no longer able to supervise the growing number of private social care service providers, the responsibility has been partly shifted to service providers themselves as well as to clients. However, it is argued that the idea of self‐monitoring lends itself poorly to ‘delegated’ private social care services, i.e. to services that are outsourced to private service suppliers. Supervision of private social care service providers should not be too eagerly delegated to service providers themselves, or to clients, because we are here dealing with the constitutional right to adequate social care services. Client involvement also involves numerous practical problems, as shown at the end of the article.     

‘Street‐level Bureaucracy’ Revisited: The Changing Face of Frontline Discretion in Adult Social Care in England

This reassessment of the continuing significance of Lipsky's (1980 ) work on ‘street‐level bureaucracy’ for frontline decision making is based on a retrospective review of the author's research on assessment practice in adult social care in England. The studies span the past two decades during which time successive governments have restructured and modernized social services departments. When these were established in 1970, they represented the high watermark of bureau‐professionalism – a mode of administration which dominated social welfare at the time Lipsky was writing. The subsequent dismantling of bureau‐professionalism calls into question the validity of his findings, and the author draws on her own research to assess conflicting views about the impact of social care reforms on the discretion which social workers exercise as street‐level bureaucrats. She concludes that the distinct types of discretion to emerge from her findings, represented in a taxonomy, are shaped by the differing micro environments of frontline practice which, in turn, affect the relative force of managerialism, professionalism and user empowerment in countering the defensive exercise of discretion described by Lipsky. Whilst her analysis affirms the continuing significance of Lipsky's analysis, it also points to the need for some revision to accommodate major shifts in welfare administration since the publication of his work. She highlights the potential relevance of these insights for investigating the next planned transformation of adult social care, personalization, as well as for the implementation literature more widely.     

Choice,Competition and Care – Developments in English Social Care and the Impacts on Providers and Older Users of Home Care Services

This article critically examines recent changes in markets for home (domiciliary) care services in England. During the 1990s, the introduction of competition between private (for‐profit and charitable) organizations and local authority providers of long‐term care services aimed to create a ‘mixed economy’ of supply. More recently, care markets have undergone further reforms through the introduction of direct payments and personal budgets. Underpinned by discourses of user choice, these mechanisms aim to offer older people increased control over the public resources for their care, thereby introducing further competitive pressures within local care markets. The article presents early evidence of these changes on:

• The commissioning and contracting of home care services by local authorities and individual older people.
• The experiences and outcomes for individual older people using home care services.

Drawing on evidence from two recent empirical studies, the article describes how the new emphasis on choice and competition is being operationalized within six local care markets. There are suggestions of small increases in user agency and in opportunities for older people to receive more personalized home care, in which the quality of care‐giving relationships can also be optimized. However, the article also presents early evidence of increases in risk and costs associated with the expansion of competition and choice, both for organizations providing home care services and for individual older service users.