Choice and control in social care: Experiences of older self‐funders in England (original) (raw)

‘When it comes to carers, you've got to be grateful that you've got a carer coming’: older people's narratives of self-funding social care in England

Ageing and Society

The number of older self-funders in England is growing in the context of tight eligibility criteria and fixed financial thresholds to access statutory adult social care. Older people who self-fund their social care fall largely under the radar of statutory services and of research. Our study aimed to listen closely to the stories that older people tell about finding, managing and paying for their care. We interviewed 65 older people living in the community who were funding all or some of their social care. This paper focuses on narrative analysis of selected transcripts from these interviews. It sheds light on how older people represent their experiences of self-funding and what underpins these constructions. A key finding is that the disjunctions within older people's accounts between the care they want and the care they receive reflect wider political and structural tensions in the funding and delivery of care. Older self-funders temper their expectations in light of their exp...

‘Paying our own way’: Application of the capability approach to explore older people’s experiences of self-funding social care

Critical Social Policy

Adult social care policy in England is premised on the concept of personalisation that purports to place individuals in control of the services they receive through market-based mechanisms of support, such as direct payments and personal budgets. However, the demographic context of an ageing population and the economic and political context of austerity have endorsed further rationing of resources. Increasing numbers of people now pay for their own social care because either they do not meet tight eligibility criteria for access to services and/or their financial means place them above the threshold for local authority-funded care. The majority of self-funders are older people. Older people with complex and changing needs are particularly likely to experience difficulties in fulfilling the role of informed, proactive and skilled navigators of the care market. Based on individual interviews with older people funding their own care, this article uses a relational-political interpretat...

Financial planning for social care in later life: the ‘shadow’ of fourth age dependency

Ageing and Society, 2012

As policy makers in the United Kingdom and many other countries grapple with financing the needs of an ageing population, financial planning for social care in later life is high on political agendas. We draw on qualitative research with older couples in the United Kingdom about their intimate money practices to analyse the day-to-day meanings attributed to money, saving and consumption in the context of financial planning for later life and death. We find that expenditure on funerals and home adaptations is discussed, negotiated and planned, as is ‘downsizing’ to release capital from the home for financing day-to-day expenses and leisure expenses. These outcomes are within easy contemplation and indeed money practice of older couples. In contrast, end-of-life planning for domiciliary or residential care was virtually non-existent across all socio-economic groups, and couples employed a range of techniques to avoid making these discussions ‘real’. Costs (while well known) are seen as astronomical, details are scarce, intensive domiciliary care is never discussed, and death is seen as preferable to residential care. We theorise antipathy to care planning as a product of social and psychological construction of the ‘fourth age’ as a period of abjection, and therefore ‘wasted’ expenditure. Exhortations by policy makers for individuals to consider care costs will be ineffective without recognition of the cultural transformation of later life.

Older people's experiences of cash-for-care schemes: evidence from the English Individual Budget pilot projects

Ageing and Society, 2013

Cash-for-care schemes offering cash payments in place of conventional social services are becoming commonplace in developed welfare states; however, there is little evidence about the impact of such schemes on older people. This paper reports on the impact and outcomes for older people of the recent English Individual Budget (IB) pilot projects (-). It presents quantitative data on outcome measures from structured interviews with  older people who took part in a randomised controlled trial and findings from semi-structured interviews with  older people in receipt of IBs and with IB project leads in each of the  pilot sites. Older people spent their IBs predominantly on personal care, with little resources left for social or leisure activities; and had higher levels of psychological ill-health, lower levels of wellbeing, and worse self-perceived health than older people in receipt of conventional services. The qualitative interviews provide insights into these results. Potential advantages of IBs included increased choice and control, continuity of care worker, and the ability to reward some family carers. However, older people reported anxieties about the responsibility of organising their own support and managing their budget. For older people to benefit fully from cash-for-care schemes they need sufficient resources to purchase more than basic personal care; and access to help and advice in planning and managing their budget.

What Influences Older People’s Decisions about Care and Support?

2016

There are many factors that influence older people’s decision making about care and support they want or need in their daily lives. This paper investigates choices and decisions of people age 65 and older who receive paid and/or unpaid care on a daily basis with a focus in Scotland, drawing on a grounded theory framework. The literature review considered what is important to older people about care, support and resource utilisation and examined how decisions are made in relation to these applications. The review identified the ability and opportunity to make choices as a central theme. The key issues important to older people included control, independence and quality of life. Other factors that were found to influence how people make decisions included unmet needs, relationships and availability of informal care. The review found that older people wanted to stay in their homes for as long as possible. Findings suggest that additional research is required about what influences older...

Understanding the Social Care Crisis in England Through Older People’s Lived Experiences

International Political Theory

In the final chapter of Caring Democracy, Joan Tronto poses the question "how do we go from a society that is primarily concerned with economic production to one that also emphasises care?" (2013, 169). As illustrated in the contributions to this collection, participation in political processes and in decision-making about responsibilities for care are understood as

Opening up Options: Decision Making Around Older People's Assets

Australian Social Work, 2015

Historically, social work has been aligned with those in society who are vulnerable or are dangerous to others. The ideal, if not always the reality, for the profession is to ensure that their views are heard and acted upon. We often struggle to strike a balance between promoting people's autonomy and keeping them safe, or keeping others safe from them. In resolving such struggles we may well restrict, rather than open up options, particularly when those we are concerned with are not particularly valued by society. Our research (Tilse, Wilson, & Setterlund, 2003; Tilse, Setterlund, Wilson, & Rosenman, 2005) over a number of years has focused on older people and their financial assets, a project initially motivated by an awareness that, for many older people, the increasing deficits associated with ageing provided an avenue for others to be involved in their assets. A concern was that this involvement could provide an opportunity to exercise control over both the older people and their assets. We have concluded that a key concern for social work in relation to these issues is a focus on facilitating decision making that offers older people as much autonomy as they want or can express. There are three broad overlapping approaches to decision making with decreasing levels of control by the older person: self-determination, supported decision making, and substitute decision making. Hopefully, social work is focused on opening up options, and achieving the least restrictive option in all three approaches. We may want to achieve increased autonomy for older people but we might prioritise safety or managing risk over autonomy, thereby reducing options and increasing oversight. We are working in a rapidly changing service environment. Enhancing the exercise of individual choice and control in decisions about care is the cornerstone of contemporary disability policy and increasingly of aged care in the community. Packaging care so that individuals can make decisions about how their care dollars are spent drives this agenda. Services funded in this way are targeted to the needs of individuals who qualify for a "package" of care. However, the National Disability Insurance Scheme and aged care packages are not designed to meet all needs and nor will all people with care needs in these categories receive packages. It is in mainstream services that social workers will make their major contribution to both groups in ensuring they have appropriate choice and control over decisions that affect their welfare. Decisions around the use of assets for older people may centre on making resources last, or on the complexity of decisions, particularly in relation to negotiating entry into residential care, or on enacting moral or cultural duties such as deciding how much should or could be left as an inheritance or to assist younger generations. Such decisions often take place in a context where there are other people who wish to use the assets of this group. Our program of research has suggested there are three patterns of providing

The impact of personal budgets on unpaid carers of older people

Journal of Social Work, 2016

Summary This paper focuses on the impact of a personal budget – either in the form of a direct payment or managed personal budget – on the role of unpaid carers of older budget holders. Data were collected via postal survey of 1500 unpaid carers and semi-structured interviews with 31 carers. Findings Unpaid carers played a central role in supporting older budget holders irrespective of the type of budget received. The allocation of a personal budget may have decreased the amount of ‘hands-on’ care they provided, enabling them to do different things for and with the person cared for, but most did not relinquish direct involvement in care provision. Both kinds of personal budget provided greater flexibility to juggle caring tasks with other roles, such as childcare or paid employment. However, carers supporting direct payment users did experience higher levels of stress. This seemed linked to the additional responsibilities involved in administering the direct payment. Carers seemed r...

Ageing and Society Older people's experiences of

Cash-for-care schemes offering cash payments in place of conventional social services are becoming commonplace in developed welfare states; however, there is little evidence about the impact of such schemes on older people. This paper reports on the impact and outcomes for older people of the recent English Individual Budget (IB) pilot projects (-). It presents quantitative data on outcome measures from structured interviews with  older people who took part in a randomised controlled trial and findings from semi-structured interviews with  older people in receipt of IBs and with IB project leads in each of the  pilot sites. Older people spent their IBs predominantly on personal care, with little resources left for social or leisure activities; and had higher levels of psychological ill-health, lower levels of wellbeing, and worse self-perceived health than older people in receipt of conventional services. The qualitative interviews provide insights into these results. Potential advantages of IBs included increased choice and control, continuity of care worker, and the ability to reward some family carers. However, older people reported anxieties about the responsibility of organising their own support and managing their budget. For older people to benefit fully from cash-for-care schemes they need sufficient resources to purchase more than basic personal care; and access to help and advice in planning and managing their budget.

Will You Still Need Me, Will You Still Feed Me?—Paying for Care in Old Age

Social Policy & Administration, 1997

A major issue for social policy in the twenty-first century will be providing good-quality support and care for older people. However, recent debate about this has been driven more by ideology than by evidence. This paper examines the socio-economic, demographic and policy changes that are influencing the debate, and outlines findings from current research on attitudes towards financial planning for care in old age. This shows that the majority of people feel that the state should provide or pay for care for older people, either through a means-tested system or one which provides some basic level of protection which people can choose to enhance through their own means. However, only a minority would be willing to pay themselves for this, either directly through increased taxation or indirectly through reduced prospects of inheritance of housing capital. The paper concludes with a discussion of the policy implications of these findings.