Self-funders (or elf-funders) are people who have to pay for their social care using their own finances, as opposed to receiving partial or full funding from their local council’s adult social care department. In England a threshold exists of £23,250, those who have above this amount in savings and sometimes other assets are deemed to be self-funders. On the surface, one might assume that this group of people are ‘well-off’ and therefore able to purchase whatever support they wish, without the constraints of local authority budgets limiting their options. However, the reality is somewhat different. There are no exact data on the amount of self-funders in the country, but some estimates suggest there are around 380,000 in the UK, (Henwood et al., 2019). This equates to an estimated range of between 20-25% of those paying for home care, and around 40% of those paying for residential or nursing homes (Henwood, 2014; Humphries, 2013; Carr-West and Thraves, 2011; Henwood et al., 2019; Baxter and Glendinning, 2015).

In this blog I discuss the findings from a paper by Kate Baxter, Emily Heavey and Yvonne Birks titled Choice and control in social care: Experiences of older self-funders in England. The paper explores the extent to which self-funders exercise choice and control when organising and purchasing their own care, and explores how they seek information to help them in this process. The authors locate this issue against the backdrop of personal budgets (PBs) and direct payments (DPs) for people who are council-funded. They explore the divergent experiences of self-funders by unpicking whether they are granted the same access to information, advice and services as those who are in receipt of PBs and DPs through the council. The paper also discusses how self-funders are seen as active consumers in the care market with the ability to make informed choices and hand-select the best care services for their needs. This myth is again unpicked to demonstrate that in reality, self-funders have the same social care issues and vulnerabilities as council-funded people, and are not always in a position to find relevant information, make sense of it, and put it to good use.

Methods

The authors use qualitative methods to explore these issues, through conducting interviews with people who pay for their social care and their family members, as well as interviews with social care managerial professionals (the professional interviews are discussed in a separate paper). Self-funding participants and their relatives were all based in England, with a total of 43 participants. Eligibility was based on whether people had looked for information or advice about paying for care in the last 18 months, either for themselves or their relative. Recruitment was carried out with the assistance of local councils, voluntary organisations, care homes and home care agencies in order to identify potential participants over the period of time from July 2015 to February 2016. The authors also give detail on the types of questions asked in the interviews, on the topic of seeking information on paying for care. Thirty-one participants were female, and 12 were male. Of the relatives, they were mainly adult children of self-funders aged over 50 or spouses of the self-funders aged over 65. Data from the interviews were analysed thematically using a framework approach (Ritchie et al., 2013).

Results

Study findings highlight the sense of unfairness that self-funders feel about having to use their own finances to pay for care, particularly if they feel they have worked and saved hard over the years, while others are entitled to more support from the council. Those with savings close to the bottom end of the threshold do not feel that they have masses of fortunes, as they quickly get diminished by the cost of care. This in turn links to another area of the findings about family disputes and the sensitive issue of family inheritance. Many older people wish for their savings and property to be inherited by their sons/ daughters/ next generation of their family. The fact that self-funding care heavily eats into these assets presents challenging scenarios for both the older person and their family. The results also highlight the worry that self-funders face in considering the long-term impact of paying for care, how sustainable their arrangements are, how much longer their money will last, and what will happen to them when it runs out. Having social capital is key in the findings here, as having a network of people to draw upon to help navigate the care system can make a real difference to the older persons’ care journey.

Other key findings comment on how councils were not viewed as helpful when they were approached for advice or information. This included issues such as social worker’s not being able to make recommendations on care services, and a lack of clear information specifically relevant for self-funders. Even those who used the internet to seek information, including family members, reported masses of generic information, with real difficulty in finding information that was applicable to their situation.

The paper also underlines some potential positives for self-funders, including the feeling that they have more control over when decisions happen around their care, compared to those who are council-funded and may be subject to waiting lists. Furthermore, it appears that self-funders pay for packages of care that help them with a broader range of tasks and support, perhaps encompassing a more holistic approach to care calls than those commissioned by the local council.

Conclusions

The paper concludes that choice and ways to operationalise choice, such as direct payments for example, are important for users of social care, but this does not always translate into practice. Whilst choice and control are ideals for self-funders, if they don’t have access or the right support to find and implement useful information and advice, they are unable to make informed decision and thus exercise real choice. The financial status of self-funders alone, does not automatically improve their ability to navigate the complex system of adult social care. It is also evident that self-funders can be reluctant to spend their money on care, through concerns that this will drain the future inheritance of their loved ones.

Strengths and limitations

This paper is easy to read and presents the findings in an accessible way, whilst also situating the issues amongst wider considerations of choice and control in social care and how social capital can affect this. The methods are described clearly and the thematic findings are presented in a logical and easy-to-follow way. The findings are relevant for both those working in practice and the individuals and families that use social care services. It brings to light the issues that self-funders face, as they are a particularly hidden population with more research attention required. The paper is an important springboard for future research as it is evident that more knowledge is needed about how to improve the experiences of this group of people.

A couple of issues worth mentioning, that are not discussed in the paper, are the matters of self-funding pick-ups, and local authority admin fees for self-funders. A self-funding pick-up refers to the point of which a local authority will pick-up the funding for an individual’s care package. This can depend on whether the person has initiated contact with their local council to inform them of their new financial status. Some people will inform their local authority just prior to dipping below the £23, 250 threshold, but others may not even know to do this, or can approach the council once their funds have already fallen well below the threshold. This in itself can bring on a whole range of issues as councils may not always agree to continue funding the package or care home placement that an individual has chosen.

Secondly, something that perhaps could have been mentioned in the paper is the fact that there is a real postcode lottery for self-funders across the country in terms of how their local authority charges self-funders if they want the council to organise services on their behalf. Some councils may organise services for self-funders without charging them any administrative fees, whereas others charge either one-off or recurring fees to organise the care, resulting in more costs on top of the actual cost of the care itself.

Implications for practice

As someone who has worked as a local authority social worker, I have experienced this from ‘the inside’ and regretfully acknowledge that many of the issues raised in this piece of research ring true to practice. Social workers’ caseloads are notoriously over-stretched, and when time and resources are pushed to their limits, priority lies with those who are under local authority funding, at the expense of self-funders. For self-funders wanting to gather information in a preventative way, perhaps to make plans for future care needs, the system is rarely set up to accommodate this. Social workers are practicing in a crisis-driven reactive way; unfortunately for those wanting early input in order to plan for their future, their situation is sadly not seen as a priority.

Having worked in hospital discharge, some local authorities practice a mentality that no permanent decisions should be made from hospital, and any discharge arrangements should be temporary, subject to review once the person is hopefully more comfortable and not under the pressure of a delayed discharge. I wonder if many self-funders get this same luxury, or whether they are pressured into finding care services at short notice, with limited support and information. From my own professional experience, and the findings in this paper, it would appear that self-funders have yet again got the short end of the stick.

Conflicts of interest

I declare that I know two of the three authors of this paper via the University of York, as Kate Baxter and Yvonne Birks are my PhD supervisors. I am also working on a similar area of interest looking at self-funders. This paper pre-dates my PhD start date so I was not involved in this study.

Links

Primary paper

Baxter, K., Heavey, E. and Birks, Y. (2019). Choice and control in social care: Experiences of older self-funders in England. Social Policy and Administration. [Online]. Available at: https://onlinelibrary.wiley.com/doi/full/10.1111/spol.12534.

Other references

Baxter, K. and Glendinning, C. (2015). People who fund their own social care: scoping review. Scoping review, p.50. [Online]. Available at: http://www.sscr.nihr.ac.uk/PDF/ScopingReviews/SR11.pdf.

Carr-West, J. and Thraves, L. (2011). Independent ageing 2013. Council support for care self-funders. [Online]. Available at: https://lgiu.org/wp-content/uploads/2012/04/Independent-Ageing.pdf.

Dalley, G. and Mandelstam, M. (2008). Assessment Denied? Council responsibilities towards self-funders moving into care. Mandelstam  1956-, M. et al. (Eds). London: Relatives & Residents Association.

Henwood, M. (2014). Self-funders: the road from perdition? In: Catherine Needham and Jon Glasby (Eds). Debates in Personalisation. Bristol: Policy Press. pp.75–83. [Online]. Available at: https://www.dawsonera.com/readonline/9781447313434.

Henwood, M. et al. (2019). From bystanders to core participants? A literature and data review of self-funders in social care markets. p.59. [Online]. Available at: https://www.birmingham.ac.uk/Documents/college-social-sciences/social-policy/HSMC/publications/2018/UoB-PRP-Self-funders-review-of-data-and-literature-FINAL.pdf.

Humphries, R. (2013). Paying for social care. Beyond Dilnot. King’s Fund. [Online]. Available at: https://www.kingsfund.org.uk/sites/default/files/field/field_publication_summary/social-care-funding-paper-may13.pdf.

Ritchie, J. et al. (2013). Qualitative research practice: A guide for social science students and researchers. 2nd ed. London: SAGE Publications Ltd.

Wright, F. (2003). Discrimination against self-funding residents in long-term residential care in England. 2003/09/02. Ageing and Society, 23 (5), pp.603–624. [Online]. Available at: doi:10.1017/S0144686X03001338.