Introduction

On the day we sit to organise this article, UK news outlets are reporting a story about a disabled man who has saved up his direct payment funds to go to Florida to ‘have a bit of respite from the mundane reality of everyday life’ (Rose, 2024). He had forgone trips to the cinema to save up, not for his own costs but for those of the two personal assistants (hereafter, PAs) he would need to take with him. (Witness the ‘online pile-on’ from many non-disabled people saying they would like the state to pay for them to go to Disneyland.) His local authority demanded the money back, saying they were not ‘approved or eligible costs’. This example speaks to a central theme in this article: not only does the concept of ‘approved costs’ undermine the principle of choice and control within personal assistance, but it also conjures up the antonym of disapproval for money spent towards certain activities. Direct payments are funds allocated to disabled people to organise their own support in ways that sustain independence and promote choice and control, as compared with other models of support in which the disabled person is more a recipient of care/support organised by an external organisation.

There has been a strong policy imperative in the UK to deliver social care that maximises the choice and control of disabled people who are deemed eligible for social care services. The Community Care (Direct Payments) Act 1996 and the Care Act 2014 are clear about the kinds of personalised and high-quality support they want to realise for disabled people. The Care Act 2014, for example, focuses on well-being, defined as a broad concept that includes domestic, family and personal domains. The English government says it continues to be committed to improved and personalised services for users of social care services (PMSU, 2005; DH, 2006, 2010). Local authorities are expected to implement change in order to shift social care for disabled and older people towards: a less bureaucratic and more ‘personalised’ form of service ‘which is on the side of the people needing services and their carers’ (DH, 2007); a system that should ‘empower citizens to shape their own lives and the services they receive’ (PMSU, 2007); and a more preventative and less crisis-driven mode (DH, 2008).

The drive for disabled people to have more control over their day-to-day support was in part shaped by opposition to established models of support organised by local authorities, the independent sector or for-profit organisations from which ‘care packages’ were purchased. Disabled people would routinely have no say about who came to their homes to ‘do’ support and little input into whether that person was older, younger or of a similar outlook, ethnicity, gender or sexuality. Activists and academics wrote, and continue to write, about the radical changes, located within the Independent Living Movement, needed to transform how support was imagined and delivered (Morris, 1997; Watson et al, 2004; Glasby, 2005; Williams and Porter, 2017; Shakespeare et al, 2018).

The policy agenda of personalisation has always been subject to critiques of the individualisation and marketisation of social care, despite the fact that a universal, national and free social care system has never existed in the UK. Pearson et al (2020: 288, citing Leadbetter, 2004) highlight that the more radical ‘deep personalisation’ was imagined by the disabled people’s movement as involving ‘bottom-up’, co-produced and re-envisaged ways of delivering support that were empowering and liberating rather than a ‘model of consumerism’: ‘There is undoubtedly an ideological tension at the heart of personalisation, with the consumerist ideals of freedom conflicting with the collective impulses of social justice.’ There is a growing sense and some evidence that the less radical aspects of personalisation now shape how the policy works in practice. The number of people using direct payments in the UK continues to fall and is now lower than in 2015/16, having fallen for each of the past five years. Overall, just 26.7 per cent of people drawing on adult social care use direct payments, down from 28.1 per cent in 2015/16 (Kings Fund, 2023). Possible reasons for the fall in number include the absence/decline of support to manage a direct payment, an overall decrease in local services to ‘purchase’, rates of pay being relatively uncompetitive compared with other jobs (TLAP and LGA, 2022), a high vacancy and turnover rate for PAs (Skills for Care, 2023), and the impact of Brexit on the workforce (Paton, 2022). A 2022 survey of nearly 1,000 PA employers (TLAP and LGA, 2022) found that 77 per cent of people who had needed to recruit a PA had found it more difficult, 69 per cent said people were taking jobs with better pay rather than PA jobs and 59 per cent thought that it was harder to find PAs with the right skills, values or training.

Over the same period, spending on advocacy services for disabled people and other users of social care services sharply declined. Furthermore, in a climate of austerity, some advocacy services and disabled people’s organisations who are still funded by local authorities have had – or feel that they have had – their ability to speak out hampered by a threat of cuts for doing so (Pearson et al, 2020: 292), leading to accusations of a loss of authentic and independent advocacy roles. The poverty of personalisation and the regression from the more radical ambitions for it were laid bare in a sobering report from the UK Parliament’s Adult Social Care Committee (2022), which highlighted the sense that disabled people using self-directed social care support were entitled only to a minimal level of care and support to ‘live a basic existence’ rather than a ‘meaningful life beyond personal care’.

The overarching sense of crisis and failure to deliver on the promise of personalisation resulted in a 2023 ‘summit meeting’ organised by the organisation Think Local Act Personal (TLAP, 2023), which asked: ‘What would it look like if self-directed support and Direct Payments were working amazingly well? Can Local Authorities be trusted to deliver on the promise of personalisation?’

Information about our research studies

We present data from two separate research studies, both of which were funded by the National Institute for Health & Care Research, School for Social Care Research. Study 1 was a collaborative project carried out by Abbott with: REGARD, a national disabled people’s organisation of LGBTQI+ disabled people; Stonewall, a national campaigning organisation for LGBTQI+ equality; and the Social Care Institute for Excellence (SCIE), a national organisation with a remit to improve the lives of people who use care services by sharing knowledge about what works. The study took place between 2016 and 2018 and produced a range of practical outputs, including short films that are free to access online (SCIE, 2018), but that are presented here in an academic journal for the first time. The study received ethical approval from the National Social Care Research Ethics Committee. We adopted the acronym LGBTQI+ and defined it as referring to people who are lesbian, gay, bisexual, trans, queer, questioning and intersex or who hold such identities as non-binary.

We conducted a survey of people who self-identified as being LGBTQI+, disabled and in receipt of a direct payment or personal budget. We then conducted follow-up, qualitative interviews with a subset of the survey respondents. Finally, we held a focus group with support workers who were employed by LGBTQI+ disabled people. This article focuses on our first set of data: the survey responses and the unexpectedly large amount of data collected from the free-text response options. We not only made the survey available online but also (aware of the digital exclusion faced by many disabled people) sent a postal survey with a stamped address envelope to anyone who requested it. We also offered to collect responses via a telephone interview. We promoted the survey via all of our contact lists, membership lists and social media contacts. When we realised that our survey respondents were predominantly young and overwhelmingly white, we resent information to community groups, with a particular focus on older disabled people and Black and minority ethnic disabled people. This slightly improved the uptake from older people but did little to increase the responses from Black and minority ethnic disabled people – a particular limitation of the study.

There were 56 survey respondents: 53 per cent of respondents identified as female and 30 per cent as male; 15 per cent of respondents identified as non-binary; 2 per cent of respondents preferred to not specify their gender; 34 per cent of respondents identified as a lesbian/gay woman; 26 per cent identified as a gay man; 32 per cent identified as bisexual; 9 per cent of respondents preferred to not specify their sexual identity; and 20 per cent replied that they identified as trans. It is not possible to establish how many LGBTQI+ disabled people might be in receipt of direct payments or personal budgets, so we cannot say what percentage of the whole possible population we have reached. The headlines from the closed survey questions were that: more than half of those surveyed said that they never or only sometimes disclosed their sexual orientation or gender identity to the PAs who they paid to support them; more than a third of those surveyed said that they had experienced discrimination or received poor treatment from their PAs because of their sexual orientation or gender identity; and more than 90 per cent of those surveyed said that their needs as a LGBTQI+ disabled person were either not considered at all or were only given some consideration when their needs were assessed or reviewed.

Study 2 was also a collaborative project led by Edmund Coleman-Fountain, with Harvey Humphrey, Disability North (a disabled people’s organisation) and, in its later stages, Pathfinders Neuromuscular Alliance, a user-led organisation of people affected by neuromuscular conditions. It took place between 2020 and 2023 and received ethical approval from the National Social Care Research Ethics Committee. The focus of this research was: to explore young disabled adults’ views about managing issues of sexual and gender identity with their PAs; to think about how or if these issues arose in day-to-day support arrangements; and to explore ways to make PAs and social care services and support more inclusive of young disabled adults with the full range of different genders and sexualities. The project was inclusive of young disabled adults who were lesbian, gay, bisexual and/or transgender, as well as heterosexual young disabled adults. The study involved: interviews with 12 young disabled adults’ experiences around seeking support from their PA; interviews/focus groups with 11 PAs about their experiences and their advice and needs around support; and the production of training and information resources for young disabled adults, adult social care services, PA support organisations and individual PAs. For this article, we draw on the interviews with young disabled people. An advisory group of young disabled adults was involved in the decision making about all aspects of the project (Humphrey and Coleman-Fountain, 2024). The 12 participants included cis women, trans men, non-binary people and a trans woman. All but two identified as white.

In both studies, we did not define ‘disability’ and produced easy-read versions of all of our materials, being conscious that people with learning disabilities can be excluded from research that takes place under the broader heading of ‘disability’. We pull these two studies together here because they speak so centrally to the call of this special edition and, combined, offer powerful insights into the interactions between sexuality and gender in social care personalisation that are missing from the academic literature. Both studies adopted broadly similar thematic approaches to data analysis. Both studies worked in partnership with their academic and non-academic partners at the data-analysis stage to support shared sensemaking of the data and to give time and space to discuss such issues as how to ‘frame’ messages, how to ensure they remained ethical and mindful of the sensitivity of people’s accounts, and how to avoid any danger of identifying participants. In order to write the article, we looked specifically at the data across both studies that had been coded as speaking to the intersection of control and sexual and/or gender identity, as well as mismatches between the rhetoric of personalisation and the reality. We stress – and describe – the preference for this approach to accessing social care support, with its roots in liberating models of choice and control for disabled people. A practical challenge in writing this article was that each study had very different descriptors to give information about who is speaking in quotations, and we have not been able to make this consistent. While the quotations used are illustrative rather than representative, we have attempted to include quotes and examples from the full range of participants across gender and sexual identities as described by people taking part, namely gay, lesbian, bisexual, queer, cis, trans, pansexual, male, female, non-binary and other. The decision to centre the voices of the LGBTIQ+ participants within the studies in this article reflects our wish to give voice to those seeking ways to live their fullest lives and identities within the context of personal support despite facing constrained choices. Cisgender heterosexual disabled people making choices about personal support do also of course make choices based on gender and sexuality, but their choices are less constrained and less subject to disapproval.

What people told us

In the sections that follow, we draw attention to some key, overarching themes by highlighting text in bold and returning to explore these in the discussion.

Discussion

A central aim of writing this article is to locate the stories and experiences of marginalised disabled people using self-directed social care support within the academic social work and social care literature, and both of the studies included here are, to our knowledge, the first of their kind. Both studies worked in highly collaborative ways so that making sense of the data was a shared endeavour between academic researchers, representatives from disabled people’s organisations and people with lived experience of the issues being explored. We recognise that the white bias in both projects is a considerable weakness and limitation and highlights an overall ‘crisis of whiteness’ in much of the health and social care research currently funded in the UK (Abbott, 2024). We should have attended to the central issue of ethnic diversity by engaging relevant community organisations from the outset rather than, as so often happens, approaching them near the end of the study to ‘boost diversity’, which is a highly problematic approach.

Control, it seems, is a precarious commodity, and we are even seeing some local authorities quite explicitly turn their backs on basic notions of independent living and equal rights (see Series, 2023; Ryan, 2024). In a section of their article headed ‘Turning the clock back? Shifting power relations with local authorities’, Pearson et al (2020: 291) view this regression as ‘social work reasserting its power’ and write: ‘We were told about a number of cases which suggested a fundamental retreat from policy discourses around choice and control. At its most acute, examples were given where it would appear that the entire independent living philosophy had been rejected by individual local authorities.’ It would not be the first time that principles designed to challenge structural inequalities have been co-opted by the neoliberal urge to maintain power. Here, we ask the troubling question about where choice and control are actually situated, and very similar discussions rage about the use of the term and the implementation of the idea of co-production, an idea increasingly hijacked to make ongoing power inequalities in social care (and indeed social care research) seem less unpalatable (Williams et al, 2020).

For those of us who remain optimistic about the potential of self-directed social care support, the ideological narrative and policy/practice reality that disabled people are lucky to have anything much at all is deeply worrying. The idea of ‘being enriched’, whether that constitutes a holiday to Florida or having PAs be completely on board with your gender or sexual identity, is increasingly presented as a lofty notion indeed. As citizenship rights get stripped away from disabled people (Morris [2016] is particularly compelling on this), sexual and gender identity rights are less well developed by comparison to other areas of disability rights claims (physical access, jobs, healthcare and so on) (Shakespeare, 2000; Shuttleworth and Mona, 2020). What our research shows is the possibility of support relationships that promote, what McLaughlin (2020: 398) refers to as, ‘an ordinary, dignified life’.

How can change be brought about? Quinn (2009) argues for the potentially transformative power of legal rights, focusing particularly on the United Nations Convention on the Rights of Persons with Disabilities. However, legal frameworks are generally inaccessible to individuals given the immense time, energy and cost implications. One way of doing this, he suggests, is to support minority voices to become more prominent and to ‘put the person back in the frame’ in order to mitigate against their relative powerlessness. This approach may go some way to change shared beliefs about what is possible and desirable, and if beliefs are challenged, then the chances of changing practices are at least enhanced. A gradual acclimatisation to the new cultural values and norms could ‘nudge meaningful change’. So, how can new values and norms be produced to ‘put the person back in the frame’? One place to start is with stories and research data because, as Owen et al (2009) write, personal narratives help undermine stereotypes and bring lost or silent voices to the fore. Plummer (2004: 14) is an established exponent of the transforming nature of ‘intimate stories’ and suggests that the concept of ‘intimate citizenship’ links the public and private, representing ‘the decisions people have to make over the control (or not) over one’s body, feelings, relationships; access (or not) to representations, relationships, public spaces’. For stories to lead to change, Plummer argues that they need to persuade people that the storyteller and the listener occupy ‘unassailable common ground’ and that the effect of storytelling can disarm prejudice. This is not a task that should rest solely with disabled people themselves, and one of our findings spoke to a relative lack of solidarity coming from the non-disabled queer community. We are grateful to the people who shared their stories with us, and we hope to play our own part in effecting change.

Funding

The research in this article was funded by the National Institute for Health & Care Research (NIHR), School for Social Care Research. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Conflict of interest

The authors declare that there is no conflict of interest.