Introduction and scope

This article explores the challenges of effecting self-directed support policies in English day services for disabled people. The article is based on a research project in a large English city completed in late 2006. The challenges identified are not unique to the city context being studied (Gordon et al., Reference Gordon, Goward, Richardson and Ramcharan2006) and raise much broader issues of how modernised day services can be established and maintained (DoH, 2005). Arguably, the very language of ‘day services’ conveys the depth of the paternalist tradition in day centre contexts (Barnes, Reference Barnes1990; Whittaker and McIntosh, Reference Whittaker and McIntosh2000) and the need for greater choices and rights for disabled people. However, the article identifies barriers to day service modernisation as well as discursive inconsistencies around some disabled peoples’ self-directed options in the context of straitened adult social care budgets. A philosophical question inheres in the future relationship between individualised and collective lives for disabled people. Day centre users have historically not had access to wider disability forums within which to build the self identities and confidence which are often assumed to be the sine qua non of self-directed support. Until 2005, day centre users did not feature strongly in discussions of self-directed support, but have recently been seen as eligible, in principle, for such policy and programme intervention. Can an individual choices discourse contained in the modernisation agenda be applied unproblematically to disabled people who have had no prior exposure to rights-based opportunities?

Modernisation of adult social care: promoting independence wellbeing, and choice

The apparent convergence of statutory and Disabled Peoples’ Movement thinking on individual self determination provides a unique opportunity in furthering the convergence of governmental and Disabled Peoples’ Movement developments towards choices and rights. However, the history of past social care policy can be viewed as unpropitious and as missing opportunities to liberate disabled people from the yoke of paternalism. Notably, the NHS and Community Care Act of 1990, whilst viewed positively by its statutory architects in the Department of Health as ending institutional care and bringing care closer to the individual and community (Griffiths, Reference Griffiths1988; House of Lords Select Committee on Health, 2007), was roundly criticised by disability and mental health organisations. Critics pointed to erroneous assumptions of ‘imagined communities’, cost saving imperatives of community care policy and policy leaving many ‘beneficiaries’ with few economic and social resources (Bornat et al., Reference Bornat, Johnson, Pereira, Pilgrim and Williams1993; Beresford et al., Reference Beresford, Shamash, Forrest, Turner and Branfield2005). The failure to fully fund such a major social care policy was coupled with suspicions that overt policy objectives of providing greater choices masked underlying Treasury-driven cost saving imperatives. That similar dynamics might attach to aspects of recent social care policy has to be taken seriously. What is novel in more recent policy and programme debates is the borrowing by the English government of the language of radical disability politics, which makes criticism of its key precepts seems misplaced and ‘unreasonable’. However, critical policy analysis is required to account for the range of dynamics underpinning modernised social care.

The recent convergence of views is significant, with a more generalised governmental championing of self-directed support to a wider range of disabled people. The earliest application of ideas of what are now termed self-directed support, dates back to the 1996 Community Care (Direct Payments Act), and the first disability-led Centre for Integrated Living (now Centres for Inclusive Living) based on a philosophy of ‘choices and rights’ was established in the mid 1980s (Barnes and Mercer, Reference Barnes and Mercer2006). Choices and rights summed up the aspirations of the UK Disabled Peoples’ Movement that disabled people should have greater control over their lives underpinned by a political struggle that fostered enabling services and a ‘sense of pride and collective awareness among the disabled community’ (Campbell and Oliver, Reference Campbell and Oliver1996: ix). Such developments, although important, were not widespread; indeed even some ten years after the Act, less than 5% of the eligible population were receiving direct payments – a key benchmark of self-directed support (Davey et al., Reference Davey, Fernández, Knapp, Vick, Jolly, Swift, Tobin, Kendall, Ferrie, Pearson, Mercer and Priestley2006). In part because of this poor take up of direct payments, the UK government redoubled its efforts to support a range of self-directed social care policies and a further reduction in traditional services, such as day centres. These ideas have converged since the mid 2000s with earlier ideas from the UK Disabled Peoples’ Movement around ‘choices and rights’, which in concrete terms favoured direct payments, joined-up financial support and the closure of institutional ‘care settings’ (Barnes and Mercer, Reference Barnes and Mercer2006). However, concern is beginning to be raised that the Department of Health may be promoting self-directed options to previously overlooked groups of disabled people, whilst failing to underwrite commitments with the additional money required to effect seismic changes in adult social care. In turn, this could lead to a rationing of funding for meaningful self direction. Without such financial commitment, current day centre users could risk being moved from a position of enforced collectivity to one of enforced individualism. The cost of adult social care and risks of unaffordable adult care in an ‘ageing society’, whilst a legitimate policy concern, has become inextricably linked with notions of choices and self determination:

Questions might be raised in policy terms as to why choices and rights remain a funding problem as opposed to social and moral imperatives. Two recent reports published by the Office for Disability Issues (Henwood and Hudson, Reference Henwood and Hudson2007; Hurstfield et al., Reference Hurstfield, Parashar and Schofield2007) also emphasised the social and economic imperative of promoting independent living:

The ease with which cost savings in health and social care sit alongside reduced reliance on informal care is noteworthy. The transcending of reliance on unpaid informal support suggests more rather than less spending on day services. Similarly a recent policy document makes clear the financial and demographic imperative for ending institutional provision:

However, the projected costs of expanded self-directed support are nowhere delineated and policy visions for self direction are based on extrapolating previous self-directed activity where recipients received higher than average support packages (PSSRU, 2006) and were often close to disabled peoples’ organisations (Riddell et al., Reference Riddell, Pearson, Jolly, Barnes, Priestley and Mercer2005). If the engendering of real choices, personal empowerment and financial savings can be squared through self-directed support, then concerns will have proved to be unfounded. However, the weight of projected cutbacks in adult social care budgets emanating from central government continues to raise real anxiety amongst mainstream service and standards organisations (Commission for Social Care Inspection, 2008; Local Government Association, 2008). As Liz Sayce, chief executive of RADAR recently noted:

It is noteworthy that whilst most key policy statements on ‘adult social care’ emanating from government emphasise cost savings and demographic ‘risks’, statements from writers close to the disabled peoples’ movement emphasise the social or moral imperative for offering greater choices (Barnes and Mercer, Reference Barnes and Mercer2006). Organisations at the forefront of modernised service delivery and user-led policy have begun to register their significant concerns on the gap between rhetoric and reality in service provision:

This is supported by evidence published in the Commission for Social Care Inspection (CSCI) report The State of Social Care in England 2006–7 (CSCI, 2008) which acknowledged that increasing numbers of disabled people are no longer eligible for statutory funded social care and that access to support resembles a ‘national lottery’.

Policy background

The arrival of the Green Paper, Independence, Wellbeing and Choice (DoH, 2005) has been seen by some to mark a watershed in the UK Government's approach to future adult social care (Morris, Reference Morris2008). This Green Paper, alongside the White Paper Our Health, Our Care, Our Say: A New Direction for Community Services (DoH, 2006) and the guidance contained in Fair Access to Care (DoH, 2003), all emphasise individual choices in preventive approaches to inappropriate care options, maintaining independence and support tailored to individual needs (DoH, 2005). Most recently Putting People First (DoH, 2007a) and Independence, Choice and Risk (2007b) have added to the message that social care solutions should be personalised, that money should follow individual disabled people and foster the ‘self management of risk’ (DoH, 2007b). In tangible terms, greater choice making will be facilitated by both more supportive professional values and practice, and specifically through the greater use of Individual Budgets and Direct Payments. Similarly, the widespread consultation that fed into the 2005 White Paper Our Health, Our Care Our Say (DoH, 2006) also emphasises the importance of choice, joined-up working, the widest use of community resources, preventing health deterioration, wellbeing strategies, more flexible and reflexive service delivery. In day-to-day terms, the modernisation agenda has arrived at a number of key self determination and personalised mechanisms best captured in ‘Person Centred Planning’ (DoH, 2002), direct payments (Glasby and Littlechild, Reference Glasby and Littlechild2002; HM Government, 2003; Woodin, Reference Woodin2006) and individual budgets (Ibsen Consortium, 2007).

The rise of direct payments and individual budgets over time has led some writers to use the term ‘self-directed support’ to sum up disabled peoples’ greater control of their support package. This rapid shift towards self direction has predictably led to diversity of response, with evidence pointing to a lottery of provisions of direct payments and some professional ambivalence towards the implications of greater ‘choice’ (Sapey and Pearson, Reference Sapey and Pearson2004; Henwood and Hudson, Reference Henwood and Hudson2007), particularly in relation to those identified as ‘vulnerable adults’ (Glendinning et al., Reference Glendinning, Challis, Fernandez, Jacobs, Jones, Knapp, Manthorpe, Moran, Netten, Stevens and Wilberforce2008). Evidence suggests that people with learning difficulties often require additional support in direct payment use via brokerage services, whilst some applicants are deemed ineligible, as they do not meet basic eligibility thresholds (Glasby and Littlechild, Reference Glasby and Littlechild2006). Notably, Holman and Collins (Reference Holman and Collins1997) made early observations that pre-existing provisions, such as Independent Living Schemes and Trusts, needed to be able to connect fully with new direct payment approaches to empower disabled people.

What the above literature displays is a broad agreement that direct payments and individualised choice are inherently welcome and suited to disabled peoples’ lives. It is unclear, however, how broader policy shifts emphasising the central role of user-led organisations (Office for Disability Issues, 2008), which in the guise of Centres for independent or inclusive living have historically been rooted in collective philosophical roots (Driedger, Reference Driedger1989), can connect with the categorical shift towards individual choice making? Writing about mental health day services Bates (Reference Bates2007) emphasises the way in which provision offers ‘safe spaces’ and an opportunity for both solidarity and sanctuary for service users from often inaccessible and disabling mainstream spaces and locations. This however is a far cry from the Disabled Peoples’ Movement's construction of collective struggle.

Collective identities

In relation to collective identity Finkelstein notes:

The question of a collective ‘disabled identity’ as illustrated in Finkelstein's assertion above, although contested (Shakespeare, Reference Shakespeare2006), might be seen as in philosophical opposition to individual budgets. However, the potential to connect individual control and disabled identity could inhere in the growth of CILs (Centres for Inclusive Living). This was given a boost in the Life Chances report recommendation that a CIL was required in every local authority area:

However, the Green Paper on adult social care makes no such commitment, although it is flagged up in the Putting People First concordat and the Department of Health is leading on implementation. Moreover, there is growing concern within the disabled people's movement about the approach being taken by government in what it terms the ‘disability movement’ (Ivory, Reference Ivory2008; Oliver and Barnes, Reference Oliver and Barnes2008). User-led organisations are increasingly struggling to be awarded service contracts and to remain financially viable in the face of a myriad of local and national organisations ‘not led, managed or controlled by disabled people [who] will find it relatively easy to adopt the phrase in order to secure funding’ (Barnes and Mercer, Reference Barnes and Mercer2006: 177).

Advocacy groups such as Values into Action and People First also clearly have a key role in supporting people with learning difficulties through the labyrinth of social care funding. The reality for many disabled people however is that they have little or no contact with activist or advocacy organisations (PMSU, 2005) and for some their sources of collective identity, however dilute, are gleaned through contexts that are rejected by the Disabled Peoples’ Movement. The challenge of responding to the majority of disabled peoples’ needs and the establishment of new solidarities and identities is easily under-estimated. To do this we need to reflect on different forms of collectivities and their potential to counter neo-liberal individualisation.

Disabled collectivities

The disabled peoples’ movement in the UK (Campbell and Oliver, Reference Campbell and Oliver1996) and globally (Driedger, Reference Driedger1989) has been founded on what might be dubbed collectivities of identity and a contestation of a range of social barriers to disabled peoples’ social participation. There are clearly significant economic facets to this struggle (Shakespeare, 1996), however the disabled peoples’ movement is characterised as being concerned with a range of barriers – environmental, economic and cultural – which serve to oppress disabled people. In line with Inglehart's classic formulation, the disabled peoples’ movement is concerned with reconceptualising social ideologies (Ingelhart, Reference Inglehart, Dalton and Keuchler1990). Inglehart characterised new social movements as post-materialist. This best captures new social movements in their concern with issue-based projects, such as environmentalism, new age religion, sexual politics and of course disability rights. The above diversity of focus and broader redefining role is embodied in Centres for Inclusive Living (CILs). CILs are seen both governmentally and by some disabled people as the focus for delivering future disability services (Prime Minister's Strategy Unit, 2005), for advancing new ways of viewing disability and one could argue new sites of solidarity. Whilst the above provides the ideal conception for many of enabling collective identity, many disabled people remain distant from or unaware of the ‘Movement’ and constituent organisations. It would be inaccurate however to see such disabled peoples’ lives as untouched by collective experience, indeed many have experienced what might be dubbed ‘enforced collectivities’. Enforced collectivities are typified in now reduced segregated long-stay, residential and day centre contexts. Critical commentary highlights the negative categorical impulses to segregate disabled people based on assumptions of sub-normality (Barnes, Reference Barnes1990). More generous interpretations point to paternalist impulses to ‘protect’ vulnerable sub-populations. It is noteworthy and not a little ironic that experiences of enforced collectiivities may afford friendships, exposure to new ideas and personal empowerment (Linton, Reference Linton2007). It is reasonable to assume that collectivised lives can be experienced positively and negatively and as potentially empowering and profoundly disempowering. It is also conceivable that aspects of our lives be influenced by collective and individual influences. What then of individualism?

On individualism

It was the French sociologist Emile Durkheim who provided the starting point in our understanding of the rise of ‘organic solidarity’ in a complex social division of labour. Individualism was perceived as a functional prerequisite of complex, flexible and geographically mobile social systems (Durkheim, Reference Durkheim1893). Of note, Durkheim viewed paid work as the currency of individualism, something questioned recently in critiques of work-first agendas at the heart of neo-Durkheimean projects (Malholtra, Reference Malhotra2005). Marx of course viewed individualism as the result of competitive capitalism, with its requirement for impersonal social actors who could best embrace the raw cash nexus that characterised industrial capitalism (Marx and Engels, Reference Marx and Engels1848[1992]). Luke's more recent (Reference Lukes1973) appraisal however makes clear that individualism is deeply ambivalent and thus amenable to a range of ideological ends, both reaffirming and also challenging social hierarchies:

Lukes of course makes clear in his later writings the perception that individualism has been used by neo-liberal governments to support anti-interventionist ideas. More recently, Mike Oliver's classic Politics of Disablement (Reference Oliver1990) updated Marx in providing a fundamental critique of individualism as a key ideological starting point and one inimical to an a liberatory politics of disablement. It is therefore a challenge to envision the individualisation of adult social care without individualism. Clearly the ‘self direction’ and ‘self management’ which have grown out of radical critiques of liberalism and neo-liberalism risk being distorted to equate more fully to ‘responsibilisation’ and victim blaming discourses (Dean, Reference Dean2007). The need for parallel collective contexts with which to comprehend and understand shared experiences and identity alongside enhanced individual control is then very real.

Reflecting on the needs of a globalised economy, Beck et al.'s celebration of ‘reflexive modernisation’ (Beck et al., Reference Beck, Giddens and Lash1994) is typical of work which envisions the reflexive self as the essential building block of complex and responsive economies. As they note there are implications for individuals and social collectivities as in reflexive modernisation:

What is unclear in this and similar formulations are how self organisation and community can cohere. At no point do such arguments acknowledge that self and community ideas might conflict where individualism is promoted as the basis of social and economic efficiency. Komter provides a more critical approach in his appraisal of new ‘segmented solidarities’ which emerge partly in response to rapid social and institutional change (Komter, Reference Komter2005). Whilst (rightly) arguing for greater collective strength, the Disabled Peoples’ Movement in the UK (Campbell and Oliver, Reference Campbell and Oliver1996) and US (Charlton, Reference Charlton2000) has not been able to safeguard these ideas for all disabled people in an increasingly individualised and marketised social care context. The ability to articulate needs, or locate and use advocacy in gaining control, seems pivotal in engaging in a reflexively modernised adult care model based on self management. If we fail to build in these supports and safeguards, issues of access, equity and isolation may arise needlessly. We need to be honest in facing up to the reality of many disabled people being far removed from disability organisations and sources of collective solidarity and/or identity. The following aims to provide examples of the lived experience of these current policy contradictions.

The need for greater control: service user views of current services

The following provides highlighted findings of a study of Day Services modernisation in a large English city (population 0.4 million). The fieldwork for this study was completed in the North district of the City in late 2006. In total, over 30 participants were interviewed ranging from the Director of Adult Social Care, frontline managers, informal carers and day service users. Day service users (n = 20) were interviewed in day centre contexts. Day service users were purposively sampled using maximum variation principles to include respondents with a range of impairments including physical impairments, learning disabilities and mental health problems. A range of ages, ethnicities, sex and length of time in day services was reflected in the interview sample. The lead researcher had previously completed work on day centre attendees in the south district of the city, and the profile and experiences of this group, once selected, was not untypical of the wider city experience of day centre changes wrought by modernisation.

Findings

Overall, despite the efforts of the city council, current service users had little working knowledge of what the modernisation agenda meant for them in practical terms and most could not envision what a self-directed daily life would feel like. Of the 20 day service users interviewed, only two had any links with disability organisations (both with People First). By definition, most day centre users’ social and spatial worlds were largely focused on day centre contexts, although four of those interviewed were also working outside in a paid or voluntary capacity. It was important therefore to briefly explore experiences of current services. The following typifies responses to questions about current choices. There were in reality few choices made available to day centre users adding to the perception of the need to reduce day centre dependency:

However, the following comment from a family carer of a day centre user highlights the inherent challenges of engendering responsive adult services per se and the reality of adult services for some disabled people:

The respondent also later refers to the cash-strapped environment which pervades adult services in the locality; this reflects policy evidence presented earlier (National Centre for Independent Living, 2006; Commission for Social Care Inspection, 2008; Local Government Association, 2008). The gaps in day service provision and the aspiration to do activities currently not made available was a recurring theme in the study findings. At the same time, many day service users also wanted to hang on to what they had known for some time as it was currently the best option they had. There was evident a pervasive tension between what might be dubbed idealised and pragmatic ‘here and now’ appraisals of options beyond day centres.

Enforced collectivism: lost years or stepping stones to collective empowerment?

Although often displaying mixed sentiments, there were many comments that supported the value of Day Centres. Many acknowledged that they had been placed together with other disabled people simply because that was the ‘done thing’. However, this enforced collectivism turned out serendipitously to be an important collective identity for some centre users:

The exact value then of current day centres as expressed by service users depended on the perceived current options, the range of activities on offer and on the age, outlook and impairment of the service user. This offers some clues as to future policy options for self-directed lives into the twenty-first century. As the modernisation agenda aims to afford greater choices and to review the value of day centres, service users were asked to reflect on recent changes in day centres. Interestingly, many service users refer to the reduction in certain forms of day centre activity over time due to cost savings:

It was perhaps predictable that some day centre users who had been placed in day centres without a process of choice, who had witnessed service cutbacks over a number of years, should be somewhat suspicious of proposed mainstreaming of daily lives; as one service user notes:

This begs a question as to the nature and substance of choice on offer. Of note, none of the research participants had received the more substantial forms of self-directed support such as direct payments during the lifetime of the project and were therefore prey to the rhetoric of self-directed support without receiving the quantity of financial support required to engage with other disabled people and wider society in a safe and genuinely freely chosen way. Exhortation to seek options outside of day centres often translated into equally ‘safe’ activities of painting and craft making in contexts identified by centre staff and key workers. Life in the mainstream was beginning to feature more strongly in daily activities, but often took the form of visits to town centres with key workers or where possible individual disabled people spending short periods of time in the ‘high street’ but a great deal of former centre-based time was beginning to be spent at home. This did not square well with notions of self-directed support and reduced informal care spending being predicted by the DoH (Hurstfield et al., Reference Hurstfield, Parashar and Schofield2007).

Choices and rights: who's choices, whose rights?

Some comments focused on the principles of choice as outlined in Independence, Wellbeing, and Choice (DoH, 2005) and Our Health, Our Care, Our Say (Doh, 2006). The majority of day centre users (16/20) concentrated, as might be expected, on the likely impact on service users of feared centre closures:

Similarly:

A final reflection is provided by a carer of a current day centre user. Whilst not denying the values of choices and rights, the carer notes the reality of moving quickly beyond current day centre provision and the requirement for intensive transition planning: