Self-directed Support

Personalisation, choice and control

• Publisher: Dunedin Academic Press
• Year: 2014
• ISBN:
  9781780465227
• Topic: Politics & International Relations
• Subtopic: Social Policy
• Index: Politics & International Relations

Since the late 1990s, there has been a concerted policy drive across social care towards cash based modes of support and strategies to personalise services. Support for this shift was initiated by the disabled peoples movement, both in the UK and globally. Policies introducing direct payments in lieu of provided services have been secured gradually as a central plank of the campaign for independent living. Subsequently successive governments have promoted a shift towards personalisation as part of a wider focus to develop local care markets and to facilitate enhanced choice and control in service provision. In Scotland, this has been pursued through new legislation for self-directed support. As the new policy is introduced local authorities and providers face challenges in transforming social care. The authors examine some of the key themes and debates emerging from the implementation of this policy. These include a look at the new language that is emerging, as well as the changing roles for users, carers, local authorities and service providers flowing from the new policy environment. They focus on the impact of change for front-line workers and a reassess the progress of the broader personalisation agenda across the UK and in Europe during a time of widespread austerity and financial cuts.Written for professional and post-graduate audiences Self-directed Support will stimulate those wrestling with these themes from policy and professional perspectives and provide essential analysis for those studying health and social policy.

CHAPTER 1

Introduction

Over the past thirty years, there has been a gradual shift in social care provision towards an increasingly personalised framework of support, whereby individual users are more involved in the choice of services they are assessed as needing. They can have the option of purchasing these through a cash payment, which is paid directly to them (Arksey and Kemp, 2008). With new legislation for selfdirected support (SDS) implemented in Scotland in April 2014, social care has entered a new era, heralding a major cultural shift for both users and service professionals. By drawing on a range of literature and empirical findings that have underpinned the emergence of policies in Scotland, the UK and across Europe, this book sets out to unravel some of the key debates. In doing this, it will set out the framework to explore the conceptual changes, the renegotiation of professional roles and the impact on users, particularly as legislation emerges at a time of economic downturn.

Before setting out these ideas in more detail, however, it is important to recognise the origins of policy development and establish the backdrop of disability activism, which initiated these changes. We therefore begin by outlining how a campaign by a small number of disabled people informed a long-term global shift in the reorganisation and delivery of social care services. Discussion then moves to explore how direct payments (DP) policy emerged on the statute and yet led to only marginal use across the UK, especially in Scotland. Despite acknowledging the importance of an increasingly individualised model of social care, the implementation of DP policy has waned in the past decade, and successive central and local governments – north and south of the border – have embraced a new focus on ‘personalisation’. In looking at some of the broader themes through which policy emerged, this chapter concludes by detailing an outline of the book and a summary of the terms that will be used.

The campaign for personalised support: The role of disability activism

The idea of cash-for-care-based support schemes as an alternative to directly organised services originated in the 1970s in the US (Arksey and Kemp, 2008). At this time, a small group of students with physical impairments at the University of Berkeley secured the payment of cash in place of services to buy in support that fitted with their daily needs on campus. Gradually, news of this spread throughout the US, and by the 1980s similar challenges were being made by groups of disabled people in the UK (Campbell and Oliver, 1996).

As described in Pearson (2006), throughout the 1980s and 1990s indirect payments – those administered through third parties such as voluntary sector organisations or independent local trusts – were used to overcome legal restrictions to a cash-based model of support across the UK. Prior to this time, the 1948 Social Security Act covering England and Wales had stipulated that only services – not payments – could be made by local authorities, while the position differed slightly in Scotland. Provisions set out in Section 12 of the 1968 Social Work (Scotland) Act allowed cash payments to be made available by local authorities in exceptional circumstances (Roll, 1996). However, the impact of this ruling was limited, as there was only minimal knowledge of this guidance among local authority practitioners (Pearson, 2000), and evidence of only one area making payments through this route (Witcher et al., 2000).

In line with actions a few years earlier in the US, the roles of small groups of disabled people were central to changes during the 1980s and 1990s. They demanded a more flexible alternative to rigid and paternalistic modes of service provision offered to them by local authorities. Most of this activism occurred in England, where disabled people in areas such as Hampshire, Essex, Norfolk and Derbyshire initiated these challenges. In Scotland, although developments were more limited, pockets of activism also emerged during the 1980s, notably in the former Lothian region. At this time, Lothian Regional Council permitted three indirect payments to be made. While this was initially approved, problems arose when, in 1995, the then Department of Social Security was alerted to this practice and suspended all the Income Support payments of those involved. This resulted from a circular issued by the Department of Health, which stated that all forms of DP made through local authorities were illegal. Consequently, a challenge to the case in Lothian was made and won by the local authority, but the case had raised the profile and potential of cash payments to increase disabled people’s choice and control over their social care, thereby instigating the need for a formal legislative path to be developed (Pearson, 2004).

Other examples of indirect payments in Scotland pre-1996 also emerged at this time in light of wider policy shifts from central government (see Pearson, 2006). In the former Strathclyde region, monies paid from the Independent Living Transfer (ILT) helped establish an alternative model of indirect payments. These were made available to local authorities as community care was being rolled out, to allow them to develop ‘independent living’ services for disabled people in the area. Unlike the payments being made in response to the demands of disabled people in key local authorities, funding for this approach came from central government. This emerged from wider changes amid a reorganisation of social security for disabled people and the development of community care policy from the late 1980s (Glendinning, 1992) by the then Conservative government. Part of this strategy also included the launch of the Independent Living Fund (ILF), which allowed another route to indirect payments to emerge for a key group of disabled people (see Kestenbaum, 1992). Importantly, the availability of these payments through the ILF – a charity funded by central government – enabled an additional stream of cash payments to support independent living to be made available to those with the highest support needs and replace residential care as the only alternative. Since this time, the ILF has played an important role in the genesis of personalised support, facilitating increased choice and flexibility in the lives of its recipients (Morris, 2004). It has been widely popular with users, and as Jane Campbell points out: ‘The ILF has enabled people such as me to learn, work, volunteer, play and live in a way that has met our needs and allowed us to be active members of the society we live in’ (Campbell, 2014). As discussion in Chapter 5 sets out, its proposed closure in parts of the UK in 2015 therefore signifies a major setback to the independent living choices to a key cohort of disabled people across the country.

Although some local authorities were developing indirect payment schemes for small groups of users, disability activists across the UK were keen to secure a legal statute so that cash-based provision could be secured for all those who would like it. Legislation for DPs was eventually implemented in England and Wales, with the Community Care (Direct Payments) Act 1995, and in Scotland through the Scotland Act 1996. An initially reluctant Conservative government was finally persuaded to adopt the Acts after publication of research into personal assistance schemes by the British Council of Disabled People (see Zarb and Nadash, 1994) showed DPs to be around 40% cheaper than directly provided services. This proved to be an attractive pull for an administration committed to an agenda of cost-savings and efficiency. The policy framework for DPs therefore developed through both independent living and market discourses (Pearson, 2000). On the one hand, campaigning from the disability movement at both national and local levels was important in establishing momentum for change. However, on the other hand as noted, the appeal for the Conservative government rested in its positioning of DPs as part of a wider marketisation of care established through the 1990 Community Care Act. This framed DPs – and subsequently personalisation – as an instrument for facilitating choice and diversity in service provision while increasing cost-effectiveness through the development of local care markets.

DPs and personal budgets (PBs) have often been confused as being essentially the same thing – in that they both involve a cash alternative to directly provided services. However, as Beresford (2009) notes, there are important differences in their underpinning ideologies. As set out above, DPs were a grassroots development emerging from the disabled people’s movement and a desire to equalise opportunities and increase independent living, while PBs evolved from developments largely driven by professionals critical of the welfare state and its ability to promote independent living. DPs are based on a social model of disability and the philosophy of independent living, whereas ‘personalisation’ evolved from the vision of welfare reformers such as those responsible for In Control – pioneers of SDS and Individual Budgets (IBs) in 2003 as an approach to enable disabled people to direct and take charge of their support – which has since influenced national policy promoting personalisation. Although inspired by the independent living movement, the motivation for personalisation comes from a desire to reform an outmoded social care system, influenced by a model developed by In Control alongside people with learning difficulties. Its associated with the philosophy of ‘normalisation’, which is typically concerned with integrating disabled people into society, rather than challenging its barriers and discrimination. It was also intended that DPs would be set at a level that would enable independent living. By contrast, personalisation has been set on a basis of available funding through the controversial ‘resource allocation system’ (RAS) (see chapters 3 and 5 for more detailed consideration of implementation of the RAS). As detailed in the next section, its emergence on the national policy stage also reflects a starkly different path.

The rise and fall of direct payments and the rise and rise of personalisation

While the emergence of DP legislation was undoubtedly seen as a victory for the independent living movement (Pearson, 2000), its implementation was characterised by inconsistent take-up across the UK (Riddell et al., 2005), with the number of users in Scotland, Wales and Northern Ireland especially low when compared with key local authorities in the south of England such as Hampshire and Essex. From 1997 to 2003, various attempts were made by the (then) Scottish Executive and Westminster governments to reignite policy, but uptake was never more than marginal (Priestley et al., 2010; Pearson, 2004). From the outset, implementation was not mandatory, leaving potential users reliant on social workers to act as ‘gate keepers’ to a DP (Ellis, 2007). Revised legislation north and south of the border in 2002 placed a mandatory duty on all local authorities to offer DPs, but the pace of uptake remained slow, over-bureaucratic and limited by funding constraints. By contrast, the political will to implement personalisation assumed a much faster pace (Riddell et al., 2005).

Under the Labour Government (1997–2010) many of the themes that linked DPs to the Conservatives’ broader agenda of marketisation were developed through a focus on the personalisation of social care services. At this stage, ideas promoted by Leadbeater (2004; 2008) – exploring how services could be modernised through the direct participation of users in service delivery – had a profound influence on reforming the adult social care system. Leadbeater (2008, p. 47) argued strongly in favour of the model of consumerism that envisaged users taking on the role of a budget holder, but they also emphasised its link with citizenship with its related rights and entitlements. However, as Carr (2013) and others (Rummery, 2006; Morris, 2004) state, his approach to citizenship did not necessarily fit with individual identities and the experiences of people who use social care and mental health services.

The Labour Government also oversaw the publication of the cross-departmental strategy to transform the structure of services for disabled people; it was entitled Improving the Life Chances of Disabled People (Cabinet Office, 2005). As detailed elsewhere (see Pearson, 2006), it was widely welcomed by disabled people’s organisations for its wide-ranging focus on independent living and the need to engage in reform across key policy areas such as health, housing, social care, education and transport to achieve this. One of the key messages highlighted in Improving the Life Chances of Disabled People was the need to promote disabled people’s expertise in developing support structures, rather than relying on professional control. Drawing on the experiences of DP, PB and ILF users, Improving the Life Chances of Disabled People also demonstrated the need for a more flexible system of social care where some disabled people wanted more control of resources, while others were daunted by taking a DP and organising their own support.

As Beresford (2009, p. 1) observes, from this time what was set out as little more than a vague idea in the mid-2000s seemed to become ‘an unstoppable force’ over the next ten years. Personalisation in social care has undoubtedly represented a major shift in public policy. Beresford (2013) and others (see Boxall et al., 2009) highlight its ascendancy in England, with the allocation of a relatively large amount of funding in social care – £500 million – to take it forward. In Scotland, the shift to a more personalised system of social care has been slower and – as Kettle et al. (2011) note – complex, perhaps reflecting a less enthusiastic drive towards the marketisation of social care in Scotland than south of the border. Hence as policy emerged, the Scottish Government employed the term SDS to develop distinctive policy goals (Manthorpe et al., 2014), setting out SDS to be part of its aspirations to create a ‘healthier nation with stronger and safer communities’ (Scottish Government, 2007, p. 2).

The subsequent introduction of legislation for SDS was developed through the Social Care (Self-directed Support) (Scotland) Act 2013 (Scottish Government, 2013) and offered four different options for SDS – ranging from a DP approach to support arranged through the local authority (these are set out in chapters 2 and 3). This sought to consolidate the existing – and often complex – provision. Unlike previous administrations, the ruling Scottish National Party’s (SNP) support for this legislative path focused on bringing SDS into the mainstream of social care provision and thereby increasing the numbers of people directing their own support from the time of implementation of the Act in April 2014. While the Scottish Government has been enthusiastic in their support for SDS, the main drive for policy implementation has come from the Association of Directors of Social Work (ADSW; now Social Work Scotland) (Kettle et al., 2011). Unlike in England, where the Department of Health has been directive in the rolling out of personalisation including setting targets for the implementation of PBs, the Scottish Government has worked with the Convention of Scottish Local Authorities (COSLA) to encourage local authorities and their partners to progress with SDS in a way that is most suitable for local conditions (Scottish Government, 2010).

Progression in Scotland towards personalisation has been directly linked to ideas set out in the policy document Changing Lives: Report of the 21st Century Social Work Review in Scotland (Scottish Executive, 2006). The review – commissioned under the Labour Government at Holyrood and subsequently developed under successive SNP administrations – draws strongly on Leadbeater’s ideas (see Leadbeater and Lownsbrough, 2005) and places personalisation at the core of its strategy. This is located at three levels. Firstly, as a means of prevention, designed to build an individual’s capacity to manage their own lives. Secondly, personalisation for complex cases enables people to participate in shaping and delivering their service solutions. Thirdly, personalisation is framed as a means of consumer choice. This links in with broader consumerist discourse, which promotes increased efficiency and reliability in service provision.

Like developments in England, policy implementation has been supported by an additional injection of funds through the SDS Transformation Investment. This has covered funding under four broad themes: local authorities; user information and support projects; provider capacity building activity/projects; and workforce change. Available figures show that the monies allocated to local authorities amounted to around £25 million for the period 2011–15 (personal communication). As we discuss in Chapter 3, plans to roll out SDS in Scotland were also aided by the development of three test-site local authorities, where each of the designated areas trialled systems to promote this new culture of social care supported by Scottish Government grant.

Clearly, both administrations north and south of the border have been committed to the promotion of their respective personalisation projects, and both have ensured the availability of additional funds for the development of these policy drives, even at a time where the broader pattern of spending for social care provision has been severely cut. Overall, the scale of the shift towards a personalised system of social care across the UK is unprecedented internationally (Boxall et al., 2009), and as yet we have limited understanding of how the rolling out of SDS will impact on individual social care users.

Indeed, while proponents such as Leadbeater (2008; 2004) draw strongly on personal narratives in articulating his support for policy, unlike DPs the move to implement the policy of personalisation has not been based in a strong evidence base (Beresford, 2013). Furthermore, as stated earlier in this chapter, whereas DPs were rooted in the independent living movement, personalisation...

Table of contents

• Cover
• Title
• Contents
• Series Editors’ Introduction
• List of Abbreviations
• Chapter 1 Introduction
• Chapter 2 Changing Definitions and Values in New Cultures of Care
• Chapter 3 From Pilot to Mainstream: Drawing on the Experience of Self-directed Support Test Sites in Scotland
• Chapter 4 Reflections on the Transformational Impact of Self-directed Support on Support Roles
• Chapter 5 Personalisation in an Age of Austerity
• Chapter 6 Discussion and Conclusions: Self-directed Support and the Future of Personalised Social Care in Scotland
• References
• Further Reading
• Index
• Copyright