Counting the Cost of Choice and Control: Evidence for the costs of self-directed support in Scotland

1 INTRODUCTION AND BACKGROUND

Introduction to the study

1.1 Self-Directed Support (SDS) is an umbrella term used to describe recent developments in social care policy. These developments are designed to be:

Part of the mainstream of social care delivery, targeted at empowering people and putting the principles of independent living into practice. It enables individuals to direct the care or support they need to live more independently at home and can be instead of, or in addition to, services that might be arranged by their Local Authority. These might be community care and children's services, and equipment and temporary adaptations. (Scottish Government, 2012).

1.2 The Scottish Government aims to introduce legislation in 2012 (the Social Care (Self Directed Support) (Scotland) Bill) which will consolidate existing (sometimes complex) provision for SDS. It is intended to bring SDS into the mainstream of social care and increase the numbers of people directing their own support.

1.3 Under the forthcoming Bill, Local Authorities will be placed under a duty to offer service users a variety of options, which at the time of writing include:

• Direct Payments (DPs) - the making of a payment directly to service users to arrange their own support;
• Directing the available resource - where the user selects the support that they wish and the Local Authority arranges matters on their behalf. In practice this would encompass options such as Individual Service Funds (ISFs) where the Local Authority contracts with providers on behalf of the service user;
• Local Authority 'arranged' support where the authority arranges support on the user's behalf to meet their needs; and
• A mix of the above options for distinct aspects of the user's support.

1.4 This study was commissioned to provide evidence on the current and future costs of SDS in Scotland in order to understand the resource implications of making SDS mainstream and increasing the numbers of people directing their own support.

The history and development of SDS

1.5 SDS is neither a new nor uniquely Scottish policy development. It can be usefully set against an international background, in which there are designs across many developed welfare states to move away from state-provided services for disabled people towards more individualised, personalised, and user-centred services (Rummery, 2011). The benefits of such schemes include improved health and social wellbeing, greater independence, improved control over service delivery, improved ability to combine health and social care support, improved ability to combine formal and informal support, and more cost-effective provision of services and support (Rummery, 2006).

1.6 Recent years have seen a growing emphasis in UK social care policy on developing services that allow service users greater choice and control, whilst being as cost effective as possible. This emphasis is sometimes seen as part of a 'personalisation' agenda: giving service users access to social care services that are 'personalised' to their needs and under their control. Developments such as the use of DPs - where users can purchase their own services (for example by employing a personal assistant (PA) rather than receiving home care services), have been demonstrated to offer some users more control, and better outcomes (including improved health and social wellbeing, the ability to combine health and social care support, and to combine formal and informal care more effectively, as well as greater independence and control over services, and more cost-effective delivery of services) (Rummery, 2006).

1.7 DPs have not been without their detractors, and several commentators have voiced their concern about their implementation. These include: ideological and practical objections to the marketisation of support services (Spandler, 2004; Pearson, 2004); concerns about the destabilisation of statutory services (Rummery, 2006); the problems associated with accessing and managing payments (Pearson, 2000); the potential for exploitation and abuse of both users and workers (Witcher et al, 2000); the low level of payments compared to levels of need (Zarb and Naidash, 1994); the supply and quality of PAs to meet demand (Scourfield, 2005); equity issues concerning the differences between users and non-users of schemes (Glendinning et al, 2008; Leece and Leece, 2006); employment protection issues for statutory and agency home care workers (Ungerson and Yeandle, 2007; UNISON, 2012); concerns about the role of social work and care management support (Leece, 2007; Ellis, 2011; Dickens, 2012); mixed evidence for improved outcomes when compared with statutory services (Glendinning et al, 2008); the unsuitability of such schemes for particularly vulnerable users, including those in periods of acute mental or physical ill-health, those experiencing significant crisis or upheaval and those unable to act as employers without suitable advocates (Rummery, 2006; Ferguson, 2011); and the risks of destabilising statutory services which are aimed at those adults for whom such schemes are unsuitable (Spandler, 2004; Ferguson, 2011).

1.8 Take-up, at both institutional and individual level, has varied considerably across the UK. Priestly et al (2007) found that rates of take-up in England were more than double that of elsewhere in the UK, with some single Local Authorities (e.g. Hampshire) having more users registered than the whole of Scotland. According to latest figures rates of take-up of DPs are still far higher in England than in Scotland and, as at 31 March 2011, both Cumbria and Lancashire had more DP users than the whole of Scotland (Scottish Government 2011; NHS Information Centre 2011). Concerns have also been voiced about low and inequitable takeup amongst certain groups, particularly learning disabled, older people and Black and Minority Ethnic (BME) groups (Priestly et al, 2007). Some of the barriers to the takeup of DPs included lack of awareness from front-line workers and managers, and the need to invest in advocacy and support organisations to help users manage their payments, as well as concerns expressed about the risks involved for vulnerable users and a resistance to the perceived 'privatisation' of social care (Pearson, 2000; Riddell et al, 2006).

1.9 DPs and the option of directly purchasing their own services are not the only way that users can gain the benefits associated with greater choice and control over their services. Several pilots in England and Wales have enabled the pooling of various budgets streams to provide 'individual budgets' for a variety of user groups (Glendinning et al, 2008). In recent years SDS developments other than DPs, such as ISFs have begun to emerge offering users greater choice and flexibility without the responsibilities inherent in DPs.

1.10 Under the current existing legislation permitting DPs and other forms of SDS, users still need to undergo a community care assessment to see if they have eligible needs. The forthcoming Bill will not change this: no 'new' users will be eligible for support who would not have been under existing arrangements. However, the legislation will provide a framework of options with the 'default' assumption being choice for individuals rather than a particular mechanism such as DPs or ISFs - it will be for users to select their preferred option and for Local Authorities to ensure that they can make an informed choice. In practice, this is expected to mean a larger volume of people using DPs and ISFs than is currently the case.

SDS in the Scottish context

1.11 In Scotland SDS is the latest in a series of policies including the Community Care and Health (Scotland) Act 2003, which placed a duty on Local Authorities to offer DPs in lieu of standard community care services. The Local Authority made the payment to the individual (or representative) to arrange the services they were assessed as needing, which for some users improved the choice and control they could exercise over their services. Scottish Local Authorities (in line with English and Welsh Local Authorities) have a duty to offer eligible people DPs. From April 2005 the first non-disabled user groups became eligible: parents of disabled children and older people (aged 65 and over) who have been assessed as needing care services due to infirmity or age (Scottish Executive, 2007). Under the Bill all Scottish Local Authorities would have to offer service users the option of directing their own support, which can take various forms including DPs. Users will still need to undergo an assessment to see if they have needs which services could meet.

1.12 A closer analysis of areas where there has been a significant uptake of DPs reveals that these areas show a history of strong disability-led user organisations (and a history of quasi-legal DPs, for example through third party trusts), and/or a political commitment to the development of markets in social care provision (Leece and Leece, 2006). The twin impetus of strong user demand and a policy move towards mixed markets in social care which have driven the development of DPs and related schemes (such as individual budgets) appears to be less prevalent in Scotland, although there has been a reduction in home care directly provided by Local Authorities from 82% in 2000 to 44% in 2011 (Scottish Government, 2011) and Scottish users of DPs report similar improved outcomes to users elsewhere in the UK (Homer and Gilder, 2008).

1.13 However, institutional barriers to implementation of DPs in Scotland remain embedded and difficult to tackle, including an ideological resistance to 'privatisation' in social care (Pearson, 2004: UNISON, 2012) and a lack of commitment from senior managers, lack of awareness and training on the part of front-line care managers, and perceived budgetary inflexibilities (Riddell et al, 2006). In order to inform the development of SDS, the Scottish Government established three test sites to assess the impact of three interventions (bridging finance, cutting red tape and leadership and training). In the evaluation of the test sites, Ridley et al (2011) identified a number of process-related challenges facing Scottish Local Authorities and made a told of 24 recommendations for change to enable SDS to become mainstream.

1.14 Nevertheless, uptake of SDS in the form of DPs has increased in Scotland from 207 users in 2001 to 4,392 in 2011, and the total value of DPs has increased from £2.1 million in 2001 to £50.2 million in 2011 (Scottish Government, 2011). The sharpest increase nationally has been in recent years, with 29% of DP packages ongoing in March 2011 being in place for less than a year. The forthcoming legislation, which is predicted to increase take-up of these types of SDS, builds on the growing number of users and Local Authorities with experience of using DPs.

1.15 Recent Scottish Government data indicates that SDS users who receive DPs are purchasing the following types of support:

Type of provision	Number of SDS (DP) packages	% of all SDS (DP) packages
Personal Care	2918	52
Social/educational/recreational activities	1062	19
Respite	984	18
Domestic Tasks	827	15
Housing Support	535	10
Other	334	6
Health Care	181	3
Meals	147	3
Equipment and temporary adaptations	31	1

Source Self-directed Support (Direct Payments) Survey, Scottish Government (2011)

1.16 Moreover, the same data indicates that 39% of DP users are employing a PA, and 34% are purchasing support directly from a service provider. "Care-providers" within the context of SDS can mean individual PAs AND organisational service providers. The important role that support and advocacy organisations play in facilitating access to DPs means that their perspectives on the costs of SDS are also vital to understand.

1.17 Uptake of DPs has been variable across Scotland, as the following data shows:

Figure 1.1 Rate of SDS (Direct Payment) per 10,000 population

Source: Self-directed Support (Direct Payments) Survey, Scottish Government (2011)

1.18 Low rates of take-up are typically found in urban areas with relatively high levels of deprivation (e.g. Glasgow, Dundee and North Lanarkshire - however other forms of SDS have been developed in North Lanarkshire which do not show in these figures). Higher rates are associated with rurality (e.g. Scottish Borders, Argyll and Bute, Dumfries and Galloway). Higher rates may also be due to the retendering of services in some areas (e.g. Edinburgh, Scottish Borders). The absolute number of DP packages is also typically larger in the larger Local Authorities.

1.19 Figure 1.2 shows that across Scotland uptake of DPs is more common for those with physical and learning disabilities than for frail older people, even though the latter form a larger proportion of the population eligible for social care support. This is an important issue, with implications for the future demand for, and therefore the sustainability of SDS.

Figure 1.2 Number of people in receipt of SDS
(Direct Payments) by user group

Source: Self-directed Support (Direct Payments) Survey, Scottish Government (2011).

The implications for this study

1.20 Evidence from England suggests that the costs of DP and other SDS-type packages varies considerably across user groups and across levels of need (Glendinning et al, 2008). The evidence also suggests that the variation possible in SDS will make it difficult to accurately assess the possible costs and different models of take-up across Scotland. The national SDS strategy, published in 2010, stressed that:

The mechanisms for getting support through SDS can be through a Direct Payment (DP) or through the person deciding how their individual budget is allocated by the council to arrange support from a provider. Some people may choose to leave the decision on how their support is provided to the council. (Scottish Government 2010, p7)

1.21 The DP model - whereby people manage their own payments and directly purchase their own support - is however the most well-established model of SDS. A recent evaluation of SDS test sites in Scotland concluded that:

…progress [towards SDS] will very much depend on local areas getting agreement at senior level on the scope of activity and having dedicated resources in place to take this forward…rather than perceiving DPs as an option on the SDS continuum, new and parallel SDS systems to those delivering DPs were created, with subsequent attempts at integration occurring late on in the test sites. (Ridley et al, 2011, pg 68)

1.22 This does suggest that considerable investments in management systems would be needed if Local Authorities were to deviate too far from those systems established to support DPs. It is therefore likely that DPs, or DP-type options, will continue to be one of the preferred options for SDS. Certainly at the time this study was commissioned and carried out, DPs were the most common form of SDS. The aims, methods and findings of this study - discussed in the next chapter - should therefore be approached within that context, and with some caution. We do not really know what the full range of SDS options will cost for Local Authorities, users, carers and providers because we do not as yet have a full understanding of the mechanisms or methods which may be pursued, particularly those which offer greater choice and control to users without using DPs. We have focussed on DPs as offering the most robust evidence to date for the costs of SDS and we can surmise what some of the costs of SDS will be based on our understanding of how the costs of using DPs have impacted on Local Authorities, users, carers and service providers.

Structure of report

1.23 The next chapter of this report gives an overview of the aims and methods used in this study. The following four chapters present the study findings. Chapter three presents the Local Authority perspectives on the costs of SDS, and chapter four presents the views from service providers and advisor organisations. In chapter five we present the findings from DP users on the costs of their social care services, and in chapter six we present the analysis of findings from the users of DPs and standard community care services, and apply these findings to modelling the resource implications for the future of SDS. In chapter seven we discuss the implications of our findings for the different stakeholders involved in our research and in the future of SDS in Scotland. Finally, in the Appendices we give further details of the methods used in the study, a glossary of terms and some additional demographic information about the users we surveyed.