2 INTRODUCTION: DEFINING SELF-DIRECTED SUPPORT
2.1 This study on the published literature on the barriers and facilitators of self-directed support was undertaken to inform a research study funded by the Scottish Government 2009-2011 that is evaluating initiatives in three local authorities. These initiatives aim to improve take up of self-directed support for people eligible for social care and other public funds. The three test site areas are working to reduce bureaucracy; to make the processes easy and 'light touch'; and to provide training and leadership to people working on these developments. Scottish Government has provided extra money to assist these three authorities and to help people in other areas learn from their experiences.
2.2 This chapter examines the use of the term self-directed support. Chapter 3 describes the methodology employed in conducting the review of the published literature. Chapters 4 and 5 report on the barriers and facilitators to SDS respectively. The final chapter, Chapter 6 provides a summary of the findings and reflects on these in relation to future development of SDS in Scotland.
Defining Self-Directed Support
2.3 This review uses the term self-directed support ( SDS) as an umbrella term. SDS is a subject that encompasses many concepts and practices in social care; sometimes these are used interchangeably; at other times they have different meanings and cultural variations ( 1)( 2). Many definitions and descriptions of self directed support are unclear and rely on imprecise terms. One of the most common reference points to SDS is the concept of personalisation, which has become widely used in England, but this is likewise a very broad term, generally using terms such as choice and control interchangeably and with little specificity. There are wide advantages to terms that are 'elastic' in that they can be shaped to local circumstances and are adaptable to changing emphases. However, there are also disadvantages, such as imprecision, the risk of confusion, misunderstanding and geographical variations.
2.4 The Scottish Executive ( 3) has been using the following, widely cited, definition of SDS:
Direct payments: 'A term used interchangeably with self directed support and appearing in legislation...The definition is historical and focused on a system of delivery rather than the flexible independence outcomes that individuals can achieve when they choose and control their lives. Self directed support is for people who have been assessed as needing help from health and social care services, and who would like to arrange for their own care and support instead of receiving them directly from the local authority. A person must be able to give their consent to be on self directed support and be able to manage it even if they need help to do this on a day-to-day basis.
2.5 More recently, the Scottish Government ( 4) has employed this definition in its National Strategy for SDS:
- Self-Directed Support ( SDS) is a term that describes the ways in which individuals and families can haveinformed choice about the way support is providedto them. It includes a range of options for exercising those choices. Through a co-production approach to agreeing individual outcomes, options are considered for ways in which available resources can be used so people can have greater levels of control over how their support needs are met, and by whom. (Emphasis in the original)
- In terms of current take-up, in Scotland 3,678 people received Self- Directed Support (Direct Payments) in the year 2009/10. This was an increase of 661 (22%) from the 2008/09 level. ( 5)
2.6 It is important to note that the requirement that individuals must demonstrate capacity to consent has been superseded by a change of Regulations in England. In particular, new arrangements for proxy decision-making now enable other people (such as carers) to consent to and manage social care public funding on behalf of users of social care services but the difficulties encountered by carers of people with dementia in Scotland in accessing Direct Payments suggest that there are other barriers to making care more personalised as this report illustrates. ( 6) In Scotland this area is partially covered by the Adults with Incapacity (Scotland) Act 2000, Community Care (Direct Payments) (Scotland) Regulations 2003, in relation to parental consent for young disabled people. The Scottish Executive Guidance on SDS( 3) also refers to supported decision making, through user controlled trusts, circles of support and advocacy.
2.7 Both within Scotland and beyond, there are attempts to clarify the field. ( 2)( 7) A recent definition from the Scottish group Changing Lives ( 8) defines personalisation very broadly, and does not confine it to social care or to adults; it reads that personalisation:
... enables the individual alone, or in groups, to find the right solutions for them and to participate in the delivery of a service. From being a recipient of services, citizens can become actively involved in selecting and shaping the services they receive. (p1)
2.8 In light of the importance of clarifying terminology, the section below describes the various definitions or meanings ascribed to certain key terms.
2.9 This phrase is often accompanied by the term 'agenda', meaning that it is government policy or an overarching policy theme; for example:
- The government is working hard on its personalisation agenda, setting an ambition that all service users have control over the support they need. ( 9)
2.10 From the viewpoint of a Commission set up by an English local authority to explore what this might mean more precisely, a definition emerged that
a… 'personalised' adult social care system… emphasises the individual's dignity, right to self-determination, choice, control and power over the support services they receive (p7) ( 10)
2.11 There are also attempts to define personalisation by its antithesis or opposite: 'The new model of personalisation is much more than 'direct payments plus'... At the heart of the model are the three concepts of user control, choice of service and flexibility of support' (p9), ( 11) although this is not universally agreed. More often there are broad aspirations for what personalisation should be: a personalised system is one 'which is fair, accessible and responsive to the individual needs of those who use services and their carers' and one where users should be able to live independently, exercise control over their own life and to participate as active and equal citizens in community life (p2). ( 12) In such definitions, the aims are instrumental and personalisation is 'a means of offering greater choice, empowerment and freedom' (p19). ( 13)
2.12 As will be described below, in turning to the specifics, 'personalisation means putting people at the heart of the design and delivery of services, giving them more choice in how they live their lives and better access to services. Developing individual budgets for service users is at the heart of this'. ( 14) Here we begin to encounter definitions of personalisation that are focused on social care services in the public sector: 'The aim of the personalisation of social care is to ensure that everyone who is eligible for social care support… has more choice and control over what that support is, how that support is delivered and by whom' (p6). ( 15) In terms of how such messages are being interpreted, there is some evidence that although personalisation is a broad concept, social workers generally interpret it in terms of specific initiatives: direct payments ( DPs), individual budgets ( IBs), and so on. ( 16)
2.13 It is not surprising therefore that there are now efforts to refine definitions:
- Personalisation is, quite simply, the design and delivery of public services in accordance with the identified needs and declared requirements of each individual rather than the commissioning of services perceived to meet the assumed needs of members of predetermined groups. (p2) ( 17)
2.14 This has also revived the political dimension of the definitions:
- Personalisation is a political term being used to describe the intended transformation of relationships between government, service providers and service users in social care. (p9) ( 18)
Direct Payments ( DPs)
2.15 In essence, these are cash payments provided instead of traditional services ( 19) and are:
- a means where disabled people can buy in the help and assistance they need for their everyday needs and support… help disabled people do things for themselves instead of relying on services directly from the Local Authority social services. (p3) ( 20)
2.16 Policy-makers in England outlined the rationale for DPs as being 'to give recipients control over their own life by providing an alternative to social care services provided by a local council' (p3) ( 21). This is a similar basis to policy in Scotland. It is important to note that Direct Payments ( DPs) are not part of the benefits system but are set within publicly funded social care services; 'the payments that are made to individuals who have been assessed as needing social care services in order that they can make their own arrangements to meet their needs' (p1). ( 22)
2.17 DPs rest on a legislative base: 'The Community Care (Direct Payments) Act 1996, which came into force in April 1997, gave local authorities the power to offer a direct cash payment in lieu of services to adults assessed as needing community care services and new sections 12B and 12C were inserted into the Social Work (Scotland) Act 1968' (p4) ( 23) and section 13 amended. The option of offering DPs was at first restricted to people aged 18-65 years. However, since July 2000 in Scotland (February 2000 in England) this power was extended to include disabled people aged 65 and over, and expanded in 2001 to include young disabled people between the ages of 16 -18 years. Since June 2003 in Scotland (April 2003 in England), local authorities are obliged to offer DPs to all those eligible. Not surprisingly, research generally uses a shorter definition of DPs as 'user-controlled purchasing of social care' (p97). ( 24)
2.18 However, some researchers and activists have emphasised that there is a distinction between a DP and a Third Party scheme. ( 23) In a third party scheme, payments are not made directly to the disabled person but to an agency or another person. Some researchers only use the term DP in circumstances where, 'the money must be paid by the local authority direct to the disabled person.' (p4). In a few instances, the definition used in a research study notes the potential for cash payments to be made to a third party or 'indirect payments':
- Direct payments is a form of welfare whereby cash payments are made directly to the individual to purchase the services they are assessed as requiring… The term 'direct payments' [in this study] is… being used generically to cover all cash payments made to individuals to purchase services, whether these are made through a third party or not. (pp75-77)( 25)
2.19 The literature reveals many different uses of these terms. For example, as the paragraph above notes, sometimes DPs are described as being predominantly made directly to the user, generally with a specific service in mind. Other descriptions use terms such as Individual Budgets ( IBs) when talking about a transparent allocation of resources (telling people what they are entitled to in terms of the money allocated to them), which may bring together funding from several sources. ( 26) However, some of the definitions offered are not widely shared in the literature and need to be carefully examined. For example, there are reports that some policy makers see DPs as funding from the LA social care budget; self-directed support as funding from multiple streams; and IBs as being like SDS but placed in a single bank account to deliver seamless support. ( 27) There is a great need for care over these complicated definitions.
2.20 Despite this, there is wide agreement that DPs enable service users to purchase their own support ( 28)( 29)( 30) , although there are sometimes unspoken assertions that the sums provided under DPs are directly equivalent to the costs of LA funded services. In other words, there is not much discussion of ways in which some DPs may be less than the total sum awarded because various 'on costs' are taken out of them before the money reaches the end user:
- Direct payments are a means by which people can be given control over the resources that would otherwise have been used to pay for services to be provided to them. (p19) ( 31)
2.21 In essence, these definitions suggest that DPs are an alternative funding mechanism, sufficient to meet social care needs:
- Direct payments are a means by which people who require social care directly receive community care monies so that they can choose and pay for their own support to meet their needs.( 32)
2.22 There are further implicit suggestions in other studies that once a person has been provided with a DP then they are not likely to call on other local authority social care services: in these definitions users are described as having 'control over money spent on meeting their community care needs, rather than receiving services arranged for them by the local authority' (p459) . ( 33)
2.23 Furthermore, some definitions focus on what can be purchased under the mechanism of DPs; one study noted that the system running described itself as offering cash payments designed to purchase 'personal assistance': 'The payments can be used to pay an agency to provide the support the individual wants, as well as to directly employ personal assistants to enable the person to live the way they want.' (p644). ( 34) Goods and equipment might have been hard to fund under this system but these were seen as completely acceptable in the IB pilots. ( 35)( 36)
2.24 Interestingly, few definitions refer to the potential in England (but not Scotland) for carers to receive DPs. Stuart is one of the few that adds carers to users in his definition of DPs:
- More people than ever before can now choose to have cash payments to purchase their own personal assistance rather than using services arranged for them by local authorities. This scheme is called 'direct payments'… There are two key components to direct payments. The first is the care manager's assessment of the needs of service users and carers… The second component is the support services that will help users and carers manage their direct payments. (pVIII) ( 37)
2.25 Lastly, there are definitions that focus on matters in common between terms such as DPs and SDS rather than defining difference. ( 38)
Cash and Counseling (American spelling)
2.26 Research has generally noted that DPs are found in other developed countries but with different terminology. The United States ( US) experience is widely reported (in the US) and the research there has been longitudinal, in-depth and multidimensional. The term used in most US studies is 'Cash and Counseling', which is defined as the provision of:
- a flexible monthly allowance that consumers can use to hire their choice of workers (including relatives) and purchase other services and goods that meet their personal assistance needs… Cash and Counseling also provides counseling and fiscal assistance to help consumers plan and manage their responsibilities and allows them to designate representatives (such as family members) to make decisions on their behalf. (p2) ( 39)
2.27 The similarities between Cash and Counseling and DPs are considerable as Cash and Counseling is described as 'offering elders and younger persons with disabilities a cash allowance in place of agency-delivered services' (p812), ( 40) although the nature of the information services provided differentiate these from UK schemes. 'The Cash and Counseling model offers a cash allowance and information services to clients so they can purchase personal care services, assistive devices, or home modifications that best meet their individual needs.' (p646). ( 41), ( 42) In contrast to the UK, there has been early development of 'Cash and Counseling schemes for all age groups… (it) gives frail elders and adults and children with disabilities the option to manage a flexible budget and decide for themselves what mix of goods and services will best meet their personal care needs.' (p1). ( 43)
2.28 Turning to the UK, and in particular, England, individual budgets ( IBs) emerged early on as a term that virtually summed up the meaning of personalisation in adult social care. Many researchers have relied on the Department of Health's definition or 'product branding' of IBs:
- [they] bring together various existing funding streams (community care purchasing budgets, community equipment budgets, Supporting People funding, Disabled Facilities grants, Independent Living Fund, Access to Work) in order to permit social care users to construct care packages to suit their needs and provide them with the outcomes that they [want]. (p18) ( 44)
2.29 Definitions mention that this blending of funding streams theoretically enables IB 'holders' to fund other forms of support than through employment of support workers: 'IBs are a form of individualised funding ( IF). In an IF system, disabled people are given public funds that they can use to buy services or employ support workers' .( 45)
2.30 Early in their conceptualisation, there were comments that financial allocations were more 'visible': 'an individual budget is essentially about being clear with people from day one how much is available to spend on meeting their needs, and ensuring that the person and those close to them have as much control as they want over how this money is spent on their behalf' (p2). ( 46) It is evident from the start what the resource allocation will be; it is 'up-front' (p3). ( 47) Indeed, funding broken down to the level of the individual is prominent in most definitions: a personal budget is 'an arrangement which provides disabled and older people who are eligible to council social care with "a clear, upfront allocation of funding to enable them to make informed choices about how best to meet their needs".' (p22). ( 48) Nonetheless, other elements are depicted as crucial: 'a number of important principles underpin IBs - self-assessment; self-definition of desirable outcomes, with user choice about how these are achieved; integration of funding streams, with clarity about budgets and service costs; support for users in planning how to use resources (see the influential and detailed evaluation (termed IBSEN) of IBs by Glendinning et al ( 35)).
2.31 Turning to attempts to distinguish IBs from DPs, several themes emerge: such as combined funding streams: DPs are predominantly made directly to the user, generally with a specific service in mind. IBs are intended to provide a transparent allocation of resources, bringing together funding from several sources ( 26), although the IBSEN study found very little blended funding. Many involve social care funding alone or possibly 'combined with Supporting People money for housing related support' ( 49) from the local authority.
2.32 Like the definitions of IBs, newly emerging definitions of personal budgets (covering only social care funding) stress the importance of choice and control: if someone knows how much money is available to them, and the outcomes to be achieved; the person or their advocate could exercise control over the money to the extent of spending it when and how seemed right for them. ( 50) A personal budget is also a term used in translation when referring to experiences in other parts of Europe: Kremer ( 51) describes how, across the continent, 'patients can now opt for cash and spend that money on the direct employment of carers who deliver this care in their own home.' (p385) (note,. the Dutch Personal Budget, the focus of Kremer's article, is highly regulated, although it allows for the payment of family carers.) The greater permissiveness of IBs is revealed in early studies of how they are being interpreted; for example, those who use them have greater flexibility about how to spend money than with DPs. ( 52) This stands in contrast to the barriers to employing close and co-resident relatives under DPs.
2.33 Overall, IBs' early definitions theoretically allowed and promoted self-assessment, a monetary budget (not hours per week), allowing direct purchasing of services, incorporating several funding streams, and permitting this to be spent on a variety of support options. ( 53)IBs were to combine different funding streams, align assessments, encourage self-assessment and introduce a transparent Resource Allocation System ( RAS) (a system for working out how much money a person is entitled to). They were to focus on outcomes and allow users to choose where to purchase their support. ( 54) The IBSEN evaluation found limited experiences of blended funding streams (money from different parts of the welfare system); and 'self-assessment' has been revised as a concept because assessment cannot legally be delegated by English local authorities. ( 55) One early aspiration of IBs was also that they might streamline 'assessment across agencies responsible for a number of support funding streams, resulting in the transparent allocation of resources to an individual, in cash or kind, to be spent in ways which suit them' (p3). ( 56)
2.34 What is common and enduring in many definitions is the focus on control about the spending of the allocated resource, even though the term IB is being replaced in most (but not all) parts of England by personal budgets, 'a means of giving people more control over the public resources allocated for social care services' (p2). ( 57) Personal budgets may only be related to social care and so the debate around choice centres on this area. It is often observed that there are various ways of doing this, meaning that while DPs are clearly a sub-set or part of personal budgets, there are alternative ways of managing the resource through 'other forms of deployment'. ( 58) Little evidence exists on other forms of deployment to date but they can include legal Trusts or Provider Held Accounts.
2.35 In terms of the development of these ideas, many commentators allude to the evolution of personal budgets, which built on learning from DP and the In Control ( IC) programme. IC's key contribution was to develop and model, with local authority partners, an alternative 'operating system' - self-directed support. 'This aims to shift power to people via major adaptations to the way in which social care resources are allocated, controlled and used' (p16). ( 59)
2.36 Finally, while US literature often refers to Cash and Counselling schemes as noted above, some use the term IBs: 'The "individual budget" model is a service option that offers beneficiaries an individual budget that they manage to obtain services they need, in place of the traditional package of Medicaid supports and agency-provided services' (p1). ( 60) It is worth noting that they do not mean the same as UK examples.
Self-directed support ( SDS)
2.37 Amid the many attempts to locate terms in a history of ideas, are those that cast SDS and other descriptors in the disabled people's movement literature. For example, the Department of Health ( DH) describes how 'Self-directed support emerged as a means of giving control over services and outcomes to individuals, with appropriate support where needed. While self-directed support may be in the form of a direct payment, people may also choose to manage it in a different way' (p16). ( 61) This evolution can also be depicted as a departure. 'The personalised approach of SDS represents a profound shift in focus: instead of being passive recipients of services, older people become active participants in their care and support' (p1). ( 62) More simply, SDS may be described as 'self-directed support, where people control their own budgets for their own support' (p26) ( 63) or more guardedly, noting that this relates to the art of the possible: 'Self-Directed Support is the name for the whole-system change of the current social care system to a system where people are put in as much control of their own support as possible' (p3). ( 64) For some there is an emphasis on minimal assessment but this is not generally observed; SDS 'places control over an individual budget in the hands of the person needing support [or their representative]... This is achieved by allocating resources to people at the start of the support process and following the completion of a simple questionnaire' (p2). ( 65)
2.38 Thus there is great variety in the definitions of SDS, ranging from that which sees it as synonymous with IBs - e.g.SDS gives people an individual budget, responsibility for which is shared between the service user and the Local Authority. Funds are allocated to this budget through a RAS (resource allocation system) and the budget managed by the individual, their representative, a social care provider or the local authority (p5), ( 66) to seeing SDS as qualitatively different: e.g.SDS is a continuum of options from DP through IB to 'Total Transformation'. ( 67) At what might be seen as the mid-point of the spectrum of definitions, SDS is described as 'when disabled people are themselves more directly in charge of, and responsible for, the shaping of assistance to meet their needs' (p44). ( 68) Even here, at the mid-point, different emphases emerge, such as the extent to which people's choices are supported or controlled by professionals; SDS 'allocate[s] people budgets so they can shape, with the advice of professionals, the support and services they need' (p9). ( 69) Similarly, some commentators identify the greater role for family members in SDS than in other systems: SDS means 'people work[ing] with their families to develop individually tailored packages of support' (p4). ( 70)SDS 'places control over an individual budget in the hands of the person needing support [or their representative]… This is achieved by bringing the allocation of resources to the front end of the process' (p4). ( 71)
2.39 Briefly, the literature reveals use of a number of other terms, mentioned below.
Personal Assistance Services program ( US)
2.40 In the United States ( US), terms such as 'Personal Assistance Services ( PAS) refer to help that people use to assist with functional tasks including activities of daily living ( ADLs) such as bathing and eating, and instrumental ADLs ( IADLs) such as shopping and preparing meals.' (p28). ( 72) 'Funded under Medicaid… the Personal Assistance Services ( PAS) program offers individuals with significant disabilities the opportunity to hire, train and manage their own personal assistants to provide essential hands-on care and complete household tasks' (p4). ( 73)
2.41 This term has been used by the influential organisation In Control, and describes individualised funding - either direct or indirect payments that enable disabled people to manage the funds available for their support. ( 74) It is also used in the US: 'individualised funding refers to the allocation of support dollars directly to the person, in contrast to a service agency' (p72). ( 75)
Cash for care
2.42 In the UK, the term 'cash for care' has been used to describe DPs and, very occasionally, IBs or personal budgets. 'Cash for care schemes are premised on the concept of the care-user receiving cash from the state in order to directly employ their own labour' (p25). ( 76) While not generally found in the research literature, partly because the term appears imprecise, the term is commonly used.
Individualized Quality of Life project
2.43 In North America, the Individualized Quality of Life ( IQOL) project aimed to provide to individuals with ID (intellectual disability) and their families, person-centred planning, access to individualised funding, support in accessing community supports, and assistance in monitoring and reviewing their individual plans. It also aimed to assist people in developing support networks and making meaningful connections to the community (target groups: children 0-6; young adults; and adults living with their parents). ( 77) It is sometimes referred to in the UK literature.
2.44 Lastly, the term consumer-directed care, more commonly found in the US, describes a system that offers services, assistive technologies and other supports over which recipients or their representatives have control. In most areas this is Medicaid funded. ( 78) As with the US Cash and Counseling schemes (see above para 1.21), a consumer-directed approach 'support[s] more consumer control and choice within service delivery' (p34). ( 79) The US research literature employs both terms; consumer-directed home and community services 'give beneficiaries, rather than agencies, the power to hire, train, supervise, and fire workers' (Executive Summary). ( 80)
Summary and implications for research
2.45 Any research on self-directed support needs to carefully describe the parameters of this system, with further care to define certain elements of it that are used in different ways. It also needs to establish whether the study is exploring DPs or other forms of arrangement or deployment. Extensions to a scheme should also be noted, for example, the change in DPs that extended them to older people in 2000. Comparisons with SDS schemes internationally and between Scotland and other parts of the UK need to be mindful of the importance of local contexts e.g. what individuals might have to contribute financially to the budget. Lastly, the definitions reveal differences in whether SDS schemes are able to offer payments or budgets to disabled people's proxies or representatives. This may affect take-up and the nature of disabilities, for example, when a proxy is willing and able to receive a DP then this will likely enlarge the numbers of people with dementia having this form of support. ( 6 81)