Self-Directed Support: A Review of the Barriers and Facilitators

5 FACILITATORS

5.1 The research evidence and accounts of practice and personal experiences contain many examples of what are termed facilitators or levers that help develop the positive outcomes of SDS. These relate to clear policy messages and encouragement, to the role of leadership in developing SDS, the reports from end users and from carers of the benefits of SDS, flexible and transparent policies and procedures, and enthusiasm and good experiences among practitioners.

Policy

5.2 Policy and practice guidelines help support the development of SDS. While the role of personal assistants ( PAs) (the employment model most often described in research and other accounts) may be individually negotiated, there is some evidence that this relatively new model of social care support is assisted in policy terms by:

• Clear guidelines, outlining the employee's role and what is expected; ^{( 142)( 164)}
• Policy encouragement of the development of networks of support for individual PAs; ^{( 142)}
• Encouragement for users to minimise risks to themselves by being good employers, for example, encouraging people to check references and possibly if a PA has a criminal record or has been dismissed from work with vulnerable adults.. ^{( 3)( 16)( 53)( 58)( 85)( 165)}

5.3 Incorporating NHS funding into an IB would significantly increase its size and usefulness according to some studies. ^{( 46)( 120)( 135)} (In parts of England and Scotland, the NHS is currently experimenting with individual health budgets).

5.4 LAs should be prepared to monitorSDS spend and support plans, as well as to review whether SDS is working well for particular users. They are still responsible for individuals receiving SDS. ^{( 15)( 17)( 55)( 56)( 61)( 64)( 69)( 74)( 77)( 99)( 112)( 127)( 133)( 139)( 144)( 160)( 165)( 166)( 167)} This may be particularly relevant in the case of older users, because their needs are likely to change over time. ^{( 101)} There are suggestions that using payment cards may be an easy way of monitoring individual spend. ^{( 168)} Theoretically, these can be charged up with money so that there is no need for a separate bank account (which may be difficult for users to establish). It is not clear how such ideas about monitoring relate to calls for 'light touch' approaches (as called for by Homer and Gilder) ^{( 27)} and there is no evidence of how they work in practice across the social care system. Monitoring is said to be particularly important in rural areas as people in these locations could become isolated. ^{( 15)}LAs may need to take some responsibility for emergency planning,^{( 57)( 118)} building this capacity into support plans.

5.5 SDS should not be viewed as primarily or even necessarily a cost-saving exercise. It can be expensive^{( 9)( 68)( 95)( 114)} and while outcomes may be better they may be more costly. ^{( 35)( 36)} Some argue that government at local and national levels must be prepared to provide extra funds during the implementation process. ^{( 98)( 103)( 104)( 106)} This may be easier for larger LAs with more sizable budgets because start-up costs may mean that aspects of SDS are more efficient to run on a larger scale. ^{( 24)}

5.6 There is a view that LAs should be prepared to spend more money in rural areas for the following reasons:

• To cover higher transport costs; ^{( 15)( 92)}
• Because some older people in rural areas may not want to hire care workers from their immediate local area because they may be embarrassed about exposing vulnerabilities within a small community; ^{( 15)}
• To pay for/set up advocacy services where these do not exist; ^{( 84)}
• To encourage providers to move into these areas. ^{( 57)}

5.7 SDS policies/individual support plans should be focused on outcomes, not on fitting users into existing services. This will encourage flexibility and creativity. ^{( 17)( 21)( 64)( 67)( 75)( 90)( 116)( 140)( 144)( 160)( 162)( 168)}

5.8 Service users should be consulted and involved in SDS implementation schemes from the outset to ensure it works. ^{( 10)( 17)( 19)( 21)( 56)( 61)( 75)( 95)( 96)( 99)( 106)( 123)( 128)( 131)( 132)( 165)( 169)} So too, should front-line staff.^{( 12)( 35)}

5.9 Evidence from early schemes is that the time at which SDS is offered is important. People in crisis (such as when in very poor health) are not in a good position to make long-term choices about their support. Some suggest that the best time for them might be at first review stage. ^{( 121)} This might be appropriate for older people in particular. ^{( 35)( 49)( 62)( 117)( 148)}

5.10 Nonetheless, others argue that it should be recognised that SDS is a universal system and that IBs or DPs may not be the 'right' option for every service user. ^{( 64)( 90)( 128)} However, there is little evidence of the working of different forms of deployment. Some users have welcomed the opportunity to 'split' support, managing some money themselves but leaving the LA to provide other services. ^{( 33)( 66)( 100)} This option is said in relation to older people in particular, because they may be more wary of managing money; their needs may be fluctuating or they may not wish for the responsibility of employing of choosing staff. Again this is sometimes said in relation to older people. ^{( 62)( 148)}

Leadership

5.11 It is suggested that SDS champions should be identified so that they may spread support for the policy. ^{( 89)( 90)( 96)( 97)( 107)( 113)( 125)( 128)( 148)} For example, specific or dedicated DP officers or even a team could be established within each LA^{( 94)( 107)( 125)( 128)( 131)( 160)} or for specific service user groups ^{( 116)} such as mental health users. Furthermore, some suggest that a national forum would enable leadership staff to share best practice. ^{( 106)} For problems that may not be resolvable at local level, or appear to be commonly experienced, a DP hotline may be a way to offer advice to staff uncertain about specifics. ^{( 91)( 97)( 131)}

5.12 Overall, it is widely observed that strong leadership is a key enabling factor and that the characteristics of this might include:

• Being able to work with and to motivate teams. ^{( 61)( 88)( 89)( 90)( 98)( 112)( 113)( 126)( 129)}
• Being able to work in a discrete or innovative team to develop a new system while the current system is still in place. ^{( 27)}
• Being able to work within the LA itself with credibility, and having the ability to work with others' priorities and concerns. ^{( 27)( 32)( 37)( 61)( 69)( 88)( 89)( 92)( 93)( 96)( 105)( 109)( 113)( 122)( 128)( 131)( 132)( 133)( 135)( 148)( 150)( 152)}
• Central government support from named or discrete teams able to manage political interfaces. ^{( 84)( 92)( 105)( 122)( 150)}
• This is because targets set by central government increase SDS uptake. ^{( 94)( 107)( 125)} There has been a suggestion that targets should be set and then publicised in order to be most effective. ^{( 3)} The costs of this are not seen as unduly high. ^{( 170)}
• One study concludes that a government lead would be helpful generally to change cultures. ^{( 107)}
• In New Zealand, a report summarising international experience identifies a need for: 'clear policy and political mandate and leadership' ^{( 163)} with strong emphasis on coherence or consistency, a commitment to equity, and accessibility.

5.13 Similar to observations that culture is important within localities (and that this may explain variations in SDS take up), ^{( 107)} some experiences suggest that a steering group should be established to support leaders.^{( 32)( 93)( 106)(.)( 129)} The latter report recommends that user representation is helpful on such groups and another report suggests that these groups should be multi-agency and multi-disciplinary. ^{( 109)} More widely, multi-agency working is reported to be essential if SDS is to work effectively. ^{( 10)( 12)( 32)( 75)( 90)( 97)( 98)( 103)( 109)( 113)( 128)( 164)}

5.14 Whatever form SDS takes at local levels there are calls for SDS implementation or roll out to have a realistic action plan and clear implementation procedures,^{( 89)( 129)} including the provision of publicity materials. ^{( 107)}

5.15 Several studies have suggested that within the wider LA, commissioning procedures may need to change in recognition of the different requirements of SDS. It is suggested that these may entail moves:

• Away from large agencies towards smaller, local provider organisations; ^{( 9)}
• To greater focus on developing a market within which service users can make choices; ^{( 59)( 116)}
• Away from block contracts; ^{( 18)( 50)}
• To ensure that all user groups are adequately (presumably this also means equitably) served, including people with mental health problems. ^{( 32)}

5.16 Others observe that SDS needs to be part of wholesale system change within social care. ^{( 11)( 32)( 46)( 52)( 88)( 96)( 102)( 130)( 131)( 134)( 135)( 155)( 166)}

User and carer interests

5.17 There is much comment on the need for information about SDS and its optimal characteristics. Similar points are made about the quality of information needed for the workforce, service users and carers:

• It should be accessible and intelligible. ^{( 20)( 22)( 23)( 29)( 32)( 40)( 58)( 70)( 83)( 92)( 97)( 105)( 109)( 111)( 121)( 127)( 128)( 132)( 139)( 152)} Clearly, no-one argues that information should be inaccessible and in England and Scotland a wide variety of third sector groups ^{( 90)( 171)} has recently produced publicity and information about SDS. Such work echoes the long-held views that local support organisations facilitate SDS take up and sustainability. ^{( 23)} Some studies advocate the production of accessible information ^{( 172)} and their general suggestions include using a variety of formats (including, for example, video for those unable to read), targeting information at particular groups, signposting information clearly on websites, and assuring users that information is up to date.
• There have been calls for specifically targeted information for Black and Minority Ethnic ( BME) communities. ^{( 32)( 90)( 109)} There are reports of the success of outreach work targeted at these and other minority groups, ^{( 125)( 128)} although observations are made that many older people from BME communities in Scotland are not generally aware of social care arrangements. ^{( 87)}
• SDS should be widely publicised ^{( 34)} among staff in the NHS, and amongst General Practitioners ( GPs) (often the first port of call for older service users). ^{( 139)}

5.18 Users should have access to comprehensive support throughout the SDS process of assessment and support planning. However, definitions of comprehensive support are various and not costed in most instances (the Individual Budget evaluation ( IBSEN) in England is an exception). ^{( 35)( 36)} Elements of comprehensive support include items that are sometimes ill-defined but the main core appears to be:

• Information about fair pricing for services; ^{( 35)( 106)}
• Advice about service quality; ^{( 19)( 73)}
• Information about what services are available ( e.g. a register of PAs); ^{( 15)( 29)( 43)( 44)( 70)( 72)( 73)( 123)( 156)( 173)}
• One research overview briefly describes how some Swedish users have formed a group which awards 'quality stamps' to PAs. ^{( 56)}
• Voluntary/user led support services; ^{( 10)( 15)( 22)( 25)( 30)( 32)( 34)( 46)( 50)( 56)( 60)( 62)( 83)( 84)( 93)( 105)( 108)( 115)( 117)( 118)( 120)( 126)( 128)( 130)( 152)( 168)}
• Peer support networks; ^{( 17)( 20)( 27)( 40)( 65)( 77)( 89)( 92)( 93)( 97)( 120)( 136)( 151)} for carers
• Advocacy services, usually part of independent advocacy; ^{( 21)( 29)( 32)( 44)( 109)( 128)( 141)( 174)}
• Support from LA care managers in completing self- or joint assessments; ^{( 26)( 27)( 54)( 120)( 135)}
• Brokerage services, independent of the LA; ^{( 17)( 40)( 47)( 59)( 75)( 92)( 101)( 135)} but see also the discussion of their limits by Duffy; ^{( 145)}
• Accountancy support; ^{( 19)( 21)( 84)}
• Support and training about employment issues, ^{( 27)( 29)( 84)( 111)( 118)( 151)} to address user concerns ^{( 107)} and the threat of legal challenges about unfair terms and breaches of contract.

5.19 It is important to note that these are sometimes referred to in combination but rarely are the costs and benefits outlined. Who pays for such support is not clear - and the literature does not generally discuss whether this might be the end user and the implications of this.

5.20 There is some evidence that users with strong social networks find it easier to benefit from SDS. ^{( 49)( 54)( 61)( 71)( 75)( 77)( 83)( 98)( 124)( 137)( 148)( 155)( 175)} This may make it easier for schemes that are embedded within the community (seeking to include disabled people within wider society) to make the most of SDS. ^{( 12)( 15)( 33)( 50)( 56)( 75)( 77)( 83)( 164)( 175)( 176)}

5.21 In relation to choice and control and the use of social networks, there are many reports that users often want to be able to employ family members. This works best if the process is straightforward or an automatic entitlement . ^{( 72)( 78)( 79)( 85)( 118)} The perceived advantages of this are that:

• It may solve staff recruitment problems; ^{( 154)}
• It is a matter of choice, is culturally appropriate; and is especially desired among BME users, reflected by the relatively high take up of DPs by this group; ^{( 41)( 42)( 177)}
• It is effective, particularly when supported by clear employment contracts. ^{( 119)}

5.22 Others consider that SDS works best if there are brokers and advocates who are independent of LAs and of providers. ^{( 17)( 20)( 29)( 56)( 75)( 77)( 84)( 92)( 104)( 109)( 128)} This might also work well for staff facilitating the planning process, because social workers/care managers may be wedded to traditional services and require some additional input or persuasion to think creatively. ^{( 45)( 64)( 162)} There is no evidence of a move to regulate these brokerage and support services, little information about the costs of such services, and not much debate about who should pay for them. Notwithstanding this, there is a view that LAs should be prepared to pay for advocacy (imprecisely defined) services for those users whose families or carers cannot or do not wish to take on this role. For example, Clements ^{( 161)} says that without that without this, carers may feel pressurised to take on heavy workloads. Leaders from the voluntary sector ^{( 159)} suggest that service users need rights to representation to ensure that they benefit from newly personalised support.

5.23 Many studies suggest that emergency plans should be established for users with episodic health conditions, ^{( 21)( 27)( 34)} or for all users should unforeseen problems arise (through the use of a contingency fund, or back up staff). ^{( 21)( 30)( 57)( 79)( 118)}

Processes and procedures

5.24 It is widely observed that the Resource Allocation System ( RAS) determining the sums entitled to by a service user should be clear and transparent^{( 63)( 75)( 127)( 129)} but there is little yet on the systems of appeals, complaints, and discretion, that might underpin the procedural justice of this.

Practitioner perspectives

5.25 Not surprisingly, there are widespread calls that training should be available for the following:

• Frontline staff - in general ^{( 16)( 17)( 27)( 34)( 56)( 90)( 91)( 92)( 95)( 97)( 103)( 105)( 116)( 117)( 127)( 128)( 132)( 152)( 169)( 177)}
• Specific staff - some studies have identified training needs among practitioners such as people working in mental health services ^{( 89)} where communication skills are said to need improvement in one report ^{( 29)}
• Among LA social work staff at all levels including people working in areas not traditionally seen as 'front line or direct care, such as administration ^{( 1)( 3)( 22)( 32)( 52)( 71)( 93)( 94)( 102)( 105)( 122)( 125)( 128)( 129)( 131)( 150)}
• For support workers and voluntary groups; ^{( 22)( 103)}
• For support brokers; ^{( 43)( 123)}
• For carers and PAs, to cover various subjects such as: lifting and handling; ^{( 39)( 120)( 177)} support planning; ^{( 151)} care skills and communication skills; ^{( 73)} or more generally . ^{( 93)( 97)( 123)( 142)}

5.26 Some of this training relates to changes of professional culture. For example, it is argued that social workers need to be prepared to take risks because things may go wrong, but in order to do so they will have to:

• Be confident that there will be a move away from the 'blame culture' affecting professional practice; ^{( 9)}
• Benefit from LA support for risk taking, for example, through a 'risk enablement panel' allowing frontline practitioners to consult with others ^{( 69)( 120)} (there is little evidence of how this works in practice);
• Encourage users to be aware of and manage their own risks (with training if necessary). ^{( 47)( 49)( 53)( 116)( 139)}

  5.27 While there are suggestions that small, local provider agencies may be able to provide better care, more appropriate for the users they serve, ^{( 9)( 50)( 51)( 94)( 164)} it is noted that they may operate in isolation. Networks may help these agencies share best practice. ^{( 123)( 164)}

Summary

5.28 The facilitators identified often draw on material related to pilot projects and innovations and so the evidence that they provide needs to be interpreted in this context. Few are backed up by cost-benefit or cost-effectiveness analyses. There are frequent observations that communications with services users, carers and frontline staff enhance confidence and clarity. There appear to be substantial features in common with the roll out of DPs and wider SDS systems, and local solutions to problems with Direct Payments may be very applicable to SDS. The implications for research on SDS are that there is a focus on implementation and less on sustainability. While there are many general points made about take-up, there is strong evidence that performance management is a lever to enhancing take up of SDS in the form of DPs. We have very little information on facilitators around blended funding streams or about the most effective ways of sustaining the positive outcomes of SDS over the long term.