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

4 BARRIERS

4.1 In this section we outline the main barriers to achieving self-directed support that have been identified in the research and other literature. These barriers have been identified at system wide level; in respect of practitioner experiences and expectations; form the point of view of people using services and carers; in relation to legal and procedural frameworks and lastly those covering management and leadership issues.

System wide

4.2 One of the consistent comments, and from a variety of sources, is that SDS is publicised insufficiently. In this section we outline the various claims made about this theme.

4.3 A number of studies and reports comment that the new ways of organising social care and increasing options are not known or understood by people using services. These have been found in studies of users of various 'client groups' ^{( 29)( 80)} (the latter relating to older service users), ^{( 82)( 83)( 84)( 85)} deaf/blind people ^{( 86)} mental health MH service users. The authors of such studies generally recommend that general publicity be improved. However, a study in Scotland also observes that many members of the public are unsure about social care provision overall. ^{( 87)}

4.4 Similarly and perhaps causally related, SDS is reported to be insufficiently known among people working in social care services (both in local authorities and in provider services). Again, this comment is made on the basis of work in various areas of social care, for example, among people working in mental health services. The following studies point to lack of staff familiarity with the term and system of SDS. This applies to studies of DPs, for example, ^{( 86)} and later expansions to SDS^{( 88)( 89)( 90)} .

4.5 More generally, government studies; ^{( 91)} overviews ^{( 92)} and research ^{( 93)( 35)( 70)( 94)( 95)( 85)} all point to a lack of information or knowledge. There is little interrogation of where such learning might take place, and it may be a long-standing problem. For example, the regulator of social care in England, the former Commission for Social Care Inspection ( CSCI ), ^{( 84)} comments that newly qualified social workers were inadequately informed about direct payments ( DPs) many years after they were introduced (1996). It raised the possibility that students are not taught about these during qualifying programmes, as had been earlier suggested. ^{( 23)}

4.6 Within local authorities, specific staff groups not working directly with service users are identified as lacking awareness of DPs. This may account for perceptions that the new system is still too 'bureaucratic' because accountancy processes remain unchanged. For example, one study ^{( 96)} cites lack of information among finance department staff as a barrier to the successful implementation of DPs. They conclude that finance and administrative staff need to understand how money tied up in existing services can be transferred into DPs and to be able to communicate this effectively within the authority (see also. ^{( 97)}

4.7 Overall, there are criticisms that there has long been a lack of accessible information on SDS. While this might mean that the information needs to be in plain English and easy to read, some researchers talk about this in relation to specific groups of potential users. For instance, commentary ^{( 98)( 37)} relates such concerns to Black and Minority Ethnic ( BME) users. Others make the point more generally in relation to all service users ^{( 72)( 99)( 30)( 70)} The point is also made in respect of people with communication needs, for example, about deaf/blind people ^{( 85)} who may need particular support and in relation to people with learning disabilities ^{( 97)}.

4.8 Even where people are aware of the principles of SDS there is a view that many are confused by the many different terms used in discussing SDS. ^{( 84)} The move in England from individual budgets to personal budgets is an example of such confusion for many. ^{( 44)( 54)( 89)( 100)( 101)}

SDS cannot be implemented successfully without an active local third sector

4.9 This claim is made on the basis that the third sector or voluntary sector may be able to advocate for the wider implementation of SDS. ^{( 46)( 82)( 96)( 102)( 103)} At one level the voluntary sector may be well placed to advise and support SDS recipients.^{( 35)} for MH users ^{( 37)( 85)( 99)( 104)( 105)( 106)( 107)( 108)( 109)} This may be because social workers are at risk of becoming overburdened. ^{( 110)} The financing of this activity in the third sector is not reported in terms of costs and outcomes.

Relationships between SDS and other benefits

4.10 It is not clear to many users and practitioners how SDS relates to other benefits, such as those that are means tested, eligibility based, and disability related. ^{( 20)( 49)( 84)( 111-113)( 112)( 113)} In particular, the Independent Living Fund arrangements ( ILF) cause particular problems^{( 114)} for reasons to do with the effects of ILF funds on other benefits and the strict ILF criteria.

SDS interfaces with other parts of the public sector are unclear

4.11 There is some evidence that many users do not understand the divide between NHS and local authority services and their remits, and are unsure about what services they can purchase with SDS money. ^{( 32)( 115)} This can lead to interagency competition or tension about which agency funds certain services (particularly for MH service users) if the NHS or local authority tries to transfer or shunt costs onto each other. ^{( 31)( 88)( 89)( 90)( 116)} It may be that these problems are broader in scope and relate to problems of interagency working between NHS and local government.^{( 30)( 35)}MH users ^{( 92)( 113)}

Lack of choice

4.12 However, there are also problems in that users can't make choices if there are not several services or individuals or products for them to decide between.

These deficiencies may be related to:

• general problems of supply and capacity in social care, the workforce or wider; ^{( 61)( 68)( 98)( 117)}
• existing services not reflecting users' needs or being inappropriate; ^{( 35)( 51)( 62)( 118)( 119)}
• services closing as block commissioning contracts are withdrawn; ^{( 33)( 57)( 59)( 69)( 102)( 120)}
• LAs paying insufficient attention to market development. ^{( 59)( 83)( 112)( 121)}

4.13 Others comment that introducing SDS is a slow process; it takes a time to become mainstream . ^{( 95)( 98)( 120)( 122)} Such experiences may contribute to a view that the process remains governed by administrative requirements or 'red tape'. For individuals there can be a long interval between application, assessment and having the money in their bank accounts .^{( 54)( 59)( 70)( 100)( 109)( 118)( 123)( 124)}

Practitioner experiences and expectations

4.14 One important barrier is that some staff may think SDS is not 'appropriate' for particular groups or individuals. Many studies have found this in relation to different groups:

• People using Learning Disability services; ^{( 74)( 82)( 83)( 92)( 125)}
• People using Mental Health services; ^{( 17)( 34)( 82)( 83)( 86)( 88)( 90)( 92)( 109)( 116)( 125)( 126)}
• Older people; ^{( 40)( 62)( 67)( 80)( 110)( 127)}
• Among user groups in general ^{( 16)( 21)( 78)( 94)( 95)( 113)( 121)( 128)}

4.15 The underlying reason for this concern appears to be that staff are anxious that SDS has the potential to put vulnerable clients at risk generally of abuse, exploitation and general distress, or lack of wellbeing arising from the 'hassle' of managing new consumer relationships. ^{( 11)( 17)( 26)( 35)( 47)( 67)( 74)( 76)( 88)( 90)( 91)( 92)( 94)( 95)( 97)( 105)( 109)( 117)( 127)( 129)( 130)( 131)( 132)( 133)( 134)} The Evaluation of the Individual Budget Network ( IBSEN) report in England observes that adult safeguarding issues had not been initially considered in many pilots and that this was of concern to care managers. ^{( 133)} Prior to the greater emphasis on personal budgets, there were reports that practitioners are concerned about the loss of 'early warning systems' operating in commissioned services that enable them to hear of declining well-being or growing mental distress and so intervene in a timely manner. ^{( 86)}

Staff are concerned about their jobs and roles in the light of SDS

4.16 The reasons found in published research for this are fivefold:

• Because they think they will lose their jobs if services such as day centres close or if assessment and monitoring become the reasonability of third sector bodies; ^{( 23)( 56)( 59)( 83)( 88)( 102)( 110)( 122)( 127)}
• Because they think they lack the professional skills to work within this framework; ^{( 1)( 67,135)} (the latter referring especially Newly Qualified Social Workers);
• Because they don't want to relinquish professional control; ^{( 44)( 46)( 59)( 64)( 98)( 104)( 115)( 117)( 136)}
• Because they are resistant to system change in general; ^{( 11)( 17)( 52)( 64)( 88)}
• Because of the administrative burden any new system brings; ^{( 47)( 77)( 95)( 110)( 122)( 132)}, particularly the complexity of administrative procedures ^{( 42)}

Staff concerns about equity and risk of abuse

4.17 However, there are also concerns based on political interpretations of the possible effects of SDS. Some staff express fears about the negative effect that SDS will have on existing services and users:

• Because they fear it will lead to inequality or 'creeping privatisation'; ^{( 86)( 102)( 107)}
• Because they think that wide uptake of SDS will force some existing services to close; ^{( 125)( 132)}
• At individual levels, practitioners also voice concerns that users will misspend their money leading to harm or lack of wellbeing. This view relates to a number of risks;
• Risks expressed in general terms; ^{( 20)( 46)( 89)( 106)( 129)( 137)}
• Among some there is the view that extending choice may mean that people will spend public money on items or services that could be seen as 'frivolous' (perhaps because non-traditional services may be viewed as non-essential) - this could also be a problem if public opinion does not support such choices; ^{( 17)( 59)( 67)( 69)( 93)( 110)( 133)}
• That there are higher risks of fraud among users; ^{( 79)}
• That service users and carers share this worry about risks of exploitation, and that it might be carried out by other users; ^{( 138)( 139)}
• Fear that users' families/carers will be able to commit fraud or abuse users more easily ^{( 53)( 67)} and that insistence or guidance about checking any criminal record in respect of people directly employed by service users is not enforceable (Disclosure Scotland). ^{( 3)}

4.18 Part of this seems to relate to problems with staff being unsure about what SDS monies can legitimately be spent on ^{( 92)} because of lack of local authority or government guidance. In other research, it is pointed out that some of the concerns expressed by staff are because they do not understand that users do not have to personally manage their budgets ^{( 86)( 114)( 140)} and that there are multiple forms of deployment or ways or managing personal budgets. Matters such as knowing the extent of duty of care were unclear among practitioners working in the Individual Budget pilots. ^{( 35)} In England, the Association of Directors of Adult Services published a guide to legal matters arising in relation to personal budgets ^{( 55)} that addresses, although does not minimise, some of these concerns.

SDS may result in poor working conditions for directly employed staff

4.19 The contention that SDS may result in poor or poorer working conditions for people working in social care rests on reports of a lack of support and/or training for directly employed care workers and their possible isolation.^{( 27)( 56)( 73)( 77)( 80)( 124)( 141)( 142)}

4.20 Conditions of employment are at risk: people working directly for service users may lack employment related benefits; they may be exploited they may lack employment contracts and professional or personal boundaries may become unclear. ^{( 1)( 56)( 73)( 79)( 90)( 92)( 124)( 143)} The risk of 'casualisation' of care staff appears to run counter to efforts to increase care workers' skills.

SDS is a damaging and expensive move from block contracts

4.21 The risks of this are perceived to lie in the effects on current and future social care capacity both privately provided in the market, in the third sector (voluntary sector) and in public services. The following assertions have been suggested:

• SDS may create financial insecurity for service providers; ^{( 120)( 130)}
• Financial uncertainties may result in the closure of some important services; ^{( 34)( 69)( 101)( 120)} especially in rural areas; ^{( 57)}
• Local Authorities ( LAs) may find it hard to extricate themselves from existing contracts and will perhaps have to bear the expense of transitionally to double fund SDS and services. ^{( 97)( 132)( 139)( 144)}

4.22 Some of the problems associated with SDS are seen as ones that may be managed by the creation of new job roles, including that of independent brokers or navigators (as this review observes later). However, there is evidence that the role of the broker is insufficiently defined and rarely costed. ^{( 10)( 77)( 121)} Are brokers acting as agents of the local authority, how are they funded, to whom are they accountable and do they act in a person's best interests? Indeed, are they really necessary? ^{( 145)} All these questions remain largely unanswered by evidence from research.

4.23 Finally, some earlier research on DPs suggested that staff may view SDS as a last resort, for certain complex or cases of concern, not a mainstream alternative. ^{( 102)( 110)}

Service user and carer perspectives

The administrative burden of SDS is too great

4.24 This point is widely reported by studies directly drawing on the views and sometimes the experiences of service user and carers. ^{( 19)( 34)( 35)( 51)( 78)( 83)( 84)( 109)( 111)( 124)( 126)( 136)( 144)( 146)( 147)} While this may not be a majority experience, these studies cover older people, people with mental health problems and carers. Concerns about administrative burden are also commonly expressed in commentaries. More specifically:

• Completion of tax forms may be a particular problem. ^{( 91)}
• Some carers spend a long time (typically several hours per week) on administration and feel that they should be compensated for this time. ^{( 118)}
• There may be a trade-off between the benefits of DP and the administrative burden they bring; ^{( 28)} this may be why 'less disabled' people sometimes do not opt for DPs because the associated administration or 'red tape' is not 'worth it' for the size of DP they will receive.
• Administration may be a particular challenge to older service users (whose health status may be poor). ^{( 57)( 148)} Similar points may apply to about mental health service users, ^{( 32)} especially if they suffer from fluctuating conditions. ^{( 86)} These observations are mainly related to SDS when operating as DPs.
• Some users experience problems opening bank accounts and feel that the system is over-bureaucratic and that there should be a light touch to monitoring. ^{( 27)} Some people are said to be unclear about matters such as whether they are permitted to use contingency funding (material from the Mental Health Foundation 2009 has recently provided guidance to users and the banking industry about some of these challenges).

Users (or carers) may not want the responsibility of managing their own money/services

4.25 This point is widely evidenced, particularly when SDS is proposed or introduced, and the details of this are covered in 4.25. While some of the research identifies this as a particular concern for older people, studies have also investigated the perceptions of carers ^{( 11)( 54)( 62)} older users ^{( 66)} carers ^{( 82)( 85)( 92)( 101)} older users ^{( 105)( 107)( 108)( 112)( 139)( 149)( 150)( 151)} carers ^{( 152)}

4.26 Some carers who are also parents may be over-protective and reluctant to allow their adult offspring to take control. ^{( 29)( 141)}

A number of studies point to challenges with the employment of Personal Assistants ( PAs)

4.27 They are hard to recruit:

• In general there are reported to be difficulties in recruitment. ^{( 2)( 29)( 78)( 85)( 97)( 107)( 108)( 113)( 117)( 150)( 152)( 153)}
• This may be a specific geographical problem, associated, for example, with rural areas. ^{( 15)( 57)( 72)( 76)( 92)( 94)( 154)} However, there are reports that it may be easier to recruit in rural or shire counties. ^{( 105)}
• This may be a problem if a service user can offer only a few hours' work. ^{( 19)( 155)}
• It may also be difficult for those without strong social networks which can be the most effective way of finding someone who will be suitable and available. ^{( 43)( 123)( 156)}
• This may relate to low rates of pay ^{( 77)( 96)( 132)} (note: no studies have taken place exampling this in the context of current economic problems and rising unemployment).
• This may be difficult for Black and Minority Ethnic users ^{( 37)} (suggested in a commentary).

4.28 Users find it difficult to manage the employer/employee relationship: Flynn ^{( 142)} observes that users are often friends with or related to their PAs and so boundaries (between professional and informal relationships) are unclear.

4.29 There is often no cover in emergencies. ^{( 39)( 73)( 85)( 97)( 111)}

4.30 There may be problems over insurance cover (users don't tend to have this). ^{( 118)( 149)}

4.31 Possibly related to perceptions of excessive 'red tape', users experience problems opening separate bank accounts for SDS funds. ^{( 30)( 91)( 117)( 126)( 132)(, )}

Negative aspects over the employment of family members

4.32 In England this has become easier with the development of SDS. Formerly, with DPs, this was often only agreed to by the local authority in exceptional circumstances. Issues arising include:

• The use of family carers to compensate for a lack of services; this can institutionalise a system of low-paid care and make family members dependent on the service user for whom they are caring. ^{( 119)}
• Family carers may ask for more money than is realistic within the SDS budget . ^{( 151)}
• Paying family members through SDS might impact on benefits and make the family worse off overall. ^{( 112)}
• An emphasis on family recruitment might discriminate against users without strong social networks. ^{( 17)}
• Social expectations that family care is a duty can create suspicion or disapproval about paying for this kind of care or treating it as a commodity. Carers may feel that they are being harshly judged for accepting payment. ^{( 137)( 138)}
• Users might prefer the authority of an employee/employer relationship rather than the complications of paying family members and transgressing social norms. ^{( 146)}

4.33 Other problems arise from judgments that SDSpayments are too small to ensure high quality support and to promote real user choice. This problem, or these perceptions, arise:

• In general but also because some people think of SDS as a cost-cutting measure and a way to reduce public expenditure. ^{( 19)( 68)( 93)( 118)( 126)}
• In the context of being able to pay PAs a reasonable wage. ^{( 30)( 56)( 72)( 83)( 96)( 111)( 118)( 132)( 149)} This leads to fears that a 'grey' or casual market in care staff can develop (see above).
• Because local authority social care funding is itself insufficient. ^{( 9)( 14)( 17)( 57)( 90)( 93)( 102)( 104)( 137)}
• Because NHS monies are not currently included ^{( 46)} thus making the total amount of money available too small to do anything with.
• As a result of users' reports that they sometimes have to 'go without' in order to afford one-off costs or new solutions. ^{( 19)}
• Because the subject is no longer 'glamorous' when it has moved beyond pilot stage when start up monies and resources are no longer available. ^{( 68)}

Users are unsure of expenditure limits

4.34 As reported above, some practitioners are unsure about the legitimacy of the use of SDS monies. This lack of clarity is also expressed at times by people who have experiences of social care support through SDS:

• Because there is said to be no clear guidance. ^{( 27)( 94)} . This lack of clarity was found by the IBSEN study (some of these significant uncertainties might have arisen in the early days of the pilots). ^{( 54)( 151)}

4.35 One report suggests that users may not understand SDS because they do not understand existing services, in other words they do not really know what SDS is intended to replace. ^{( 21)}

4.36 Users too have expressed concerns around training - its amount and its content:

• Some users are suspicious of brokers/support staff with too much training. They have had bad experiences of social services in the past and view 'professionalization' negatively ^{( 45)} (see also a later discussion paper) ^{( 145)}
• Some users are wary of traditional training routes and want to have a say in how their PAs are trained if they are to experience choice and control ^{( 142)}
• Users may be put off from SDS if they are asked to undergo substantial training on SDS because this gives the impression that managing SDS requires a high level of expertise ^{( 79)}

4.37 We lack evidence about the barriers facing carers; partly because they are rarely offered SDS in their own right. ^{( 19)( 151)}

4.38 Users consider that eligibility criteria for services are set too high and that they will not be entitled to SDS. Alternatively, users with severe needs may be deemed ineligible because they are 'incapable' of managing SDS. Fair Access to Care Services ( FACS) criteria setting thresholds for eligibility have been perceived as inconsistent and may not fit well with SDS. ^{( 17)( 20)}MH users ^{( 26)( 67)( 88)( 109)( 113)( 116)}MH users ^{( 133)( 155)( 157)}

4.39 Users may find it hard to 'think outside the box' when imagining solutions that could be funded by SDS. ^{( 68)( 98)}LD users ^{( 140)( 158)} To address this potential problem there are suggestions that keeping a diary to set out specific needs and wishes could help; ^{( 47)} or that providing real life examples may make this seem more authentic. ^{( 148)}

Legal and procedural frameworks

4.40 SDS means that users may rely on new models of support networks. This concern does not fit with some findings from some research ^{( 94)( 125)} that LAs are choosing to fund their own support services at the cost of existing, user-run disability support networks, the latter consequently losing out on funding. However, there are other reports ^{( 131)} of at least one LA entering into contracts with two independent support services during a pilot programme: this double provision was judged to be excessive and confusing. Others note concerns about over reliance on informal support networks; ^{( 98)} and again the role of the broker is unclear.^{( 45)} Some point to the potential for conflict of interest if a broker is also a service provider ^{( 48)} while some say that this can become a contested area. ^{( 145)}

4.41 In terms of risks to users of services, as mentioned above, there are concerns that there are no enforceable administrative mechanisms for registering or background checking PAs, who could present risks of harm to vulnerable people. ^{( 26)( 49)( 79)( 94)( 110)} The Independent Safeguarding Authority is only becoming operational in England and Wales at the time of writing and is under review (2010). There are uncertainties about who, if anyone, bears responsibility for the risks presented e.g. by unregulated PAs, ^{( 95)( 110)( 112)( 137)} although guidance has tried to prospectively address these matters. ^{( 55)} The Commission on Personalisation in its interim report ^{( 159)} recommends legislation enshrining a 'right to control', noting that users lack satisfactory means of redress when things go wrong and that a lack of regulation leaves them vulnerable to exploitation. In England, the Law Commission is due to report on adult social care law reform in summer 2011 which may open up debate more widely on the legal framework of SDS.

4.42 More practically, there are reports that payments are often delayed, causing serious difficulties for service users. ^{( 21)( 30)( 111)( 136)( 153)}

4.43 Some councils offer guidelines on how DP/ IB should be spent, which some users may view as patronising and restrictive, partly because they seem to negate the flexibility that is SDS' main benefit. ^{( 30)( 33)( 83)( 84)( 88)( 121)( 157)( 160)}

4.44 Integrating funding streams consistently proves difficult, ^{( 59)( 120)} a key finding of the Individual Budget pilot evaluation. ^{( 35)} This may arise because of clashes between guidance governing different funds, how they should be spent and whom they target. ^{( 26)( 35)( 67)} especially ILF^{( 91)} especially ILF^{( 135)} The reason for this is attributed to a lack of government guidance and powers over integration. ^{( 92)}

4.45 The resource allocation system ( RAS) (the system for allocating the budget to users on the basis of need or desired outcomes in the context of means testing) can cause problems:

• If there is a major discrepancy between the results of the RAS and the funding that a user is currently receiving; ^{( 120)}
• Because the RAS is difficult and complicated to devise; ^{( 35)( 120)}
• Because existing pricing mechanisms are unclear
• Because it discriminates against those living in the family home with carers; ^{( 144)( 161)}
• Because there has been over-reliance on the RAS developed by in Control, which is designed for learning disabled people; ^{( 35)( 76)}
• Because the transparency of RAS can reveal existing inequalities between different user groups that then have to be addressed; ^{( 11)( 50)( 135)}
• Because existing charging policies may be badly worked-out or not well understood. ^{( 106)( 133)}

4.46 Finally, administrative and procedural problems have been reported in the areas around assessment:

• By social workers or care managers:
• Older users are less likely to actively participate in assessment and social workers may collude in this ; ^{( 162)}
• Social workers often fill in assessment forms back at the office, suggesting that the forms would perhaps reflect their own priorities rather than those of the service user; ^{( 162)}
• Assessments by social care staff typically reflect existing services' organisation and priorities, rather than people's needs. ^{( 34)( 86)( 162)}
• People may under or over-estimate their needs in assessment:
• Users may under- (especially older users) or over-estimate their needs; ^{( 35)( 54)( 101)}
• Carers may be overlooked in self-assessment processes; ^{( 35)( 99)}
• 'Forms' or formal systems are inherently limited as a means of assessment; ^{( 26)( 54)( 120)}
• It is not clear how self-assessment aligns with LA eligibility criteria for social care services. ^{( 26)( 67)}

Management and leadership factors

4.47 Problems arise around target setting or performance indicators for managers:

• Targets for SDS uptake are not differentiated by user group; underrepresented groups like MH users may get lost amongst positive overall statistics; ^{( 22)( 89)}
• An emphasis on targets (such as percentages of people receiving SDS) can mean social workers may over-emphasise the benefits SDS for users who may not want to take it up; ^{( 118)}
• An emphasis on targets can lead to SDS being viewed as an end in itself, rather than a means to a more important end (helping users achieve desired outcomes); ^{( 59)( 67)( 69)( 104)}
• Scottish local authorities have proven resistant to central government targets, or have not been given targets. ^{( 94)( 107)( 125)}

4.48 Some consider that guidance from central government is vague and unclear. That which is intended to be flexible, can result in inconsistency. Practitioners who are uncertain of where they stand may shy away from recommending SDS to service users. ^{( 27)( 91)( 94)( 110)( 125)( 132)}

Summary

4.49 The evidence suggests that many of the barriers to the take up and use of SDS are commonly experienced by service users, practitioners and other stakeholders. There is strong evidence that processes and systems have not kept pace with the values incorporated under the umbrella term of SDS. Some of the barriers may be resolved by government guidance, which may reduce confusion and uncertainty. The balance of risks does not appear to have been informed by evidence from practice. Few studies have considered the costs of the recommendations that they proffer.

4.50 The implications for research in this area are that there are many dynamics at play when talking of barriers to SDS. Some barriers identified may apply to social care support generally, while others reflect the start of many innovations, in that there is a lack of clarity initially. The barriers identified here form the basis for exploration of SDS in Scotland, building on the considerable research evidence from experiences with Direct Payments.