7. KEY FINDINGS AND CONCLUSIONS
Positive Outcomes for Clients
7.1. The overwhelming majority of SDS clients and their informal carers had very positive experiences of using their SDS funding to directly purchase their support and employ PAs. Despite the significant challenges that were said to be involved in setting up and managing a PA service, these were felt to be far outweighed by the benefits achieved.
Flexibility, control, choice and independence
7.2. The most widely mentioned, and for many fundamental benefit for clients and family carers alike concerned the flexibility and control that SDS afforded them over their care arrangements and thereby, their whole life.
7.3. In practical terms this flexibility and control enabled them to exercise choice over how their care was delivered. It also enabled them to make decisions about what they did or did not do, reflecting in the process their judgement regarding what was desirable, fulfilling and safe.
7.4. Choice was most commonly referred to in the context of the very personal and, for some intimate nature of the care that they required. Clients and family carers emphasised the importance of feeling comfortable in the company of their PAs and ensuring that they had the best possible mix of skills and experience.
7.5. The related benefits for the degree of flexibility and independence that clients were able to maintain were most commonly reflected in comments about maintaining friendships and social networks, and continuing to pursue interests and social pursuits where they were known as a person and not a 'client'.
7.6. Many clients commented upon the positive impact of their continued independence through helping them to stay positive and to see the potential in things rather than focussing on the barriers and limitations in their situation.
Conclusion One - Flexibility, control, choice and independence were the most widely reported benefits of SDS and collectively reflected a very substantial gain for SDS clients relative to their experiences of other forms of service.
Quality of Care
7.7. Underpinning many of the wider benefits such as choice and independence were considerations relating to the quality of care provided by PAs and the wider SDS package.
7.8. The single most fundamental gain was, quite simply, the sustained delivery of personalised, quality, hands-on care. SDS clients referred to the sustained attention to detail, sense of responsibility, pride in a job well done and investment by the PAs in a really positive caring relationship with their client, as being inimitable to achieving the delivered health and social care benefits.
7.9. Many clients received both SDS funded and delivered services at the same time. Health provision most often combined both aspects and for many clients this arrangement provided an almost seamless service that worked well.
Conclusion Two - The quality of care provided by PAs was regarded as exceptional and this underpinned the ability of SDS to deliver some of the wider benefits commented upon by clients, such as choice and independence.
Lifestyle
7.1. Whatever the client's level of impairment, they or their family carers reflected very positively upon the scope offered by SDS to live a varied life and to do things spontaneously rather than according to rigid routines. Remaining in touch with personal friends, staying engaged in social and business networks and getting out into the world on a day to day basis were widely reported benefits for all SDS clients.
7.11. For many, remaining in work or continuing to go to long established activities or on overseas holidays was as much about retaining a sense of who they were as it was about making a statement about being independent. SDS clients want to do these things because that's what they do, not because that's what they should do.
Conclusion Three - SDS enabled clients to continue to live their lives largely as they wished, making decisions about what they did on an hour by hour, day by day basis, without having to follow other people's timetables or fixed routines. In so doing, SDS clients retained a sense of their own identity and place in the world that reaffirmed their self worth.
7.12. The family carers involved in this study were, without exception, focussed upon achieving the best possible arrangements for their loved one. For them, the benefits of SDS were quite simple: being reassured about the quality of care that was provided - day in, day out - and being able to share their burden of care so that they could continue to play an active role without feeling that there was no-one else to turn to.
7.13. For SDS clients, family carers and other family members alike, being able to stay involved in a family life that included everyone in the family meant that relationships were sustained and developed and that the family as a whole was able to contribute to and benefit from each individual's life experiences.
Conclusion Four - SDS enabled families to stay together and family carers to be able to continue in their caring role. Being confident about the quality of delivered care and being able to retain, but share, their caring role left most feeling valued and supported.
Issues, barriers and enablers to further development
7.14. This section draws together evidence from previous sections of the report in order to consider those aspects of current arrangements which present the most significant issues and barriers to the further development of SDS. It also identifies both existing and potential enablers for further development.
Local authority approach and culture
7.15. As in many other aspects of public life the history of how present local SDS practice and arrangements have developed goes a long way to explain their particular unique features.
7.16. A well established user led movement to promote independent living for people with disabilities appears to provide a good basis for developing a strong shared vision and a commitment to delivering personalised support by enabling users to determine, as far as practically possible, how they spent their own SDS funding. This in turn encourages local local authorities to recognise their key role in providing leadership to the overall development of SDS.
7.17. Even without such a widespread user led momentum behind SDS, a focus upon developing specialist knowledge and skills within a dedicated local authority team can generate increased momentum and bring greater focus to the development of SDS. Without providing effective leadership though, it seems that they are less likely to develop the capability to fully understand the overall level and components of SDS funding delivered in their area. The absence of a strong user led stakeholder voice may also impact upon the sustainability of recent growth.
7.18. In the absence of a centralised or dedicated team to support SDS a strong commitment to growing SDS locally and a positive working relationship between the local authority and the local support service may still provide an effective mechanism for supporting clients and delivering effective measures to administer payments.
Conclusion Five - The key enablers to facilitating growth at the strategic level and increasing the number of multiple funded SDS packages are effective leadership on the part of the local authority, a dedicated resource providing knowledgeable and skilled oversight and support to SDS clients and the capability to apply consistent practices and procedures in the administration of funding rules which concentrate upon delivering flexible personalised care rather than the detailed audit of expenditure.
Local Support Services
7.19. Again, arrangements in the 3 areas regarding support services varied and yet in each case the service was widely regarded by local authority officials and clients alike as being knowledgeable, responsive, supportive and professional.
7.20. Most particularly, local support services were recognised by all SDS clients as having increased their personal confidence in taking on the responsibilities associated with SDS, thereby ensuring that they benefited from what SDS had to offer rather than accepting an alternative arrangement, such as a delivered service, that may not have suited them so well.
Conclusion Six - There was very significant evidence from this study that the existence of effective local support services that provide support to SDS clients, when they contract services or particularly, in their role as employers, was an essential component to the continued development of SDS.
7.21. The support services in Edinburgh and the Borders were independent voluntary bodies and whilst the DPA in Borders was more heavily involved in monitoring and administering clients' SDS funding, both of these support services felt strongly that their independent position enabled them to establish a more open and trusting relationship with clients.
7.22. In the Borders the DPA was a voluntary body that was established on the back of support and encouragement from the local authority. Its contract with the local authority involved working very closely with officers and undertaking financial monitoring tasks that in the other 2 study areas were carried out by local authority officials.
7.23. In Edinburgh the LCIL provided a range of other services in addition to SDS support and as a user led organisation had an explicit campaigning role. Whilst this clearly positioned it alongside users, its role vis a vis the local authority was more distant and significantly less dialogue was said to take place between the two on a regular basis, than was the case in the Borders.
7.24. Fife's in-house local authority support service was actively considering providing service users with a more direct say in what it does. Clients were equally supportive of this service as they were the other two, and there are plans to enhance user involvement in the service's set up.
7.25. On the available evidence it was unclear whether the governance arrangements and the level of user involvement in any one of these support services has been more or less important in enabling it to fulfil its remit than any other.
Conclusion Seven - Each local support service included in this study represented a workable and acceptable model in its local context and there was no single factor that could be identified as enabling them to be a more effective service than otherwise might be the case. The fact that each of them was highly valued and was seen to provide effective support to SDS clients resulted in them being accepted by all parties as representing a valued model.
7.26. The very importance of these services demands however that the question is asked as to whether and how they could be improved to better support further development.
7.27. Most of the SDS clients in this study reflected upon the need to seek out information, advice and support and to be pro active, often without knowing who might be best placed to assist.
7.28. It was also apparent from the interviews with support service staff that some clients require much more support than others. All were offered unrestricted access to the service, for as long as they feel they needed it.
7.29. An approach that involved profiling the needs of the client group and applying resources differentially according to their support needs and experience of SDS is one approach that may have to be considered in response to increased demand.
7.30. Each of the services within the study was under considerable pressure with growing demand and static or relatively reducing resources. Given the resource envelope that has been made available to local authorities under the Scottish Concordat, the wider context of public service modernisation and service re-design may provide a particularly important opportunity to re-consider how these services might be best equipped to respond to the further development of SDS.
Conclusion Eight - Ensuring the sustainability of local support services is fundamental to achieving the further development of SDS. Reviewing the current operation of these services with a particular focus upon performance management and efficiency gains could provide an important opportunity to realign resources and practices with the emerging demand.
Access
7.31. As for many other aspects of public service the awareness of potential SDS clients about the different funding that is available to support independent living is limited. The significance of this issue has already been noted in Chapter 6.
7.32. Social workers hold the key to the door of SDS, fulfilling as they do a pivotal role in needs assessment and initiating discussion about service options. Whilst the importance of training about SDS for social workers is widely recognised to be important, it was equally widely acknowledged to be patchy and difficult to prioritise alongside other operational imperatives. In none of the 3 areas did SDS training benefit from having a dedicated budget and it was often provided to only a few eligible staff who needed it in any one year. At the same time it was also acknowledged that securing time away from front line duties for sufficient numbers to make a real difference in the uptake of SDS will be hard to achieve.
Conclusion Nine - Limited social work training on SDS was widely regarded as a factor in restricting the take up of SDS. Creating new and innovative information materials to assist social workers at their place of work and thereby limit time lost away from their desk would go some way to achieve greater progress.
7.33. In line with all other local authority social work clients, SDS applicants are subject to eligibility criteria, which in most cases are applied so as to limit the provision of a service to those considered to be in critical need.
7.34. Local authorities have introduced eligibility criteria to ration scarce resources, and in so doing they have tended not to increase investment in preventative and anticipatory services where investing now to save later might offer long term benefits for the individual and the authority alike.
7.35. Of the client groups considered in this study, eligibility criteria are therefore particularly likely to reduce access to SDS for people who need assistance to remain in work but who do not have critical needs. This is unfortunate given the ILF stated prioritisation of people in this position and the requirement for a minimum level of DP funding before ILF is considered.
Conclusion Ten - The application of local authority eligibility criteria requires clients to be in critical need and many SDS clients who are supported to stay in work only have preventative or anticipatory needs. These SDS clients are therefore unlikely to receive a service under this system and will not have access to a DP or other linked funding such as ILF.
7.36. Whether DPs were funded from mainstream operational budgets or from a capped top slice of the budget, it was recognised by local authority interviewees that a major barrier to expanding access is the difficulties associated with releasing resources locked in block contracts and building based services.
7.37. In the former case, there was evidence from one case study that by reviewing block contracts and identifying core tasks only, the size of the block could be reduced to reflect the minimum hours required. This could then be supplemented by additional hours, purchased on a spot basis or as SDS, either from the block contracted provider or through PAs. Either way, the balance between block purchased and an individually commissioned or SDS service should better reflect what best suits each individual client.
7.38. There are risks involved for the commissioner regarding the likelihood of being able to attract a provider to deliver a smaller block contracted service, the service provider regarding the viability of the smaller block contract, and to a lesser extent the client regarding their ability to recruit PAs and establish effective working arrangements with the block contracted service. However careful work to consider the possibilities in each case, suggests it has the potential to begin to shift resources to SDS.
7.39. In the case of building based services, one emerging approach involves separating out the true capital (building-related) costs from the marginal operating costs. By so doing the possibility is opened up of releasing the operating costs associated with individual clients and shifting them to SDS. More generally, the drive to modernise public services and shift the balance of community care services provides both support and impetus to local steps to review, re-design, disinvest and reinvest in new service models, including SDS.
Conclusion Eleven - Current work to release resources for service change is progressing as part of the wider agenda to modernise public services and shift the balance of care. This, combined where appropriate with an 'invest to save' approach, offers important opportunities for local authorities to review service models and priorities and develop more personalised funding approaches.
Finance and the Value of Holistic Packages
7.40. The general absence of awareness amongst clients regarding the potential different SDS funding streams has already been noted. A particular issue that emerged from the study was that people receiving DLA may not be aware of its link to ILF, nor even view it as part of the network of public funding that supports independent living. In a similar vein a number of clients commented that despite being in receipt of higher rate DLA, they had not realised for some time that they could make use of the Motability scheme.
7.41. DLA's status as a universal benefit for those meeting a set of basic criteria seemed to alter people's perceptions of whether it was really part of their SDS package at all. Many referred to it as being 'their' money, and did not view it as something for which they were accountable to the funders, as they were for ILFDP or ATW. The fact that many clients began receiving DLA many years before any other funding and yet had no formal contact with statutory health or social care services, merely served to reinforce its detachment from other SDS funding in their minds.
Conclusion Twelve - Higher rate DLA does not automatically trigger consideration for DP and ILF funding and, at the moment, people who receive it are often unaware of this link and are not being alerted to it and so to the potential benefits that SDS might offer them.
7.42. A principal focus of this research was the benefits associated with multi funded packages and particularly where a single bank account was used for the individual budget. The analysis of funding streams in Chapter Two shows that the average and range of funding streams in individual cases varied across the 3 areas. In all cases, clients received their DP, other local authority and health funds in a single payment and this was widely applauded by clients as making things substantially easier for them.
7.43. ILF on the other hand was administered separately in every case, with payment coming directly from the Fund into the client's bank account. Similarly with ATW and DSA, payments were made directly into a designated bank account. As we have seen above, DLA often reflected a different arrangement again, with payment being made directly into the clients' personal bank account. These funding streams were described variously as requiring more effort to oversee or as operating to different rules and therefore not helping to make the overall administration of total client funding as straightforward as it might have been.
7.44. There was widespread recognition of improved working relationships between the staff involved in administering and making funding decisions across the various funding sources. In most cases these improvements concerned the willingness of each fund to talk to other funders when packages were being set up or reviewed.
7.45. The incorporation of health funds into SDS packages represents an important step forward in expanding the range of needs and services that can be included. Most examples in this study involved meeting quite specific medical requirements through a combination of delivered health services and cash funded SDS health care.
Conclusion Thirteen - Clients in receipt of health funding used PAs to provide care relating to their medical condition. This enabled them to avoid having to use direct NHS services on a regular basis and represented a significantly more flexible response to their needs.
7.46. As regards the formal administrative arrangements governing the various funds, the approach adopted by local authorities to the funds which it pays was joined up to a degree, but there continue to be differences in the rules applying to local authority and health funds and to that extent they do not operate together regarding their application and accessibility, in as streamlined a fashion as they might.
7.47. Meanwhile the separate administration and payment of each of the other public funds does not appear to have changed significantly in recent times and does not deliver the joined up, streamlined approach for multiple funded packages which is necessary to make them easier for clients to monitor and manage.
Conclusion Fourteen - Local Authority administered funds are managed in a joined up way but separate rules and arrangements for these and other funds means that, overall, arrangements for paying and administering multiple funded packages are not at present streamlined and do not therefore deliver all the advantages for clients, regarding accessibility and ease of management, that they might be expected to do.
7.48. One particular example which was widely reported by clients in the Borders and Fife concerned the requirement to pay their DP into a separate bank account from their ILF, ATW, DSA or DLA. In some cases, clients had 3 or 4 separate bank accounts, requiring them to apportion PA costs to the correct fund/budget, depending upon what the hours were used for.
7.49. Whilst some clients had long since become resigned to having to administer their funds in this way, those who had become involved with SDS more recently, found this requirement to be less acceptable. For some who led particularly busy lives, it represented a significant additional burden on their time.
7.50. In Edinburgh, clients were encouraged to have a single bank account and reported positively upon how this arrangement maximised the flexibility with which they could use their available SDS funds.
Conclusion Fifteen - Use by SDS clients of a single bank account for their various funding streams helps to maximise the flexibility of the care and support they can purchase. Individuals find this both empowering and simpler to operate as is the administrative burden.
7.51. Many clients in Edinburgh and the Borders recounted difficulties or uncertainties regarding the use of their funding which demonstrated that they had not received adequate guidance on what they could or could not spend it on. Some had simply not asked the question of their support service or social worker about this whilst others had identified what they wanted to do and gone ahead regardless.
7.52. Those clients who proceeded despite their doubts, were not aware whether the expenditure that they had been unsure about had been identified by their local authority and accepted as appropriate, or had not been spotted at all. No clients reported having had a claim rejected. The absence of feedback on newly declared items of expenditure meant however, that clients' confidence in their use of SDS funds for certain purposes, did not increase over time.
7.53. Client's success in getting the best out of SDS for their particular circumstances seemed to depend upon their previous experience of SDS and their confidence or ability. People who are capable and sufficiently motivated seem perfectly able to make the system work for them so that they get the SDS that suits them best. People who are less able, less motivated or simply unaware of how the system operates appear to be at a distinct disadvantage in getting the support that best suits them.
Conclusion Sixteen - Local authority arrangements under which clients manage their SDS funds lacked transparency, thereby causing uncertainty for clients as to what they could pay for to best meet their needs. This was an important barrier for less confident clients which resulted in some choosing not to do things or not to meet costs incurred by their PAs despite considering them to be reasonable and appropriate.
SDS - Access to Training and Development Opportunities
7.54. Just as limited access to training for social workers was highlighted as a barrier to access to SDS for clients, so difficulties in accessing training for PAs presented a barrier to raising their professional status and to enabling SDS clients to act as good employers.
7.55. For some of the most dependent clients, this issue raised serious concerns about risk, safety and the conduct of specialised medical procedures which for some could be a barrier to going down the SDS route in the first place.
7.56. Some access to PA training from local authorities and support services was available, but if this important issue is to be adequately addressed either additional resources need to be costed into DPs to allow SDS clients to directly purchase training for their PAs or enhanced access to publicly provided training suitable for PAs, needs to be put in place.
7.57. One particular concern of note was that of SDS clients recruiting PAs to support them in maintaining an active working lifestyle. For these clients ensuring that their new PAs understood the issues that they faced in the wider community by virtue of their disability, was a continual challenge.
Conclusion Seventeen - Local authorities and local support services should consider how best to provide improved access to training for PAs. The nature of this training should cover not only health and social care aspects, but also matters of wider significance such as disability awareness, social inclusion and the growing personalisation agenda.
7.58. Lack of access to training for SDS clients was also presented as a barrier. For example, a number of SDS clients commented upon the challenges posed by their role as an employer. Whilst some had taken advantage of group training and advice provided by their local support service, some still found this aspect of their role difficult to handle.
7.59. As well as the more obvious demands upon SDS clients such as co-ordinating PA hours, employing PAs also requires softer people skills that enable clients to balance their need to get the service that they want with the need to provide their PAs with a work schedule and employment arrangements that motivate and support them to continue in a role which at times can be very challenging.
7.60. Many clients considered that the risks associated with recruitment of PAs were particularly acute and that the costs involved made it particularly important that well informed, practical assistance was available. This was particularly important in geographic areas where real difficulties were being encountered. In other sectors, local authorities or voluntary agencies operate an advice line or staff banks of local authority approved and disclosured staff who are available for short or long term employment.
Conclusion Eighteen - Ongoing challenges regarding the recruitment and management of PAs suggest that it will be important to increase access to PA employer training and to explore new ways of providing recruitment support and information. This may be particularly important in rural areas, in order to allow SDS clients to source new long or short term staff more quickly, and with fewer of the risks that they currently face.
7.61. An important aspect of many areas of social work practice is not only the incorporation of user consultation and participation but also the development of peer support and information networks which provide up to date feedback about users' experiences and support.
7.62. This study did not identify any examples of direct peer support being available to SDS clients. This despite the aim of many local support services to provide peer support as part of their user-led service and peer support being central to the ethos of independent living organisations as they have evolved.
7.63. Whilst local support services gather the accumulated experience of their clients and use it to inform the advice and support they provide, we have seen that some clients are disinclined to pro actively ask questions and explore options. At the same time many have access to the internet and are experienced users who are perfectly capable of searching out and benefiting from sharing first hand practical experience.
Conclusion Nineteen - Better access to peer support networks, possibly using a web- based approach, could provide an important means of enabling SDS clients to discover more about the way in which SDS funds are used and promote dialogue between clients, support services and local authorities at a local level.