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EXECUTIVE SUMMARY
Introduction
1. This review was commissioned in order to supplement information on Self Directed Support ( SDS) that emerged from work undertaken to support the Scottish Parliament's Health Committee Care Inquiry into the operation of the Regulation of Care (Scotland) Act 2001 and the Community Care and Health (Scotland) Act 2002.
2. The review was designed to provide qualitative evidence of the innovative work going on in areas with a good track record in delivering SDS in order to understand better how different practices impact positively upon the quality of life of individuals.
Method
3. The review involved 38 interviews with 2 main groups of participants:
i) Face to face interviews with 24 SDS clients and/or their informal carers: Key characteristics of SDS clients who had agreed to participate in the review were identified by local officials in order to generate a pool of participants that reflected a range of particular needs and funding streams. Other characteristics such as ethnicity, age and extent of experience of SDS were also taken into account in compiling the final sample.
ii) 14 Face to face and telephone interviews with local authority ( LA) officials, local support service staff and stakeholder representatives in each of the 3 review areas: A key LA contact was identified to assist in setting up the study and this person was also interviewed, in addition to others involved in administering SDS expenditure and providing support to clients.
Clients' and carers' experiences of SDS
4. The overwhelming majority of clients felt extremely positively about the impact that SDS had made to the quality of their care and support and the opportunities that were available to them.
5. The most widely reported benefit was the flexibility and control that SDS gave clients over who provided their care and when they received it. For those living more active lifestyles, being able to receive their support away from their home to suit their daily routine was also very important.
6. For many clients, the high quality care provided by their Personal Assistants ( PAs) meant that they were able to benefit from the wider positive impacts of SDS, i.e. flexibility, control, choice and independence. Clients also commented upon the benefits of being able to use their funds as they felt necessary in response to their changing circumstances or needs. This was greatest for clients using a single bank account for all their funds.
7. 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.
8. For family carers, being able to stay together as a family and involve their cared for partner, son or daughter in the day to day life of the family was viewed as being particularly important.
9. The most commonly reported challenge facing SDS clients was the sheer amount of effort and perseverance that was required negotiating with funders and managing their employees, to achieve the support that they needed.
Local authority approaches to SDS
10. Measures to promote and support SDS within the 3 study areas varied but in each area the local authority had dedicated staff to support and facilitate SDS and in addition funded social worker training and a local support service. Edinburgh and Fife Councils had the most centralised in-house arrangements whilst Borders Council employed the local support service to do the initial monitoring of client expenditure, something which in the other 2 areas was monitored by the Councils themselves.
11. Local support services focused on supporting SDS clients in their role as an employer of PAs and were highly valued by SDS clients. They were, however, reported to be under pressure due to increased demand.
12. Having started from a lower base, Borders and Fife have witnessed more rapid growth than Edinburgh in the total value of their Direct Payments ( DPs) since 2001, but the average value of their DPs is substantially lower. The evidence from this review suggests that Edinburgh has been more successful in putting together a larger proportion of packages that utilise a greater number of funding streams. This would appear to be where the greatest positive impact of its local arrangements has been achieved.
13. Local financial pressures dictated eligibility criteria for SDS and other services. This tended to limit access for people hoping to remain in work as the application of eligibility criteria required clients to be in critical need and did not prioritise preventative and anticipatory needs.
The impact of measures to promote and support SDS
14. Most of the SDS clients in the study said that they knew little about SDS at the time that they began to consider it as an option. Nevertheless they had a clear picture of the potential benefits that it offered them and how it might make things better.
15. Higher rate Disability Living Allowance does not automatically trigger consideration for DPs and Independent Living Fund funding and, at the moment, people who receive it are often unaware of this link and are not being alerted to it.
16. The support offered by social workers and local support service staff to clients when their packages were being set up was widely reported to have been good but this was not universal.
17. Officials and clients commented upon the improved working relationships between the different funders, and many SDS clients' experiences of getting their funding issues resolved reflected this improvement. Nevertheless clients were equally aware of continuing differences in the rules governing the different funds.
18. Most clients were clear about how their level of funding had been determined but fewer were confident that they understood fully what they could spend it on. Many clients commented upon the absence of clear and readily available guidance on how funds could be used and of the need for them to be pro active in seeking out assistance from their local support service.
19. A requirement by some LAs to operate a separate bank account for some funds imposed an additional administrative burden upon clients and made it harder for them to use their funds flexibly. By contrast, individuals using a single bank account found this both empowering and much simpler to operate. Where a lighter touch approach to auditing was applied it also allowed greater focus on delivery of flexible support outcomes.
20. The majority of clients employed PAs rather than commissioning agency services, although a number used both. Many had used agency services in the past but had encountered a number of problems, prime amongst which was being unable to be cared for by a consistent team of carers.
21. Being an employer was the biggest challenge facing all SDS clients and, whilst clients were happy with the support they received from their local service, employing PAs remained a difficult task even after many years.
22. A number of other perspectives provide insights into the issues and impacts affecting particular users. These are considered separately and include children as SDS clients, informal carers, BME (black and minority ethnic) considerations, the health contribution to SDS, the education contribution to SDS, clients with mental health conditions and clients with a learning disability.
Key findings and conclusions
23. The overwhelming majority of SDS clients and their informal carers had very positive experiences of using their SDS funding to 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.
24. There is significant evidence from this study that the existence of an effective support service is essential to the continued 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 level of demand.
25. The key enablers to facilitating growth at a strategic level are effective local authority leadership, a dedicated SDS team providing knowledgeable and skilled oversight and support to SDS clients and systems that promote consistent practices and procedures in the administration of funding rules, which concentrate upon the objective of flexible personalised care rather than the detailed audit of returns. At a more practical level, the extent of social work training on SDS was widely recognised as a significant factor in the take up of SDS.
26. Current work to release resources for service change from building based services and block contracts is progressing. This, combined where appropriate with an invest to save approach, offers prospects to review service models and priorities and develop more personalised funding approaches.
27. SDS clients in work were particularly affected by the application of LA eligibility criteria that did not prioritise preventative or anticipatory care.
28. LA administered funds are managed in a joined up way but separate rules and arrangements for these and other funds mean that, overall, arrangements for paying and administering multiple funded packages are not streamlined and therefore do not deliver the advantages for clients, regarding accessibility and ease of management, that they might be expected to do.
29. Requiring SDS clients with multiple funded packages to put their various funds into separate bank accounts makes it harder for them to use their funds in a joined up way and adds an additional administrative burden. Also, the lack of transparency in local arrangements governing how SDS funds can be used causes uncertainty for clients as to what they can pay for. This was an important barrier for less confident clients, making it harder for them to use their funds to best meet their needs.
30. Managing a SDS package is a demanding but ultimately worth while task. Enhanced peer support and further assistance for clients in areas such as recruitment and training would make a positive difference.
31. This review demonstrates that SDS can and does provide benefits for clients. If the issues outlined in the report are addressed, access to SDS could be further improved and so benefit a greater number of people. A full list of conclusions are contained in Chapter 7 of the report.
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