1 EXECUTIVE SUMMARY
1.1 This is a report on the published literature on the barriers and facilitators of self- directed support. It 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.
1.2 This literature review asked what the barriers are to self-directed support and what helps it work (the facilitators) (how the literature was reviewed is described at the end of this summary). By literature we mean research that has been carried out on self-directed support to find out what works and for whom. Research is not extensive and so we also looked at other documents, such as case studies, descriptions and commentaries.
1.3 Our definition of self-directed support was very wide; this is because it means different things to different people. We used it as an umbrella term to describe a system of publicly funded social care and support that may involve other government money. Being publicly funded by local authorities and other parts of government means that people have to be eligible for the funding and that in some instances they have to pay part or all of the cost, if their income and savings are assessed as being enough to make this co-payment. Under the system of self-directed support, people are asked to think about what matters to them. They can choose to spend the sum allocated to them in a way that best meets their needs and is under their control. In many ways it continues a system that promotes choice and control that has been running for many years; Direct Payments. In England the new system is often called Personal Budgets, and sometimes Individual Budgets, but this may apply only to local authority funded social care. In Scotland a range of government funds are involved in this development.
1.4 Overall the literature reveals:
- Much agreement about the barriers to the development of self-directed support.; and;
- Many suggestions and experiences about ways in which self-directed support may be facilitated.
1.5 However, much of the research relates to Direct Payments and there is very little evidence about other forms of deployment (the ways in which people can choose to manage their money and the ways in which various funds work together).
1.6 Not surprisingly, we found that barriers and facilitators are sometimes linked - for example, lack of information is a barrier and good or accessible information appears to be a facilitator. Similarly, lack of legal clarity is a barrier, while clarity appears to assist users, carers and practitioners alike. But other subjects are not so simple. We found that there were few easy conclusions to draw about the management of risk and cost-effectiveness. There are not simple trade-offs in these areas. Indeed, many studies tell us little about risks and fail to provide details of costs and outcomes or results.
1.7 We have very little evidence about the best ways to monitor self directed support but there are suggestions that 'light touch' monitoring may open up risks at a number of levels as well as helping to reduce burdens of administration. These are matters for wider public debate in Scotland and beyond, not least when money is tight. One limit of existing research for today's social care is that it took place before the current recession.
1.8 There is wide agreement that reduced bureaucracy and less 'red-tape' are welcome (unless there are concerns about abuse and exploitation) but how these actually work is only touched upon by a few studies. Many studies and commentaries find it hard to decide what is over- or under-protection and few expand on links with adult safeguarding.
1.9 Leadership may help with promoting changes in practice and in attitudes to self-directed support (as it does in any change); however, most commentaries and experiences focus on situations where self directed support is an innovation rather than mainstream activity. We do not have much evidence about the ways to sustain changes, but many commentators note the importance of service users and carers supporting each other. Training for almost everyone is seen as valuable but there is not too much detail on what skills are needed and how they can be developed; sometimes training may just describe giving information.
1.10 Finally, the availability of transitional funding (temporary money to help start up a new system while still running the old system) is a helpful spur for innovation but we generally have only the views of those people and organisations that are likely to gain from this. There is little evidence about the long-term effectiveness of self-directed support and its impact on other areas, parts of the system, or other groups of users that might have similarly welcomed any or extra resources. All these comments support the importance of a system wide approach to the rollout of self-directed support and understanding of its implications for Scottish citizens.
1.11 The research suggests that many of the barriers to the take up and use of self-directed support are experienced by service users, carers, 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 self-directed support. Some of the barriers may be resolved by government guidance which may reduce confusion and uncertainty.
1.12 Within the research the following specific barriers were identified:
System wide levels
- Self-directed support is publicised insufficiently.
- If the local third sector is not actively involved then practical and peer support for individuals may be insufficient.
- It is not always clear how self-directed support works with other parts of welfare or public services.
- It's not easy to decide what are health or social care responsibilities and how self-directed support systems fit with other provision.
- Processes and procedures can seem under-developed leading to uncertainty.
Practice and practitioner levels
- Staff are concerned about their jobs and roles in the light of self-directed support.
- Some fear self-directed support may worsen working conditions for social care staff - especially care workers or families.
- They are concerned that self-directed support may be more expensive than block contracts (buying social care in bulk so that unit costs are less).
Service user and carer levels
- Some feel the administrative burden of self-directed support is too great.
- Users (or carers) do not always want the responsibility of managing their own money/services.
- Employment of Personal Assistants ( PAs) is not always simple.
- Employment of family members may not be easy or best.
- Funding allocation systems and the rules on expenditure are not always clear to users and carers
Legal and procedural frameworks
- These may not be clear and lead to worries about accountability and blame
- Rules vary and change, leading to confusion
Management and leadership levels
- These may not be sufficiently expert or experienced; they may have other demands on their time.
- What happens in a pilot may not be sustainable.
What helps Self-Directed Support?
1.13 The following facilitators were identified from the research:
System wide levels
- Agreements over policy help clarify what is permitted and what the changes are intended to bring about.
- Realistic action plans help to translate aspirations into working practices.
- Clear implementation procedures provide assurances to staff about their employers' aims.
- Training and skills development are needed so that practitioners can be better equipped to work with the new systems and to explain them to others.
- Staff too can benefit from sharing experiences, problems solving and information in networks.
User and carer levels
- Information on self-directed support needs to be accessible and widely available.
- Comprehensive support for users and carers can help when they are thinking about change and what might be needed over time.
- Social networks among users can help in sharing ideas and experiences.
- Being able to employ family members is welcome by some people.
- Brokers and advocates who are independent of the local authority can help with the details and also in challenging the local authority.
- Plans to deal with possible emergencies are necessary.
Management and Leadership
- Self-directed support champions or other inspiring people can help with start up and with addressing later problems.
- A steering group helps spread the load and enables messages about good practice and knowledge to reach everyone necessary.
How this study was carried out
1.14 This report is based on a systematic search of the research literature examining self-directed support in social care and factors that act as barriers or facilitators to the up-take and development of self-directed support in the United Kingdom ( UK). We broadened the scope of this study beyond self-directed support to include research in the area of personalisation (the term often used in England). Several methods helped identify studies and contextual material, including the searching of key bibliographic databases, in August 2009 and updated in August 2010. The search was primarily conducted using online research databases (Web of Knowledge, PubMed, Social Care Online). Additional searches were also carried out using relevant government (such as the Scottish Government and Department of Health) and third sector websites (such as In Control) for literature that may not be available on research databases.
1.15 The next stage of the research is investigating what is happening in the three local sites in Scotland. This involves collecting data about take-up of self-directed support and other local authority information. We are interviewing people using self-directed support and their carers, and working with managers and frontline staff in the local areas.