Independent information and support services funded by the Scottish Government: review findings

7. Reflections on Direct Client Support Work

This chapter looks at:

• The numbers and types of people who have been accessing direct support.
• Clients’ views of the quality of the service they have received from SIRD projects and the impact it has had on their lives.

• What the review findings suggest is good support and the added value which the SIRD projects have delivered.

Key Findings

Although small number of projects reported meeting their targets for working with people looking for direct client support, a number of projects have fallen significantly short of theirs. A small number of the projects concluded that the focus of their work may simply have been premature given progress on embedding self-directed support as the norm in social care. Projects working with people experiencing homelessness or community justice service clients were most likely to be of this view.

When faced with lower than anticipated numbers of people looking for budget-related support, many projects have looked for ways to use the SIRD funding constructively as part of a wider package of work around choice and control in social care.

Almost without exception, service users were very positive about the quality of support received. When asked how they felt about the information and support they had received, more than 8 out of 10 survey respondents said it had made an enormous or big difference. Service users highlighted the positive impact that SID project support has had on their health and wellbeing - a central theme was the profound and life-enhancing impact.

Support from a SIRD project had helped users to access or make the most of social care. Helping unlock the potential of choice and control had an enormous impact for some. Project users who had accessed a social care budget whilst working with a SIRD project felt that this positive outcome might not or would not have been achieved without the support received.

For those engaged in exercising choice and control in social care, support at any stage can make a difference; for some, having someone to walk alongside them for the entirety of their journey has been critical.

For many, there were aspects of the self-directed support process where third sector providers offer very real additional value. This was primarily in relation to supporting people who choose Option 1 or 4 and helping people access community-based opportunities and support. However, there was varied opinion around who was best placed to provide information and advice in relation to choices about, and control of, a social care budget.

Single local authority-focused projects were often those involved in the delivery of the ‘end-to-end’ support that was much valued by clients. Where this approach has been working well, projects were usually a well-established member of a network of statutory and third sector agencies with a history of working together. Projects working across a small number of local authorities across Scotland tended to face practical challenges associated with varied practice and eligibility criteria and the need to build and maintain working relationships across local authorities.

Client-group focused services sought to ensure that their specialist knowledge and skills meant clients received the right type of information and were supported to meet their particular needs. Such projects have experienced similar challenges to more generalist services working regionally. Overall, however, they have tended to report that the approach has worked well; the feedback from their clients certainly suggests this to be the case.

The SIRD funding stream has a focus on building self-directed support-related capacity in the independent information and support sector. The relationship between project independence and the source of their funding was highlighted by a number of projects. Some had concerns about receiving funding from an organisation which they might need to challenge; other projects had no such concerns.

Numbers and types of people accessing direct client support

A small number of projects have reported hitting their targets for working with people looking for direct, independent support. Where numbers have been high, and they report working at close to, or at, capacity, projects were often the established providers of information and advice in their area or for that client group. This sometimes meant that they already had an existing client group with social care budgets and have continued to work with them through a transition to using self-directed support options. These projects also sometimes reported very well-established working arrangements, including referral arrangements, with their local authority. They have tended to be working with carers, older people or people with learning difficulties.

However, as noted earlier, many projects have found the environment within which they have been delivering services very different to that which they had anticipated. This may be one of the reasons why a number of projects have fallen significantly short of the targets set out in their original application in terms of the numbers of people they expected to provide with direct client support. More specifically:

• In some cases, the shortfall was put down to the varied pace of progress on embedding self-directed support more generally in the geographic area(s) covered by the project. This was sometimes across the board but in other instances related to particular client groups.

• A number of projects highlighted that they had received fewer formal referrals than anticipated and that referral arrangements were either not used as much as they had hoped or were not in place. This applied particularly in relation to referrals from social work.

A small number have concluded that the focus of their work - and in particular the client group focus of their work - may simply have been premature given national progress on implementation. Projects which were focusing on people experiencing homelessness or on community justice service clients were amongst those taking this view; there were associated reports of finding it very difficult to engage homelessness or community justice services around choice and control. ^[13] They had concerns that, in addition to barriers resulting from more general cutbacks in services, they were also coming up against a working culture which had not fully bought into people making their own choices; projects sometimes felt this was connected to a perception that certain people or groups would waste their budget or that the risks associated with giving someone choice and control were too great.

This reluctance to ‘risk’ the misuse of a budget was also one which some projects reported as being common to mental health services and some services working with people on the autistic spectrum. Projects often did note, however, that this reluctance was often associated with concerns about the overall wellbeing of the client. Nevertheless, some projects have been working with people with mental health issues to consider which social care budget option they would like to choose. Echoing a common theme running through this research, projects tended to report that being able to have an open and constructive dialogue with social work tends to depend on the individual social worker in charge of the case.

When faced with lower than anticipated numbers being referred for social care budget-related support, many projects have looked for ways of using the SIRD resources constructively and as part of a wider package of work around supporting self-directed support implementation. Examples of this type of work include:

• Working with those experiencing homelessness or clients of community justice services around personal development work, including work on identifying personal outcomes. Three projects sometimes used other non- SIRD funding to give individuals access to small budgets which could be used to help them work towards meeting their outcomes.
• Exploring the travel-related issues young disabled people face and looking to develop innovative approaches around online peer support which could help young people overcome the barriers they face.

Although questions might be asked about whether some of this is the type of work which the SIRD Fund was designed to support, it has often been valuable and has offered the opportunity for broader learning; for example, projects suggested some of the work they have been doing could hold lessons for those looking to take forward Housing First approaches to tackling homelessness, or for those managing the Scottish Welfare Fund. Projects also noted that taking forward other useful lessons and activity could help build and sustain the working relationships needed to facilitate work in the future.

Clients’ views on quality and impact

Overall views on quality and impact

Almost without exception, clients were very positive about the quality of support that they received from projects. Elements which they particularly appreciated included project staff having:

• Technical knowledge relating to social care practice, policy and legislation.
• Empathy with the stresses and pressures they were under.
• Commitment and devotion of time and energy to supporting them, with a number of clients referring to project staff going ‘above and beyond’ for them or suggesting that ‘nothing was too much bother’.
• Responsiveness when they raised concerns or issues.
• Perceptiveness, to the point of being able to anticipate questions and issues they would raise.

• Being ‘on their side’, with one client describing project staff as being ‘100% us and not them’.

This very positive feedback was echoed through the client survey results. As set out in Figure 6, when asked how they felt about the information and support they had received, more than 8 out of 10 survey respondents said it had made an enormous or big difference. Although there were response options for the project having ‘not made much of a difference’ or ‘no difference at all’, no respondents selected either of these options.

Figure 6: Difference made by the SIRD project

As noted earlier, it does need to be remembered that the people involved in this research had needed or wanted support other than that provided by their social worker and that there may be many others who would not feel that need. There may well be others who might have appreciated or benefited from support but were not willing or did not feel able to go in search of that support.

Bearing in mind that this is the perspective of only a proportion of those accessing a social care budget, SIRD project service users often contrasted the service they had received from their SIRD project with that they had received from social work. Overall, project staff were seen as:

• Having more time than social workers to work with clients. Supported people or carers felt this enabled them to develop a real understanding of their situation and that this, along with the working relationship formed, helped achieve better outcomes. They were also sometimes very understanding that their social worker might like to give them more time but that other work pressures meant this was not possible.

• Being open and informative around the options someone might have.
• Not looking to encourage someone to go down any particular route but wanting to support the client in making their own decisions.

Impact on wellbeing and health

The feedback from clients highlighted the impact that the support from projects has had on the health and wellbeing of those involved. The positive psychological impact projects have had often appeared to be very closely linked to clients feeling valued as individuals and supported emotionally as well as practically. In fact, some clients suggested that this emotional support was as, if not more, important than the range of practical assistance they had received. That emotional support might be provided through:

• Services being open, available and accessible, with clients able to drop in, pick up the phone or make contact online at any time.
• Having a named person within the project who leads on providing support to that client. This approach, and the continuity of service it fosters, allows staff to develop a real understanding of the challenges someone is facing, and to tailor the support offered accordingly. As one client expressed it, the thing they most valued about their SIRD project was ‘Them understanding ME!’ It was clear that for some their usual experience was not necessarily one of feeling valued or listened to.

• Being present alongside clients at stages they might find difficult or stressful, such as assessments or reviews. Clients described projects’ services as being like a ‘security blanket’, as holding their hand all the way through the process and as providing ‘total reassurance’.

The potentially transformative power of giving people choice and control was highlighted in Chapter 3. It is important to recognise here that many felt the support their SIRD projects provided had an equivalently powerful and positive impact. Examples included clients saying that the support had been lifesaving and ‘literally a lifeline’. A carer described her transformation from being seriously depressed, having lost her sense of self, having resigned from jobs, and feeling exhausted and as if she could not go on, to someone who was in a better place, was coping much better and who could continue in her caring role. Another carer highlighted that a project’s referral to a counselling service had helped her turn a desperate situation round.

These were just a few of the very many examples which client interviewees kindly shared with the study team. The central theme of all their stories was that the support a SIRD project gave has had a profound and life-enhancing impact.

Impact of having choice and taking control

The service user feedback in interviews and survey responses also explored the extent to which people felt that support from a SIRD project had helped them to access or make the most of their social care budget. In particular, helping unlock the potential of making choices and having control had had an enormous impact for some people.

For example, those who had graduated from personal development courses were clear about what they saw as a transformative impact on their ability to make the process work for them or their family member. These courses, and other personal development work that projects have been doing, had often given people greater clarity about their or their family member’s potential, and about how they could use a social care budget and other support services or opportunities to make the best life possible for themselves. People also reported having raised confidence and self-esteem.

Other benefits which these clients reported included:

• Having a level of understanding of self-directed support legislation and practice which allowed them to engage with professionals in a different way and based on an equivalent (or in some cases they felt greater) level of understanding. This included being able to challenge their social worker if necessary.
• Having an understanding of the language and jargon which might be used, along with the terminology and presentation of a social care budget.

• Developing strategies for dealing with difficult situations without being confrontational; in the words of one client, ‘how to become a leader not a fighter’.

More generally, many clients who had accessed a social care budget whilst working with a SIRD project felt that this positive outcome might not or would not have been achieved without the support they had received. For some this was a matter of the project helping them to navigate a complex system with which they were unfamiliar and something that they did not believe they would have been able to manage themselves.

In particular, clients highlighted the role of their project in unblocking progress, or in dealing with situations that they had found difficult. This was often associated with getting the assessment carried out and then being told of the outcome. Other areas in which clients reported that projects had a particular impact around accessing a social care budget and then making decisions about that budget included:

• Helping them think through the outcomes they would like to achieve and how they could use their budget to help meet those outcomes.
• Suggesting other projects or organisations which could assist, such as a payroll service, or helping with practical tasks, such as setting up a bank account.

• Helping with other problems the client was facing which, although not social care-related, would undermine their ability to achieve their outcomes. A housing problem was given as an example.

Very much in line with the earlier observations around health and wellbeing, being and feeling supported in working through these challenges sometimes enabled people to persist when they would otherwise have walked away and to have found the process less intimidating and stressful than they would otherwise have done.

The impact of engagement with a SIRD project was slightly less clear cut for some. These clients were still very grateful for the support they had received to deal with the social care system, but felt that in its absence they would still have been able to get a package that suited them. However, they believed that this might have taken longer and been more stressful.

It was not always clear why a SIRD project had made a life changing difference for some whilst for others had (only) been a very much valued help and resource.

Social capital does not seem to provide a robust explanation. Some service users highlighted that their own social capital had not prevented them from finding the social care process extremely difficult to navigate. That social capital was described by some in terms of their general confidence, whilst others referred to their own professional background in an area related to social care. These clients had been surprised at how much they had struggled, even with those skills and knowledge.

Overall, if anything really distinguishes those for whom support was vital and life changing from those for whom it was important and very much valued, it may be the complexity of the challenges faced and, in particular, how long someone feels they have been ‘battling’ to get the help they need.

Reflections on good support and project additionality

What matters in support

Projects’ face-to-face work provides emotional and practical support that their clients had not found forthcoming elsewhere. Project staff have the ability, and arguably the time, to establish a working relationship with service users, to be available to deal with problems or simply have the time to listen that social workers may not. It also appears that project staff may sometimes become more versed in the detail of the mechanics of the self-directed support process and options than their social work counterparts.

The result is that project staff, with knowledge of clients’ situations, backed by an in-depth understanding of social care, often become the first port of call for clients when they wish to talk about their situation or to deal with particular problems. Practical support, accessibility and empathy are at the heart of the approach many SIRD projects have taken.

It is of course the case that, irrespective of the approach an organisation takes, the quality of the information, advice and support they offer is important. Many of the projects delivering face-to-face work also appear to have benefited from the recruitment of experienced, high quality staff at both frontline and management level. It was striking that some projects have staff members who are highly experienced former social workers; this not only means they have skills around assessing clients’ needs but also means they have a real understanding of, and empathy with, the challenges faced by their former social work colleagues. This is not to suggest that these staff will not do everything they can to support their clients, but it does mean they have an understanding of the pressures faced by those they may need to challenge.

End-to-end provision

This review has found that, for those engaged in directing their own social care, support at any stage can make a difference; however, for some people, having someone to walk alongside them for the entirety of their journey, end-to-end, has been critical. As discussed in Chapter 6, although some projects have focused on delivering specific elements of an information and support service, others have been looking to deliver end-to-end, or virtually end-to-end, support.

There have been a range of reasons why projects have not offered end-to-end support. This was sometimes because they had set the project up to meet a specific ‘gap’ in the provision available in their area, for example in relation to advocacy. They may also have been aware of, or have existing joint working relationships, with other organisations which were providing information and support in their area and have sometimes sought to avoid replicating work being done by others. On a very pragmatic level, some projects noted simply that they were not funded to provide end-to-end support although they would consider expanding the range of support they provided if the necessary resources were available.

Focus of support needed

As discussed above, clients who had received end-to-end service valued the whole package of support they had received. Projects that provided such a service also tended to see each component as being required and as benefitting from being delivered by an independent, third sector organisation.

Irrespective of views on other elements of the service, there was a very broad consensus, including among local authorities and key stakeholders, around two elements where SIRD projects, or other third sector providers, offer very real additional value. This was primarily in relation to:

• Supporting people who had taken Option 1 or 4 to set up and possibly manage their care package and their social care budget spend. Many interviewees suggested that this is not work that statutory services are well equipped to deliver and nor are they resourced to do so.
• Helping people without a social care budget to consider the life outcomes they would like to achieve and then, if necessary, supporting them to access community-based opportunities and resources. Also helping those with a social care budget to access other community-based options.

Beyond this broad consensus, there was a range of opinion around who was best placed to provide information and advice in relation to choices about, and control of, a social care budget. Some were clear that the local authority is best placed to: inform someone about their options, support them through the assessment process, and support them to make a decision about which self-directed support option they wished to take.

Those of this view tended to suggest that referrals to an independent information and support provider might be appropriate if there were particular circumstances which were making it more difficult for social work to be sure that someone was fully informed and was receiving the support they needed. An example might be if there were language or cultural barriers which need to be worked through. There were mixed views as to whether the complexity of a case were grounds for referral, with some of the view that social workers are very much best placed to work with clients in these circumstances. Others felt that the significant time and empathetic approach required might mean that a third sector agency with the necessary knowledge and skills would be better placed to provide support.

From the project perspective, the majority view was all people applying for a social care budget should be referred, or at least signposted in the direction of, independent information and support. As noted earlier, they also thought that this should be done at the earliest opportunity. However, many also highlighted that this approach would have resource implications and that neither they nor the third sector as a whole would be in a position to support such an approach unless funded to do so.

The impact of working locally, regionally or nationally

The SIRD projects are diverse in terms of their geographical coverage, the range of services they provide, and the client base.

Single local authority-focused projects were often those involved in the delivery of the end-to-end support much valued by clients. Where this approach looks to have been working well, and has been easiest to get up and running, projects were usually a well-established member of a network of statutory and third sector agencies which have a history of working together and which may have formal referral arrangements in place. If formal referral arrangements were not in place, informal referral and signposting between agencies – or at least between members of staff within those agencies - may already have been common practice. Unsurprisingly, where there were already good and positive working relationships between local partners these have tended to continue. Where these have needed to be built from scratch, and particularly where this remains a work in progress, projects may have struggled.

In terms of delivering information and support around community-based opportunities and resources (both to those with or without a social care budget), locally-focused projects appear very well placed. They tend to know their communities well and staff may very likely be members of those communities.

Projects working at a regional level, or across a number of local authorities, across Scotland tended to face different challenges. Most obviously, they have been looking to make connections and deliver a high-quality service within a number of different operating contexts. On a very practical level, the eligibility criteria for a social care budget will vary from local authority to local authority. Equally, relationships need to be built and managed within each local authority and quite possibly within a number of different services within each local authority. This has sometimes been possible but is described as extremely resource intensive.

Along with a small number of the projects working locally or regionally, all of the projects working nationally had a client-group focus. Although not all were involved in the direct provision of support, those that were sought to ensure that their specialist knowledge and skills meant clients received the right type of information and were supported in a way which met their particular needs. Projects taking this approach have experienced similar challenges to more generalist services working regionally. Overall, however, they tended to report that the approach has worked well; the feedback from service users certainly suggests this to be the case. In many ways that success has been built on having both an established reputation as a client group specialist and an often-substantial pool of existing clients who could benefit from receiving information and support.

The value of independence

The SIRD Fund has a focus on building self-directed support-related capacity in the independent information and support sector. The nature and importance of that independence was explored with the projects, local authorities and other key stakeholders.

At its most basic, some projects felt that their independence, and particularly having no formal reporting arrangements with social work services, was essential to their value. They felt it gave them the ability to challenge social workers’ decisions and practice where necessary and was one of the key reasons why clients felt able to trust the service they provided. Those clients who raised this issue supported this view.

The relationship between project independence and the source of their funding was highlighted by a number of projects. This was often connected with ongoing funding arrangements and any plans they had for after the end of the current SIRD funding round. Projects tended to take one of two positions, these being that:

• Their independence would be compromised if they were reliant on future funding from their local Health and Social Care Partnership. Their specific concern was that they would be compromised when challenging the policy or practice of a key funder. There were also concerns that making such challenges could jeopardise future funding.
• Health and Social Care Partnerships are responsible for ensuring that there is appropriate provision of independent information and advice in their area. They should be and are capable of recognising and respecting the need for external challenge and receiving funding from the Partnership would not affect the independence of the provider. Some projects also noted that this approach is already established practice across other policy areas.

Both positions may be valid, but it is worth noting that the position taken was sometimes connected with the project’s expectation as to whether the Health and Social Care Partnership was likely to make funding available, as well as whether they were the most appropriate source of any funding.

It should also be noted that some projects had no concerns about receiving funding from their local Health and Social Care Partnership and did not feel that such funding would in any way compromise their independence or cause them to step away from making a challenge if necessary. The local authority interviewees who commented on this issue also did not see Health and Social Care Partnership funding as in any way compromising the independence of an information and support provider in the third sector. Some also noted that this type of funding approach is common across a wide range of commissioned services.

Finally, on the issue of independence, a small number of the SIRD projects are part of wider organisations which provide other social care budget-related services, and most obviously are providers of either care or payroll services. Although a small number of others felt this created a conflict of interest, the projects involved were clear that they had ‘ring-fenced’ the information and support element of their service and that its independence was in no way compromised. Some even reported challenging decisions and practice in other parts of their organisation. Service users of these projects did not raise any concerns nor was there any other research evidence to suggest this has created any problems.