Scottish Government

5 Individual experiences of self-directed support

Introduction

5.1 The evaluation collected qualitative data during Stage 2 about individual experiences enabling us to look at how new SDS systems were impacting on people's direct experience of social care. Thirty case study individuals were identified from those accessing SDS across the 3 sites (10 from each). For each case study, where possible, interviews were carried out with the service user, his/her carers/families, and a professional who had been involved in the SDS assessment ( e.g. a care manager, day centre manager, social care officer, SDS team member). Interviews were carried out between October 2010 and February 2011. Their views of the SDS process are brought together in this chapter. Participants were interviewed about their experiences and opinions of the new processes and SDS options accessed via the test site. All quotations in this chapter are anonymised, and any names used are pseudonyms. To protect confidentiality, the specifics of sites have only been reported where it seemed important to differentiate approaches or experiences.

5.2 Although it had been our intention to conduct separate service user and carer interviews, in practice the vast majority of interviews across all the sites were carried out jointly with service users and a carer/s (usually a family member and, occasionally, a support worker). This was either the individual's preference, because the person had limited verbal communication or there were other problems with the interview, such as ability to understand what was involved. Only one service user in each of the test sites was interviewed separately from either their carers or support workers, and although most service users were happy to be present at the interview, one person in Highland asked that we interview his carer instead of him. In addition, during most joint interviews with people with learning disabilities the family member/carer took a leading role in the interview. Where possible, their perceptions were cross checked with the service user present who usually concurred with the views stated.

5.3 Our initial assumption in planning the case studies was that care managers would be involved in assessment; this was not always borne out. In Dumfries & Galloway, and to a lesser extent in Glasgow, it was members of the SDS/personalisation team who led the assessment process whilst providing support to other professionals ( e.g. care managers, Occupational Therapists, day centre staff, etc). For the Glasgow test site sample, day centre staff, social care workers, and staff from provider organisations as well as care managers were identified as the assessors.

Profile of Individuals

5.4 As far as possible within the selected sample of individuals, we aimed for variation in terms of characteristics such as gender, client group, age, ethnicity, and so on, and in terms of SDS options chosen. It did not prove possible to select a sample in Dumfries & Galloway as at the time of arranging interviews (October 2010), only 10 individuals in total had accessed SDS packages, and so all 10 were invited and agreed to be interviewed. In addition, the intention had also been to interview individuals at least 3 months after their SDS support package had been in place. Again in Dumfries & Galloway most had only recently had SDS packages approved, or were awaiting the panel's decision. Therefore, in this site we were only able to report on early experiences of the assessment and decision making processes, and less about individuals' experience of actually setting up or receiving SDS support.

5.5 More men than women were interviewed: in both Dumfries & Galloway and Glasgow there were 6 men and 4 women interviewed, whereas 7 men and 3 women were interviewed in Highland. The ethnicity of all 30 individuals was white British or white Scottish. Overall, this reflected characteristics of client who accessed SDS across the sites (as identified in the cohort forms). Table 5.1 summarises the range of client groups included in the case study sample:

Table 5.1: Number of case study individuals in each site by client group type

5.6 A more complex picture regarding individuals' needs emerges than was evident from the cohort forms as reported in the previous chapter: for instance, 8 of those interviewed had multiple and complex disabilities, including autism and physical disabilities and/or learning disability compared to only one person being recorded as such in the cohort form.

5.7 The case studies are not necessarily reflective of the full range of SDS options that were accessed through the test sites as detailed in the previous chapter due to the timing of interviews and the particular stage of test site development. However, during the interviews it became apparent that there was a greater degree of variation in SDS options than had been evident from collecting information through monitoring forms. All 10 case studies in Dumfries & Galloway involved employing support workers/ PAs, and some also included existing local authority and other managed services. In Highland all 10 were receiving DPs (either one-off or on-going), although some also accessed existing services or a DP through the 'traditional route' alongside a cash payment through SDS, and thus had mixed packages. Most packages were focused on providing support to young disabled people in transition and were of varying levels of complexity. In Glasgow there was yet more variation: 5 people had a DP, 1 had an ISF, and 4 had mixed packages involving DPs and local authority provided services. In most cases it was hard to ascertain whether they had an identified IB as most interviewees were not clear what this meant.

Provision of Information

5.8 Most service users and their families in Dumfries & Galloway reported a lack of information about the test site. This was in part because the test site approach did not encourage the production of standardised information. This is a more general point that applies across all sites. However, in relation to setting up the support, there were at least 2 examples in Dumfries & Galloway where the personalisation panel had apparently agreed the package but there had been some time before written confirmation had been sent out. In other cases, when initial payments were late due to a hiccup in setting up new systems, service users or carers had been forced to start the support package using their own money. As a result, some reported not being able to pay a PA in the first month or so of their employment. There were a couple of similar cases in Glasgow.

5.9 There was some difference of opinion among case study individuals from Glasgow about whether the level of information provided was sufficient for service users or carers to make informed decisions on SDS options. While about half felt they had sufficient information and it was explained well (some mentioning GCIL's input), the other half felt that information about SDS was not adequate. Perceived problems included: not being given adequate information about the range of options available through SDS; information being confusing especially the language used; lack of clarity about the difference between DPs, SDS, and IBs; and, as in the other test sites, a lack of clarity about how SDS money could be spent. A couple of individuals reported that they did not know what they were getting or what it was for. In addition, one person commented that they were getting just the same as before but it was now given a different name.

5.10 Many carers in Highland felt that they had had sufficient information about SDS ( DPs) to make an informed decision, but some pointed out that they had been at an advantage as they themselves came from backgrounds in health and/or social care, or they were well aware of what was involved because of their experience of receiving DPs. This point was sometimes raised in the other sites. However, there was an additional sense in Highland that information about SDS was really information about DPs. Some felt they would have liked more information on available service options and not just be left to find this out for themselves. Others highlighted insufficient information being provided about the responsibilities involved in being an employer and on employment law. This information need was responded to in the Highland test site by investing part of the test site funding in bringing SPAEN into the area to provide information and support to those taking the DP option. A communication breakdown about whether funding for support would continue post test site caused some anxiety among service users and their families.

Experiences of SDS Assessment

5.11 Overall, comments from service users and carers indicated high levels of satisfaction with their involvement in the assessment processes they experienced across all sites. Most said they had had an opportunity to say what they wanted or that the needs of the person they cared for had been considered. For some, the SDS process felt more thorough and in-depth than their previous experience of applying for DPs. The assessment processes took varying lengths of time, depending on circumstances. Several service users or carers mentioned there had been just one or 2 visits from an assessor culminating in a written care plan they had then agreed to, whereas others had been engaged in a far lengthier process. For example, the care manager of a young man with long-term health problems, as well as physical and learning disabilities paid the family several visits and the whole process had taken about 5 to 6 months. As the care manager observed:

"It's a process people have to engage in. They have to understand that and that takes some time to explain...It took us quite a long while to actually get Tom's plan written or to get Tom to write the plan..."
(Care manager) (name of user anonymised)

5.12 Nonetheless, a very small minority of people felt that assessors did not consult with all those who knew the person well. In addition, another small minority in Dumfries & Galloway and Glasgow test sites felt disempowered by the decision that panels made not to award all elements of the self-assessment plan they had produced themselves. These individuals subsequently reported that self-assessment had encouraged them to have 'false' expectations of what was possible. For example, a disabled man in his 70s said:

"They (social workers) took everything into consideration that we were telling them and they wrote it down and then they checked it against what we had written down, the form we had filled in, and they seemed quite in agreement with what we needed and what we had self-assessed and then as I say it went away and sat in front of this Board (panel) for a year and when we got word back, everything had been cut, we only needed so many hours and ... in the morning and so many hours at night for getting ready for bed and whatever..."

5.13 In 2 case studies in Dumfries & Galloway service users reported being able to engage directly with the decision-making panel after completing the self-assessment process. In both these examples this experience was highlighted positively. For example, a young disabled woman had developed her own presentation, which she made to the panel with support from her parents. They commented positively:

"You do your pitch; it's a bit like Dragon's Den! You know, 'this is what I'd like to do', and they decide if they're going to give you the money."

5.14 In the other example, a young man with learning disabilities had also presented to the panel with support from his family. A relative commented:

"Initially we worked it all out...and when we presented it at the Board, quite surprisingly they turned round and asked if it was enough support, that we'd applied for enough and we were told basically what the rate would be and yes we're very, very pleased with the outcome."

5.15 It is worth noting that in both these examples the package they proposed had been subsequently agreed, so feedback may have differed if this had not have been the outcome.

5.16 In all 3 test sites there appeared to be at least 2 assessment processes occurring in parallel: self-assessment processes developed by the SDS test sites and single shared assessments ( SSA). This was especially commented upon by service users and care managers in Highland. In one situation, assessment was said to have begun with the SSA and this was used to positively build up the outcomes statement for SDS. Other care managers in Highland resented the duplication of paperwork and the bureaucracy surrounding assessment, even though the self-assessment tool developed for the test site was "ideal if the time is available". Another Highland care manager however was less critical, observing that working with both SSA and self-assessment forms provided "more of an overview" which she said was beneficial. A Glasgow care manager felt similarly about the dual approach.

5.17 Although some form of 'self-assessment' was always completed, how meaningful a term self-assessment was to describe the process was thrown into question by the finding that the great majority of SDS assessments were completed by professionals, and the main contributors were carers/relatives rather than service users:

"...it was out of his hands and he just kind of agreed to it but...I don't think he made a decision really himself but she (autism nurse) certainly explained it to him what's going to happen...I think decision making is quite hard for him...he's not quite sure exactly what he needs at times."

5.18 Another social worker from a different test site reflected:

"There are huge issues regarding 'self' assessment for people with learning disabilities and complex needs...in reality the main input is by the carer and the family members...it is not a fully self-directed assessment although every step possible is taken to ensure that their needs and wants are identified and considered."

5.19 With this in mind it is worth noting that, while most families felt that service users had had sufficient input into the assessment process, this was usually because the families took a lead in the process (especially in the case studies of service users with severe learning disabilities). There appeared to be little evidence of innovation in relation to supported decision-making mechanisms for service users with less capacity to support self-assessment.

5.20 One service user from Dumfries & Galloway had felt sufficiently involved in the assessment but the process had been led by someone from the personalisation team and a care manager resulting in the service user lacking a sense of ownership of the plan - "most of what's on that sheet I didnae suggest it, it was them (the assessors) that wrote it". The care manager in this situation, who had not received training about new assessment processes, was unsure about the SDS paperwork and how to put a good case together for the panel. Despite the care manager suggesting what should be in the care package, it is worth noting that the service user reported being pleased with the outcome. In contrast, another care manager from this test site who had worked on a plan with an individual with learning disabilities showed how more user-friendly planning processes were being developed that seemed to find more creative ways of involving service users. The plan he referred to was written as "a kind of narrative", and even though some people had felt this was "over-simplified", he argued it had made the process easier for the service user to understand.

Nature of SDS Support

5.21 It was at times hard to ascertain from the interviews how individual support packages were comprised because funding appeared to come from a variety of sources and the individuals concerned were not always sure themselves how their packages were made up. This did not necessarily appear to be a problem, especially if the service user's needs were being met. However, it did indicate a level of confusion that existed amongst many service users and carers, even for those who understood the system relatively well (because, for example, they had backgrounds in social care themselves and/or had previously used DPs or other social care systems).

5.22 Overall a wide range of SDS support packages was described in the case studies. Some involved a DP paying for a small number of hours support a week, for example, to pay for a supporter to drive a young man with autism to college in one site, or to pay support workers for 6 hours a week to sit in or go out with a woman in her 60s with mental health problems in another site so that she could get to activities in the community without always relying on her carer. This had made a " huge difference" according to her carer, and in her own words, had given her " a lot of confidence".

5.23 Other SDS packages were more complex care packages of over 50 hours per week delivering intensive care and social support, sometimes every day of the week. The size of the support package, however, should not be seen as the most significant factor in assessing the impact of SDS on someone's life. One young man with learning disabilities had funding for just one day a week to support him to attend a place where he could learn outdoor skills such as gardening, as well as having one week's short break annually. One of his parents spoke about the major difference this had made to the family:

"It's made a big impact on our lives, you know before SDS was in place he was lying at home all day with virtually no social interaction, no friends, no jobs, no job experience, opportunities. It was affecting his mental health, our home. Family relationships were being affected to a huge degree."

5.24 There was some evidence of a broader concept of SDS being implemented than initially emerges from analysis of information from the cohort forms (described in Chapter 4). This included examples of the SDS package involving the service user continuing with the same provider but having more input about how the support was provided to them. In addition, complex and intensive support packages were arranged for some case study individuals, utilising different funding streams and consisting of a mix of options including day services and using DPs to employ support workers to enable the service user to get to community facilities. Examples of more packages being more complex were found in Glasgow and Highland test sites, as the following 2 examples show, while managers in Dumfries & Galloway acknowledged the need for personalisation still to be tested in relation to those with multiple and complex needs.

Box 1 (All names are pseudonyms)

Heather, a young woman with learning disabilities, lives at home with her parents. She attends traditional day service provision, has 20 hours support funded through ILF and additional SDS money which supports her social needs outside the day centre. The family report that this had enabled them to "to feel more like a normal family" and Heather was able to " do things other young people her age do", independent of her family.

Mike, a young man who has autism and high support needs, lives with his parents. His SDS package consists of a DP paying for 55 hours a week support, enabling his parents who manage the DP to employ support workers, one of whom he has known for 15 years and who supports Mike with personal care and independent living, while other support workers help him participate in social activities, to attend music therapy and horse riding through Riding for the Disabled.

5.25 It was less common for SDS to be used to help someone moving home from hospital. At one test site a care manager commented that an SDS support package had enabled John, a man in his 50s with early onset dementia, to leave hospital with appropriate support in place. In her experience, the option of organising support via SDS had provided "more choice and control" to both John and his carer. According to the care manager, the support package under SDS was more flexible and individually tailored than would have been possible under existing DP arrangements. SDS had enabled this man's wife to continue working:

"It works out perfectly...I don't know what would have happened...John would have been home but then day care is so limiting...I would have had to given up work then."
(Carer)

5.26 A DP enabled John's carer to employ 2 PAs to support John from Monday to Friday. The support was also said to give him a sense of normality in his daily routine (as opposed to attending a day centre) and the opportunity to get out to places he wanted to go.

5.27 However, for some other individuals it was not always clear what was, or would be, different about SDS than accessing support via the traditional DP system. For example, in an area like Highland, where SDS was initially focused on young people in transition to adult services, most individuals appeared to be getting services (usually payments rather than managed services) for the first time. They were being offered SDS as an alternative, not only to directly provided services, but also to traditional DPs.

5.28 For a small minority, there did not appear to be any significant change in support, more than a change in terminology. For instance, a disabled woman had transferred her support package from a provider to a DP so she could employ her own PAs. She said she did not notice any perceptible change in the support she received, although clearly there had been. Another disabled woman from the same area did not feel the budget allocated to cover travel costs made all that much difference to her because, after her own contribution was deducted, the payment was very small.

Flexibility of SDS Support

5.29 The majority of people reported a change in their or their relative's support for the better. This was usually because of the increased flexibility and choice that SDS enabled, for example, being able to choose different facilities/agencies which, perhaps surprisingly, did not appear to have been possible under DPs. In turn, as we shall see, the examples of increased flexibility were partly due to the fact that SDS allowed users to pay for different and new activities or support. In addition, SDS support appeared to be more tied to 'outcomes', which could allow greater flexibility, although this very much depended on how this was interpreted by individuals themselves and the assessors. The following offer some examples of where the SDS test site had facilitated flexible support arrangements (See Box 2):

Box 2: Examples of flexible support packages from each of the test sites

Ian is a disabled teenager living in one SDS test site. At the time of the interview his SDS package had just been agreed. It was designed to pay another young person a couple of hours, twice a week to "do activities with him, keep him busy, do games, read books, do stuff together and then maybe once a month at week-ends to go out and maybe have a walk or go to the café or go to the youth centre perhaps". Also there was an option of an activity short break. Previously, the family had paid for this support themselves because DPs did not allow them to employ young people less than 16 years old.

Phil is a young man in his early 30s who has learning disabilities and long term health conditions that severely limit what he can do. He sometimes has to spend weeks in bed. He lives with his mother who is his main carer. Through SDS, Phil's support had recently changed for the better . He had wanted to move on from the day service because he had been going to the same centre since he left school. Now he participates in various activities geared around his hobbies and interests and has the chance to go on holiday. Phil says of the current arrangements: "Oh brilliant, fantastic but what I had before that was rubbish, I wouldnae go back to that way again." Phil's mother thought her son was happier and more outward going and had noticed an improvement in his self-confidence.

Gail is a young woman with learning disabilities in her 20s who lives with her parents. Her SDS package is more flexible than the social care she received previously and she can do more varied and 'age appropriate' activities (swimming, singing, art classes, horse riding), as well as having support at home. She can also use the budget to visit relatives and the rest of the family benefit from having time out from care. Her mother said Gail does not require sedation at night because no longer is she bored and falling asleep in the day. In interview her family reported that Gail is happier and more alert and her physical health has improved as she is able to walk more. This was said to benefit both Gail and her family.

5.30 However, there were also a small number of examples across the test sites where the flexibility of SDS was limited, particularly in respect of how a DP could be spent. For example, barriers were reported in relation to employing relatives or using the budget to support taking part in certain activities. In one example, being able to use the budget to support an older man attend bingo was prohibited as it was seen by local authority staff as gambling. In another, SDS was not able to fund the cost of moving into independent accommodation. In another example, an older disabled man who lives with his wife (also disabled) reported not being allowed to use the DP to employ family members as PAs to provide support they had provided previously. This was in contrast to other examples of SDS packages in the other test sites where friends and relatives were employed as PAs.

5.31 Clearly professionals make differential judgements about individuals' needs in relation to these issues which often, in turn, relate to concerns about risk and independence and so on. However, greater clarity about these issues might help avoid confusion and misunderstanding - and in particular, clearer explanations to individuals about the decisions that are made. Otherwise, decisions can seem arbitrary and inequitable to service users and carers.

5.32 There were also examples of SDS lacking flexibility in the other sites. For example, a family in one site wanted to pay a particular support worker whom they knew because they worked with the service user in local social care services. They wanted to pay her through the local authority so they would not have the burden of employing someone directly. However, they were told they could not do this - "the Council can't pay the Council". Others were deeply appreciative of SDS but in 2 of the test sites felt that flexibility was curtailed by the allocated budget, for example:

"I think my [relative] needs more help than what I'm getting...More funding not the personalisation, I think that's brilliant but I would have liked a bit more funding."

5.33 These, and other examples, make it clear that there are limitations to how far local authorities are able (or willing) to promote a broader definition of SDS and embrace a flexible, individualised approach to SDS as originally envisaged.

Relationships between SDS and DPs

5.34 In all 3 test sites there was a paradox at the heart of the SDS process. On the one hand, SDS was defined by all test sites as a spectrum of options including DPs. On the other hand, there were numerous examples of SDS being seen as an alternative to DPs, rather than DPs being seen as part of this spectrum withinSDS. This in large part relates to the fact that the test sites created different administrative systems for SDS and, for most of the test site period, these operated in parallel to existing DP systems in the 3 local authorities. Some packages in Highland seemed to involve both SDS and a traditional DP, and although monitoring returns were sent to the same office, one family commented that payments were handled separately in the local authority and came to them at different times. This situation was confusing - for staff as well as service users and their carers.

5.35 Indeed, service users and carers distinguished between what they perceived to be social services and personalisation/ SDS, sometimes seeing these as completely different rather than part of the same system. This meant that, for example, some carers were confused about where SDS funding came from and were under the impression that they could have funding either from SDSor the local authority. Therefore, integrating these systems seems to be an important issue to address - both at the monitoring level and at the operational level and may be one lesson to learn for any future pilots and general roll-out.

5.36 In one sense, the very existence of the SDS test site appeared to enable staff to work with people in more creative and flexible ways to support individuals having more say in how their support is delivered and what outcomes they aspired to achieving. This was related to greater time being available to users from new and specialist staff in some areas. Most received an enhanced service in terms of assessment and support planning. In this way SDS was frequently contrasted to the existing DP system by service users, carers and professionals. As a relative of a young man with learning disabilities said:

"I've spoken to parents on DPs and just on social work and it sounds like what we've got is a thousand times better."

5.37 Another family supporting a man with learning disabilities had previously received DPs for day care and felt that the SDS system was an improvement. Further, although the paperwork appeared to be the same as with previous DPs, communication with the SDS team was said to be better than that with the DP team. The carer of a young man with autism had previously tried DPs but found it " too restrictive" as it was only designed to employ a PA, which was not necessarily what was most helpful to him at the time. DPs were often linked to purchasing specific activities or inputs rather than outcomes. Adopting a more outcomes focus, SDS had seemingly offered greater freedom allowing people to decide what they wanted to do providing they could show how this met outcomes identified in the assessment.

SDS Meeting Unmet Need?

5.38 Numerous positive comments were recorded about the support available through SDS packages. Whilst this was often related to greater flexibility, this was itself sometimes based upon being able to access new or additional resources. SDS seemed to have been made available through the test sites to people who had been refused local authority services in the past, or support had previously been provided by relatives. Therefore, it was not always clear whether positive comments related to SDS as such, or rather to the greater levels of support and local authority funding that appeared to have been made available during the test site period, even though it had not been the intention for test sites to provide additional direct support monies.

5.39 For instance, in some cases local authorities' usual eligibility criteria might have been circumvented in order to trial SDS. A care manager in one local authority had tried to access ILF and DPs for a service user, but had been told there was no funding and a waiting list for DPs, was advised to "go down the SDS route instead". In another test site, a family who had been previously turned down for social work services related this experience:

"I never knew there was any help available apart from the social worker and she was absolutely no help at all. She said there was nothing they could dae, she just filled in a form for a housing association for him and that was it.... And then this personalisation thing started and she [social worker] suggested that he [son] might be able to get some help.... So she put me in touch with [Personalisation Team Co-ordinator] and it turns out that there is quite a bit of help available but we never knew about it, for whatever reason I don't know..."

5.40 It remains unclear whether the particular social worker was especially ineffective, or whether the SDS test site had enabled resources to be provided for previously unmet need - which was not possible in the mainstream system or via DPs. If support of this kind was not available via DPs it was not always clear to us why not; especially as eligibility criteria for services should presumably be the same, regardless of what type of support is utilised. Similarly, another family in the same local authority had been told by social workers that they were not entitled to services for their daughter who has physical disabilities because funding was only available for 'critical need', but the family now accessed support via SDS. A family in another test site whose son had learning disabilities had similarly been told there was no support available for their son except through SDS.

5.41 While SDS may have offered some selected individuals a more flexible service this begs the question of what happens when referrals increase, the social care budget is reduced, demand grows and SDS test site monies end. The equity and sustainability of SDS are therefore uncertain if, as it appears to have done, it relies on an injection of additional resources from Scottish Government. This issue was reflected across the test sites where individuals expressed concerns that their support or elements of it might stop at the end of the test site.

System Improvements

5.42 Whilst many service users and carers were mostly satisfied with their existing SDS support arrangements, they and the professionals involved in their assessments, suggested a number of system improvements as follows:

• Professionals such as care managers involved in assessment processes need training early on so that they feel confident with implementing new systems and so that the burden does not rest with a small team taking SDS/personalisation forward;
• A central information and support point such as independent living centres would be helpful to service users and carers;
• There was a general call for accessible information about SDS so that people who are eligible hear about it rather than having to find out by chance. This needed to include information about different SDS options and clarity about what cash payments can be used for (or why they can't be used);
• There was some support for managing the processes of assessment and decision making about the budget 'better' and different elements of this have been covered above;
• Increase eligibility for availability of SDS, including people with mental health problems, so that more people benefit, although such ambitions were not always framed within the resources available to local authorities;
• There was a need to address restrictions placed on SDS packages (including DPs), especially on what the money can be spent, and investigate discrepancies between test sites in terms of what they were able to achieve under the umbrella of SDS to share good practice;
• While SDS had brought several improvements to some DP systems, there was not always a reduction in paperwork. Practitioners, carers and service users would like to see this addressed;
• It would be useful for local authorities to support, or continue to support, networks of service users and carers receiving SDS packages as they find these valuable;
• Service users and carers would find it helpful if local authorities were to coordinate different funding streams better as their separation was perceived to be confusing;
• There was a need to ensure families of young disabled people are aware of SDS at an early stage which would need better knowledge of SDS among children's and education services and their professional networks;
• There was a general view that integration of SDS and DP systems needed to happen following the test site period.

Summary - Individual Experiences

• Thirty individuals across the 3 test sites, their families/carers and assessors contributed to the evaluation by telling us about their experiences and views of the SDS assessment processes, and SDS options they had accessed through the test sites.
• While experience of the quality of assessment processes varied, on the whole, carers interviewed felt the assessment had been comprehensive and inclusive, and had been based upon what the individual wanted.
• There were differences between test sites in the degree of flexibility they allowed in terms of, for example, employing relatives, and in perception of appropriate activities that impacted on flexibility.
• SDS had expanded choice and control for the vast majority we interviewed. More flexible support was being offered under SDS than had been the case even with past DPs, which were often linked to purchasing specific activities or inputs rather than outcomes.
• However, while SDS was defined by all test sites as a spectrum of options includingDPs, there were numerous examples where SDS was presented as, and understood by service users and carers as, an alternative to DPs.
• From these individual accounts, it was not always clear whether positive comments related solely to the model of SDS, or rather to the greater levels of support and local authority funding made available during the test sites, even though it had not been the intention for test sites to provide additional direct support monies.
• In this sense, the extent to which SDS test site monies had been used to meet previously unmet needs that had not been possible for either services or DPs to meet remains uncertain. This will have implications for the future roll-out of SDS across these and other local authorities.