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6. THE IMPACT OF MEASURES TO PROMOTE AND SUPPORT SDS
6.1. This section of the report considers the impact of local arrangements in each of the 3 sites upon key aspects of clients' experiences in setting up and managing SDS packages. It focuses upon the issues that were identified by clients as being specifically related to SDS.
Access to SDS
Knowledge and understanding
6.2. Most SDS clients reported having only limited knowledge of SDS before becoming involved with SDS and their awareness of SDS depended significantly upon their prior involvement with directly delivered or independent living care and support services.
6.3. Informal carers of people who needed care or support in the home from birth or SDS clients who had not needed any care or support until experiencing a traumatic accident or life event were largely unaware of what the term meant or of the service options that might be available at the time that they became involved in considering this as an option.
6.4. Others whose care and support needs were gradually reaching the point where a formal service in their home was becoming necessary, or who were receiving a directly provided service that was no longer meeting their needs, were generally better informed about the support options that might be available to enable them to live independently in their home.
6.5. A number of clients commented in some detail upon their early understanding of how SDS might deliver a better response to their needs.
6.6. Clients with profound and multiple impairment, or a combined learning and physical disability, viewed SDS as enabling them to remain with their family and thereby avoid the separation and risks of infection and injury that they associated with institutional living and acute hospital admissions.
6.7. Older clients with an active work and social life saw SDS as offering the best means of maintaining their chosen lifestyle for as long as possible, with all that this implies for a sustained income, social networks and learning opportunities. Younger people said that it offered a way of achieving or sustaining their independence.
6.8. For clients who had experienced a traumatic accident or life event resulting in hospital admission, care at home involved intensive nursing or specialist care and for them negotiations about health care in the home were conducted on a single agency basis with the NHS. In many instances the extent of the patient's future capacity or physical capability was unclear but as parents or partners became familiar with the various nursing tasks and routines associated with their care, discussions prior to discharge had focused upon the burden on carers as much as the potential that SDS might offer.
6.9. In many cases, particularly where children or older people with mental health difficulties were concerned, it was the family carers who were most involved in considering the possibilities offered by SDS. In these cases the prospect of obtaining some relief from the care burden, whilst at the same time staying true to their commitment to keep their child or partner at home was often an important consideration.
6.10. Regardless of what they knew about it beforehand, therefore, SDS was viewed from an early stage by almost everyone as having the potential to provide them with a solution to their care and support needs that could be tailored to meet their own specific requirements. In this respect therefore, it was both a potential solution and a catalyst for viewing the future in a more positive light.
Setting up a SDS package
6.11. The support provided by social workers and/or support service workers during the set up of SDS packages was widely praised as being invaluable in all 3 areas. Many clients were clear that they would not have had the confidence to go ahead with SDS if they had not received this initial support. Furthermore, had they decided to go ahead they may have quickly shied away from the employment-related responsibilities if ongoing support with recruitment and other employment related matters had not been available:
'I must also emphasise that it would not be possible for me to employ PA's through my DP without assistance from LCIL. Their support is absolutely invaluable'. Case study 22
6.12. So, whilst support had not resolved all of the issues that clients faced in setting up SDS, it was vital to instilling the confidence that enabled people to go ahead and for some to begin to learn more about and find their way around the system for themselves.
6.13. In all 3 areas the initial needs assessment and application of eligibility criteria mirrored the process for all other community care applicants. The extent to which SDS clients were aware of and fully understood the process that they had been involved in varied in much the same way as would the perceptions of users of directly provided services. To this extent they were no different from other community care clients.
6.14. In the case of child applicants in the Borders and Fife, again an initial needs assessment was used to determine the nature and extent of individual needs, as for any other child coming to the attention of the department. However, the absence of eligibility criteria and the capped nature of the SDS budget had resulted in them having waiting lists for access to the necessary resources, during which time some did not receive an alternative delivered service. Parents in the Borders were reported to be particularly aware that access to SDS was restricted and there was a perception that this was iniquitous.
6.15. Most SDS clients understood that the value of their package was calculated by multiplying the number of hours of care and support they needed by the hourly rate that funders were prepared to pay, plus start up costs and contingency. Those with higher level needs in Edinburgh were aware that they received a higher hourly rate than people whose needs were less demanding. Relatively few of the people receiving the lower rate seemed to be aware that this differential existed.
6.16. Those clients who received funding from several sources had encountered differences in the rates paid by each source. Most significantly, many were aware that their DP from the local authority included a contingency element which enabled them to cover larger than expected or unexpected costs and that this did not feature in other funding:
'The DP is not uprated automatically each year, rather it is a year on year decision depending upon the overall financial settlement for the Council. ILF don't uprate automatically either, and even if both funds did, they are not calculated on the same basis'. Case study 13
6.17. For many clients obtaining some or all of their support as SDS followed a period when they had previously received a directly delivered service. A number described the way in which services were unable or unwilling to continue supporting them or their cared for family member and the difficulties associated with negotiating a transfer to a SDS alternative:
'As services dropped away, funds were eventually transferred to Fred's DP. No alternative to the day centre that he attended was offered after it ceased to be able to meet his needs. Also, when Fred's respite service broke down no alternative was available so comparable funding was added to his DP for the purchase of night time care'. Case study 10 (Carer)
6.18. In many such situations, SDS and directly delivered services continued to be used alongside one another and in these cases the judgement as to whether all aspects of the package continued to provide the best mix of provision, and whether anything could be done to shift more funding over to SDS, was an ongoing source of debate and negotiation for many people.
6.19. For those SDS clients who were less able or whose carers had no previous experience of dealing with the care and support system, the process of setting up an SDS package was sometimes described as being confusing. The application of funding caps on some care service funding and the interpretation of what costs were eligible for funding were 2 examples of rules that were not open to discussion or even properly explained.
6.20. Those clients with a 24/7 package and/or whose family carers had been the primary and very substantial care providers over a sustained number of years reflected upon many years of struggle to achieve the package that was right for them. Their efforts had necessarily continued after the setting up of the initial package as they tried to develop a more flexible SDS service in response, for example, to repeated hospital admissions, to deal with gaps in funding, the impact of funding rule changes and the introduction of new funding that upset prior arrangements:
'Managing the SDS/ DP for Freda has felt like a continual battle with each element of service. Negotiations and discussions with each key agency go round in circles with each change of contact staff and/or senior manager. The same issues are re-visited time and again and any change or re-consideration only comes about as the result of sustained challenging' Case study 4 (Carer)
6.21. Those clients with health funding as part of their SDS package were not always aware of how their particular level of funding had been decided and in one case they described a process which they experienced as being rather hit and miss:
'Each funding stream has their own rules, and whilst there aren't any major gaps in Fiona's care at present, their conflicting rules and priorities meant that different funders often seemed to be playing one another off, to see who would pick up the bigger bill first.' Case study 15 (Carer)
6.22. The study was intended to focus upon clients receiving multiple funding streams and given that the application of eligibility criteria already concentrates services on those in critical need, this served to limit the extent to which access to education, training, employment, economic and social participation featured in the study sample.
6.23. For those children in the study sample education was not part of the SDS package but significant difficulties were described regarding the quality of sustainable access to education that was provided for the children concerned. No alternative personalised education support was available:
'Education support is not included in the SDS package but is of crucial importance. The school is unable to cope with the complexity of Freda's needs which present it with considerable practical problems. She is also off school quite frequently due to ill health and she has no access to a home tutor or to materials to help her continue to learn when she is absent from school. The hospital teaching service might be available, but this only offers one hour per week. In school, Freda is often left out of educational activities and her carer is left to provide educational support (for which she is not trained)'. Case study 4 (Carer)
6.24. Access to SDS in many cases followed a relatively systematic route by which information, assessment, support and negotiation led to a package of support for those who passed each of the hurdles along the way.
6.25. Despite this overall picture the researchers encountered some singularly ad hoc occurrences that led people to hear about and take up SDS. These cases paint a picture of a much less robust system into which clients fall as often as they are led and about which they are unsure and only partially informed, despite the best efforts of the support services. One of the more illuminating examples was where a young woman's father had been doing some work in a social work office and noticed SDS referred to in the publicity displayed on the wall. That was the trigger to him making enquiries and finally getting the go-ahead.
6.26. The overall experience of clients confirms that the support services is absolutely vital in encouraging and building the confidence of clients so that they are prepared to get involved with SDS, rather than accept a delivered service or simply struggle on alone in their own home.
The Administration of SDS Funding
Multiple Funding Relationships
6.27. We have already seen how the arrangements in each of the 3 areas covered by the study vary somewhat regarding oversight and support of SDS by the dedicated local authority resources and the SDS support service.
6.28. Regardless of how the arrangements vary however, a significant proportion of the time spent monitoring how funds are spent involved clarifying and interpreting the rules governing the different funding streams and advising clients how they may use their funds.
6.29. Officials and some clients in all 3 areas were clear that the working relationship between different funders had improved significantly over recent years and that this had resulted in a generally more joined up and flexible approach to funding for individual clients.
6.30. One example which illustrated this progress concerned a profoundly disabled young woman who was cared for by her parents and family, with some additional PA care also. Her father takes up the story:
'Within weeks of my wife's death, a multi agency meeting was held to work out the best package for my daughter. It was acknowledged by all parties that admission to a care home was not viable given the level and complexity of her needs and anyway I was determined that she should remain at home. From this meeting a larger DP was set up, ILF was increased to the maximum level and health committed to continuing its funding. This response to our changed circumstance was very helpful'. Case study 15 (Carer)
6.31. This improvement in working arrangements was contrasted by many officials, clients and informal carers with the continuing differences and contradictions between the rules and operating procedures that govern the different funds:
'There is little or no co-ordination between funding streams - duplicate financial assessments, even across Council funding streams, are common. External funders are constantly interpreting and re-interpreting their own rules, thereby creating ongoing practical difficulties for those involved in trying to knit together suitable SDS funding packages'. (Local official)
6.32. The extent to which these continuing differences present a threat to the delivery of flexible care for clients seemed to depend to some extent upon the attitude that local authories took regarding how rigidly the rules regarding DPs were applied. Recent changes in ILF rules were said to have created new problems whilst ILF's reportedly flexible approach to clients altering their care arrangements was said often to be at odds with the approach taken by local authorities:
' ILF is more flexible but only as long as you keep them fully informed about everything you do. The Council can be inflexible in how they decide what to claw back - Gillian needs to spend much more on support during university terms so our spending is quite erratic. On one occasion they tried to take back funds that we needed later in the year - not very helpful!' Case study 1(Carer)
6.33. Local authorities are the lead agency in monitoring SDS spend and, with DLA being committed for a significant number of years ahead, ILF only being audited once every 2 years and the NHS being said by local authority officials to 'apply a light audit approach', the accounting practices adopted by local authorities have an important impact upon the way in which clients were required to manage their SDS funds.
6.34. It is important to note here that no evidence was found that the rules or formal audit arrangements operated by the different funders had been aligned or co-ordinated, other than those concerning eligibility.
6.35. The 3 areas appeared to reflect different priorities in their approach to the administration of SDS funds. In Edinburgh the administration of SDS funds focused upon achieving a single 'pot' of money for the client that could be used as they considered appropriate to deliver the care that they needed.
6.36. The approach in Edinburgh appears to embody the local authority's view that it has a key role to play in providing strategic leadership to taking forward SDS and that in order to do so it needs to have a comprehensive understanding of all of the funding that is provided to local SDS clients.
6.37. In advising clients about what their DP could be spent on, the emphasis was upon achieving the desired outcome for the client rather than ticking every box regarding the application of rules and defined eligible expenditure. This approach was supported by the local authority's support for clients maintaining a single bank account.
6.38. However a contrary view was expressed by one client in Edinburgh who said:
'I am suspicious about all funding being brought together into a single administrative arrangement - if issues arise you have only one place to go to argue your case. At the moment there is a useful tension between funders that can help to ensure that things are resolved and that you receive some protection'. Case study 13
6.39. Scottish Borders Council appears to apply a more literal interpretation of how funds are to be spent with examples being cited by clients of the details set out in their care plan being applied fairly rigidly when it came to requests to alter or substitute what was purchased:
'…… my meal times are specified in my care plan and it is problematic if I get my PAs to help me prepare a meal at other times during the day. ILF prescribe fairly general tasks/times but the DP is much more prescriptive and therefore more restricting upon how I spend my time and what I do' Case study 3
'Things work well at present but the way that the funders need you to account for how money is spent can make it hard to use the money in ways that are most likely to give you the type of support you need, when you need it'. Case study 12
6.40. This approach appeared to be reinforced by advice to clients that they should open a separate bank account for each funding source in order to assist in auditing each payment, perhaps reflecting an expressed view amongst some officials that the local authority is primarily concerned with DPs and to a lesser extent ILF and that it does not have a significant role to play in understanding and analysing the totality of funds that are being paid to local SDS clients.
6.41. As one client put it:
'I keep 3 separate bank accounts, one each being for DLA, ILF and DP. I have been told that I have to have these separate accounts, but as I keep my own accounts this involves me in a significant amount of additional hassle, having to work out the proportion of each PAs time that needs to come out of each funding account'. Case study 3
6.42. The approach in Fife is closer to that in Borders than in Edinburgh with the local authority concerning itself with DPs and ILF (and SP in the one case this is paid as a DP) and not so much with other funding streams, including DLA. The bank account which is scrutinised is meant to have DP/ ILF income only and payments to PAs, agencies, insurance etc. as the expenditure, plus the allowed cash withdrawal for subsistence.
Funding rules and their application
6.43. The key linkages concern DLA, ILF and DPs. If a person is eligible for the DLA care component at the higher rate, they become eligible for ILF if they are unable to pay for their care. If they are eligible for the DLA mobility component they can access the Motability scheme. ILF is intended to supplement a DP from the local authority and is therefore considered by the fund itself to be a top-up facility.
6.44. Many clients had received DLA for a considerable number of years and paid it straight into their own personal bank account. They rarely saw this as being part of the larger SDS funding pot involving DP and/or ILF and some clients were adamant that there was a difference between "their" DLA and the DP/ ILF funding for which they were accountable to the local authority. This sometimes made it difficult for the researchers to be able to accurately determine what funding each client received.
6.45. In one case, a young SDS client's parents contacted social work after her mother was diagnosed with a serious medical condition. This was 14 years after her daughter had first received DLA and once the social worker became involved she realised that as the daughter received DLA at the higher rate, she might be eligible for ILF, and helped her to put in an application.
6.46. In Edinburgh DPs are usually valued up to a limit which is equivalent to the cost of otherwise providing a directly delivered service. The 'up to' approach leaves room for efficiencies to be sought against the alternative direct service cost, although most social workers applying on behalf of clients will seek to ensure that payments are as close to the ceiling as possible.
6.47. In the Borders and Fife the intention is that the level of support is the same regardless of whether a direct service or a DP is being considered, e.g. involving the home care organiser assessing the number of hours of care required and equating day care to 14 hours of care. The cost is calculated by multiplying the number of hours by the appropriate hourly rate.
6.48. In all 3 areas, the actual DP cash payment included not only funds from community care budgets to pay for personal care but also funding from other sources relating to the spectrum of local authority services, for example housing support. When paying the DP into the client's bank account, local authorities include any health funding that is part of the client's package, re-charging this to the NHS at a later date.
6.49. The application of local authority eligibility criteria at the level of critical need reduced the likelihood of less intensive services being provided as part of the DP and the only examples found during the study concerned 2 cases in Fife where DP recipients benefited from SP funding for housing support. In one of these cases the funds were paid to the carer and so kept separate from the client's DP/ ILF funds but in the other case the SP funds went through the same account as the person's DP/ ILF funding.
6.50. There was some evidence that additional grant funding was being paid to clients by voluntary trust funds. In some cases this was not declared to the support service or the local authority for fear that it would result in the client's public funding being reduced. In others it was paid to provide for a specific need, such as accessing specialist hydrotherapy sessions and more clearly complemented the publicly funded package:
'Things have got tighter since the original budget was set and we have managed to get some additional funds from the Snowden Trust which is used to support Gillian when she is at university'. Case study 1
6.51. All 3 local authorities monitored clients' spend against the payments they have received and decided on a case by case basis whether any surplus should be clawed back. ILF is provided to top up the local authority's DP and therefore the fund's view is that all clawback should be returned to the fund because it is by definition surplus to the client's core requirements, regardless of what aspects of service have been under-used. This view is challenged by the 3 local authorities in the study who considered that any surplus funds should be returned to the source that pays for whatever service has been under-utilised. As one local official said:
'There are a number of practical difficulties associated with seeking repayment of funds if they are underspent: how do you handle the clients' own contribution to their overall funding? ILF require all funds included in the funding mix to which they contribute to be returned to them, no matter what the source. Health have similar rules'.
Whilst a client's experience was:
There is a DP surplus at present because we can't find a suitable respite placement, but nothing has been clawed back as yet. However ILF have clawed back some funds because we had a spell when PA hours were down and we were recruiting'. Case study 6
6.52. Clients in Borders and Fife local authority areas with separate accounts should be applying costs to each account according to the service that they are intended to fund, thereby making it easier to identify which fund is due what, when an under spend occurs. However, in one case, the client, knowing that ILF required all clawback to go to the fund, managed their separate accounts so as to ensure that any unspent funds are always left in the ILF account.
6.53. From this user's perspective her approach was entirely logical given the requirement to have separate bank accounts although she could not understand the requirement to use separate accounts:
'Basically I allocate tasks/costs and any surplus is left in the ILF account. I feel that there is more latitude about how ILF funds are used and as the DP has to be predominantly personal care this means that that there is more audit pressure from the Council than anywhere else. A single pot system would be simpler for me to administer and as it would still be based upon my overall assessed needs I don't see why there would be a problem in accounting for how the money is spent'. Case study 3
Detailed financial issues in managing SDS
6.54. A feature in each of the 3 areas was the absence of readily available and transparent guidance for clients on what funds could be spent on, particularly through their DP. The situation regarding ILF seemed to be relatively straightforward with clients describing what they saw as a rather bureaucratic system, but one which was nevertheless prepared to apply its rules flexibly, as long as you followed the prescribed procedures to the letter:
'Each funder seems to deal with things differently. ILF monitor Freda's funding bi-annually and we have to make a quarterly return for the DP funding. ILF is more flexible but only as long as you keep them fully informed about everything you do'. Case study 4
6.55. The need for clients to pro actively seek out advice was widely reported by them. This was evidenced during the study by some clients raising issues which others in the same area had already sought and obtained advice about, but which they remained totally unaware.
6.56. One example of this concerned the reported uncertainties faced by clients in substituting PA tasks with other, ineligible tasks, when an informal carer wanted to 'do their bit' to help. In these cases, the client's wish to let a family member help out by assisting them prepare a meal or get ready for bed left their PA with time on their hands and rather than do nothing, they often did some washing up or cleaning, which strictly speaking they weren't paid to do.
6.57. The absence of explicit guidance was interpreted by some clients as allowing them the scope to apply their own interpretation of what was eligible and thereby secure the best solution for them:
'….however, you can usually use the DP as you wish, to achieve the service mix that you want and I have found that at the 3 monthly reviews there is an acceptance that some variances against the budget are likely to occur -for instance I was able to use my DP to fund foreign travel insurance for my PA, despite not having done so before'. Case study 13
6.58. Other clients however experienced the absence of clear guidance as inhibiting their freedom to do what they wanted and left them anxious and concerned that they might inadvertently misuse public funds:
'Whilst I do understand how my funding was decided, I'm not entirely clear about the rules that govern how the component parts can be used - it needs to be more transparent. For instance the funding contains an allowance for NI @ 8.5%, but I sometimes have to pay 9.5%. It is not clear to me whether this is a contingency cost or an increase in basic costs that I have to absorb in the element designed to cover core staff costs. In a budget designed to cover the full 24 hours a day, there is very little slack'. Case study 16
6.59. Recent changes to the rules governing DPs have removed the facility to pay relatives to provide care except in exceptional circumstances, where it is necessary to meet the needs of the client. Many clients were aware of this change but at the time of the study none of the 3 local authorities had compiled a policy to guide the determination of what such circumstances might be.
6.60. As a result, some clients had ceased to pay their relatives and were using them less, others were continuing to pay them and had heard nothing to indicate that they should stop doing so. This uncertainty was a frequent cause of dissatisfaction:
'My daughter comes round at the end of the day sometimes - it enables you to relax a bit more than you otherwise would. However, its very disappointing that I can't pay her anymore - I don't use her often but when I do, I think I should be able to reward her for her time and trouble'. Case study 3
'The fact that relatives can't be paid is really unhelpful - there are times when they are the only available option and it is unclear what the 'exceptional circumstances' clause really means, and who decides whether it applies or not' Case study 9
6.61. An upcoming issue that the researchers were alerted to concerned the shift from net to gross DP payments. This will see clients receive a DP which includes an element to match their assessed personal contribution. Clients will then be billed for this amount which they will have to pay directly to the local authority. At present payments are made net of any personal contribution leaving clients free to use their contribution as they see fit. Those clients who were aware of the proposed change felt it was unnecessary and likely to present them with cash flow problems.
Contingency
6.62. One of the most common areas of uncertainty concerned use of the 'contingency' element within the DP award. Each of the 3 areas supplemented the DP hourly rate with an additional contingency payment (18% in the cases of Edinburgh and the Borders and individually determined in Fife) to cover unanticipated or larger than expected costs.
6.63. At a simplistic level, contingency funds should only be used to deal with unforeseen circumstances and should reasonably be held as unspent funds until that time arrives. However it was not clear if clients were expected to have an under-spend at the end of the financial year.
6.64. Without guidance clients felt as though they were left to decide for themselves and in some cases they took the view that any surplus was likely to be clawed back and that, accordingly, all of their funds most definitely would be spent.
6.65. Some clients used this to pay for staff holidays, sick leave or other staff-related items that clients felt secure in interpreting as being unforeseen and yet central to the provision of their care. Others used this element to cover the additional cost of employing a senior PA, whose rate of pay was above that reflected in the calculation of their DP.
6.66. More than one client commented on the amount of 'contingent' costs incurred by clients with a large team of PAs. Whether it be coffee, toilet rolls or simply wear and tear on the house, the additional costs incurred by virtue of needing a substantial carer presence throughout the day were seen as warranting a legitimate claim on their funding, even though they did not fall within any acknowledged area of spend:
'….I am also unclear how I can spend my contingency element - no guidance is issued so what I do is claim £100 each month for 'running costs' which helps me to meet all of the unanticipated costs or costs associated with having people continually in your home and which I'm not really sure would otherwise be eligible for payment. No-one has yet challenged this part of my claim'. Case study 22
'You incur a number of costs and a level of wear and tear on your home which is not really accounted for by the funding system. We use the contingency fund to meet the most pressing of these'. Case study 10
6.67. The extent to which this uncertainty was problematic related to some extent to the size of a person's care package. In small packages, the contingency element was small and clients felt quite comfortable in using it for whatever seemed useful. In larger packages, the sum involved could run into thousands of pounds over the course of a year and some of these clients needed clarification to ensure that they were spending significant sums of public money in ways that were acceptable.
6.68. As we have seen above, a number of staff-related funding issues were dealt with by using available contingency money. However, other difficulties arose regarding staff terms and conditions and costs incurred in providing care and support. Some of the most common examples concerned additional costs relating to supporting the client on holiday and costs incurred accompanying the client on trips out, meals etc.
'Also, holidays cost a lot and while the staff-related costs are covered there are a lot of unavoidable incidental costs that can make time away, unaffordable'. Case study 16
6.69. Fife have an arrangement whereby up to £10 a week "subsistence" can be taken from the DP account in cash for use for such incidental expenditure without further justification or audit being required.
Respite care
6.70. Respite care was another common area for uncertainties. Most packages specified that respite funds should be used to enable clients to pay for time away from their home in supported settings or to pay for PAs to enable carers to spend time away from their caring duties. In a number of cases changing circumstances meant that a new approach became more appropriate but some clients had not asked for a re-assessment of their needs, neither had they sought guidance from the local support agency. As a result they were either continuing with respite arrangements that didn't really suit them or had ceased to spend their respite element:
'Fiona's mother continually sought to get more night time care and respite cover, but we could never use the respite funding because it proved impossible to find suitable carers'. Case study 15
Managing SDS packages
6.71. The majority of SDS clients in the sample employed PAs rather then contracting services from agencies. Nationally 72% of SDS clients use PAs to meet some or all of their needs and 63% use PAs only.
Agency Services
6.72. SDS clients across the 3 areas had very different levels of access to agency services. Whilst most urban areas were relatively well served with ample choice being available, rural areas were poorly served, to the extent that for some clients, using agency staff was not an option.
6.73. Experience of agency staff followed 3 broad patterns. Whilst relatively few of the clients interviewed in the study currently used carers from a care agency many had done so in the past but had stopped. Others continued to use them to provide a few hours of care each week in order to keep their options open, should they need to call upon their services in an emergency. A final group only used them in an emergency:
'I employ 3 PAs who work for a minimum of 9 hours each per week and others for one off requirements. I also use an agency which provides 3 hours per week. This keeps this door open should I need more from them. It is the legacy of a longstanding arrangement when I used them to provide most of my support, before my package increased in size'. Case study 3
6.74. Some clients had been unimpressed by the standard of delivered care from agency staff, citing a lack of initiative, poor attention to detail and limited sensitivity to their particular care requirements as being problematic. Other clients did not find the quality of the care to be a problem and indeed many had 'poached' their agency carers to become a directly employed PA:
'The agency we were using couldn't guarantee the continuity of carer that I wanted for my wife so, when I got to know a good one, I asked her to leave the agency and come and work for my wife as a PA. Now she gets better pay and conditions, even paid holidays, so we are all happy'. Case study 20
6.75. More clients did, however, have concerns about the inability of agencies to provide a consistent carer or team of carers. This often meant that carers who were unknown to them arrived unannounced and often ill prepared for the particular caring role that they were expected to fulfil. The quality of the client-carer relationship was considered by many clients to have a direct bearing upon the quality of delivered care and therefore not knowing who would be caring for you from one day to the next, significantly reduced the standard of care relative to that available from directly employed PAs.
6.76. Added to this were identified problems in clients being able to obtain care as and when it was required. In some instances agencies would make it clear what they could or could not offer and leave the client to decide whether to accept or go elsewhere. Others would commit to a particular set of hours and repeatedly fail to arrive on time:
'We looked at the prospect of using an agency and there were a few around, but their rates varied considerably and you were expected to provide things like a room for the carers to stay in when they were working evenings. We preferred to go with using PAs'. Case study 9
6.77. Whilst the issue of care agency staff flexibility was problematic for many clients it was particularly so for clients with a more active lifestyle. In one of these cases, the client described agency staff being sent along at the time that the agency had traditionally provided care, having ignored previous requests for a carer to work different hours to accommodate a change in the SDS client's work schedule.
6.78. As far as costs were concerned, care agencies were generally reported to charge approximately the same rate as most SDS clients paid to their PAs, although there were some exceptions. In some cases the agency charged more but paid its staff considerably less, whilst in another case the agency charged less and paid its staff considerably less.
6.79. Particular issues face those with specialised medical care needs where the number of agencies able to supply suitably skilled staff was small and they employed very few such skilled staff at any one time:
'Using agency staff as a single purchaser is not cost effective - we have to pay a very high hourly rate and even then sometimes don't get the quality of staff that Freda needs'. Case study 4
6.80. For some SDS clients, though, the principal problem with care agencies concerned billing errors and the effort required on their part to challenge and obtain a revised statement of their account. In addition, agencies included staff travel time within the care hours that they contracted to provide and as a result clients almost always reported receiving significantly fewer hours than they paid for and were needed to deal with their support requirements. In some cases this issue alone had been sufficient to persuade them to move to directly employing their own PAs.
6.81. Most SDS clients in urban areas had found that agencies were able to step in and provide a very useful emergency cover service. In rural areas the dearth of agency provision sometimes meant that this option was simply not available. Where limited provision did exist, existing contractual demands on agencies usually restricted their capacity to respond at short notice and, for some clients, their specialist care needs further limited the support available from any one agency:
'We've always used PAs for Fiona, this is what we prefer and there are few agencies in the area that could provide assistance anyway'. Case study 15
6.82. Overall, most of the SDS clients interviewed considered that the task of managing their business relationship with care agencies was almost as demanding as being an employer in their own right, without the advantage of being able to control the quality and flexibility of the delivered service.
Employing Personal Assistants
6.83. A substantial majority of clients interviewed had positive experiences to recount of directly employing PAs.
6.84. For the majority of SDS clients the most immediate and worrying aspect of taking up an SDS package was the prospect of becoming an employer. The extensive work that support services do to prepare and support SDS clients in this role includes providing advice and support about staff contracts, recruitment, pay and terms and conditions of service. These are the basic building blocks of an effective support service. Of the 24 clients included in this study all but one used their local support service for all of these aspects with the exception opting to manage their payroll and other financial records themselves.
6.85. Some clients for whom this aspect of SDS was particularly challenging were quite relaxed about leaving the payment of wages and related aspects in the hands of the support service. In instances where clients had a very small package or they did not wish to be involved in these matters, clients or family carers were often only vaguely aware of the detailed arrangements under which they employed their PAs. One client admitted:
'I don't feel that I'm really on top of my employment responsibilities but I'm confident that the support service will deal with all of the necessary practical things and give me good advice about anything that I need to deal with'. Case study 21
6.86. For others, often with much larger packages and thereby a significant number of PAs there was a recognition that regardless of the available support it was in their best interests to ensure that the detailed basis for the employment of their PAs reflected the most up to date available guidance and delivered the service that they needed:
'It can be easy to forget that you're an employer and have wider responsibilities to your PAs - you can't afford to do so for long though, because you need to be a good employer to ensure a good quality of care and a satisfied staff team'. Case study 22
6.87. Clients' experience of recruiting PAs varied according to their location and the skill levels that they needed. Where difficulties did arise in recruiting, support services were often able to assist in identifying stop-gap carers or alternative care agencies and sometimes families helped out to fill the gap:
'Getting PAs for Mrs James was a big advantage, but it did take a few months to set up. The DP agency advertised for the posts and Mr I interviewed the applicants. The response was not great, but Mrs James's previous Council carer moved across to work for her directly and family members live relatively close by and help out by dropping in on a daily basis'. Case study 9(Carer)
6.88. Many clients began by advertising for their carers and, whilst a few continued to use this approach, most preferred to go by word of mouth, often via their existing PAs or agency staff that had previously worked with them. Those taking this latter approach commented upon the increased assurance that it gave them that in so doing they were less likely to recruit someone who was unsuitable and therefore would avoid the costs associated with a wasted criminal disclosure check. Another approach was to use Community Service Volunteers to work as PAs for a minimum of 6 months, in return for accommodation and pocket money:
'…my DP funded some CSV volunteers to work for me full time and also paid for their accommodation.' Case study 22
'I use my DP to pay for CSV volunteers who stay for a minimum of 6 months, but who cannot stay any longer than 2 years. They're usually students and its worked out well for them and me'. Case study 18
6.89. Once on the payroll few clients reported having encountered significant employee difficulties. Most received the information updates from their local support service and a few attended information seminars arranged by the service on employment-related matters such as their legal responsibilities and how to build relationships with staff.
6.90. A small number had experienced examples of dishonesty or non-compliance which in all cases resulted in the PA leaving their employment. There were also a few reported instances where a PA had not 'fitted in' with the family and in these cases, again, the PA eventually left their employment.
6.91. A suggestion made by a long term SDS client best sums up one approach that might assist in enabling clients to manage their PAs better:
'I get to know my staff very well and some have been with me for a number of years. I sometimes find it hard to deal with things when problems or issues arise. I would really like to have access to an independent person who could advise me about staff related matters and perhaps support me to deal with staff members face to face, when that is necessary'. Case Study 16
6.92. Despite the absence of significant reported problems by clients in this area, concerns were expressed by support services regarding some SDS clients awareness of their legal duties and obligations and examples were cited of summary dismissals that appeared to contravene established employment law and good practice.
6.93. This is a complex area for seasoned professionals to manage effectively let alone inexperienced employers who do so in the context of a uniquely dependent employer-employee relationship. The development of 24/7 legal advice lines was viewed positively by clients, but if the level of general awareness of good employment practices remains at best patchy, this aspect of managing SDS will continue to represent a major risk for many SDS clients.
Getting the best out of Personal Assistants
6.94. All of the SDS clients interviewed for this study recognised the importance of providing initial induction training and support to newly appointed PAs. Detailed arrangements varied from a period spent working alongside an experienced colleague, to formal training from healthcare professionals and a requirement to read health and safety and infection control guidance.
'When they first start, my PAs work 2 shifts alongside an experienced PA. This ensures that they get experience using the hoist and my stair lift before having to use them on their own. I also get them to read a booklet on risk and a fire safety handbook too'. Case study 7
6.95. This practice was seen to be important not only to ensure that standards were maintained and key practices were delivered in the very specific manner required but also because it served to ensure that PAs understood the nature and range of the tasks that were required of them.
6.96. A number of clients commented upon the rigid views that some carers had about the tasks that they would or would not undertake. Often this was said to reflect their experience of the more closely circumscribed working practices in agencies or local authorities where each service had a specific role. For some clients, overcoming this issue and ensuring that their carers shared a firmly understood commitment to providing them with a suitably personalised service was a considerable challenge:
'Its very easy for PAs to dictate what gets done if they come in with firmly entrenched views. However much you try to ensure that things are done as you want, over time they tend to change things round to how they want them'. Case study 10
6.97. For some family carers of children or young adult clients with a mild learning disability, a related issue concerned the challenge of ensuring that new PAs understood both the potential and the limitations of their child. Many parents felt that they had established a careful balance between guiding their child and encouraging calculated risk taking. This was sometimes difficult to explain to new carers and had led to instances of children undertaking what the parents considered to be inappropriately risky activities. In one case however:
'The PAs now work well alongside us and we have complete trust in the care they provide for Jane. It is the relationship between the PAs and Jane that really determines whether things work out okay'. Case study 6
6.98. Establishing sustainable and fair working arrangements for the care team was seen by most clients and family carers as lying at the heart of ensuring positive employer-employee relations and a happy, fulfilled staff group. However, many felt that the work this required of both clients and family carers alike was rarely recognised and that it in fact represented the unseen and uncosted price of receiving SDS. Nevertheless at least in one case, this situation was infinitely better than what had been in place previously:
'On occasions it feels as though your needs (as family carers ) have been forgotten and when Fred was more involved with directly provided Council services, the statutory agency focus was nearly all upon how these resources were coping with Fred with little regard being paid to how his care at home, which accounted for the vast bulk of the caring time over the course of a day/week, was going'. Case study 10
6.99. For a few SDS clients and their family carers the solution was to create a Care Manager/ PA post so that there was someone to carry responsibility for co-ordinating the work of the PA team, thereby relieving some of the burden on them. Where this approach was adopted, the clients received a relatively large support package and they were able to afford the extra cost from their DP contingency element or by increasing their personal contribution.
6.100. All of the SDS clients with sizeable support packages operated structured staff rotas that they set up and maintained themselves. Whilst most were clear that their PAs were there to provide a flexible service as and when required, they also recognised that there had to be compromise on both sides if the arrangement was to be sustainable:
'The various funding streams pay for the time of 15 different people. They do similar things each week to give them and the family some routine, but the scale and complexity of the whole arrangement is such that it wouldn't work without flexibility. Boundaries have to be blurred'. Case study 17
6.101. This recognition reflects the softer people skills that are required of SDS clients in maintaining what can be a difficult balance between getting the service that they want and giving the PAs that they employ sufficient flexibility and support to enable them to be able and to want to continue to provide what at times is a physically demanding and emotionally draining service.
6.102. In most cases finding time for team building was highly problematic but in one case the SDS client, his family carers and PAs were invited to spend a weekend at a hospice where he had previously stayed. The resident staff group offered to care for the client whilst the family carers and PAs spent time doing some team building work. This proved to be a valuable opportunity and one which the family hope to repeat.
6.103. One aspect of PA support that most clients felt strongly about was training. In areas where recruitment was difficult, being able to offer consistent access to good quality training was seen as being vital to the ability to recruit and retain staff.
6.104. In reality few SDS clients reported being able to do so. Whilst some had been able to secure places for their staff on relevant courses run by either their local authority or local support service this was not widely the case. Some were aware of privately provided training but none had used it and many were unsure whether the costs involved, at around £200 per day, would be acceptable to the local authority.
6.105. On the positive side one family carer, whose child has substantial health needs, noted the very helpful source of advice and support that they had identified, unfortunately only after a long time of struggling to get what they needed:
'The Patient Liaison Officer at the Sick Kids hospital understands how the system works and is able to call meetings and get issues addressed when needed. Her support has been considerable and much valued. We have also recently become aware of the Special Needs Information Point ( SNIP) at the Sick Kids which provides a huge amount of really useful information and advice for parents of youngsters with special needs'. Case study 4
6.106. The most commonly cited gap was moving and handling training. Many clients reflected on the fact that few statutory agencies will permit care staff to work without undertaking this training, and yet they were unable to obtain this most basic of skill-development opportunities for their carers.
6.107. Most viewed this as an equity issue and one which may affect their ability to recruit and retain staff. Others however felt that, without periodic top-up training, it was too easy for standards to slip without anyone - including the client - noticing. For them this was a fundamental quality of care issue and much more than just a principled gripe about an important gap in the available support network for SDS.
6.108. An issue for one client who was severely physically disabled was that:
' NHS nurses won't provide the training to my PAs to enable them to undertake a specific nursing task, despite the relevant professional guidelines stating that they may do so'. Case study 7
6.109. Those SDS clients with more mobile and demanding lifestyles identified similar issues regarding access to training but in these cases they concerned awareness of access issues and discrimination:
'The extent to which PAs are sufficiently aware of the discrimination faced by people with a disability on a day to day basis can be limited. Access to disability awareness training is central to the role of PAs working with this client group and yet has proved particularly difficult to arrange'. Case study 12
6.110. Another issue for SDS clients with more active lifestyles but with a need for support at unpredictable times and places is having a PA who is willing and able to be mobile as well as flexible. Unlike home carers who, generally at least, start their work in a client's home, some PAs needed to meet their employers after work or after lectures at a mutually convenient location.
6.111. The issues set out above represent a very substantial - some would say intimidating - agenda that SDS clients have to deal with if they are to maintain the quality and delivery of their care and support. It is worth noting that, across the 3 areas included in this study, only a small number of SDS clients were recorded as having chosen to return to receiving a directly delivered service. But where this had happened it was because of difficulties in recruiting PAs or the task of managing their support package proved to be too much for them.
Key Impacts by Local Authority Area
6.112. Having considered the impact of local arrangements according to key stages of the SDS process and related tasks, this section considers the 2 main areas of difference between the arrangements in the 3 areas that gave rise to the most significantly different impact on clients.
Local authority arrangements
6.113. The positive impact of Edinburgh's central FIT upon the extent of multiple funded packages in the city was significant and widely recognised. The key differences from arrangements in the other 2 areas were its clear leadership role, its substantial influence by virtue of its skilled and knowledgeable team and its comprehensive knowledge of the extent and mix of local SDS funding. Beyond these factors however, it had adopted an explicit commitment to supporting clients to use their SDS funds as a single pot of money in order to maximise the flexibility of the care and support that they purchased.
6.114. In the Borders and Fife there was not the same evidence that their leadership had yet been effective at broadening people's view of DPs to take in the wider SDS agenda, and there was a lesser acknowledgement of the benefits of clients funding their SDS through a single pot of money:
'For many people, clients and professionals alike, DP is still the focus locally. Health and other funding streams are very separate and are barely recognised as a related issue. Information on DLA is particularly hard to come by.' (Local official)
6.115. Edinburgh's support for clients using their funds as a single pot was evidenced in their support for clients using just one bank account and the low level of detailed control that they sought to exercise over how funds were used. In Fife, the use by clients of separate bank accounts was in evidence but the application of funding rules did not appear to be particularly problematic for clients. In the Borders, again the use of separate bank accounts was in evidence but here the application of funding rules was more widely commented upon as being unhelpful and unclear.
6.116. The extent of health funding being provided in the case studies in Edinburgh and the overall number of multiple funding streams being paid to the Edinburgh study sample reflected apparently greater progress than had been achieved in the Borders and Fife as regards putting together packages that utilise a greater number of funding streams. (See Table 3.2).
6.117. Edinburgh's historical involvement with independent living funding seems likely to have played a part in achieving the current numbers and the practical means by which the health component in Edinburgh is negotiated and reviewed alongside the local authority's own contribution also appears to have delivered substantial gains for clients:
'All of the various funds, including health, are paid into a single account and used for whatever Fred needs. We don't keep artificial boundaries in our heads as to who is funding what and how much is being spent from each element. This would be impossible to do and would be against the spirit of what independent living is all about' Case study 10. (Carer)
Support service roles and relationships
6.118. In Fife the support service was provided in-house by the local authority, in Edinburgh and the Borders it was delivered by an external, independent agency, under contract to the local authority.
6.119. In reality however there were major differences between the agencies involved in Edinburgh and the Borders, not least with regard to their history, which saw LCIL originating as a campaigning user-led agency and DPA as an agency dedicated to the support of DPs having been developed with the encouragement and support of Scottish Borders Council.
6.120. In terms of functions, the key differences across the sites were that the Fife in-house service and the Borders DPA were responsible for monitoring expenditure returns, albeit with the DPA reporting back to SBC, whilst monitoring in Edinburgh was carried out by the Council's FIT. In all 3 cases, training and support relating to SDS clients' employer role were carried out by the support service.
6.121. The quality of training and employer support was widely acknowledged in each area and similar steps were being taken in each case to address perceived difficulties around accessing sound legal advice, via web-based advice services. Supporting clients in re-negotiating their package or establishing suitable arrangements with agencies, was also viewed positively by clients and again did not give rise to major differences in opinion across clients in the 3 areas.
6.122. With the Fife service being operated in-house by the local authority and monitoring of spend being carried out by the local authority in Edinburgh it is perhaps not surprising that the monitoring of expenditure and the application of funding rules was the one area where the DPA in Borders was alone in receiving some less positive feedback. For the DPA, monitoring funds on behalf of the local authority put it in the position of having to make the local authority aware of emerging issues or examples of current difficulties or queries and then pass the answer back to clients. Whilst it sought to influence matters in support of the flexible use of funds by clients, its role as both Local authority provider and independent support to clients was viewed by some clients as compromising its ability to represent their case effectively.
6.123. An alternative perspective on this situation was however apparent in Edinburgh where the very independence of the LCIL and its avowed status as a user-led body was seen by some clients to distance it from the local authority and thereby reduce its influencing capability.
6.124. Each of the 3 services offered similar support to all SDS clients regardless of their needs and this approach may require further scrutiny to ensure that the greatest cost benefits are achieved. However, the increasing pressure that each was coming under to sustain current service levels at a time of increasing demand and, at best, standstill funding levels, highlighted the benefits that would accrue from increased funding.
Different Perspectives
6.125. In addition to considering the various stages and activities involved in SDS, a number of other perspectives emerged which offer further insights into the situations faced by SDS clients and their informal carers.
Children as SDS clients
6.126. The situation of child SDS clients reflected some important differences to the arrangements relating to adults.
6.127. In the Borders and Fife children access SDS via a top-sliced capped budget. In Fife the current budget is approximately £300k, a budget which has seen substantial growth in recent years. In Borders the budget is £30k, a figure which has remained static over recent years. In Edinburgh the same arrangements apply to children and adults in that any child's SDS package is funded as required from available operational budgets and its delivery is dependent upon sufficient levels of service and funding being available.
6.128. Contrary to the positive support for SDS amongst officials involved with adult services, there was an expressed nervousness amongst some children's services officials about opening up what one person described as 'the potential floodgates of child SDS applicants'. This attitude mirrored what others described as a strong cultural reluctance embedded within some children's services to go down the SDS route.
6.129. This attitude was apparently related to potential problems similar to those faced by adult services, namely unpicking block contracts and freeing resources locked in building based services. For others it was related to concerns about the impact upon the quality of delivered services if current initiatives to improve service quality were disrupted and the increased risks involved if vulnerable children were cared for in the relatively unregulated private PA sector.
6.130. It is unlikely that the extent and significance of these views have been captured by this study including, as it did, only 3 SDS clients under the age of 16 years. However just as the culture underpinning the local commitment to SDS for adults has been fundamental to generating momentum and support for its growth, so attitudes amongst professionals within children's services will be crucial to enabling increased access to SDS for children and young people.
The education contribution
6.131. The study sample included only a small number of child SDS clients and although their education was not viewed by their parents as part of the SDS world, matters relating to their education loomed large in how they and their parents experienced their relationship with statutory services.
6.132. Despite some children having very substantial levels of need, all of those included in this study attended school at some point in their young lives, often in the face of very considerable practical difficulties. In every case however the arrangements that were put in place to support them were not sustainable and parents felt that there was insufficient awareness of and sensitivity towards their needs.
6.133. Many of the children experienced fluctuating health and this meant that infections and bouts of illness interrupted their attendance at school, sometimes for prolonged periods. As a result all of the parents were sympathetic to the difficulties faced by the schools but most still felt unhappy about what they experienced as the poor communication and absence of suitable home-based educational alternatives.
6.134. In the majority of cases there seems to have been little consideration of the educational perspective in planning the SDS package, other than in having to allow for PA support in school and related transport/escort arrangements. However in one case consideration of incorporating a home education component within a SDS package had been mooted.
Informal carers
6.135. Throughout this study the researchers sought to identify wherever possible comments and issues important not only to SDS clients but also their family carers.
6.136. Without exception, those family carers who contributed to the study were both passionate and committed to ensuring that the SDS arrangements for their partner, son or daughter provided the best possible service.
6.137. This focus meant that they gave their own needs a relatively low profile, except where the challenges they faced were clearly having a detrimental impact upon their ability to sustain their support.
6.138. Time and again the priorities, issues and concerns expressed by clients were mirrored in the comments of carers, who, far from having an agenda of their own, were in fact totally centred upon the needs and best interests of the person they were caring for.
6.139. If there were any differences from the expressed views of clients, they tended to be in the extent of their expressed gratitude for the (partial) lifting of the care burden, the frustrations they experienced when trying to get what was needed from a particular funder/agency and their determination to ensure that their loved one should secure the best support possible. It would be hard to imagine a more dedicated and unsung group of people. As one parent put it:
'…My husband has had to give up work and is now on benefits and is unfit to work with stress-related physical problems. We do whatever is required, whenever it is needed. Sometimes there are problems in getting nurses to work particular shifts so we have to provide night cover for 2 or 3 nights in a row. Not being listened to and losing our ability to provide for our children is the hardest thing but nevertheless it's so reassuring to be able to care for Freda at home' Case study 4
BME considerations
6.140. The sample profile for this study provided the researchers with little opportunity to interview clients or carers from BME populations in the 3 areas. However, the one case where this was possible was illuminating, in that the family carers were clear that their ethnicity had been irrelevant to how they had been treated by the system but that it had been reflected appropriately in the sensitivity with which their daughter's cultural and linguistic needs had been accommodated.
The health contribution
6.141. In most of the case studies involving health care the SDS clients required ventilator and in some cases tracheotomy care. The local NHS specialist support team, usually based at a local hospital, provided ongoing advice, PA training and support as required, for this aspect. This specialist support was considered by clients to be fundamental to the viability of their SDS support arrangements but this support itself was in fact a delivered service and not provided through SDS.
6.142. Most of the day to day care tasks associated with these needs were carried out by PAs who had received initial training from experienced nurses and the NHS contributed to meeting these costs. The health contribution topped up DP and ILF payments so that periods of the day or night that might otherwise not be covered would be so. In some of these cases the clients were clear that the health contribution was to pay only for nurse-qualified carers, in others this restriction did not apply.
6.143. In one particular case the NHS provided nurse care in the home through its own in-house outreach service. This was the principal care service provided to the child client and was supplemented by a DP to fund supplementary nurse-qualified respite cover. Here the parents found that the delivered health input was like any other traditional delivered service which they were unable to influence and which was unable to respond to their child's particular priorities.
6.144. However in this case one of the family carers noted two very helpful sources of advice and support that they had identified, unfortunately only after a long time of struggling to get what they needed:
'The Patient Liaison Officer at the Sick Kids hospital understands how the system works and is able to call meetings and get issues addressed when needed. Her support has been considerable and much valued. We have also recently become aware of the Special Needs Information Point ( SNIP) at the Sick Kids which provides a huge amount of really useful information and advice for parents of youngsters with special needs'. Case study 4
6.145. Almost all of the SDS clients in the study continued to receive traditional district nurse, occupational therapist and physiotherapy support on a regular basis, when they needed to. Again, most clients saw this care as being an integral part of their SDS package and yet it was in fact a normal delivered NHS service:
'Following an admission to hospital when Fred contracted MRSA, additional cleaning support was provided to ensure adequate cleaning around the house. This is not funded via Fred's DP but it probably works better under the current arrangements so there's no point in changing it.' Case study 10
6.146. A particular difficulty for clients wishing to purchase nurse-qualified PA care through health cash payments was the shortage of suitably skilled and experienced nurses to provide for the needs of clients with more complex medical needs, from within the pool employed by nurse agencies. In addition the cost charged by these agencies to individual purchasers was considerably higher than the charge to the NHS when it needs to purchase in this way. As a result the cost of nurse-qualified SDS provision would be higher than a delivered NHS service.
6.147. Overall clients tended not to differentiate between health funded PA care and the traditional delivered health services that operated alongside SDS funded elements of their package. Where these traditional services complemented and fitted easily alongside the personalised elements things worked well. Where they did not sit easily with the client or carers expectations, they were said by interviewees to have the potential to undermine the viability and sustainability of the whole package.
Clients with mental health conditions
6.148. The researchers faced a significant challenge in identifying clients with mental health needs who were in receipt of SDS funding. Only 2 such clients were included in the sample. In some respects this is no surprise as it mirrors the national picture of relatively low take-up of SDS by this group of clients combined with the historical emphasis upon hospital-based care has also served to limit take-up.
6.149. Access to SDS for mental health clients with all but the highest levels of needs is also likely to be impacted by the application of local authority eligibility criteria and the associated absence of significant number of mental health clients with multiple funded support packages was another factor which reduced their availability for the study.
6.150. However, the clients with mental health conditions interviewed for this study were both absolutely clear that SDS was enabling them to live a much fuller life than would otherwise have been possible.
Clients with a learning disability
6.151. People with a learning disability have benefited in recent years from some substantial national policy milestones such as the Same As You review. These have served to ensure that people with a learning disability are increasingly included in the communities where they live, have better information about their needs and available services and have more control over their care.
6.152. In the context of this study most of the clients with a learning disability also had a physical disability and the researchers were unable to identify any issues relating specifically to their learning disability needs.
6.153. It is important to note however that at least one of the local support services involved in the study reported that clients with a learning disability require considerably more support than people with other needs and that as a group, they present a growing challenge to the service.
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