Counting the Cost of Choice and Control: Evidence for the costs of self-directed support in Scotland

5 FINDINGS 3: SURVEY OF DP USERS

Introduction

5.1 Previous research has indicated that Local Authorities are rarely aware of the full range of costs for social care that are borne by users themselves (Rummery, 2006; Bowes and Bell 2007; Pearson 2000). We therefore knew that Local Authority data alone was likely to miss some components and under-report the full costs of packages of care. This chapter presents summary findings from a survey of SDS users in three participating Local Authorities which was designed to address this gap in the cost data (for more detail see Appendix 2). Many social care users will also receive unpaid care and support from family and friends and this was also considered in the survey of users.

5.2 We were advised by the Local Authorities that, although our interest was in the full range of possibilities for SDS, we should couch our questions in terms of DPs as survey recipients would not necessarily be familiar with or associate the payments they received with the former term. The report therefore looks at people using DPs to purchase services which is one option under the new Bill. It does not consider some of the other options such as 'Directing the available budget' which may become more prevalent in the future.

Results and discussion

Respondent characteristics

5.3 Response rates varied between Local Authorities, from 20% in Authority A to 38% in Authority C, with an overall response rate of 28%. The lower participation rate in Authority A could also have been the result of 'participation fatigue'; we were told by the Local Authority that this group had been invited to participate in a number of consultations over the past 24 months. DP user locations reflect the different rural/urban make-ups of the three Local Authorities, as described earlier in the report: Authority A is an urban area whereas Authority B and Authority C are primarily rural areas with a number of smaller population centres.

5.4 Overall, in 40 cases (68%) the respondent was a person receiving a DP, with a carer or informal supporter responding in a further 12 cases (20%) and a person formally managing DPs on behalf of the SDS user responding in 7 cases (12%). There were differences in the proportion of respondents of each type across the 3 participating authorities, which may have been a reflection of local practices in terms of the establishment of SDS. DP users were all adults. Participating authorities all advised us that they had very small numbers of SDS users under the age of 18 and therefore a decision was made not to include this group as a separate stratum in the sampling frame. Twenty-nine per cent of DP users responding to the survey were older people (aged 65 or older). Overall 41% of DP users were male and 59% female, although all three DP users aged 80 or older were female.

Respondents by user group

5.5 The main reason for receipt of DP was physical disability (40 cases, 69%), followed by learning disability (10 cases, 17%), age-related illness or disability and mental health needs. Service users with physical disability are over-represented and those with learning disabilities under-represented amongst respondents when compared with figures for SDS (DP) users across Scotland as a whole. Scottish Government (2011) noted 40% of individuals received SDS (DPs) due to physical disability, with 26% receiving SDS (DPs) due to learning disability, and a further 3% having both physical and learning disabilities. The longer history of access to DPs for those with physical disabilities explains the relatively high mean time for which respondents' have been in receipt of DPs (mean 6.0 years, s.d. 4.9 years). The wide variation in length of package echoes the national position. According to Scottish Government (2011) figures, 29% of all SDS (DP) packages in Scotland existing at 31 March 2011 have been in place for less than a year, whilst 19% of SDS (DP) packages have been in place for greater than 5 years.

Respondents assessment of abilities

5.6 Respondents were asked to provide an assessment of their abilities to carry out 18 different activities spanning mobility inside and outside the home, personal care and more general tasks requiring physical and/or manual dexterity, and other domestic activities. This information was requested in order to provide data on the relationship between levels of need as reflected by ability to perform instrumental activities of daily living and size of DP package which would inform the microsimulation model. As might be expected, there was wide variation in individuals' abilities although most respondents' experience appears to be one of limited mobility inside the home and lack of independent mobility outside the home, reflected in the proportions never driving a car (90%) and either never accessing public transport or requiring a lot of help to do so (72%). Appendix 2 provides more detail.

Value of DP packages

5.7 Respondents were asked to indicate the value of their packages either in financial terms or in hours. Sixteen respondents provided no indication of the value of their package and of these 7 indicated that they did not know this information. Where information was provided there was considerable variation in the value of respondents' DP packages as expressed in either hours per week or in financial terms. Tables 5.1 and 5.2 provide indications of means, standard deviations, maxima and minima. Some respondents provided both hourly and financial values for their DP packages.

Table 5.1 Respondents' weekly financial value of SDS (DPs)

Weekly financial value of Direct Payments (n=25)	(£)
Mean	391.46
Standard deviation	515.57
Minimum	21.12
Maximum	1800.00

Table 5.2 Respondents' weekly time value of SDS (DPs)

Weekly time value of Direct Payments (n=23)	(Hours)
Mean	24.3
Standard deviation	31.8
Minimum	3
Maximum	170

5.8 In general, respondents' DP packages have been stable over time, with 52% of those providing data in response to questions on changes to their DP packages having experienced no changes other than normal uplifts in hourly rates. A further 20% had experienced a single change, and 28% had had their packages changed more than once.

5.9 The most frequently advanced reason for change of DP package was deterioration in the respondent's condition which triggered a need for increased support, as illustrated in the following quotes:

'I was given extra hours as my condition has deteriorated.'

'Health and ability improved so package reduced. Following a severe stroke ability reduced so package increased.'

5.10 A number of respondents highlighted changes in their domestic arrangements, for example 'Increased amount to allow for living away from home. Support moved from 20 hours per week to 24/7', and in several cases the need for formal services to replace previous informal support, for example:

'Carers replaced hours done by my Mother who is now unfit and elderly.'

'My condition deteriorated and was increased then (my husband) who is my main carer took a heart attack, so I needed more help then re ironing and housework.'

How respondents used DPs

5.11 Respondents were asked about the types of support for which they used their DPs. Table 5.3 illustrates the main categories of support purchased. The majority of respondents (71%) used their DP to employ a carer or PA to provide personal care. Figures from the Scottish Government (2011) indicate that in 2010 39% of all packages of DPs involved a PA. However, the figures do not distinguish which type of support the PA provides and the authors note that this data was not provided for all DPs. Section 2(28) of the Regulation of Care (Scotland) Act 2001 defines 'personal care as 'care which relates to the day to day physical tasks and needs of the person cared for (as for example, but without prejudice to that generality, to eating and washing) and to mental processes related to those tasks and needs (as for example, but without prejudice to that generality, to remembering to eat and wash)'. We did not define 'personal care' in the survey questionnaire and as a result some respondents may have interpreted this term more widely than the statutory definition.

5.12 More than half (57%) of the survey respondents purchased help with leisure activities. Other more frequently purchased services included help with shopping (44%) and transport (39%). In addition, under the heading of 'Other' different individuals indicated that they had purchased: domestic support; support to develop life skills and to attend work; emotional support, mediation, and access to other services; day services - payment towards costs as 1:1 required; a deaf blind guide communicator; twice-weekly outings; subscriptions/fees to support organisations; time at specialist educational/training facilities; cleaning services; and transport services.

Table 5.3 Support services purchased with DPs

Type of support	Number (percentage) of respondents using DPs to purchase this
Personal care from an employed carer (e.g. personal assistant) (n=48)	34 (71%)
Help with leisure activities (n=49)	28 (57%)
Shopping (n=48)	21 (44%)
Transport (n=46)	18 (39%)
Personal care from a private agency (n=49)	16 (33%)
Meal services (cooking, preparing and/or providing meals) (n=47)	13 (28%)
Help with work or study (n=45)	7 (16%)
Personal care from a Local Authority (e.g. home care) (n=43)	5 (12%)
Accommodation (n=43)	2 (5%)
Private health services (n=45)	2 (4%)
Child care (n=43)	1 (2%)

Note: Respondents were asked to indicate all types of provision purchased

Weekly pattern of DP support

5.13 The survey questionnaire also asked about the days on which the different types of support purchased were provided. There were differences in the data provided in response to this and to the earlier questions about the purchase of services and support. For example, as Table 5.3 shows, 34 respondents indicated that they purchased personal care from an employed carer when given a choice of 'yes' or 'no', 14 respondents said they did not use their DPs to purchase such services, and 11 provided no answer. In the later questions asking about the days on which purchased services were provided, 38 respondents indicated receiving personal care from a PA, including 2 respondents who had previously indicated not purchasing this type of support and 2 respondents who had not provided an answer on the previous question.

5.14 It was relatively unusual for any services or support purchased using DPs to be provided 7 days a week. Nearly a third of respondents (32%) received personal care from a PA or carer purchased using their DPs and almost a fifth of respondents (19%) received meal services 7 days a week, but more normally the receipt of services purchased using DPs tended to be on days from Monday to Friday.

5.15 Respondents were asked to say how the time purchased for a particular type of support was divided by indicating the time spent on that type of support on each day of the week. In many instances respondents elected not to follow the instructions given in the survey on how to provide this data, and information was provided in a variety of formats, e.g. '15 hrs' or 'Various up to 8 hours per week, normally Monday and Thursday'. As a result, some of the data lack the precision which we had hoped for when deciding to use a survey data collection method and as a result are less useful for modelling purposes. In addition, responses to this question did not always accord with the data provided on the value of the respondent's DP package, e.g. the respondent would indicate that purchased support was provided '24/7', but the value of their DP package in terms of number of hours per week would be significantly less than this. This may be because the respondent had provided an indication of all support rather than only purchased support, and family provide support when the PA is not working.

Services purchased using other income sources

5.16 Respondents frequently used money other than their DP package to purchase support services. Table 5.4 shows the services purchased. Greater numbers of respondents declined to provide answers to this section than to the previous question about the purchase of support using DPs. This may be a disinclination on the part of respondents to talk about what they would consider to be 'private finances', but it could also indicate that some respondents did not / were not able to make a distinction between spending from separate sources of income. Fewer respondents used money other than DPs to purchase personal care from an employed carer (39% as opposed to 71% who purchased using DPs) or help with leisure activities (45% as opposed to 57%), but more respondents spent other money on accommodation-related services (40% compared to 5% spending DPs on this) and transport (60% compared with 39%).

5.17 In addition to the services in Table 5.4, respondents also listed purchasing a range of services under 'Other', including: domestic care; a regular massage; housework; cleaning; beautician; home services, 'e.g. cut grass, get in fuel, change a light bulb, e.g. non agency activity: not allowed to do'; and art therapy. Several respondents' comments suggested that they found it difficult to separate expenditures by support type or funding source:

'I have funding from Independent living fund I'm not sure what's being paid for what.'

'Benefits are used for all activity payments. DPs used solely for Carers' wages. Carers supervise or assist in all aspects of day to day life. I'm not sure if I've filled this in correctly'.

Table 5.4 Services and support purchased with money other than DP package

Type of support	Number (percentage) of respondents using money other than DPs to purchase support
Transport (n=35)	21 (60%)
Shopping (n=36)	18 (50%)
Help with leisure activities (n=38)	17 (45%)
Accommodation (n=35)	14 (40%)
Personal care from an employed carer (e.g. personal assistant) (n=44)	17 (39%)
Meal services (cooking, preparing and/or providing meals) (n=33)	9 (27%)
Personal care from a Local Authority (e.g. home care) (n=36)	9 (25%)
Personal care from a private agency (n=38)	6 (16%)
Private health services (n=32)	3 (9%)
Help with work or study (n=32)	2 (6%)
Child care (n=32)	1 (3%)

Note: Respondents were asked to indicate all types of provision purchased

5.18 Respondents indicated using a number of sources other than DPs for funding the purchase of services or support, as shown in Table 5.5. The most frequently used sources of funds were: Disability Living Allowance (DLA) / Attendance Allowance (AA), used by 59% of respondents; other disability-related benefits (usually identified as Independent Living Fund (ILF)), used by 25% of respondents; and pensions, used by 24% of respondents.

Table 5.5 Sources of funds other than DPs used for purchasing services or support

Source of money	Number (percentage) of respondents using this source of money to purchase support (n=59)
Disability living allowance/Attendance allowance	35 (59%)
Other disability related benefits (e.g. independent living fund/sickness benefits)	15 (25%)
Pension	14 (24%)
Money from family and/or friends, Salary, Other private income	8 (14%)
Carers Allowance or other carer related benefits	4 (7%)

5.19 We were interested in whether service users spent part of their DP package on the rental or purchase of items or on other non-service or support costs associated with their disability/illness. Few respondents provided data for this part of the questionnaire, and where provided it lacked detail. This may be because the three participant Local Authorities are at different but still relatively early stages in the implementation of SDS, and as such their service users have little experience of the more flexible use of funds envisaged by SDS. The data that we did collect generally reflected the more limited ability to spend funds creatively under previous DP regimes. Respondents provided ongoing costs for a range of different items including: the rent/hire of personal emergency alarm systems and communication aids; maintenance contracts for stair-lifts and hoists; one-off costs for the purchase of voice recognition software; recurring costs such as Employer's Liability Insurance for those employing PAs; and memberships for gyms or for charities supporting the respondents specific disability/illness. Respondents had purchased a range of goods and services with their DPs, including: beds, wheelchairs, recliner chairs, and TENS machines; bath lifts and 'wet room' conversions; various respite breaks; and moving and handling courses for employed carers.

Unpaid care

5.20 Respondents were asked about receipt of unpaid care or support using the same service/support categories. A large proportion of respondents provided no data regarding unpaid care. As the analysis of other data from the questionnaire has established, it is not safe to infer that a lack of response means that respondents actually receive no unpaid care. It is possible that support provided by family and friends is not thought of as unpaid care by the questionnaire respondents, or that respondents found it too difficult to quantify the contributions of those who provide them with unpaid care. Where data was provided, respondents often received significant numbers of hours of unpaid care across different support types. Respondents were often unable to separate out the time spent on different unpaid care and support activities. Unpaid care was often seen as 'filling in the gaps' left by purchased care as the following quotes in relation to personal care illustrate:

'Requires 24 hours supervision so any time not with day service or paid carer needs family support.'

'Daily within 12 hour period unless carers are with me 24 hours a day'.

Costs associated with setting up and maintaining packages

5.21 In the penultimate section of the questionnaire respondents were asked about paying for activities associated with setting up and maintaining support received as part of a DP package. Table 5.6 illustrates the responses to this section. Most respondents had not had to pay for or provide any of the listed activities themselves, either because they had not encountered these types of costs or because amounts were provided in the DP package to cover these.

Table 5.6 Paying for activities associated with setting up and maintaining support received as part of a DP package

Type of costs	SDS user has not had to pay these costs setting up or maintaining support paid for using DPs	This was paid for or was provided as part of SDS user's DP package	SDS user paid for or provided this him / herself	Did not answer
Recruitment costs (e.g. advertising for or interviewing carers, etc)	16 (27%)	18 (31%)	5 (8%)	20 (34%)
Ongoing costs of being an employer (e.g. payroll costs for a personal assistant)	14 (24%)	26 (44%)	4 (7%)	15 (25%)
Training for user (e.g. on employment law or bookkeeping, etc)	20 (34%)	3 (5%)	2 (3%)	34 (58%)
Training for carers (e.g. on helping with medication or on health and safety issues)	16 (27%)	10 (17%)	2 (3%)	31 (53%)
Other setup costs (e.g. using an accountant or bookkeeper to help manage Direct Payments)	19 (32%)	8 (14%)	4 (7%)	28 (47%)
Fees and other payments (e.g. Agency carer or personal assistant Introduction or placement fees)	20 (34%)	9 (15%)	2 (3%)	28 (47%)

Users' perspectives

5.22 As discussed at the beginning of this chapter, the purpose of the questionnaire was to gather data that would feed in to the overall research aim of providing macro-level financial and economic evidence on the actual and potential costs, benefits and impacts of an increase in the uptake of SDS in Scotland. The questionnaire was thus primarily concerned with costs and not with outcomes or exploring the link between the two. However, respondents were invited to comment on their perceptions of the value of their DP package and to make any other comments about whether the cost to them is different when using DPs to meet their care needs compared to the cost to them of receiving services arranged by their Local Authority.

Reasons for opting for DPs

5.23 In relation to the first question, why respondents opted for DPs, there were both 'push' and 'pull' factors involved in decision-making processes although the latter seemed to be the more frequently alluded to. In terms of 'pull' factors, respondents talked about flexibility, choice of not just service provider but individual carer, control, and the ability to 'shop' for care to get the most for the available money. 'Push' factors included the inability of provided care packages to meet respondents' specific needs and the desire to keep a service provider after changes to preferred suppliers by Local Authorities. The following quotes illustrate these factors:

'It allowed more flexibility to choose appropriate care. Direct social work provision was not appropriate since it did not provide the hours I needed.'

'Due to the nature and type of support I receive I prefer a regular support worker and due to [the Local Authority's] tendering process for care contracts most likely resulting in a company reliant on an ever changing group of agency staff, Direct Payments were the only other option that enabled me to retain the organisation providing my support services.'

'Choice, flexibility. Respite care provision did not meet my needs. Social care provision in day centre did not appeal so I have a PA to take me out and about.'

'Having complete control over my care package allows me to tailor my care around my lifestyle and more importantly gives me a sense of independence that my injury took away.'

'Because it made things easier and less complicated.'

Satisfaction with value of DPs

5.24 In the final section of the questionnaire, all 54 respondents who answered the question reported being 'satisfied' or better with the value of the services that they bought or paid for using their DP package, with 30% 'happy' and 43% 'very happy' with the value of services.

Comparison of DPs with arranged services

5.25 Respondents were then asked to comment about whether they experienced differences in costs to them between DPs and arranged services. A number of respondents indicated that they had never received arranged services and so could not comment. Where respondents had views, four main topics emerged. The first relates to the hourly rates for DPs and comparison with prevailing Local Authority or agency rates:

'I pay £11 per hour for Homecare to wash/dress me Mon-Fri mornings as I am only 56. Direct payments staff do not receive anything like this - approx £7 per hour. However, I am not allowed to use my Direct Payment for personal care (although I know others do this).'

'I only wish I could pay my carers more as they are underpaid for what they do for me.'

'The Local Authority control the amount that can be spent by costing any assistance provided. Costings are not at agency level costs. In theory the Local Authority would be cheaper than alternatives.'

5.26 The second issue for respondents relates to the degree of administrative work required in relation to DP packages:

'Administering the direct payment which involves completing a quarterly balance sheet is a complete pain as the provider bills 4-weekly but the council want calendar month returns.'

'You've got to be grateful for what you're given and when you find good care - it's always worth the money. They (Local Authority) can make it hard to get what you really need, but once you fight for it, it usually runs smoothly. My only gripe is the responsibility us as carers have with the administrative, accounts and organisation is huge. While caring for our adult son - we have to fit in meetings, draw up planners, label, add up figures, keeping a home, jobs and many more things. While there are 168 hours in a week - we have 50 covered - more than most but still a strain on us as parents. Money doesn't buy happiness especially when you've got to justify every penny til they'll give you it.'

5.27 The third area of concern related to a situation which arises when there are multiple funding streams and systems are not properly integrated, leading to an increased administrative burden:

'As [the respondent's] Mum, only carer and one who manages his finances and benefits, I find the system increasingly complex. He is given, I think, a generous DP. Then he has to give back a substantial amount from his benefits. Why cannot a DP be paid to him on a decreased amount, and not claimed back? I have been unhappy with this system, causing more unnecessary work and frustration to the unpaid carer'.

5.28 Finally, a number of respondents had views on perceived oversights in terms of what is paid for as part of the DP package:

'It's sometimes very difficult to get people to fill in an hour or 2 hours work, with the cost of petrol is sometimes not economic for them to do that. When I go for a meal it cost me two. There are a lot of hidden costs which really build up and this should be taken into account. After all we are saving the council a lot of money.'

Summary

5.29 The purpose of the survey was to gather data that would inform and be used in the modelling of the actual and potential costs, benefits and impacts of an increase in the uptake of SDS in Scotland. The findings from our analysis of the data collected from the user survey can be summarised thus:

• The questionnaire was distributed to 210 DP users across 3 Local Authorities and a response rate of 28% was achieved. The service users were all adults, with 29% aged 65 or over, and 69% of respondents received DPs because of a physical disability. Respondents received DP packages with a mean average of 24.3 hours or £391 per week;
• The services that respondents were most likely to spend their DPs on were: personal care from an employed carer (e.g. PA), (71%); help with leisure activities (57%) and help with shopping, (44%).
• Service or support purchasing patterns using money other than DPs varied from DP-related spending, with higher proportions of respondents purchasing accommodation related support (60%) and transport services (40%). Where respondents received unpaid care or support from friends and relatives this often amounted to more hours per week than the respondents' DP packages and tended to be provided more often at weekends;
• Few respondents paid for activities associated with setting up and maintaining support received as part of a DP package themselves. Most respondents either did not incur such costs or there were amounts included in their DP packages to cover them;
• Respondents were generally very positive about the benefits of DPs, the value of the services and support that they purchased with their DP packages, and the comparison with arranged services:

'My carer (self-employed) does a lot better job than Council carers - she gets more time of course but she has more training than Council carers - I would have nobody in if I had to go back to Council carers - this is all down to money.'