British Journal of Social Work (2012) 42, 147–164
doi:10.1093/bjsw/bcr039
Advance Access publication April 14, 2011
Exploring the Temporal Aspects
of Direct Payments
Hilary Arksey and Kate Baxter*
Dr Hilary Arksey is Senior Research Fellow in the Social Policy Research Unit at the University
of York. Her main research interests lie in the area of community care, in particular informal or
family care-giving. Dr Kate Baxter is Research Fellow at the Social Policy Research Unit at the
University of York. Her research interests are choice and personalisation for adults and older
people.
*Correspondence to Dr Kate Baxter, Social Policy Research Unit, University of York,
Heslington, York, YO10 5DD, UK. E-mail: [email protected]
Abstract
In the last two decades, advanced welfare states have introduced ‘cash-for-care’ schemes
whereby eligible individuals receive money or vouchers to purchase care rather than
receive in-kind help at home. Evidence suggests that such schemes give recipients
greater choice and control. In England, direct payments, individual budgets and personal budgets are different types of cash-for-care. This article reports new empirical
research which takes a longitudinal perspective about the use of direct payments.
Study participants were interviewed three times between 2007 and 2009. The findings
are organised into six themes: journeys in and out of direct payments; on-going
contact with social services; changing service user circumstances; self-development
and learning through time; impact of direct payments on families; and changing
relationships. The findings show that direct payments recipients need support in understanding the long-term issues that might arise, as well as on-going monitoring and
advice from knowledgeable practitioners as their situations, needs and capabilities
change through time. On the basis of the evidence, suggestions are made to help
boost take-up rates and subsequent levels of satisfaction. The findings have implications
for the future roll-out of personal budgets, since direct payments are likely to be a
common form of deployment.
Keywords: Direct payments, personal budgets, longer term, change, time
Accepted: March 2011
# The Author 2011. Published by Oxford University Press on behalf of
The British Association of Social Workers. All rights reserved.
148 Hilary Arksey and Kate Baxter
Introduction
Traditionally, welfare state delivery of social care for disabled and older
people has tended to consist of services in kind. However, as a review of
the national and international literature showed, the last two decades
have seen increased interest in many advanced welfare states in the use
of ‘cash-for-care’ schemes (Arksey and Kemp, 2008) in which eligible individuals receive cash payments, vouchers or personal budgets to purchase
care rather than receive in-kind help in the home. Cash-for-care schemes
have been introduced in conservative welfare states like Austria and
Germany, social democratic nations such as Finland, and southern
European countries, such as Italy. They have also been established in
countries such as Canada and America with liberal welfare regimes,
where administrations have tended to be more market-oriented in their
approach to benefits and services.
In line with other countries, the UK government has prioritised the delivery of personalised, responsive and flexible social care, whereby individuals
have greater choice and control over the way their needs are met. A number
of different cash-for-care schemes fall under the umbrella of personalisation, including cash direct payments, individual budgets (Glendinning
et al., 2008) and personal budgets (Leadbetter et al., 2008).
Personal budgets involve being clear with people about the allocation of
funding available to meet their needs. An underlying principle is that personal budget holders have maximum choice over how the money is spent to
best achieve desired outcomes, as well as choice over how much control
they want of the money itself (Glasby and Littlechild, 2009). Personal
budget holders can take their budget as a direct payment, ask the council
to commission services on their behalf, or use a combination of the two.
Findings from the evaluation of individual budget pilots showed the
majority of people managed their budget as a direct payment (Glendinning
et al., 2008). This suggests the most common method of deployment for
personal budgets may be as direct payments.
Direct payments were introduced first under the 1996 Community Care
(Direct Payments) Act (Department of Health, 1996). The money, the
cash equivalent of conventional service provision, can be used to pay for
services and equipment to meet the individual’s assessed needs. Direct payments recipients can use the money to pay for care workers from an independent or voluntary sector agency, or can become an employer and recruit
a ‘personal assistant’ to provide them with support. According to Glasby
and Littlechild (2009), a key difference between personal budgets taken
as direct payments and those not is that the latter can be spent on anything
that can be shown to meet the budget holder’s assessed needs; direct payments cannot be spent on public sector services or close family members
living in the same household.
Exploring the Temporal Aspects of Direct Payments 149
While direct payments recipients can face difficulties with the administration, management and monitoring requirements of cash payments
(Glasby and Littlechild, 2009; Clark et al., 2004), there is a growing evidence
base to show that, if such difficulties can be overcome, direct payments have
the potential to promote: choice and control; flexibility in how services are
provided; and the delivery of better-quality services (Dawson, 2000; Clark
et al., 2004; Leece and Bornat, 2006; Carers UK, 2008; Glasby and
Littlechild, 2009). It has also been argued, however, that the philosophy
of personalisation, which, in practice, includes direct payments, should
not be accepted uncritically; potential downsides of direct payments
include both the undermining of collective provision of services as people
opt for individually provided support and the impact on the social care
workforce as the number of (and demand for) paid but unregulated
personal assistants grows (Ferguson, 2007; Sawyer, 2008; Scourfield, 2005).
Notwithstanding the evidence above, a major gap in research to date on
direct payments (or other cash-for-care schemes) is that it has been based
on ‘snapshots’ in time or one-off interviews with recipients shortly after
starting to use direct payments. Whilst valuable, cross-sectional approaches
are unable to distinguish between the short and longer-term problems and
benefits associated with direct payments thus, as Spandler and Vick (2006)
have noted, there is a need for longitudinal research looking at outcomes
over an extended period of time.
The paper draws on data from a longitudinal study that focused on
‘Choice and Change’ from the perspectives of disabled people living with
some form of fluctuating or degenerative health condition. They were
asked to talk about a choice that was particularly important to them.
Many individuals spontaneously decided to talk about direct payments.
The aim of this paper is to show how these people’s experiences of direct
payments changed over time and to present associated lessons. The paper
concentrates on direct payments, as these were the main form of
cash-for-care available at the time of data collection. However, the findings
have important implications for other cash-for-care schemes, including personal budgets.
To the best of our knowledge, this is the first time that longitudinal
research findings have been reported to shed light on the temporal
aspects of policy, practice and first-hand experiences of using direct payments in England in the context of changing health and life circumstances.
Methods
This paper is based on findings from a sub-sample of 30 individuals who
chose to talk about direct payments during interviews for the ‘Choice
and Change’ study. This was a qualitative longitudinal study of the experiences of, and consequences for, disabled young people, adults and older
150 Hilary Arksey and Kate Baxter
people of exercising choice in the context of changing circumstances.
The full study sample comprised ninety-eight participants from the
following groups:
†
young people with life-limiting conditions (e.g. Duchenne Muscular
Dystrophy) and their parents;
†
working-age people with fluctuating conditions (e.g. multiple sclerosis, lung
disease) or the sudden onset of poor health (e.g. stroke, heart attack);
†
older people with fluctuating conditions or the sudden onset of poor health.
Multi-centre research ethics approval for the study was obtained. Participants were recruited from organisations covering different local authority
areas in England. Recruitment organisations included: children’s hospices;
the Family Fund Trust; condition-specific voluntary organisations and
support groups; hospitals; local authority adult care services departments;
minority ethnic community groups; an independent recruitment agency;
and ‘snowballing’ from other study participants.
Each participant was interviewed, using semi-structured topic guides,
three times between 2007 and 2009. Participants were asked in the first
two interviews to discuss in detail a recent important choice they had
made. In addition, a supplementary topic guide was employed with everyone whose choice related to direct payments. Questions in the direct
payments-specific topic guide were developed from a review of the literature on cash-for-care schemes (Arksey and Kemp, 2008). In part of the
second and the majority of the third interviews, participants reflected on
the choices discussed in earlier interviews. Interviews were digitally
recorded and transcribed in full.
To help understand longer-term experiences relating to direct payments,
there was a need for a longitudinal analytical strategy. Summary ‘case profiles’ (Thomson and Holland, 2003) that aimed to reduce the data into manageable chunks and also capture the temporal dimensions of each person’s
account were charted direct from interviewees’ transcripts. Each row in the
charts represented one participant; the cells in each column contained summaries of relevant data from each individual’s series of interviews, focusing
on: opting for direct payments; implementing direct payments; outcomes of
direct payments. The authors independently identified emergent themes
from these charts, as well as convergence and divergence of the subsample’s experiences, behaviours and opinions concerning direct payments
through time.
Sample characteristics
This paper uses data from the sub-sample of thirty people who chose to
discuss direct payments in at least one of their interviews. The sample
Exploring the Temporal Aspects of Direct Payments 151
comprised five young people and thirteen parents from fifteen different
families, plus twelve working-age adults and older people.
Young people could opt to take part in the study whether or not their
parents declined, and vice versa. Where both a young person and their
parents took part, interviews were undertaken independently of each
other; thus, one may have chosen to discuss direct payments and the other
not. This resulted in two families in which just the young person spoke
about direct payments and a further ten in which only the parent(s) discussed
direct payments. In three families, both the parent(s) and disabled young
person opted to discuss direct payments in at least one interview. Therefore,
the sub-sample providing data on direct payments comprised sets of interviews with eighteen people from fifteen families. Table 1 gives the
numbers of families that discussed choices relating to the receipt, arrangement or rejection of direct payments, respectively.
There was more than one disabled young person in two of these fifteen
families. In both of these families, only the parents spoke about direct payments and both talked about decisions not to opt for them. In one of the
families, this decision related to both disabled children and, in the other,
it related to the youngest of three. The characteristics of all fifteen families
are given in Table 2. The families lived in various local authorities throughout England. Three young people moved to universities outside their home
local authorities during the course of the study.
Table 3 gives the characteristics of the sub-sample of the twelve disabled
adults and older people who discussed direct payments. The majority were
Table 1 Family groups where direct payments for young people were discussed
Young people only
Young people and parent(s)
Parent(s) only
Total number of families
In receipt of direct
payments
Arranging direct
payments
Rejected direct
payments
Totals
1
1
6
8
0
0
2
2
1
2
2
5
2
3
10
15
Table 2 Characteristics of young people’s families
Young females
Young males
BME
Young person lived alone
Young person lived with family
Total number of families
1
In receipt of direct
payments
Arranging direct
payments
Rejected direct
payments
0
8
0
2
6
8
1
1
0
0
2
2
31
51
1
0
5
5
Includes three brothers from one family and a brother and sister from another.
152 Hilary Arksey and Kate Baxter
Table 3 Characteristics of adults and older people who discussed direct payments
Interviewees
In receipt of direct
payments
Arranging direct
payments
Rejected direct
payments
Working-age adults
Older people
Females
Males
BME
Lived alone
Lived with others
Total adults and older people
8
2
8
2
3
3
7
10
0
1
0
1
0
0
1
1
1
0
0
1
0
0
1
1
working-age adults. The participants were based in local authorities
throughout England. One woman of working age moved to a different
local authority area and then back to her original area during the study;
another was considering moving to a different area.
Findings
In what follows, we present data on the emergent themes related to direct
payments over an extended period of time.
Journeys in and out of direct payments
Over the course of the study, people journeyed in and out of using direct
payments. These journeys were influenced by knowledge of the administration and accounting involved in direct payments management and the
level of support available to undertake this. Some people felt the process
was straightforward:
But there’s nothing to do, is there? . . . Bill comes in . . . cheque goes out
(OF-206, older woman).
Others felt they had little knowledge and were unsupported:
That is the major downfall of direct payments, they give you the money and
that’s it (YP-024, parent of young man).
However, these views and the level of support received could change over
time. For example, a disabled mother of three initially refused direct payments in favour of conventional home care but subsequently opted for
direct payments when she discovered she could have administrative
support from the local authority:
Exploring the Temporal Aspects of Direct Payments 153
So I just let them do it. They send out a wage, I write the wage, the cheque
out for the lady and that’s it. So yeah. So it’s like, it’s best of both worlds.
I don’t have the headache, but I have the control, which is fantastic
(AF-110, working-age woman).
Later, her needs increased and she could no longer physically manage the
paperwork. Social services supported her to continue to use direct payments by taking over tasks such as writing cheques, but left the service
user in control of decisions.
In contrast, others chose not to use direct payments because they
expected the paperwork would be too stressful and lacked knowledge
about support to help manage it. Moreover, the longitudinal nature of
this research has highlighted how experiencing a lack of support resulted
in people ceasing to use direct payments after relatively short periods of
time. For example, a parent fell behind with record keeping due to work
and other family commitments and, despite asking for help, was offered
no support from social services. She subsequently stopped using direct payments but later found out that a local independent living scheme (ILS)
would have helped. With hindsight, she would have persevered with
direct payments had she known about the ILS support. Another parent
reverted to conventional care for her daughter after a stressful six months
using direct payments. Over the course of the study, she discovered her
family were ‘guinea pigs’, being among the first in the local authority to
use direct payments and reportedly receiving inadequate support.
Continuing contact with social services
Participants raised concerns about the level and frequency of continuing
contact with social services after opting for direct payments. Specifically,
there were variations across local authorities in the monitoring of direct
payments spending and interviewees questioned the commitment of
social service departments to on-going support. This caused problems for
direct payments users who discovered their needs for advice changed
over time. More commonly, however, the perceived lack of contact raised
issues about appropriate financial monitoring and the use of direct
payments.
Most participants who raised these issues felt that, once they had signed
up for direct payments, they were left to their own devices. It was common
not to have received any routine monitoring from social services since the
initial review a few months after beginning to use direct payments.
A major consequence of perceived insufficient contact over time was
service users feeling uncertain about the use of their direct payments.
This, in turn, could result in unspent funds. For example, a working-age
female had had no contact since her initial three-month review, sixteen
months earlier:
154 Hilary Arksey and Kate Baxter
I’ve told them I’ve got £3,000 in that account sat there, this was about last
November, and I said ‘Surely I’m not meant to be stock piling money in
this account, what you put in to pay [personal assistant] should come out’
. . . they never got back in touch with me. So it’s a good job I’m a good
lass otherwise I’d be in flipping Las Vegas (AF-107, working-age woman).
Coincidentally, she was told by the organisation managing her personal
assistant’s wages to stop completing weekly timesheets for her because
everything was in order. Thus, this service user had a large under-spend,
no appropriate paperwork and no monitoring. Similarly, a parent of a
young person accumulated £12,000 in her direct payments account and
had to approach social services for advice. She was told to increase the
number of hours the personal assistant supported her child, but to pay
back £5,000. Taking money back from people made them feel they were
being punished for being economical or for not understanding the system.
Furthermore, insufficient continuing contact with social services left
direct payments users who experienced short-term changes in their circumstances uncertain about what to do. This was illustrated by a woman with
multiple sclerosis who was admitted to hospital during a relapse and discharged home with free care for six weeks. She felt guilty that she was
receiving direct payments at the same time as temporary free care. She
was also accumulating direct payments money that she usually used for
horse riding—something she was unable to do during her relapse. She
was not monitored regularly but, instead of asking for advice, opted not
to contact social services in case they took back some of her direct payments
funds. Thus, direct payments users with no contact from social services for
extended periods of time might become less likely to take the initiative and
make contact themselves. Also, poor financial management by local authorities can lead to increased responsibilities for recipients.
Changes in service user circumstances over time
Inevitably, study participants experienced changes over the three years of
data collection. The changes that affected direct payments packages were
more likely to be related to changing life situations than medical conditions.
These changes raised questions about the responsiveness of direct payments arrangements and the portability of care packages. For example,
four participants decided to go to university. Their changing circumstances,
which involved leaving the family home, consequently increased their needs
for support. Two young people from different local authorities went to university and required full-time care packages. These were funded through a
combination of direct payments and Independent Living Fund monies. A
common thread running through both interviewees’ accounts was the lack
of social workers’ knowledge about setting up twenty-four/seven care
packages for young people to be delivered in other local authorities:
Exploring the Temporal Aspects of Direct Payments 155
It was totally a new experience and I don’t think anybody within Social Services at [home city] had ever heard of it. I mean even the people at the top I
was speaking to; he was speaking to his bosses and their bosses and they
were like ‘Right, this is totally new’ (YP-009, young man).
Both young people turned to a private care management company that successfully undertook all the negotiations with social services departments
and other agencies on their behalf, including sourcing the necessary
finances and supporting them through the assessment process. The care
company also helped with recruitment and selection of personal assistants,
staff training and payroll administration. However, in both cases, the
arrangements were not finalised until shortly before the first term started
and interviewees described their experiences with social services as
fraught with difficulties and conflicts:
I mean my parents have fought for everything that they needed to fight for,
like getting my direct payments set up and it is quite a battle, cos it is a very
expensive thing to set up, a twenty-four hour package for somebody like
myself (YP-022, young man).
A working-age woman who managed her own direct payments package had
similar negative experiences. She lived with her partner but, after two years
of using direct payments, decided to move alone to a city nearly 200 miles
from home to complete a one-year higher degree. Initially, her home local
authority was unwilling to accept responsibility for her care package, claiming that it came under the auspices of the local authority in the university
city. However, the study participant successfully argued against this position. Despite having approached her local social services department for
an increase in her direct payments package six months prior to her temporary move, a revised package had not been agreed only days before she was
due to start her course. At this point, she and her partner took matters into
their own hands:
We went to sit in the offices of [local council], and we sat there for a
morning, it was very cold, and we said ‘We’re not leaving until we’ve
sorted out this package’ because this was days before I was due to leave
. . . I firmly believe, had we not done that, I could have been without help
for the first month of my time there and . . . something would have happened, I would have had a nasty injury or something, and I dread to think
how it would have gone (AS-120, working-age woman).
On completing her degree, she moved to a new flat in her home local authority because she was so concerned about the portability issues of her direct
payments package. Other study participants expressed similar worries. For
instance, anxiety about portability was an issue for a woman with a fluctuating condition who was keen to relocate to another part of the country but
she was frightened she might jeopardise her direct payments package. At
the time of her third interview, she was still weighing up the pros and
cons of the proposed move.
156 Hilary Arksey and Kate Baxter
Self-development and learning through time
Reflecting the notion of ‘expert patient’ (Department of Health, 2001;
Squire and Hill, 2006) and ‘expert carer’ (Nolan et al., 1996), the
study sample included examples of individuals who became ‘expert
direct payments recipients’ over time. These individuals were generally
those who chose to manage their direct payments package themselves,
rather than use a support agency. Skills that interviewees believed
they had acquired or developed were wide-ranging. Many related to
the core administrative and other responsibilities associated with
direct payments: completing time sheets, tax returns and understanding
payslips; developing recruitment, supervisory and interpersonal skills;
decision making in relation to setting up a care team; and organising
rotas.
In some cases, developing the necessary skills was a case of ‘learning the
hard way’, suggesting a need for improved and/or on-going support from
social services. For instance, one woman readily admitted at her first interview to having made mistakes when initially recruiting personal assistants.
At her third interview, she felt she had learned through her mistakes how
better to advertise and recruit. Another woman improved her understanding of payslips after accountants had overpaid her personal assistant for six
months without anyone noticing.
Interviewees talked about how task-specific skills derived from managing
direct payments have since been transferred to other arenas, such as arranging dental and medical appointments or organising overseas holidays from
scratch. One young person who acknowledged that he could be lazy and ‘let
things slide’ felt that his decision to take over management of his large-scale
direct payments package had taught him responsibility and routine. Even
more, he saw himself as acquiring skills that would be an asset for a CV
if/when he decided to look for paid employment.
Interviewees frequently talked about how, through time, direct payments
had boosted their levels of confidence. The consensus was that, initially,
they had sought advice and information from other people, either friends
or professionals. Three or more years later, as their direct payments
journey progressed, they were now confident enough to advise friends
who were newcomers to direct payments:
‘We’re the professionals and used to arguing our case for things’ (AS-120,
working-age woman).
Longer-term impacts of direct payments on families
One of the strongest themes to emerge from the longitudinal dataset related
to the longer-term impacts of direct payments on families in general and
(main) carers in particular.
Exploring the Temporal Aspects of Direct Payments 157
Interviewees spontaneously identified that one of the most important
benefits of using direct payments for a personal assistant was that it
reduced the pressure on family members, such as elderly mothers with
their own health needs. Husbands were also relieved of domestic jobs
that personal assistants undertook but care workers provided through conventional home care services did not. The consensus from interviewees was
that they gained in two ways: first, they enjoyed the time spent with their
personal assistant, especially if this involved trips out; second, their
emotional well-being improved because they knew that the demands on
their partners/relatives had reduced.
For example, one woman stated explicitly that the quality of her marriage
had improved because the relationship between her and her husband was
no longer just about housework and care-giving. Employing a personal
assistant through direct payments, she now enjoyed activities with her personal assistant that her husband would not want to do with her; likewise, her
husband had a life of his own. However, this situation materialised over
time; initially, she was very uncertain and described it as a ‘leap of faith’
that direct payments would work out for her. Almost two years later, she
reflected that direct payments had worked out far better than she had
ever expected:
I think direct payments are just amazing, to be honest, and I know that
I don’t pay anything because I have low income, but even if I was to
make a contribution. I would still pay for it because of the kind of quality
that our marriage has now improved to be (AF-107, working-age woman).
Perhaps the biggest impact of direct payments was on the parents, and particularly the mothers, of the disabled young people taking part in the
study—a phenomenon to which the young people themselves were sensitive. The latter talked about how, once they started university with a
large direct payments package, the care-giving role that their mothers
had provided over their childhood and teenage years had more or less disappeared. Even when they returned home in vacations, they now tended to
go back with their care team to support them, so, again, their parents were
no longer needed to provide care. The mother of a young person who had
started university but continued to live at home supported by a team of
three personal assistants spoke powerfully on this issue when she said:
You know, it’s been a bit of a difficult journey, specially for me because I’ve
had to learn to hand him over because I was his primary carer before. So it’s
been a bigger journey for me than anybody really, even [my son] (YP-014,
parent of young man).
Changing relationships over time
Interviewees recruited personal assistants through a variety of routes. Some
employed relatives, lifelong friends or friends of friends; others advertised
158 Hilary Arksey and Kate Baxter
and employed people previously unknown to them; and yet others chose to
‘poach’ their existing care workers from the independent agencies that had
provided their previous in-kind services.
Irrespective of the recruitment route, interviewees commonly described
how their relationships with personal assistants evolved over time along a
continuum with formal employee/employer relationships at one extreme
and ‘family-type’ relationships at the other. As the length of the relationship grew, so, too, did the bonds of friendship; personal assistants became
reclassified as ‘family’. As one woman said, ‘I love [my personal assistant]
to bits’. The father of a disabled young person likened the relationship to a
marriage.
Interviewees acknowledged that they could face dilemmas, though, as a
result of changing relationships with personal assistants. A handful of individuals declared that they found it difficult to discipline personal assistants
who, over the course of time, had become friends or even part of the family.
Speaking for others, one parent had this to say:
Um . . . difficult at times . . . especially when they’ve worked for a few years
it’s, it’s hard to be an employer and a friend to someone and, you know,
they’re doing very intimate things, they’re in your house, you know. So
that side of it’s hard, you know, if, if you need to sort of . . . reprimand somebody for something, it can be quite hard (YP-025, parent of young man).
Previous research shows that direct payments recipients commonly recruit
relatives or friends, and that this is one of the main reasons why people opt
for direct payments rather than conventional service provision (Blyth and
Gardner, 2007). However, the present study revealed that there can be
unforeseen consequences. As noted earlier, one interviewee was very
keen to relocate. Her personal assistant’s circumstances were such that
she would not be in a position to accompany her employer and the interviewee knew her personal assistant’s earnings were an important contribution
to household income. The personal assistant was also the interviewee’s
sister-in-law. The uncertainty created by discussing the possible move had
led to the personal assistant cancelling some home improvements. This
action increased the difficulties and guilt the interviewee was experiencing:
But [sister-in-law] is hard working and it’s just that I have this real moral
duty towards her, which I could do without really cos you know, I’m a bit
stuck now (AF-107, working-age woman).
Reflecting on this cautionary tale during her third interview, she was not
alone amongst the interviewees when she suggested that it would have
been helpful at the outset if social services had provided more information
on the short and longer-term implications of choosing the ‘right’ personal
assistant.
Exploring the Temporal Aspects of Direct Payments 159
Discussion and concluding comments
This paper has filled a gap in current research evidence by exploring the
positive experiences and challenges that disabled people of all ages face
in using direct payments over an extended period of time. Specifically, it
has shown how direct payments recipients develop recruitment and management skills but would value more continuing input from direct payments
advisers. It has illustrated also the changing roles within families and the
longer-term consequences of employing family members as personal assistants. The findings are highly relevant for the future as personal budgets are
rolled out, not least because (based on evidence from individual budgets
(Glendinning et al., 2008)) direct payments are likely to be the main form
of deployment. Even where personal budgets are not taken as direct payments, the findings are important. For example, if personal budgets have
the ‘lighter touch’ approach to review and monitoring that was seen with
individual budgets (Glendinning et al., 2008), issues associated with continuing contact will be especially pertinent. If the greater flexibilities
allowed in the use of personal budgets result in more family members
being employed as personal assistants, knowledge of the issues this research
has highlighted around family employment relationships can only become
more important.
The findings are based on a series of semi-structured interviews from a
sub-sample of participants taking part in a larger study. Although qualitative research is not generalisable in the same way as quantitative research
based on representative or random samples, as noted by Leece (2010) in
her recent study of direct payments relationships, it is generalisable
through its transferability (Miles and Huberman, 1994). For example, the
experiences and contexts of the participants described in this study will
be recognisable to social care practitioners and direct payments users
throughout the country. The findings are strengthened further by the fact
that participants opted to discuss direct payments precisely because these
were of the utmost importance to them, whether or not they elected to
receive direct payments and whether or not they received them continuously throughout the research. This longitudinal aspect, which provided
opportunities to explore life course changes as well as changes in participants’ experiences and opinions over time, adds further weight to the
results.
However, a limitation is that, despite participants taking part in the study
for up to three years, the stories presented are nevertheless only chapters in
their lives (Thomson and Holland, 2003). For example, we will not know
whether those people who had tried but stopped using direct payments
will try again, or whether those planning moves to different local authorities
will overcome issues around portability. Nevertheless, this study has gone
further than others to explore these temporal elements. The research
160 Hilary Arksey and Kate Baxter
reported here provides new empirical evidence, which, unlike other studies,
demonstrates the significance of changing life and health events in understanding uptake, usage and outcomes of direct payments from a longitudinal point of view.
The findings suggest that good outcomes across time are possible for
direct payments recipients. Many study participants described how direct
payments had offered them increased choice, flexibility and control,
which, together, gave them and their families an improved quality of life.
However, the findings also highlight opportunities for local authorities to
improve information, communication and long-term support for direct payments users; these actions might boost take-up rates and continued use of
direct payments, as well as subsequent levels of satisfaction with and
benefits from using both direct payments and personal budgets.
Raising awareness about longer-term issues
The experiences of direct payments recipients in this study illustrated that it
is important that advisers draw attention explicitly to potential longer-term
consequences of using direct payments at the outset, in addition to providing information about issues of immediate relevance. In other words, direct
payments users need to be supported in thinking about possible future scenarios: what if someone employs a relative or long-lasting friend and the
relationship breaks down; what if the direct payments recipient wants to
move to a different part of the country and the personal assistant, who is
dependent on the income, is unable to move, too; what if something goes
missing from the house? Raising these issues at the start of the process
will help potential users of direct payments or other forms of personal
budgets to think through possibly delicate moral dilemmas. It may also
be time-saving for advisers over the longer term if they are called upon
less often to help solve these issues once they have arisen.
Maintaining take-up rates through on-going advice
and monitoring
It is clear from the findings that recipients of direct payments find it unsatisfactory that some local authorities ‘sign them off’ once they have started
on the scheme. In contrast to Leadbetter et al.’s (2008) findings that people
using direct payments are frustrated by burdensome rules and regulations,
our results show frustration caused predominantly by a lack of continuing
support and clear guidance on the use of direct payments. Glendinning
et al. (2008) showed similarly that frequent monitoring of people with individual budgets stopped between six weeks and six months after initial
review. People need easy access to on-going advice and support as their
Exploring the Temporal Aspects of Direct Payments 161
situations, needs and capabilities change. Situations can arise in which
direct payments recipients need advice about their continued entitlement
to direct payments, or whether or not the award can be ‘topped up’ from
other existing sources of funding. In relation to fluctuating health needs,
recipients can sometimes be too frightened to ask for advice, as they do
not want to risk a reduction in their present level of award. Regular monitoring of, or at least more frequent contact with, direct payments or personal budget recipients could facilitate appropriate use of funds, avoid
large under-spends and provide a supportive environment in which users
of direct payments could ask for advice.
One reason for what is perceived as insufficient continuing support may
be that local authorities have prioritised meeting targets to increase the
level of uptake of direct payments by new recipients over continuing involvement with those people already receiving them. As these findings have
shown, lack of information and support for the financial and administrative
side of managing direct payments can lead to people reverting to conventionally provided services after relatively short periods of time. This prioritisation of targets over on-going support may continue with personal
budgets, especially as the aim is that 30 per cent of eligible people will be
using them by April 2011. However, it should be remembered that
people who have ceased using direct payments and those who have previously refused them or other forms of personal budget might be willing
to reconsider if they are provided with up-to-date information on improvements to schemes.
Practitioner knowledge
It goes without saying that social workers need to give up-to-date information to potential recipients about the use of direct payments, associated
management activities and any administrative support available. However,
it is clear from this evidence that direct payments recipients are active individuals who want to fulfil their potential in education, employment and
leisure activities. It is important, therefore, that social workers can also
provide advice or make arrangements that facilitate these goals. ‘Transition’ is known to be a difficult period for young people and their families
(Beresford, 2004). In this study, it was complicated further by social
workers’ lack of knowledge about how direct payments could be used to
arrange complex care packages to enable young people to live away from
home and thus realise their ambition of going to university. Social
workers and direct payments advisers need to be well informed about regulations and practice relating to portability issues for someone in receipt of
direct payments or other forms of personal budgets. They need to know
about different sources of funding that can be accessed; the responsibilities
162 Hilary Arksey and Kate Baxter
of respective local authorities if people undertake temporary moves; and to
be able to offer a response within an appropriate timeframe.
Flexibility
The findings show that changing circumstances can lead to increased or
decreased support needs and thus spending from direct payments accounts.
Over time, unspent funds can build up in accounts and, as discussed above,
direct payments recipients can be unsure about their use. Local authorities
that have rigid approaches to the amount of money a direct payments recipient can accumulate in their allocated bank account (or that do not communicate these rules) might consider how they can facilitate more flexibility
by enabling direct payments users to ‘carry over’ unspent money. This
would mean that people with fluctuating support needs could build up an
under-spend, which could then be drawn on when their needs increase temporarily. This kind of flexibility would negate the need for direct payments
users to ask permission from practitioners to alter agreed spending priorities or request increased funds, thus freeing up both service users’ and
practitioners’ time. It would also facilitate direct payments and other
cash-for-care schemes in offering increased choice and truly personalised
support.
Direct payments recipients’ ‘champions’
As well as having local authority ‘champions’ to promote direct payments
amongst potential recipients, the results of this study endorse those of
others (Blyth and Gardner, 2007), which suggest that local authorities
might benefit from recruiting ‘expert direct payments recipients’. Such
champions could share their experiences, outcomes and learning with
others considering the use of direct payments, as well as with social
workers. Potential recipients would be better informed about perceived
advantages and disadvantages, such as: the opportunity to acquire/further
develop skills, albeit at the expense of the work involved in managing
direct payments and (possibly) becoming an employer; and balancing
friendship and good relationships with personal assistants against the
potential downside of meeting changing needs and circumstances.
In conclusion, this paper has shown the issues that arise for direct payments recipients over the longer term and the reasons why they arise. It
has suggested a number of opportunities for local authorities and practitioners to consider in improving the longer-term experiences of direct payments recipients as well as those using other forms of personal budget.
These suggestions to improve practice in relation to direct payments may,
in addition, help to increase take-up rates of direct payments or personal
Exploring the Temporal Aspects of Direct Payments 163
budgets; offer more choice and truly personalised support; maximise the
benefits for recipients; and encourage recipients to remain on schemes
for longer periods of time in the face of changing needs and circumstances.
Acknowledgements
The research on which this paper is based was funded by the Department of
Health. The views expressed here are those of the authors and not necessarily those of the funding body. The authors would like to thank all current
and former members of the Choice and Change project team: Bryony
Beresford, Caroline Glendinning, Janet Heaton, Jane Maddison, Wendy
Mitchell, Parvaneh Rabiee, Tricia Sloper and Alison Wilde. We are grateful
to the study participants who made this research possible.
References
Arksey, H. and Kemp, P. A. (2008) Dimensions of Choice: A Narrative Review of
Cash-for-Care Schemes, York, Social Policy Research Unit, University of York.
Beresford, B. (2004) ‘On the road to nowhere: Young disabled people and transition’,
Child: Care, Health and Development, 30(6), pp. 581 – 7.
Blyth, C. and Gardner, A. (2007) ‘“We’re not asking for anything special”: Direct payments and the carers of disabled children’, Disability and Society, 22(3), pp. 235 – 49.
Carers UK (2008) Choice or Chore? Carers’ Experiences of Direct Payments, London,
Carers UK.
Clark, H., Gough, H. and Macfarlane, A. (2004) ‘It Pays Dividends’: Direct Payments and
Older People, Bristol, Policy Press.
Dawson, C. (2000) Independent Successes: Implementing Direct Payments, York, Joseph
Rowntree Foundation.
Department of Health (1996) Community Care (Direct Payments) Act, London,
Department of Health.
Department of Health (2001) The Expert Patient: A New Approach to Chronic Disease
Management for the 21st Century, London, Department of Health.
Ferguson, I. (2007) ‘Increasing user choice or privatizing risk? The antinomies of personalization’, British Journal of Social Work, 37, pp. 387 – 403.
Glasby, J. and Littlechild, R. (2009) Direct Payments and Personal Budgets: Putting
Personalisation into Practice, 2nd edn, Bristol, Policy Press.
Glendinning, C., Challis, D., Fernandez, J., Jacobs, S., Jones, K., Knapp, M.,
Manthorpe, J., Moran, N., Netten, A., Stevens, M. and Wilberforce, M. (2008)
Evaluation of the Individual Budgets Pilot Programme: Final Report, York, Social
Policy Research Unit, University of York.
Leadbetter, C., Bartlett, J. and Gallagher, N. (2008) Making It Personal, London,
DEMOS.
Leece, J. (2010) ‘Paying the piper and calling the tune: Power and the direct payment
relationship’, British Journal of Social Work, 40, pp. 188 – 206.
164 Hilary Arksey and Kate Baxter
Leece, J. and Bornat, J. (eds) (2006) Developments in Direct Payments, Bristol, Policy
Press.
Miles, M. B. and Huberman, A. M. (1994) Qualitative Data Analysis: An Expanded
Sourcebook, London, Sage Publications.
Nolan, M., Grant, G. and Keady, J. (1996) Understanding Family Care: A Multidimensional Model of Caring and Coping, Buckingham, Open University Press.
Sawyer, L. (2008) ‘The personalisation agenda: Threats and opportunities for domiciliary
care providers’, Journal of Care Services Management, 3(1), pp. 41 – 63.
Scourfield, P. (2005) ‘Implementing the Community Care (Direct Payments) Act: Will
the supply of personal assistants meet the demand and at what price?’, Journal of
Social Policy, 34(3), pp. 469 – 88.
Spandler, H. and Vick, N. (2006) ‘Opportunities for independent living using direct payments in mental health’, Health and Social Care in the Community, 14(2), pp. 107 – 15.
Squire, S. and Hill, P. (2006) ‘The expert patients programme’, Clinical Governance: An
International Journal, 11, pp. 17 – 21.
Thomson, R. and Holland, J. (2003) ‘Hindsight, foresight and insight: The challenges
of longitudinal qualitative research’, International Journal of Social Research
Methodology, 6(3), pp. 233– 44.