Health and Community Care Research Findings No. 1Direct Payments: The Impact on Choice and Control for Disabled People
Sally Witcher, Kirsten Stalker, Marnie Roadburg, and Chris Jones
This research examines the implementation of direct payments across Scotland and their impact on the choice and control which disabled people can exercise in their lives.
Implementation of direct payments in Scotland remains at a very early stage. Only 13 out of 32 local authorities have fully operational or pilot direct payment schemes with recipients. Only 143 people across Scotland are receiving direct payments. Eighty seven percent of recipients have physical or sensory impairments.
There are many variations in the way local authorities operate direct payments and there was evidence that many have a poor understanding of what constitutes a direct payments scheme.
Direct payments can dramatically increase the choice and control recipients exercise over their own lives, particularly when contrasted with limitations imposed by some local authority-provided services. They can promote social inclusion and contribute towards 'Welfare to Work' agendas. Recipients identified very few, if any, disadvantages to direct payments.
Direct payments can lead to a more efficient use of social work resources, while improving the quality of support to clients. However, concerns were expressed by social workers that 'opening the flood-gates' would increase expenditure and care managers' workloads. There are also fears about loss of control, the scope for fraudulent misuse of funds and the capacity of disabled people to manage direct payments.
The presence of an active local 'supporting organisation' was found to be critical to the successful implementation of direct payments, both from the perspective of recipients and of social workers.
The Community Care (Direct Payments) Act 1996 gives local authorities the power, but not the duty, to make direct payments to a disabled person so that they can purchase their own assistance. It restricts entitlement to people who are willing to accept and able to manage a direct payment, alone or with assistance. Scottish Executive guidance stipulates that the user must remain in control and accountable for the way direct payments are used. At the time the research was carried out it restricted entitlement to people aged 18 - 64 who were willing to accept and able to manage a direct payment alone, or with assistance. From July 2000 direct payments have been available to people aged 65 and over.
The aims of this study were to examine the effectiveness of current arrangements for direct payments in Scotland, to identify barriers to wider implementation and how these might be overcome. The research was carried out in two parts, beginning with a telephone survey of all unitary authorities in Scotland. From this, four authorities were selected for more in-depth examination. These were geographically diverse and at different stages of implementing direct payments.
Interviews or focus groups were conducted with a total of:
- 4 social work managers;
- 4 care managers;
- 4 local organisations with an actual or potential role in supporting direct payment recipients;
- 12 people receiving direct payments and 7 people employing personal assistants (PAs) but not via direct payments.
To ensure the study was as participatory as possible, a respondent validation meeting was held once the initial analysis of data was completed.
The picture across Scotland
The telephone survey revealed that local authorities have a poor understanding of direct payments and how these differ from third party schemes (whereby the payment is made through an agency), Independent Living Funds or Independent Living Schemes.
Only 13 of the 32 authorities in Scotland had either fully operational or pilot schemes. Four others reported having schemes with no recipients. There was variation in the way local authorities operated direct payments. Five applied eligibility criteria which were additional to those contained in legislation - these usually included that recipients must be at risk of entering residential care. Different local authorities funded direct payments from several different budgets The highest reported payment was £4,583 per month, the lowest, £153. Rates of pay and employment conditions for personal assistants (PAs) also differed significantly.
Of the 143 people across Scotland receiving direct payments, 125 (87 percent) had physical or sensory impairments and 17 (12 percent) had learning disabilities. One had Asperger's Syndrome. There were no mental health service users among recipients and none from minority ethnic communities.
There was near unanimous approval for the principles underlying direct payments. However, concerns were expressed about lack of funding to operate schemes, the implications for the future of local authority services and the role of social workers, the ability of disabled people to manage direct payments and the inadequacy of support available to them.
An overview of the four case study authorities
Arrangements in the four case study authorities differed considerably. It emerged that two authorities (A and B) were in effect, if not intention, operating third party schemes. In all four take-up was very low. However, this common outcome was shown to be attributable to different reasons.
Authority A had just started running a pilot scheme with a discrete budget, targeting new or unmet needs within a small geographical area. It was having difficulty identifying potential recipients and currently there was only one. Support was provided by a local voluntary organisation. Payments were currently being made to that agency in the form of a lump sum, and not to the disabled person. This was an interim measure while the authority calculated the unit cost of employment support.
Authority B initially claimed to have one direct payment recipient, who was in fact receiving support via a third party scheme. Meanwhile, it emerged that five other people were receiving direct payments but were not classed as such. There was no local supporting organisation; a payroll service and occasional advice was provided by a voluntary agency in another authority.
Authority C was running a pilot direct payment scheme with only 3 users. It had publicised the scheme, but information produced was felt by some respondents to be inaccessible and off-putting. There was no active supporting organisation. However, a local disability organisation had just received local authority funding to provide support services.
Authority D had 54 direct payment recipients. The vast majority in the main scheme had been automatically transferred from a pre-existing Independent Living Scheme. Only people at imminent risk of entering residential care were eligible and the supporting organisation knew of only 7 new recruits to this scheme. Direct Payments could only be used for services which the local authority purchased or was planning to purchase. They could not be used as a substitute for services which the local authority could provide and had staff to provide, as this was deemed to be paying twice. These rules did not apply to a separate pilot scheme targeted on people with learning disabilities, those with sensory impairment and mental health service users. This scheme had 6 recipients.
Views on the scope and operation of direct payments
A variety of attitudes and experiences gleaned from interviews in the four case study authorities provide further insight into reasons for low take-up and imply strategies to address them.
The scope of direct payments
The majority of respondents thought direct payments should be available to anyone who wanted them, but that it was vital that a range of support needs were met. Some had reservations, for example that elderly people might be particularly vulnerable to exploitation by relatives or that people with learning disabilities would be unable to exercise choice - this was disproved by respondents with learning disabilities.
Most respondents thought the ban on employing relatives should be lifted. This would be particularly helpful in sparsely populated rural areas. However, there were concerns that: relatives might 'take over'; the closeness of the relationship might make it difficult to identify and tackle problems; there would be potential for fraud.
Operational procedures were generally ill-defined and highly variable, sometimes within the same authority. Assessment of eligibility relied heavily on the attitudes of individual care managers and their interpretation of 'able to manage'. Approaches to publicity depended on whether the local authority's objective was to increase take-up or stem the supposed floodgates. Some care managers adopted a 'hands-off' approach to monitoring, seeing this as part of passing over control. Others remained heavily involved, particularly where no supporting organisation existed.
Some respondents saw direct payments as bringing additional costs, others saw them as bringing savings. One care manager commented that it was possible to buy twice as many hours support for the same money. Rates of pay for PAs were variable, but almost universally condemned by recipients and supporting organisations as inadequate. Recipients were stoical about having to contribute to the cost of direct payments, although many commented that they would be unable to afford any increase in charges. The potential for means tested charges to act as a disincentive to seeking paid employment was raised. The hidden costs of having a PA in tow, like travel expenses, cinema tickets, etc, were described as a major deficit.
Many recipients felt they had been thrown in at the deep end. Where a supporting organisation existed, its role was deemed invaluable by recipients and social workers alike. For recipients, they provide independent advocacy, a pay roll service, peer support and training. Without a supporting organisation, tasks were displaced onto care managers, adding to their workloads. Almost all social workers wanted more training and support. The interface between their roles and that of supporting organisations was not always understood.
Attitudes of social workers
The attitudes of individual social work staff, at whatever level in their department, could determine whether progress with direct payments schemes was facilitated or stalled. Social workers were deterred by perceived expenditure and workload implications, or because they didn't understand how different schemes inter-related, or by the prospect of losing control. However, there was evidence that experience of operating direct payments schemes increased social worker support for them.
The impact on recipients
'Independent Living' carries different meanings for different people. Central to many definitions was the importance of being able to exercise choice and control over care arrangements.
Some examples of their experiences of local authority-provided services illustrate the importance of choice and control for recipients. There were reports of insufficient hours of assistance being provided - one woman left unattended for several hours had been unable to go to the toilet. Support was unreliable and limited in terms of tasks that would be performed. Complete strangers showed up when regular carers were absent. With direct payments, recipients could choose who provided assistance, when and how it was provided, leading to significant improvements in the quality of support. In contrast, people transferred to direct payments from an Independent Living Scheme noticed little if any difference.
Direct payments had enabled people with learning disabilities to expand their social activities. One respondent expressed surprise that he could be the boss of his PA, rather than the other way round. He had selected the PA concerned, despite his key-worker preferring another candidate.
In addition to increasing choice and control over care arrangements, direct payments were shown to bring wider benefits. Many recipients had acquired new skills, one was now able to carry out voluntary work and give training sessions, while another had found and sustained part-time work. Direct payments could promote social inclusion, enabling recipients to participate in social and political activities. They brought benefits too for family members, who were previously relied upon to plug gaps in care arrangements. One respondent reported now being able to play a more active role in bringing up his children, bringing the family closer together. Very few disadvantages to direct payments were identified. Those that were identified related to problems with local policy and practice, rather than to direct payments per se.
Implications for policy and practice
To achieve the positive outcomes identified for recipients, their families, social workers and the community more widely, action is required on a number of fronts. The way in which direct payments schemes are set up is significant in either promoting progress or entrenching resistance.
The findings suggest four key areas where policy and practice could have an impact on take-up and on choice and control for service users:
current direct payments legislation and guidance: The definition of 'willing and able to manage a direct payment' needs clarification. A mandatory scheme whereby all authorities have the duty to develop and promote schemes would minimise inequities. A 'rights-based' scheme would guarantee that applicants have their applications assessed against clear and consistent criteria.
training, support and information for social workers: This needs to be improved and mechanisms put in place to enable local authorities to learn from each others' experience. This would help to break the current vicious circle of lack of experience and reluctance to engage with direct payments.
supporting organisations: Thought needs to be given to the development and funding of these as they play a critical role in equipping recipients with the skills and confidence to take on direct payments, and in preventing increases in care managers' workloads and concerns about resource limitations.
publicity and information: This was almost universally acknowledged to be inadequate. However this cannot be tackled until better systems are set up to cope with increased demand. Once these systems are in place there should be work in partnership with supporting organisations to produce and disseminate accessible information.
For the potential of direct payments to be fulfilled necessitates a fundamental shift in roles, responsibilities and power-relationships for all concerned. Social workers need to feel confident in relinquishing control and disabled people need support to assume control. It also implies a change in the culture of service delivery. To manage this change effectively will require leadership at both national and local level. Agencies must be willing to commit resources to a supportive infrastructure which will yield long- term gains for all parties.
If you wish further copies of this Research Findings or have any enquiries about the work of CRU, please contact us at:
Scottish Executive Central Research Unit
Web site: www.scotland.gov.uk/cru
If you wish a copy of 'Direct Payments: The Impact on Choice and Control for Disabled People' the research report which is summarised in this Research Findings, please send a cheque for £6.00 made payable to The Stationery Office to:
The Stationery Office Bookshop
71 Lothian Road
Tel 0131 228 4181
Fax 0131 622 7017
This document (and other CRU Research Findings and Reports) and information about the work of CRU may be viewed on the Internet at http://www.scotland.gov.uk/cru/
The site carries up-to-date information about social and policy research commissioned and published by CRU on behalf of the Scottish Executive. Subjects covered include transport, housing, social inclusion, rural affairs, children and young people, education, social work, community care, local government, civil justice, crime and criminal justice, regeneration, planning and womens issues. The site also allows access to information about the Scottish Household Survey.