It examines the benefits of the policy, the possible pitfalls and the particular issues for deafblind people.
The background
Since 1997, local authorities have had discretionary powers to make direct cash payments to disabled people aged between 18 and 65 who wanted, and were “willing and able”, to purchase and manage the services they wanted to receive.
In April 2003, councils became obliged to offer people who needed help to stay in their own home money instead of arranging services for them. Today, direct payments are available to older people who have been assessed as needing community care services, and to families with disabled children, for children’s services. Carers can receive direct payments in place of carers’ services.
How direct payments work
Social services departments make an assessment of a disabled or older person’s care needs. They then offer direct payments as an alternative to providing care services.
Recipients of direct payments can purchase services directly from individuals, via an agency or from an organisation such as Sense. However, they cannot spend direct payments on buying services from their local authority.
People in receipt of direct payments must account for the money they spend, for example by providing receipts, and this information must be in the format prescribed by the local authority.
Why direct payments?
Many disabled people have campaigned for years for direct payments because they want the greater control over their lives that direct payments can bring. For people who want to use them, direct payments can give greater choice and independence, for example by enabling users to employ staff at the hours they want and with job descriptions created by them.
What makes direct payments work?
Research by the Joseph Rowntree Foundation[1] found that the areas with the highest numbers of people using direct payments were those where users and the local authority shared control and ownership, and where user-led support schemes such as local Centres for Independent Living were adequately resourced.
The report of the Prime Minister’s Strategy Unit, Improving the Life Chances of Disabled People, recognised that while direct payments have delivered significant choice and control for some people, they are not suitable for everyone[2]. The Life Chances report proposed that different sources of funding should be brought together in the form of individual budgets, giving individuals the choice whether to take these budgets as cash or as services. The aim would be to enable existing resources to be allocated and services delivered in ways that personalise responses to need, and give disabled people choice over how their needs are met. This proposal has been taken up in the recent Green Paper on adult social care[3].
Sense agrees with the statement in the Strategy Unit document that “direct payments are a means to an end. That end is independent living”[4]. So, for example, if direct payments are made to someone who is unable to recruit the staff with the specialist communication skills they need, they have failed to deliver independent living. However, for some other people, direct payments can be a good way of getting a service that enables more independent living.
Deafblind people and direct payments
The experiences of deafblind people who have been offered direct payments have been very mixed. Some deafblind people are very happy with direct payments, often because they offer greater choice over how a service is provided.
| Case study: Michael Michael is 32 and has Usher syndrome, meaning that he is profoundly deaf and has poor peripheral vision. He uses British Sign Language and his local authority offered him direct payments to employ a BSL user to act as a communicator-guide for him when he is unfamiliar surroundings. Michael is able to employ someone he knows on a freelance basis according to what activities he has planned for that week. This gives him more flexibility than if the council was providing a service for a fixed number of hours per week. |
However, some deafblind people have reported that they have not been given a high enough hourly rate to enable them to pay for a qualified communicator-guide (a specifically trained one-to-one support worker with deafblind people). Other deafblind people live in areas where there are no suitably qualified communicator-guides and no local agency providing such a service. If qualified communicator-guides have to travel some distance to work with a deafblind person, it is vital that the rate of direct payments offered is sufficient to pay their travel expenses if necessary. Some deafblind people have reported that the level of direct payments they have been offered does not enable them to pay travel expenses. This contravenes Government guidance, which says that the hourly rate should be sufficient to enable people to have choice over who they wish to provide their care.
A number of deafblind people have told Sense that their local authority has offered direct payments because they are unable or unwilling to source a suitable service. A Sense member said:
“[My] social worker searched for three years to find respite care (and failed) then said, ‘here’s direct payments, you sort it out.’”
If the local authority cannot deliver or commission a suitable service, there is little chance of a deafblind person or the parent of a deafblind child being able to find one. Offering direct payments in this way is contrary to the Government’s stated intention of providing greater independence and choice for disabled people.
However, many local authorities have targets for the number of people that should go onto direct payments, and one of the indicators used by the Commission for Social Care Inspection to determine council star ratings is the take-up of direct payments. Sense is concerned that these targets could lead to people being pressured into agreeing to take direct payments. As a minimum, no‑one should be offered direct payments unless they are also given a clear indication of what service would be provided if they choose not to take them up.
Specialist services for deafblind people
A King’s Fund report on care services for older people in London[5] concluded that the ‘supply side’ of social care needs strong stimulation from local authorities, backed up by greater investment - in many cases also from the public sector. The report pointed out that its concerns and recommendations were likely to be relevant to almost all of the United Kingdom, and said that above all, local authorities need to be more active in their role as ‘market managers’ of social care, encouraging providers to increase levels of supply, diversity of provision and more personalised care.
Local authorities have a duty to provide specialist social services to deafblind people and their responsibilities are clarified in guidance issued by the Department of Health in 2001[6]. However, research by Sense shows that only 40% of local authorities are currently providing communicator-guide services to any deafblind people at all[7]. One of the reasons for this is that such workers are in short supply. Direct payments do not do anything to increase the supply of specialist one-to-one support workers that are needed by deafblind people. Neither do they do anything to help deafblind people identify suitable people to work with them.
| Case study: Martin Martin is six years old and needs an intervenor service (a one-to-one support service). His mother was offered direct payments by their social services department, and told that if she did not accept direct payments, the council would not commission a service for Martin. Martin’s mother is not able to find a qualified intervenor locally, and direct payments would not be enough to enable her to train people to do this work. The council’s action is contrary to the legislation, which says that direct payments can only be made with the consent of the person involved and that if people do not wish to have direct payments, the council should provide or commission a service. |
It is vital that the hourly rates offered are sufficient for deafblind people to buy services that are at the level they need. For example a deafblind person who has some central vision might need a communicator-guide who can use British Sign Language. Many local authorities have set their own hourly rates for direct payments that are below the amounts needed for deafblind people to employ people with the specialist communication or guiding skills that they need. These rates are often based on the cost of a domestic worker or a home care worker, or on rates paid to independent agency care staff.
Research by the Scottish Executive into direct payments in Scotland[8] found that four of the seventeen local authorities with direct payments schemes made no provision to pay higher rates to workers with particular skills. However, hourly rates charged by trained communicator-guides are significantly in excess of the rates normally paid for home care workers. Some local authorities have a policy that links the hourly rate payable to the cost of providing the same service in-house. But as only 40% of local authorities are currently providing communicator-guide services[9], it is difficult to see how this comparison can be made. Some deafblind people are forced to employ untrained guides as a result of being awarded an hourly rate that is too low.
It is also vital that the rate of direct payments awarded reflect all the costs associated with buying services. These can include recruitment costs, agency fees, employer’s liability insurance, CRB checks if necessary and any training needed to benefit from equipment purchased using direct payments.
| Case study: Helen Helen is deafblind. She was offered direct payments and accepted these. Helen had been told by her social worker that one of her options was to buy a service from Sense. However when she approached Sense, she discovered that the service she wanted was too expensive for her to purchase with the money allocated. |
The Government guidance on direct payments says that the hourly rate for direct payments should be sufficient to enable people to have choice over which service they wish to choose to provide their care. By having an hourly rate that does not allow deafblind people to employ suitably trained and qualified staff, local authorities are undermining the intentions of the scheme. They are also failing to comply with the Department of Health guidance on social care for deafblind children and adults.
Can direct payments give more choice to deafblind people?
One of the main factors limiting choice and independence for deafblind people is the lack of communicator-guides and other specialist staff. In order for deafblind people to be able to benefit from direct payments, there needs to be a locally available service for them to purchase. Direct payments by themselves will not lead to an increase in people with the specialist skills, training and qualifications that they need.
Direct payments for people with limited capacity to manage them
People who are congenitally deafblind may not have formal language skills, and may lack the capacity to understand what direct payments are, or the ability to say if they want them. Some deafblind people lose capacity in old age, because of dementia. Some people without capacity to understand exactly how direct payments work are nevertheless able to express their wishes through their behaviour. For example, they may be able to show that they enjoy (or dislike) a particular activity. Direct payments can be used to enable their preferred activities to happen.
The Department of Health guidance on direct payments for people with learning disabilities says that “by far the majority, including people with the label of high support needs, are able to indicate preferences, and preference is the basis of decision‑making. The guidance is clear that the purpose of direct payments is to increase people’s independence and choice about how their needs are met”[10].
People with limited capacity can receive direct payments with assistance from another person: this can either be a family member or an agent. However, the social services department must be able to satisfy themselves that the money is being used for the benefit of the person without capacity, and in a way with which the person is happy. Direct payments cannot be made just because someone’s family or other supporters want them. A separate bank account must be used, and if the person concerned does not have the capacity to understand what the account is for, it must be a trustee account, opened by a trustee or trustees.
The Green Paper on adult social care proposed increasing the extent of direct payments paid to agents. Sense believes that the overriding consideration must always be whether the person without capacity will benefit from having direct payments managed by a broker or agent. Where the agent managing the direct payments is a family member, there is not necessarily a guarantee of person-centred planning. Where the agent is also the service provider, there may be allegations of conflict of interest or lack of objectivity.
Some Sense members who have deafblind relatives have expressed support for the idea that family members could be agents for children as they become adult. However, there was also widespread recognition of risk of abuse in this situation. People with little or no formal communication must be entitled to a guarantee of person-centred planning where a parent or other family is managing their direct payments. Whether services are managed by a specialist agent or a family member, it is vital that social services departments ensure that the services provided are planned and delivered in such a way as to provide maximum benefit for the recipient.
Direct payments for Jim - a success story?
Jim is deafblind and uses one-to-one support workers provided by Sense. He is not able to manage his direct payments without support, so Sense helps Jim to manage them. Sense helped Jim to create a job specification for the people who work with him and provides workers who meet this specification. Jim receives a service that is right for him, and is effectively the equivalent of a commissioned service from Sense. However, there is no discernible benefit to Jim in providing the service under direct payments, and it is more bureaucratic than if the service were commissioned direct. The only advantage is that it helps the local authority meet its target for getting people onto direct payments.
Direct payments may appear to be successful for Jim, but they are not delivering any more choice than he would have had if his local authority had commissioned a service. Whilst Jim was able to design his own service with help, this would have been good practice anyway, and would have happened if his local authority had commissioned a service from Sense.
Employing staff directly
It is possible to use direct payments to employ staff directly, and local Centres for Independent Living, which are organisations run by disabled people, can help with this. Centres for Independent Living offer assistance with recruiting and employing staff, payroll services, a register of personal assistants and training of these assistants. However, deafblindness is a low incidence disability and local Centres for Independent Living may not have much experience of giving advice on employing staff with specialist deafblind communication skills.
Protection issues
Adults who use direct payments to employ their own staff can, if they wish, check that applicants do not have a criminal record. However, the government does not require councils to insist that recipients of direct payments only buy services that are regulated and checked. Leaving the decision about whether to seek a Criminal Records Bureau check to the recipient of direct payments could be seen as extending choice. However, allowing people to select any provider they wish, whether regulated or not, could make it easier for abusers to come into contact with vulnerable adults.
Individual recipients of direct payments are not able to apply for Criminal Records Bureau checks themselves, and must ask their local authority or another organisation registered with the Bureau to carry out the checks.
Individual budgets
The expansion of the direct payments scheme into individual budgets is one of the key elements in the Department of Health’s green paper on adult social care[11]. These budgets would be held by the local authority on behalf of the person using services or their carer, and spent on social care.
The Government has acknowledged that reluctance to become an employer is a major brake on the uptake of direct payments. Individual budgets are proposed as a mechanism that will allow individuals to keep control and choice over the support they receive, without having to take on the responsibility of becoming an employer.
The extra burdens on disabled people associated with direct payments are reflected in the fact that uptake of direct payments has so far been relatively small. In 2003, only 12,585 people were in receipt of direct payments[12], compared with 1.68 million adults using community care services.
According to the Government, individual budgets will allow people the opportunity to choose what services and support they think would best meet their needs. The services and support chosen might be different from the services that the formal care system has on offer. The Government has said that individual budgets should drive up the quality of services by enabling people to ‘buy’ the services they actually want, including services provided by their local authority if that is what they wish. However, as we have already argued, the problem for many deafblind people is that the services they actually want are not available in their area, or are too expensive for them to be able to buy from the budget they have been allocated.
The individual budgets proposal is an interesting one and addresses some of the problems with direct payments that are described in this paper. However, it does not address the fundamental problem for deafblind people - the lack of suitably qualified support workers. For a low incidence disability like deafblindness, intervention will always be needed by local or central government to ensure that there are qualified workers available, as demand will not by itself generate supply.
Conclusion
Sense supports direct payments for people who can benefit from them. However, for deafblind people to be able to benefit from direct payments, they need to be able to access suitable services locally, and to be able to afford to pay for them out of the money they are awarded. This is very often not the case.
Where a deafblind person lacks the capacity to manage direct payments, there may still be an advantage for them in having them managed by a family member or agent. However, a careful assessment needs to be made of whether this is the best way of delivering the service. Ongoing monitoring is vital to ensure that the recipient is receiving services that are planned and delivered in a person-centred way, whether via direct payments or as a commissioned service.
Sense is strongly opposed to anyone being pressured into accepting direct payments, and for this reason believes it is inappropriate for social services departments to be given targets for moving people onto direct payments.
Recommendations
All deafblind people should be offered direct payments by their social services department, but with a clear description of the services that will be provided or commissioned if they decide not to accept them.
Hourly rates should be at a level that enables deafblind people to employ the specialist support staff that they need, including all additional costs (recruitment, agency fees, liability insurance, CRB checks and training).
Central and local government should take steps to increase the number of trained and qualified one-to-one support workers with deafblind people. These include communicator-guides for people with acquired deafblindness and intervenors for children and adults with congenital deafblindness.
November 2005
References and further reading
Association of Directors of Social Services (2000), Getting Going on Direct Payments - ADSS Survey of Local Authorities
Commission for Social Care Inspection (2004), Direct Payments: What are the barriers?
Department of Health (2001), Social Care for Deafblind Children and Adults (LAC [2001] 8), issued under Section 7 of the Local Authority Social Services Act 1970
Department of Health (2004), A guide to receiving direct payments from your local council: a route to independent living
Department of Health (2004), Direct Choices: what councils need to make direct payments happen for people with learning disabilities
Department of Health (2005), Independence, Wellbeing and Choice: our vision for the future of social care for adults in England
Great Britain (1970), Local Authority Social Services Act 1970
Great Britain (1996), Community Care (Direct Payments) Act 1996
Hasler, Frances, Campbell, Jane and Zarb, Gerry (1999), Direct Routes to Independence: A Guide to Local Authority Implementation and Management of Direct Payments
Joseph Rowntree Foundation (2004), Making direct payments work for older people
Joseph Rowntree Foundation (2004), Developing direct payments in the North East of England
Scope (2003), The Direct Approach: Disabled people’s experience of direct payments
Scope (2004), Direct Payments in Action: implementation by Social Services Departments in England
Scottish Human Services Trust and Lothian Centre for Integrated Living (2000), Direct Payments: The Impact on Choice and Control for Disabled People
Sense (2004), Sense Local Authority Survey Results
[1]Developing direct payments in the North East of England, Joseph Rowntree Foundation 2004
[2]Improving the Life Chances of Disabled People, Cabinet Office Strategy Unit 2005
[3]Independence, Well-being and Choice, Department of Health 2005
[4]Improving the Life Chances of Disabled People, Cabinet Office Strategy Unit 2005
[5]The Business of Caring, King’s Fund 2005
[6]Social Care for Deafblind Children and Adults, Department of Health 2001
[7] Sense Local Authority Survey 2004
[8] Direct Payments: The Impact on Choice and Control for Disabled People, Scottish Human Services Trust and Lothian Centre for Integrated Living Scottish Executive Central Research Unit 2000
[9] Sense Local Authority Survey Results, Sense 2004
[10]Direct Choices: what councils need to make direct payments happen for people with learning disabilities, Department of Health 2004
[11]Independence, Well-being and Choice , Department of Health 2005
[12] Commission for Social Care Inspection data, September 2003
