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Case study

Situation: Rob Simpson, 35, has profound learning difficulties and has always been cared for by his parents who are now both in their seventies. In recent years the care required has become more constant and demanding and his parents, who are becoming frailer, have been finding it increasingly difficult to manage. However, they are determined that, when they die, Rob will not be placed in residential care.

Rob gets 15 hours a week of home care to support that given by his parents and has had the same two carers for six years. Rob's parents want to explore the options available for when they withdraw from providing care. Rob's social worker has provided, on request, information about direct payments and sees this method as a possibility. However, the department does not have a procedure in place for these payments. It has been suggested that senior managers are concerned that the introduction of direct payments will lead to redundancies and, in any case, fears that relatives may take advantage of vulnerable people unable to control their own finances. The social worker has said that she has been unable to interest anybody in finding out how to proceed with direct payments. Rob's parents know they can help their son manage direct payments but are worried, with no other family members close by, as to what might happen after they have gone.

Panel responses

Mike MacCallam
The White Paper, Valuing People - A New Strategy for Learning Disability for the 21st Century, emphasises four key principles: rights, independence, choice and inclusion. It also highlights the importance of direct payments for people with learning difficulties and has identified the need to extend eligibility for direct payments, through legislation, as a "key action" for improving a person's choice and control over their lives.

Guidance accompanying Valuing People requires partnership boards to foster development of good support services and schemes so that people with learning difficulties and their families can benefit from direct payments. Councils are urged to think about how information is presented to people with learning difficulties in order to maximise the potential for people to make informed decisions

Rob has a right to make choices, such as where to live, with whom and with what level of support. There is an increasing requirement for social services and others to provide the necessary level of help and support, and people should not be excluded because of their learning difficulty.

I suggest that Rob's social worker contact the local partnership board to establish what is in place and what is being done to introduce a direct payments scheme. The social worker might also contact his regional representative from the Valuing People support team to find out what is happening in the area and to seek support to prioritise direct payment schemes.

There may be several ways in which direct payments can be made to Rob, including setting up an independent living trust. This would address the issue of continuing support when Rob's parents are no longer around.

Crucial to any long-term support is to find out what Rob wants for himself. Does he wish to continue with the same two carers? Did he have any choice over their appointment? Will the opportunity for direct payments enable him to exert some personal choices over the type of support he will receive in the future?

Finally, Values Into Action and Mencap have produced guidance on direct payments on their websites www.viauk.org and www.mencap.org.uk

Lisa Loveridge
Rob's situation may take some time to resolve so we need to look at short-term and long-term plans. Enabling Rob to have a voice is difficult but, without an independent advocate, I would work with his parents and others who know him to find out what he likes and dislikes and evaluate the options according to these criteria. This should be a collaborative process and could happen as part of Rob's person-centred plan.

In the short term, we could increase the support available to him and the options for what he does during the day. In the long term, decisions must be made about where to live and what methods of support would best meet Rob's needs. He could remain in his parents' house; or share with friends in a rented or owned property; or be moved into residential care (this should be considered until we have established that it is not in Rob's best interests). The support for this could be organised by direct payments or be commissioned by social services.

The government expects local authorities to offer payments to people with learning difficulties but there are problems with Rob's ability to exercise choice and control over his support. Different local authorities and organisations of disabled people will disagree on whether it is legally possible for Rob to have payments.

However, Values Into Action has brought to light a number of precedents and it would be possible to establish a trust to assist Rob in employing staff. There may be legal obstacles to Rob having a tenancy and a trust may be needed if Rob inherits his parents' house or any capital. The Schwehrcare website (www.schwehrcare.co.uk) could provide more information on capacity, tenancies and trusts.

Given pressure on budgets, I can imagine that it might be difficult to obtain funding if people agreed that living alone was best for Rob. Despite transitional housing benefit, this would almost certainly be more expensive than other options. In the absence of joint health funding, the package would cost more than the ceiling for the Independent Living Fund. Rob and his family may need to exert pressure on the local authority, perhaps through a combination of independent advocacy, working with local or national organisations and through their MP.

User view

Rob's story is a typical one of people knowing their rights, but having them denied by professionals who are more interested in themselves, write Kathleen Franklin, Pasq Cerrone, and Colin Gear.  

Rob's parents are getting older and can no longer support all his needs. Like many of us in this situation, it is time for him to make some plans for what will happen when they are no longer able to support him. His parents and social worker know it's a good idea to help Rob think about an action plan for his future. A direct payment could be a good part of his plan so he could buy himself more support. Sounds pretty straightforward doesn't it? 

Think again. This plan will need social services to have a part. No longer is it straightforward. Social services and professionals are supposed to support us to live our lives in the way we want. But this usually doesn't happen. We really think the senior management in Rob's social services needs sorting out. They need to be told that: 

• It is a government rule that all people with learning difficulties be told that direct payments exist and be offered one. 
• The only criterion for a direct payment is for us to be "willing and able to take it on". We can have support - for example, a trust - to do this. 
• Each council must have a service in place to support people with their direct payment. 

Next, they need to be told that the idea that people would lose their jobs over direct payments is wrong. Under this scheme, a social worker is still needed and they would be hiring support staff. In fact, Rob could ask whether his two support workers would be willing for him to be their boss rather than the agency.  

Finally, senior managers need to be told that it will be difficult for Rob's parents to cheat him of his direct payments money if their son receives a payment and they support him to manage it. Whoever supports him - whether it is his parents, a trust or an advocate - will have to hand in a finance statement three times a year and he will need a separate bank account. His parents could even receive a direct payment themselves, as carers, and use this to free up more of their time to spend with Rob. Straightforward? It really is, if you respect our rights!  

Kathleen Franklin, Pasq Cerrone, and Colin Gear are part of Milton Keynes People First. They would like to thank advisory body The Rowan Organisation for help with this article. Contact 01908 550595.