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
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.
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
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
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
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
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
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
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.
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
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
- 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