Is help easily at hand?

The benefits of direct payments have long been heralded by those
who use them and those who championed them in the 1990s. They were
introduced in England and Wales under the Community Care (Direct
Payments) Act 1996 and came into effect on 1 April 1997. New
legislation also paved the way for their use in Scotland and
Northern Ireland.

Until then it had been illegal for social services departments to
provide cash for users to allow them to employ carers or for
adaptations to their home to promote independent living.

Yet, despite the known advantages, at the end of March 2003 the
number receiving the payments remained low – just 9,600. A report
published earlier this year found that, although other groups were
beginning to use direct payments, about 85 per cent of them were
still being used by people with physical disabilities, the first
client group to become eligible.¹

However, the report found that even within this group there was
“still a long way to go” before direct payments become part of
mainstream provision. And the findings for other client groups were
even more disappointing. Only “a very small number” of people with
learning difficulties were found to be receiving direct payments
and “too few” older people were being offered them. Additionally,
progress in developing direct payments for people with mental
health problems had “been disappointing”.

A gloomy looking picture, but do the report’s findings match up
with the mood on the ground?

Physical disability

Most people accessing direct payments are those with physical
disabilities – 8,200 in England. This client group became the first
champion of the government’s push to deliver services through
direct payments, according to National Centre for Independent
Living head of policy Roy Webb. Historically this is because when
direct payments were introduced, the best schemes evolved from
areas with strong local supporters, and most of these were
physically disabled.

These users welcome direct payments because they can see a visible
difference between the provision of services under the scheme
compared with local authorities’ approach. Webb says: “Most people
we ask say they have experienced a significant improvement in their
quality of life. We hope for real independent living outcomes for
people through direct payments.”

James Elder-Woodward, trustee of the British Council of Disabled
People (BCODP), praises the idea of direct payments for allowing
some disabled people to take up roles denied under traditional
services. But he says independence is not a human right but is
controlled “by professional prejudice and political
prudence”.

Until independent living becomes a human or civil right, the
ability of disabled people to control their own lives will continue
to depend on professional views during the assessment process and
political attitudes to resource allocation, Elder-Woodward says.
Direct payments are also blighted by a lack of bridging funding to
help overcome the move from service-centred budgets to
person-centred budgets.

Most of the problems the BCODP hears about relate to assessment and
resource procedures. “Professional assessment is blighted by a
negative attitude that disabled people cannot be responsible for
their own welfare and that of their employees,” says
Elder-Woodward, adding that disabled people who are interested in
direct payments receive the best help from peer support
organisations.

Learning difficulties

Two new guides aimed at increasing the number of people with
learning difficulties using direct payments were published at the
end of last month (news, page 9, 29 April). Campaigning charity
Values into Action (VIA) wrote the Department of Health’s guidance
for local authorities on how to make direct payments more
accessible for people with learning difficulties. Swindon People
First also produced the easy-to-read guidance for users.

VIA deputy director Linsay McCulloch says: “Anything we can do to
bridge potential misunderstandings by local authorities and
professionals about people with learning difficulties and direct
payments is important.”

She adds that, although in theory people with learning difficulties
have equal access to direct payments, in practice they do not. “It
has proved difficult for some people to get them, although there is
some good practice around the country.”

The problem, she adds, is the ability of some councils to address
the issue of consent and management for people with learning
difficulties. “Users can have as much support as they need to
consent to or to manage direct payments,” McCulloch says. “But it’s
a bit difficult for some local authorities to accept that these
people need support in making decisions about direct
payments.”

Direct payments for people with learning difficulties are
“excellent”, says Colin Gear, who is on the management committee of
Milton Keynes People First. He has received direct payments for
three years: “I have waited 60 years for the freedom they have
given me.”

Gear has employed Tim Jones, his fourth support worker, since last
autumn for 13 hours a week to help with showering, cleaning,
laundry and grocery shopping.

The low take-up rate among people with learning difficulties,
especially compared with physically disabled people, is known to
Mencap. David Congdon, the charity’s head of external relations,
urges all social services departments to ensure that people with
learning difficulties are aware of direct payments and have easy
access to them.

Older people

Over 65s became eligible for direct payments in February 2000.
Potentially, older people are one of the biggest client groups
which could benefit from direct payments. However, just 2,700 do
so.

Jenny Orpwood, information officer at the National Centre for
Independent Living, says one of the biggest barriers is the ceiling
that local authorities set on direct payments.

“They say that if an older person asks for direct payments they
will only pay the sum they would if a person were to go into care.
That’s about £300 a week,” she says.

“But if the care needs are more, then either the individual doesn’t
get the care they need or the older person has to find the money
themselves to pay for the additional care.”

There are also significant cost implications for local authorities.
Orpwood says: “If everyone over 70 qualified for three hours of
direct payments a week that would be a huge expense. Although
actively encouraging older people to take up direct payments might
improve their lives there’s an incentive not to because the cash is
not available.”

Some older people do not want the hassle of being an employer and
others have grown up with the expectation that the welfare state
will care for them from cradle to grave.

“If a cleaning lady comes around or meals on wheels then that’s
fine, but they don’t want the burden or responsibility of managing
direct payments,” says Orpwood.

Lack of awareness is also a problem. Heather Clark, senior lecturer
in the school of social studies at University College Chichester,
says: “Direct payments need to become as well known as the home
help service. And care managers need to become more aware of it
themselves. It’s not part of the culture of care management teams
working with older people.”

Practitioners do not always feel confident about offering direct
payments to older people, she says, and might assume that older
people would not be able to manage them. Presumptions are also made
about the fullness of older people’s lives. Yet, as Clark explains,
direct payments can enable older people to pursue a more active
social life – one older person used them to go on fishing trips as
an alternative to respite care.

Mental health

The take-up of direct payments by people with mental health
problems remains low, at 300. But Peter Beresford, chair of user
group Shaping Our Lives, believes things are changing and the
take-up rate is accelerating.

The problem is that many service users – and some practitioners –
do not always realise that direct payments could be a suitable
option.

“People have not been supported traditionally to think about
themselves in these kinds of ways,” says Beresford.

However, in order to increase the take-up there is little doubt
that action is needed and that accessible information should be
offered to potential users.

“There’s a sense that there hasn’t been enough active promotion at
a national level. The National Institute for Mental Health in
England needs to be getting much more behind this, and direct
payments could be built into other strategies,” says Laura
Luckhurst, a freelance consultant who specialises in direct
payments.

Some people with mental health problems find that their condition
fluctuates and direct payments can be useful in dealing with the
changes. “They can manage their budget in a way that they know will
provide contingency or back-up if things get worse,” she
says.

Essex Council has 45 mental health service users on direct
payments. Mike Hay, who is responsible for the council’s direct
payment scheme, attributes this success to the fact that this
client group has never been excluded, and to the independent
advocacy service which was set up early on.

It can sometimes be difficult for people with mental health
problems to see how direct payments could help them as, on the
whole, they do not need a high level of physical assistance, he
adds.

“But they give people real choices and put people in real control
over the way their support is provided. People using direct
payments tend to become more confident, assertive and have fewer
hospital admissions,” says Hay.

Direct payments were introduced to ensure that more service users
could have a greater degree of control over their lives. Although
it is working for those who use them, accessing them is not always
so straightforward. Both users and professionals agree that in
order for direct payments to work smoothly, users need to be able
to access good support services.

So, if the take-up rate of direct payments among services users is
to increase, local authorities must put accessible information and
support on the agenda. Anything less shortchanges them and users
alike.

¹
All Our
Lives

http://www.audit-commission.gov.uk/Products/NATIONAL-REPORT/586EB7DB-A4A6-4C78-88B7-4EF4D60BAFA2/AllOurLives.pdf

Who receives direct payments? 

• 8,200 people with physical or sensory disability 
• 2,700 over 65s  l900 people with learning difficulties 
• 300 people with mental health problems 
• 200 others 

Figures for 2001-2   Source: Department of
Health

It’s about me being in control’

“For me as a disabled person, getting the support I need enables
me to lead an independent lifestyle,” says Berni Vincent.  She has
a physical impairment and has been receiving direct payments for
eight years. 

“It’s about being in control of who I have providing my support,
what they do for me and when they do it. Direct payments give me
flexibility,” she says. 

“Traditional services may provide someone to get you up but it
might not be until 10 or 11 o’clock, which is not constructive for
an independent life. I work full time, and leave at eight in the
morning and get home at seven at night.”   Vincent, a senior direct
payments support worker for the Southampton Centre for Independent
Living, runs training courses for care professionals. They are not
always aware of direct payments and do not understand how they can
affect an individual’s life. 

She says: “There’s sometimes an assumption that someone with a
complex impairment can’t use direct payments. I think everyone can
use direct payments if they want to. It’s about how the support is
in place to allow the person to manage.” 

In Vincent’s view, peer support from another disabled person is
best. “Someone who does not have an impairment may be a strong ally
and have some understanding of the issues but this is not the same
as living with discriminatory barriers on a daily basis.”  Vincent
employs four support assistants. She says direct payments allow
people to recruit staff for their strengths. 

“There might be someone who is a good cook or driver or who is
good at supporting you with personal care. We have a responsibility
to be a good employer,” she says.

‘It can be hard being a boss’

Cliff Moss has learning difficulties and has been using direct
payments since June 2000. He is a self-advocacy worker for Swindon
People First, which is where he first heard about direct
payments.   Initially, he was not sure what direct payments
entailed and talked about it with his family and others who knew
about the initiative. “Once I understood what it was about I
thought it was a good idea.”  When he started receiving direct
payments he lived with his wife, Clare, in a flat in sheltered
accommodation. The couple applied for direct payments because they
did not like having agency support staff as they had to deal with
too many people. Moss says: “We wanted to have more control over
our lives and felt direct payments were a good way forward.”  

Clare died last May and Moss has continued to use direct
payments to pay for his support worker, Gay Waites. She has worked
for him for two years and helps him with his cleaning, cooking,
correspondence, going out, hospital visits and money. They have a
good relationship: “She is really nice, it’s like having a really
good friend.”   For him, the best thing about having direct
payments is that they have helped him live independently. However,
the system is not without its difficulties and being the employer
can prove challenging. “It is hard sometimes being a boss and
managing staff. I had support to help me sort out problems with
staff,” he says.  

He recommends direct payments to other people with learning
difficulties keen on using them as long as they “suss it out”
first.