Time for direct action

The take up of direct payments is highest among disabled people,
which is unsurprising considering it was the physical disability
movement that pushed so hard for the scheme.

But this may have had unforeseen consequences. According to a
recently published book: “Direct payments have been conceptualised
and implemented from a physical impairment perspective without
taking adequate account of the needs of people with learning
difficulties.”¹

Practical problems and prejudicial attitudes within local and
central government still present barriers to the uptake of direct
payments for people with learning difficulties. Jon Glasby,
co-author of the book and lecturer at the University of Birmingham
health services management centre, says front-line social workers
often make blanket assumptions about a client’s ability to handle
direct payments. As a result, many people with learning
difficulties are never even told about the option.

Under the Community Care (Direct Payments) Act 1986, local
authorities have no duty to set up direct payment schemes. But
Linda Martin, joint commissioner learning difficulties at the
London Borough of Enfield, says local authorities need a commitment
to direct payments to make them work. Direct payments have been on
offer in Enfield for two years and, as well as the original client
with learning difficulties still using the scheme, three are going
through the setting-up process and five others are looking into
whether it would work for them.

Martin says every care management team should have a direct payment
champion who is also a care manager. In her experience, success
also depends on agency help. For example, the London Borough of
Greenwich, Martin’s previous employer, commissioned a provider to
support clients to buy in support workers themselves. Local
authorities should also have a payroll support scheme, because not
everyone will be able to deal with matters such as national
insurance and tax.

The government is trying to raise the profile of direct payments
for people with learning difficulties. In its Valuing
People white paper, it admits that the take-up of direct
payments is low and promises to increase their availability.

Speaking in the House of Commons in March 2002, one year on from
Valuing People, health minister Jacqui Smith said fewer
than 400 people with learning difficulties were using direct
payments in England. However, under the Health and Social Care Act
2001 all councils will have to run schemes from April 2003.

While consultation has just begun on the third set of policy and
practice guidance on direct payments for local
authorities,² it was the original guidance in 1997 that
brought in one of the biggest barriers to direct payments for
people with learning difficulties. It stated that people with
learning difficulties had to be “willing and able” to manage the
money they received either alone or with assistance. This raised
complex legal issues for councils and was often used as a reason
for rejecting an application.

Revised guidance issued in February 2000 states that a person can
have as much help and support as they need to manage a direct
payment. To consent, they just have to understand what a direct
payment could provide them with, says Jean Collins, director of
campaigning group Values Into Action.

“It isn’t necessary for someone to read or understand the legal
document or sign on the dotted line, which have all been used as
reasons by local authorities to refuse a direct payment,” she
says.

Direct payments should be an automatic part of a community care
assessment, she adds, but it is not included because of a
reluctance by many councils and social workers to accept that
people with learning difficulties are capable of controlling their
own lives. “There’s still a sense of ‘we know best’. But who can
know better what is in people’s best interest than themselves?”
Collins says.

Collins believes that even those with severe learning difficulties
could benefit from direct payments. Money could be managed by a
named third party or through a user-controlled independent living
trust. “The major thing is for people to listen to what they are
expressing – and that will not necessarily be through speech if
they have communication problems,” says Collins.

¹ J Glasby, R Littlechild, Social Work
and Direct Payments, The Policy Press, 2002

² For information on the consultation go to
www.doh.gov.uk/directpaymentsconsult/index.htm

A matter of choice

Learning difficulties group Swindon People First recently
undertook research into the take up of the scheme locally,
writes freelance consultant on learning difficulties Simone
Aspis. I talked with Swindon research team members, Stacey
Gtamlich, Natasha Snelham and Gordon McBride, about the
study’s findings. The team interviewed about 80 people,
including day centre managers, social workers, parents, carers, and
people with learning difficulties.

At first, when the research team talked about direct payments
with people with learning difficulties, many thought it was
something to do with a bank. Some were interested but fearful
because it sounded so complicated, which was a barrier.

The team discovered that some people found it very difficult to
get a direct payment because of all the rules and regulations.
Snelham says: “It says you must be ‘willing and able’,
meaning you must have the ability. You can be disabled, you can
have an extremely big learning difficulty, but you can still be
willing. If you are a person with severe learning difficulties, you
can’t get direct payments, because you aren’t able
enough. But then at the other end, people with mild learning
difficulties can’t get a direct payment because they are too
able,” she adds.

Despite problems with some social services departments, there
have been success stories. The team found one local authority that
had a policy of talking about direct payments as an option with all
clients, even if the client hadn’t mentioned it.

Swindon People First are clear that people with profound
learning difficulties who are unable to speak should not be stopped
from having direct payments. They could have their direct payment
managed by circles of support or by an independent direct payments
scheme.

Although John Farlowe (not his real name) cannot speak he is
benefiting from using direct payments, says Snelham. “John is very
happy living in his own home. I played music with him. I played
ball with him, and through his facial expressions I found out what
he likes to do. He likes all his support workers and when his mum
said some words like ‘swimming’, he started smiling.
Everything he didn’t like he didn’t smile at.”

Using agency staff works well for some direct payment users.
“Users were saying they were choosing the agency staff because they
wanted to and because they didn’t want to have or interview
ordinary personal assistants. The agency staff worked well,” says
Gordon McBride. Others did want to employ their own support
workers, however. Linda and Martin Boon (not their real names) say:
“We had agency staff for about two hours per week. They were very
bossy. That’s why we employ personal assistants. Now we are
our own bosses.”

The research concludes that support schemes should be
independent of social services, better funded, offer more options,
and be run by people with learning difficulties.