Patrick is one of 72 people who
participated in a government pilot of individual budgets, whereby
people with mental health problems receive cash to chose and buy
their own social care for the whole year.
Patrick, from Skegness, Lincolnshire,
was granted £4,200. He bought subscription to a gym and a
mountain bike. “I’m on my bike around Skegness nearly
every day, and I go to the gym five times per week. I have lost
43 pounds in weight,” he says.
Patrick also says his disabling
paranoia has reduced. The gym visits and run-arounds in a second-hand
Volvo bought from Ebay means he socialises more.
"I
used to avoid going out,” says Patrick. "But having my
own transport has improved my life no end. Without individual budgets
I would have probably have just struggled on as I was doing last
year. It has given me a kick start. I am feeling alive.”
The government will enjoy this kind
of testimony as it promises to realise "personalisation”
and “self-directed support” in adult social care. More
and more service users - both those with learning disabilities and
mental health problems - are set to be manage their own funds to
not only decide what social care they have, but to shop around for
it.
Ministers hail self-directed support
as ushering in a “radical” transformation of social
care. Underpinned by a social model of disability, they say it will
empower users to decide their care and who provides it. The idea
is out with archaic, inflexible council-run day care services, and
in with personal assistants (PAs) and entrepreneurs offering care.
The first manifestation of self-directed support was in 1997 with
the introduction of direct payments. Then, in 2005, the concept
of "individual budgets” arrived, enabling users to claim
money from more funding streams.
The mental health individual budget
pilots in five local authorities do indeed show people are steering
away from traditional services, and instead are hiring PAs to accompany
them do what they want – whether it be a trip to the grocers
or a football match. Others have bought a tent to go camping in
Cornwall, enrolled on Buddhist retreats, photography courses and
signed up to dating agencies.
"Within
history of mental health it was presumed that people with mental
health problems would appreciate the value of day centres, to be
with others with the same problems,” says Tina Redshaw a community
psychiatric nurse in Norfolk who has worked with six people on pilot
individual budgets. “But I am finding that they don’t.
They want to go to places and do what you and I do – things
that we take for granted”.
But a reality check shows that self-directed
support has hardly got out of the starting blocks for both people
with earning disabilities and mental health problems. Eleven years
on, of the 1.7million people receiving statutory social care, the
Commission for Social Care Inspection (CSCI) reported that just
40,600 adults in England had a direct payment, as of March, 2007.
In Scotland it was 2,291. Just 2,085 people with mental health problems
receive direct payments. Around 300 people with mental health problems
have personal budgets (the social care component of individual budgets).
The CSCI blames councils
for failing to provide information for service users, low staff
awareness, patronising staff attitudes, inadequate advocacy and
bureaucracy. Now Health Secretary Alan Johnson has told council
managers that by 2011 they must have made “significant progress”
in enabling all people eligible for social care to manage their
own budgets. This momentum continued in July when health minister
Lord Darzi’s review of the NHS spelled out plans for patients
to be also given personal budgets for health.
Organising self-directed support
is not, on the face of it, complicated. The service user and care
manager (often a social worker) complete a questionnaire detailing
support needed. Then, if they have different opinions, they come
to an agreement. The questionnaire is then sent to council finance
officers who calculate how much per annum a person is entitled to.
That’s when a service user writes their own support plan,
with hoped-for outcomes, and buys support. Vitally, s/he can choose
to be helped by a care manager, family or friends or an advocate
in setting up a bank account, organising a pay roll and other administrative
duties.
As for the social worker, their
role is likely to change from one of being the gatekeeper to services
to one of expert adviser. "The social worker’s current
role is to assess a service user and make a care plan from it,”
says Carey Bamber, self-directed support lead for the government’s
Care Services Improvement Partnership North West. “With individual
budgets [and personal budgets] the care plan is substituted with
a support plan which service users write themselves. It’s
a huge challenge for the culture of social care”
Concerns have been aired that social
workers will become defunct. That’s “rubbish”,
says Ian Johnston, chief executive of the British Association of
Social Workers. “There’s a shortage of social workers
and the need for social workers to assist people gets greater.”
But will self-directed support be
all its cranked up to be? Will the wants of service users be vetoed
by risk-averse local authorities wary of the idea of someone scooting
off on a holiday rather than being safely tucked away in day centre?
Will there be enough choice of care? Sufficient advocacy services?
Will there be the political will?
No one can say. But Peter Beresford,
professor in social policy at Brunel University and a writer on
personalisation in social care, is deeply concerned. He points to
claims by Demos associate Charles Leadbeater that, with the shaving
off of council administrative charges, personal budgets will cost
up to 45% less than statutory-run services. “Are we going
to be talking about an empowering idea, or a budget-driven approach.
I fear it will be the latter,” he says, adding that, despite
the rhetoric, there is, on the ground, no choice for users.
Bamber is more upbeat, arguing that
creative thinking by individuals and social enterprises will spawn
choice. “I think people will get better value for money. For
example, a local authority or agency carer can cost £25 per
hour, but people are using personal assistants for a third of that.
People can do much more, for less, and it’s not about driving
down quality.”
Self-directed support benefited
Patrick. But the other millions are going to have to wait and see.
Michelle Coleman, 50, cares
for her brother, Wilfrid, 67, diagnosed with schizophrenia in 1962.
Wilfrid spent nine years detained in a Victorian asylum in Canterbury,
Kent, before being discharged to his parents’ home. Wilfrid,
a wheelchair user, lives in the family home of Michelle and her
four children.
“Wilfrid has always been
cared for by his family. And he has been on heavy medication throughout
his life. My mother and father first cared for him and I have cared
for him for 20 years. Wilfrid needs help with everything.
Before direct payments, what
social services did provide was inflexible. For example, if a driver
came to pick Wilfrid up on a Wednesday morning to go to a day centre
or for breakfast and, because of his poor mental health, he could
not go, he would lose the service for that week.
I found out about direct payments
when a leaflet dropped through the door. But from the start I felt
mental health services were uninformed. I asked for a 20-hour care
package for Wilfrid each week, and eventually a seven-hour package
was agreed. I was made to understand that this was one of the highest
support packages that any service user receives from the mental
health centre.
We had to set up a bank account,
and social services agreed an hourly rate for Wilfrid’s PA,
who is a family friend. And we organised a pay roll and insurance.
We set it all up with a direct payments worker from Kent Social
Service, a community psychiatric nurse, myself and Wilfrid. It all
had to be approved by the social worker and care manager. The PA
takes Wilfrid out shopping, for example. But if he does not want
to go out the PA will assist Wilfrid in anything he wants to do.
Just because Wilfrid can’t
fill in forms, does not mean he does not understand. With an advocate
people like Wilfrid are able to use direct payments.
We are considering an appeal
against a decision that one of my daughters can not stand in for
holiday cover. This has been refused as my daughter lives in the
same house and relatives can not be paid from direct payments. To
use an agency is £17 per hour, plus travel expenses, and they
tend not to be flexible. But we can only pay £8 per hour.
For 47 years we have used members of the family, not agency staff.
With agency staff you really do not know who you are getting
Direct payments are better,
but not perfect. However, it has meant that Wilfrid is now able
to decide for himself and not lose out. Under the old system he
could not.”
* Some names
have been changed