Britain —
The Government is proposing to give disabled young
people their own individual budgets to spend on services
that affect them. Tom de Castella asks four teenagers
with different disabilities what they think of the idea
and how they would spend the money.
A year ago the Government set out a plan to give
Britain's estimated 11 million disabled people control
over their own lives. The report, called Improving the
life chances of disabled people, was put together by the
Prime Minister's strategy unit and four key government
departments. It promised that by 2025 "disabled people
should have full opportunities and choices to improve
their quality of life and be respected and included as
equal members of society".
A main plank of the report was the expansion of direct
payments to disabled people through "individual budgets".
So, instead of receiving preordained services from the
State, an individual will be able to opt to have the
money given to them so they can decide which services to
buy in.
Thirteen sites across England will receive a share of
£2.6m to set up pilots to test individual budgets.
Another part of the plan pays attention to the
"transition to adulthood" to ensure that disabled young
people do not miss out on services while being caught
between youth and adulthood. All this is to be supported
by a new Office for Disability Issues to co-ordinate the
Government's approach.
Equal rights
Maria Eagle, the then minister for disabled people at
the Department for Work and Pensions, said at the launch
of the report that the proposals built upon the
Disability Discrimination Act, which was designed to
improve access to services, jobs and education, and was
going through Parliament at the time.
Disability campaign groups are generally positive
about the proposals. Jo Williams, chief executive of
learning disability charity Mencap, says: "Individual
budgets put the person with a learning difficulty in
control of their money, as well as the choices and
decisions made about their lives."
A spokeswoman for disability charity Whizz-Kidz said:
"It's great the Government is addressing the needs of
disabled young people, but the report does not offer
solutions in the short term."
Here, Young People Now asks four young people with
disabilities what they think about the proposals and how
they would spend their individual budget.
Miro Griffiths on Individual Budgets
As a result of 16-year-old Miro Griffiths' condition -
spinal muscular atrophy type 2 - he requires a wheelchair
and relies on nurses for everything from going to the
toilet to turning him when he is asleep. Miro currently
receives £300 a month in disability living
allowance, about £150 a month from the mobility
allowance, and a free pass from Merseytravel to get about
independently in his home town of Kirby, near Liverpool.
He thinks individual budgets are a good concept but has
some concerns. "They sound good but there are potential
pitfalls and it depends whether they can be overcome. I'd
worry about the care package because at the moment the
NHS looks after that. If I had to pay, would the money
cover it and would it be organised in the same way?"
He says that under the new system he would aim to
prioritise his spending, with care and transport coming
top of the list. "Because I'm disabled, I'm allowed to
drive at 16. But it would cost me £25-30,000 to get
a specially adjusted car," he says. "I'd use the money to
save up for one."
Practical changes
Housing and office adaptation come next on his wish
list. "Soon, I'll be wanting to get my own house, so I'd
need to pay for the specialist devices that can control
every electrical device in the house. And if I've got to
work I need someone to come in and give me a hand with
the toilet, as well as money for adapting my office.
"I'd spend my budget on paying carers, transport,
getting my own house with specialist controls and then
all the things that teenagers need like clothes."
More could also be done to make disabled young people
feel independent, he believes. "On nearly all of the
buses I try to get, the drivers haven't got a clue how to
work the ramp. The Government says that by 2012 all
public transport will be wheelchair compatible, but by
then I'll be 23 - that's not good enough."
Robert Stephenson on Services
Seventeen-year-old Robert Stephenson, from west
London, has learning difficulties and as a consequence
went to a special school. He found it a supportive,
friendly environment. "At a special school everyone is in
the same boat, so there were no snide remarks. There was
a school council and we could make decisions about
things."
He describes himself as a "youth club freak" who
attends a different youth centre nearly every night in
the London Borough of Hammersmith & Fulham. "It's
about seeing old friends and making new ones, and I also
do something for the Youth Parliament. I used to think
politics was just blah blah blah, but now I'm really into
it." He's also a volunteer at Hammersmith & Fulham
Action on Disability, attends the borough youth forum and
the Christian project Switched On.
Mainstream help
He says because his disability is relatively minor he
doesn't think being given an individual budget will
really affect him, but believes the existing services he
uses are well run.
"I'm happy with the youth service but I'd like the
wider population to have more understanding of disabled
people," says Robert.
He recalls how young people at his mainstream
sixth-form college reacted with disgust to an offer to
work with disabled people. "People don't realise I have a
disability because you can't tell physically," he says.
"So I don't get any problems. But it really annoys me
when we're out on a disability youth trip and people look
at my friends strangely."
He is irritated by the Jobcentre, which he says is
insensitive to his disability. "When I told them my
qualifications they said, 'Is that it?' I feel
embarrassed to explain that I've got learning
difficulties, so most of the time I don't say
anything."
Stuart Smith on Managing Individual Budgets
Stuart, 17, from Wigan, has Down's syndrome, a
chromosome condition that results in some level of
learning disorder. In Stuart's case, it means he has
limited communication skills and understanding, and
cannot grasp abstract concepts such as money or time. His
mother Julie says he cannot be left on his own.
Despite his disability, Stuart leads a full and busy
life, attending a special needs group at a mainstream
school, as well as regular evenings at the Boys' Brigade
and The Duke of Edinburgh's Award special needs group,
and rugby league games at Wigan. Stuart's parents both
work, so having reliable carers is a priority.
Budget experience
Since June last year, the family has been able to
receive funding from the In Control programme - a
precursor to the individual budget scheme - that allows
disabled people to buy in the services they require.
"I do think individual budgets are a good idea in
principle, but it does mean that once you've got your
money, you are on your own," says Julie.
So, when Stuart's usual carer went to New Zealand for
a few months, they had a struggle to find someone to take
Stuart to school in the mornings. And it's not as simple
as employing people you know and trust, she says: "If we
wanted to employ the woman across the road it takes six
to eight weeks to get the police check through."
If direct payments to families are to work, Julie
believes she will have to set up a pool of carers with
other people in the community who can be used as
cover.
Since receiving the direct payment, Stuart's wish of
being able to go to school on the bus has been realised.
"Before, he had to go in a taxi and he didn't get on with
the other boy," says Julie. "He desperately wanted to go
on the bus. In Control means that he can now go on the
bus with a carer, which he loves."
Becky Tarry on Individual Budgets
Becky Tarry, 17, from Worcestershire, has cystic
fibrosis, a condition that can cause malnutrition, poor
growth, physical weakness and delayed puberty. She takes
more than 100 pills a day, injects insulin twice a day
and takes enzymes every time she eats. "I get a lot of
stomachaches because I'm not able to digest my food," she
says.
So far she has not come into contact with individual
budgets, but she is cautiously supportive of the idea. "I
don't know about the budgets but I do get disability
living allowance, which is worth about £30 a week
and is very difficult to claim."
Transport issues
If she was given more freedom over how money was spent
on her, she would use it on transport: "I would save
money for a car as I have to go to the hospital in
Birmingham once a month and it's a bit of a drain for my
mum if she has to come up and down all the time with
me."
Another demand would be drugs: "A big part of the
reason I need money is that when I'm 18 I'll have to pay
for my prescriptions."
She is generally positive about her life and living
with her condition, although she feels that she is never
really free of it: "To some extent I do have an
independent life, but then I think of all the people that
I have to stay in touch with because of my cystic
fibrosis."
She is happy at her sixth-form college but is highly
critical of the way her previous school dealt with her
condition. "Because I look normal, some people only half
believe me when I try to tell them that I'm ill and can't
do something," she says. "When I couldn't do PE the
school said, 'Well if you can't do PE then you shouldn't
be in school'. They just didn't really understand."
