Many disabled people want to earn a living and be as independent
as possible. So why did the government change the criteria for
Independent Living Fund grants and make paid work less attractive?
Anabel Unity Sale reports
A protest in London last week highlighted the increasingly
untenable position of the most severely disabled people. On one
hand they are pressed by the government to earn an honest crust,
and on the other expected to put a large percentage of their
earnings towards their care.
The first problem lies with the Independent Living Fund – which
distributes government-funded cash grants available to severely
disabled people to pay for higher levels of care provided by
personal assistants. They are paid in addition to the disability
Junior social security minister Hugh Bayley announced a
five-yearly review of the ILF last December, due to report this
summer. In this age of Best Value, service users usually welcome
such reviews. But not this one. The ILF 93 Fund assessment criteria
were changed earlier this year, resulting in many recipients losing
their grants completely or having to contribute to their care costs
as soon as their income reached £105 per week.
The Department of Health’s current consultation paper on
charging for home care and non-residential social services also put
the cat among the pigeons. One of its recommendations was that “a
maximum of 55 per cent of earnings should be included within any
calculation of total income, to be offset against income”.
In plain English this means disabled people could only be
allowed to keep 45 pence in every £1 that they earn – after
tax – with the remainder being “available” to contribute to their
supports costs. The consultation ends on 30 March.
Last week 15 wheelchair users, clad in bowler hats, descended on
the Department of Health to deliver their collective P45s. After
all, they argued, what is the point of the government running
welfare to work programmes for them if more than half of their
income can be taken away to pay for their essential care?
Dave Morris, director of Hammersmith and Fulham Action for
Disability and member of the Let Us Work! Campaign, took part in
the demonstration. He says: “The protest was about disabled people
being able to derive an income from work and not be unfairly
penalised for it.”
He adds: “As individuals we pay our taxes. Why is it that we are
being charged for our personal assistants? In that case, working
parents should be charged for their children’s education.”
Morris says that these two policies “penalise disabled people
who are working” and act as a “complete disincentive to work”.
The positive result of the protest, he concedes, was that he and
a small delegation of protesters met health minister John Hutton.
He says: “Hutton categorically stated that any disabled person
should not be worse off because of charging.”
But working disabled people are still concerned that they will
be worse off. Frances Hasler, co-director of the National Centre
for Independent Living, says: “There are people who are threatening
to give up work because of this. There is no point in building a
career or going for a promotion if you can only keep a small
percentage of that income.”
She adds: “We really do want to see the government carry through
the logic of welfare to work. If you want people to work it has got
to be rewarding. Gordon Brown, are you listening?”
If government cost-cutting is driving the changes to the ILF, it
seems perverse given the small number of people affected.
Professionals in the sector are adament the government’s actions
will counteract its stated aim of helping disabled people into
work. As Local Government Association benefits policy officer
Duncan Tree says: “The more stringent a charging regime, the less
desirable that work is as an option for disabled people.”
Savings lead to withdrawal of funding
Dave Goode is a 39-year-old wheelchair user, and for the last 12
years he has worked in a variety of positions for BT. He is
currently paid £26,000 and takes home £1,640 a month
Goode first started receiving an ILF grant in 1992. He was
assessed by the fund and his care package – two personal assistants
offering 24-hour support and costing £1,345 a month – was
But two months ago his funding was completely withdrawn,
following a reassessment, because he had savings exceeding its
£8,000 limit. He argues this should not be the case as he had
always informed the fund he worked and had savings.
This decision left Goode potentially having to meet the full
cost of his personal care himself.
He immediately approached his local council Hounslow to step
into the breach. “They were not best pleased with the ILF. They
picked up the cost of my care package within three weeks.” Now he
contributes £32 a week to the cost of his care from his
disability living allowance.
The ILF has informed Goode it will keep his case open for six
months and say if his savings fall below £8,000 it will cover
the cost of his support. He says: “I don’t want to spend my
savings. I have been saving up for the last seven years to buy a
new specially adapted car.”