The Independent Living Fund
was originally set up in 1988 as a transitional arrangement
to support severely disabled people living at home.
This came about following changes to the old benefits
system which put people at risk of losing some ‘domestic
assistance allowances’. It was an independent
charity, albeit funded by government and, after its
initial five year period, had become established. It
proved popular and many people with learning disabilities
used it to live independently. It was the precursor
to direct payments which people could use to employ
their own support; indeed, in some ways it was more
advanced as, unlike direct payments, if you moved, the
fund moved with you.
Effectively barred
As word spread, more people applied and inevitably the
money ran out. In 1993 a new fund was set up for new
applicants. Old applicants were retained but new ones
had to keep to a restricted budget. These changes hit
many applications from people with learning disabilities
as they effectively barred people who had received long
stay hospital ‘care’; money for them was
transferred to local authorities which locked them into
the funded model of residential homes.
But for many of those who did qualify it proved an
invaluable lifeline. The fund continued for a few years
until the next crisis at the turn of the century. The
organisation had come under a lot of criticism. They
were accused of discriminating against other groups
of people as well as people with learning disabilities
and for not being transparent about who was entitled
to what, how decisions were made and how much you should
get. They also came under fire for their complex rules,
difficulties with different criteria about charging
and many other areas.
These issues and many more were looked at in a review
in 2006 by Henwood and Hudson (www.tinyurl.com/ilfreview).They
concluded that ‘doing nothing is not an option’
but existing users had to be protected. The organisation
was brought under the wing of the Department for Work
and Pensions (DWP) as a Non-Departmental Public Body.
In 2006 it was still only paying some 18,000 people.
Other changes to social care funding were happening,
such as individualized and personal budgets, that brought
funding streams together.
Whilst the ILF had survived by the skin of its teeth
following the review, its future was still far from
secure, perhaps rightly so. Then the ILF faced another
funding crisis. It was inevitable it would experience
greater demands as local authority budgets were cut
and other sources of money were sought. As awareness
of the opportunities of the ILF grew more people were
supported to claim and applications rose once again
to
unacceptable levels. In 2009, it was decided to restrict
funds yet again.
New hurdle
Again, existing claimants were supported but fresh criteria
were drawn up for new applicants. A new constitution
made this easier to accomplish although there was a
new hurdle to overcome as they were under DWP’s
wing. This meant an Equality Impact Assessment had to
be carried out following the Equality Act in 2010.
This is designed to ensure that equality, social inclusion
and community cohesion issues are considered when drawing
up policies or proposals. The assessment was done and
showed that the proposal to restrict the fund to people
working over 16 hours a week may well disproportionately
affect some groups of people. The ILF merrily went ahead
with the change with little or no consultation with
the public or other interested areas of government.
This decision seems to have been implemented with a
staggering disregard for the group of people least likely
to be in work, especially paid work over 16 hours a
week, ie. people with learning disabilities.
It is significant that the new eligibility is based
around work, influenced no doubt by the ILF’s
new paymasters the DWP. Or perhaps there are not enough
people with learning disabilities on Equality 2025,
the Office for Disability Issues’s, forum. Disability
consultant Simon Stevens is calling for the ILF to be
renamed the Independent Working Fund. What will cause
immediate confusion is the difference between the new
ILF and the Access to Work fund. Surely their paths
cross too closely?
Meaningless
If all these funds are merged into Personal Budgets
perhaps this would not be a cause for concern. But there
are several arguments that suggest it is important:
• Nothing is clear yet about Personal Budgets
and what is in or out.
• If Personal Budgets are based on current criteria
that would
discriminate against people with learning disabilities
from the start.
• Big changes in how social care is organised
should be the subject of a consultation that does not
appear to have happened. In the current
climate that does not set a good precedent.
• More importantly, Equality Impact Assessments
(EIAs) were brought in to prevent discrimination. If
they are just a paper exercise that can be disregarded
they are a meaningless waste of time and might as well
be one of the coalition government’s cuts.
When I sought views on this issue, I found others were
starting to be concerned. Anne Williams, Valuing People
Now director, could not comment due to the election
block. However, Karyn Kirkpatrick, the National Housing
Lead, was able to say: “I can advise you that
VPN and DH are aware of the issues and are in cross-government
discussions. We are happy to receive any evidence that
demonstrates the impact of the
changes to ILF.”
The Learning Disability Coalition say they are planning
a campaign to have the eligibility criteria reinstated
within the first 100 days following the election. They
were intending to lobby newly elected MPs in the week
commencing 10 May with case studies of people who have
benefited from the ILF or have tried to apply but have
been affected by the changes.
Complex legal issues
Nick Gradwell of the Equality and Human Rights Commission
(EHRC) said, “The matter is now being referred
to one of our legal groups who will then indicate what
action we may take. In the current environment, it is
obvious that EIAs are going to be vital for proper considerations
of this type. In this case an EIA has been done which
recognises the adverse impact for some but the legal
issues arising are complex”.
Under the new administration, action on this issue
is likely to be delayed but, given the seriousness of
the wider issues involved, I hope pressure from the
EHRC will introduce some urgency.
This issue is one of the first to be discussed on a
new forum allowing instant access and comment.
Go to: www.ldforum
Andrew Holman is Director of Inspired Services
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