[This blogpost has been amended on 2nd April as I was told that Victoria, who I refer to below, has very sadly died]
Yesterday, 31st March, there was a short debate in the House of Lords about the closure of the Independent Living Fund. The debate was opened with a question tabled by Jane Campbell:
Yesterday, 31st March, there was a short debate in the House of Lords about the closure of the Independent Living Fund. The debate was opened with a question tabled by Jane Campbell:
“To ask Her Majesty’s Government what arrangements
they are putting in place to ensure that disabled people currently in receipt
of money from the Independent Living Fund will not be left in hardship when the
Fund is wound up next year and the responsibility for Fund recipients is handed
to local authorities.”
The word ‘hardship’ does not even begin to
encompass the fears of people currently relying on ILF money. Since it was set up
in 1988, the ILF has enabled people with the highest levels of support needs to
live in their own homes and to have choice and control over the support they
need to go about their daily lives. Some people who receive ILF grants have spoken
eloquently about what a difference it makes to their lives. The ILF has been a particularly important
source of funding for people with significant learning difficulties, such as
Victoria who I wrote about in a previous blogpost who very sadly has now died but who, with the support of her family and the Independent Living Fund, was a wonderful pioneer of independent living.
These are people who, in previous times, languished in various forms of institutions – Young Disabled Units, residential and nursing homes, and the wards of long-stay hospitals. The Connor Report illustrated how, if families do not receive the help they need to support young people with learning disabilities, the institutional alternative can lead to ‘preventable death’. Many current ILF users, like Mary Laver, have spoken of their fears of what will happen to them with reduced support.
These are people who, in previous times, languished in various forms of institutions – Young Disabled Units, residential and nursing homes, and the wards of long-stay hospitals. The Connor Report illustrated how, if families do not receive the help they need to support young people with learning disabilities, the institutional alternative can lead to ‘preventable death’. Many current ILF users, like Mary Laver, have spoken of their fears of what will happen to them with reduced support.
Local authorities have stated that transfer
of responsibility to local authorities will mean that many current ILF
recipients will get less funding, and the government accepted this in their
recent Equality
Analysis. However, they argued in their response to the consultation on
closure,“All
disabled people, including those transferring from the ILF, will continue to be
protected by a local authority safety net that guarantees disabled people get
the support they need.”
It is this ‘safety net’ approach that
people fear – instead of being able to aspire to an ‘ordinary life’ they will, at best, be left with just ‘life and
limb’ support (the ‘safety net’ that the government refers to) or, at worst, be
forced into residential care. That this is a realistic fear is evident not
only from the local authority responses to the consultation on closing the ILF,
but also from the National Association of Financial Assessment Officers (the
people who carry out the means-test to determine whether disabled and older
people should be charged for their care).
They told the government’s consultation on closing the ILF that “some
councils may determine that residential care would be a less expensive option
than a high cost homecare package. “
The closure of the ILF is part and parcel of the attack on public expenditure, an attack which is usually justified in general terms about how much our economy can ‘afford’ and played out in arguments about billions of pounds and percentages of GDP. But what this is really about is whether we can ‘afford’ to enable disabled people to lead the kind of lives non-disabled people take for granted.
This question was also implicit – and needs to be
made explicit – in the recent debate about the so-called benefits cap. Including Personal Independence Payment, Disability
Living Allowance, Attendance Allowance, Carers Allowance and Employment Support
Allowance in the cap means that we can only ‘afford’ to provide funding to
support a certain number of disabled adults and children.
This assumption is already being played out in the
replacement of Incapacity Benefit with Employment Support Allowance. The last Labour
government, followed by the current Coalition government, implemented the
change with the target of reducing the numbers receiving the benefit by 1
million.
Kaliya Franklin illustrates
the mechanism for bringing about a reduction in the numbers recognised as
disabled or ill and needing support. The Department for Work and Pensions did
not need to set formal targets for finding people ‘fit for work’. All they needed to do was to decide what
percentage of people needed to be found ineligible for support in order to meet
the projected savings, and then introduce a test – the Work Capability
Assessment – which measured people against these norms. As Franklin
describes, the Personal Capability Assessment determined eligibility for
Incapacity Benefit by assessing whether someone met certain criteria. In contrast, with the introduction of the WCA,
“People must both score the
number of points required for benefit receipt and fall within the proportion of people the norms system
will allow to receive the benefit.”
A similar system is being introduced with the
replacement of Disability Living Allowance by Personal Independence Payment –
with the intention of cutting the budget by 20%.
All these policies have one motivation – the desire
to bring about a smaller state, fuelled by an ideological belief in ‘the
market’ and by the self-interest of people who benefit from privatisation of
public services. The closure of the ILF may seem – to many political activists
- like an issue only affecting a small number of people and as on the periphery
of the wider debates about what kind of society we want. But it isn’t a minor
issue – it is indicative, and part, of the huge impact that current policies
are having on all our lives, whether directly or indirectly or in the future as
we grow older.
Rosalie Wilkins, another member of the House of
Lords, said
in yesterday’s debate:
“The government have been given the clearest of
warnings that their plans to close the Independent Living Fund and transfer its
responsibilities to local authorities could relegate thousands of disabled
people to residential care – either that or they would be living such reduced
lives that they would be deprived of their current ability to live
independently, have a family life, be educated, be employed, do voluntary work
and contribute to their communities. Is
the coalition Government honestly willing to accept this?”
Or, to put it another way, a year ago Guardian columnist Zoe Williams, asked the
government a question we would all like an answer to – “What's your plan for
these people whose lives we apparently can't afford?”
In the meantime, it
seems that the Courts are the only light on the horizon. As I wrote in a previous blogpost,
although the High Court did not allow the appeal mounted by five ILF users
earlier last year, the judge warned that the government should take action in order to protect ILF users and, in particular, to fulfil the
government’s obligations under the UN Convention of the Rights of Disabled
People. He stated that if the forthcoming legislation on social care, or the
Code of Guidance on transferring responsibility for ILF users to local
authorities, “does not arrive in time or turns out to be too anaemic in content
to enable the Convention principles to be brought to bear in individual cases”,
then there would need to be re-consideration as to whether the Public Sector
Equality Duty had been fulfilled. He also said that this would also be
the case:
“if the level of
Treasury funding for disabled people generally or for this class of ILF users
in transition back to [local authority provision] in particular is so austere
as to leave no option but to reverse progress already achieved in independent
living”.
The importance of the
human rights framework has been highlighted by the Supreme Court which recently
ruled
that:
“[I]t is axiomatic
that people with disabilities, both mental and physical, have the same human
rights as the rest of the human race...This flows inexorably from the universal
character of human rights, founded on the inherent dignity of human beings, and
is confirmed in the United Nations Convention on the Rights of Persons with Disabilities.
Far from disability entitling the state to deny such people human rights: rather
it places upon the state (and upon others) the duty to make reasonable
accommodation to cater for the special needs of those with disabilities.”
Yesterday, the
government rejected Jane Campbell’s proposal that the impact of the closure of
the ILF should be monitored in partnership with disabled people and their
organisations. This is something therefore
that we need to do for ourselves. We need the better resourced
national disability organisations to work together with local disabled people’s
organisations to keep track of what is happening, disseminate it widely, and
support individuals to mount legal challenges.
