The Court of Appeal’s decision
to allow the appeal against closure of the Independent Living Fund has given us
a chance to step back and consider why we are really opposed to the closure of
the ILF. Up until now the main focus has
been on how the closure would be a disaster for disabled people because local
authorities are not in a position to make up the shortfall when responsibility
is transferred to them (see, for example, this excellent analysis
by DPAC).
However, this is an argument that belongs
to this point in time, in the context of the draconian cuts to local authority
budgets. There are those who argue
that, if personalisation of social care was properly funded and properly implemented,
then it would make sense for disabled people’s independent living needs to be
met by social care services.
But would it?
Consider the history of the Independent
Living Fund. It was set up to replace
the Domestic Needs Allowance, a social security payment which covered the
additional costs of those people who needed help with ‘ordinary domestic tasks’ like cooking and
cleaning (see my previous blog). It was thus part of a system based on
entitlement – if you met certain criteria you had the right to a certain amount
of money. Up until 2008, the Fund was not cash limited and therefore the
assessment of eligibility did not include any element of rationing scarce
resources. Neither were there the local variations in people’s experiences of
getting help which are so much part of the local authority social care system
(except, after 1993, variations in access created by local authorities’
gate-keeping role).
Research has always found
that disabled people generally had positive experiences of ILF assessments and
there was little evidence of the ‘social worker knows best’ type of attitude
which many complain about when receiving social care assessments.
Even the 2007 Review of the ILF – used by the current government to justify
its closure – highlighted the favourable experiences of assessments, and its
much valued and “unusual” example of national portability. Whatever the faults
of the ILF, its relationship with disabled people was different to that of
social services professionals who – struggle as many do to be more empowering –
are working within a culture with a long history of ‘doing unto’ people and a
strong, often now overwhelming, element of gate-keeping scarce resources.
If you have an
impairment and/or long-term ill health in our society you face additional costs
of daily living. Currently, these
additional costs are recognised partly through the social security system
(DLA/PIP) and partly through social care. In its original form (between 1988
and 1993) the ILF – although set up as a discretionary trust – was part of the
social security system: cash grants were delivered on the basis of entitlement,
were not cash-limited, and, to begin with, it wasn’t even clear that they were
means-tested. From 1993, ILF funding became a hybrid, sitting between the two
systems – funded out of the social security budget but accessed once someone
qualifies for a certain level of social care.
The question is: Why
do we think that it’s appropriate that some additional costs are funded via a
system of entitlement based to a large extent on objective criteria (imperfect
though this is) and some via a system of cash-limited, professional social work
judgements about what a person’s ‘needs’ are?
Now that we have a
United Nations Convention covering the rights of disabled people, with the
right to independent living at its heart, why do we think it’s appropriate that
our assistance needs are met within a system called ‘social care’?
For years, disabled
people and our allies have tried to reform social care systems so that these
systems and their resources are used to deliver the building blocks to true
citizenship. In the 1990s, we worked to
develop understanding about the difference between a ‘needs-led assessment’ and
a ‘service-led assessment’. In vain we
struggled to stop social care assessments being about rationing, about fitting
people into existing services. Then we
thought that direct payments would deliver choice and control, yet once
implemented they were subject to such bureaucratic monitoring and restrictions
on how they could be used that the original vision was all too often
impossible. During the 2000s, we thought that personal budgets, Resource
Allocation Systems, service brokerage, self-directed support could all
transform social care into an empowering mechanism for delivering independent
living.
Most developments in
social care over the last 30 years have been driven by people who are very
committed to empowering the people for whom they provide services. There are many individuals who I admire for
their dogged determination to keep trying to bring about a real transformation
in the system and in people’s lives – and some things have changed for the
better and many individuals have benefitted.
But progress has been
very limited, has arguably stalled in the current climate, and – in any case –
can ‘social care’ really deliver a right to independent living?
When I was working on
Improving the Life Chances of Disabled
People – the Labour Government’s 25-year strategy for delivering full
citizenship for disabled people - we identified the following characteristics
as necessary for delivering independent living:
- a single
system which would address all aspects of disabled people’s needs for support
and/or equipment or adaptations
- choice and
control over the resources allocated
- self-assessment
to be a key part of the process of determining eligibility, acknowledging
disabled people’s expertise in how to best meet their needs
- access to
advocacy where this is needed.
Disabled people have
long argued against the fragmentation of our lives across different budgets and
services. We have argued that we have the expertise about how best to meet our
needs for additional support so that we can go about our daily lives. The Right
to Control – an attempt by the last government to bring together six
different funding streams – was just one example of how this could be
done. Disability Rights UK has recently recommended
that employment support funding should be put in the hands of disabled people
themselves, rather than the myriad of contractors and sub-contractors who have
such a poor record of success. Neil Crowther’s argument
that we need something like an Access to Living fund which brings together all
the different sources of funding daily living costs is just the most recent
example of an idea which goes back 30 years or more.
It is no coincidence
that disabled people were prepared to fight to preserve the Independent Living
Fund. It is no coincidence that the ILF has been particularly effective at
enabling people with high support needs – including people with significant
learning disabilities who otherwise end up in institutional care – to live in
their own homes. Far from abolishing
the ILF we need a system which builds on the way it has enabled
thousands to lead ‘ordinary lives’. We need a system which funds the additional
costs that disabled people have – of all ages, and across the whole range of
impairments and long-term health conditions. It needs to be a nationally
consistent system, with no element of post-code lottery. And it needs to be based on universalist
principles, like child benefit and DLA/PIP are.
Universal payments, unlike means-testing, are the most efficient way of
delivering support, having lower administration costs and creating no
disincentive to employment or to increase wages and hours of work. What is more, by recognising additional costs
they help reduce poverty and inequality.
Critics may say this
is unrealistic – particularly in the current context. I would say that those disabled people who
were willing to go to court to defend their right to independent living have
shown us that we need something worth fighting for – and the current tinkering
with the social care system is not it.
Building on what is good about the Independent Living Fund gives us many
more opportunities for working towards the goal of implementing, in full, the
vision of independent living that disabled people have been fighting for over
the last 30 years.
