Self-determination – in the sense of being
able to act on, and/or have others recognise, your needs and aspirations – is
key to the transformation of support which disabled people and their allies
have been seeking over the last 40 years. More than that, it is central to
disabled people’s demands for access to full and equal citizenship. As Simon
Duffy argued, in making the case for the rights of people with learning
difficulties to citizenship:
“Put simply, if you have self-determination
then this means you are in charge of your own life. If you do not have self-determination then
other people are in charge of you” (Duffy, Keys
to Citizenship, 2003, p.5).
In the current debates about personal
budgets and social care, we are in danger of losing touch with this.
This blogpost has been prompted by an article
in the Guardian which attacks the
roll out of personal budgets, cites research
on limitations of self-directed support, and refers to a letter that has been
sent to all Directors of Adult Social Services arguing that “the strategy for
personal budgets and personalisation is not only failing: it is also
undermining the quality of the care and support provided”.
The article claims that “SDS [self-directed
support] has failed to deliver its foundation stone, the up-front allocation of
money to allow people to choose their own support”. There is a danger here of
confusing the principle of self-directed support with one of the mechanisms for
self-assessment and support planning – the purpose of the ‘up-front allocation’
being to give the individual an idea of how much their budget might be in order
that they can plan how their needs might be met.
The author also says that the “over-arching
vision” of current social care policy “is to personalise services and so
improve outcomes for service users”. This is not in fact what the original aims
of personal budgets were: instead their origins are closely tied to the
pressure from disabled people for choice and control over the support they need
to go about their daily lives. In other words, the focus was not on
personalising services but on
increasing the autonomy of disabled people. Choice and control over the support needed in
your daily life means you can aspire to self-determination – without such
choice and control many people can’t even choose when to get out of bed or go
to the toilet, let alone participate in or contribute to their families,
communities and the wider society.
I wrote about the history of direct
payments and independent living in an earlier blog
post, emphasising how important it is to know where we’ve come from in the
context of addressing current challenges. It’s similarly important to consider how
personal budgets came to be adopted by both the Labour government and the
current Coalition government, in order to understand the contradictions and
difficulties we are facing in their implementation.
How did we get here?
During 2004, the Prime Minister’s Strategy
Unit was developing a 25 year cross-government strategy Improving the Life Chances of Disabled People. In developing the
chapter on independent living, the Strategy Unit built on not just the
experience of disabled people’s organisations and direct payments, and the
success of the Independent Living Fund but also the pioneering work that In
Control had been doing on individual budgets (primarily but not entirely
for people with learning difficulties).
What all these things had in common was
that disabled people were able to decide, for themselves and/or with the help
of families, friends and supporters, how to use the resources which the State
made available to them to support them in their daily lives.
However, while all these initiatives had
been helpful in giving people more control over the support they needed, they
only involved resources available for ‘social care’. Yet one of the key messages from disabled
people was that they were fed up with their lives being fragmented across
different services and budgets. For example, the division between community
health and social care services resulted in the ludicrous argument about
whether the need for a bath was a ‘social’ need or a ‘medical’ need; while
people claiming Access to Work support often had to face the argument from the
Department of Work and Pensions (DWP) that they couldn’t fund a wheelchair used at
work because it was also used at home.
Another key message was that disabled
people’s own expertise in what their needs were and how to meet them was
considered subordinate to professional expertise; while another was that some
people, or the family members supporting them, wanted more control over
resources but were daunted by the responsibility of taking a direct payment and
organising their own support.
Life
Chances therefore committed the government to
developing a new system of delivering support which would include:
-
“a simplified resource
allocation system, including ‘one stop’ assessment and information”, which
“addresses all aspects of needs for support and/or equipment or adaptations”
-
Individuals being able to “take
some or all of their budget as a cash payment and/or to have control over the
budget (with support if necessary) without actually receiving the cash”
-
“self-assessment, with
advice/information or advocacy support where required”
-
Each local authority area
having a user-led organisation, modelled on existing Centres for Independent
Living, which would provide support to disabled people to enable them to use
individual budgets and direct payments.
The key elements of this proposed new
system can thus be seen as:
-
bringing together different
budgets and systems to deliver resources in the form of a cash payment and/or
budget under the control of the individual disabled person;
-
based on self-assessment of needs
and how best to meet those needs;
-
together with the provision of
advice, information and advocacy required to make full use of such resources.
There was a lot of resistance, at senior
level, within the Department of Health to these proposals but there was
eventually agreement to pilot individual budgets, which would bring together
six different funding streams. There was
also a specific project funded by the Department of Health to deliver the commitment
on user-led organisations – a project which had some success even at a time
when cut-backs were being made to local voluntary organisations, and which
continues today in the Office for Disability Issues’s Disabled
People’s User-Led Organisations programme
However, the attempt to bring together six
different funding streams in the Individual Budgets pilot failed owing to the
inability of the different government departments to work together to bring
this about – there was a lack of understanding about, and support for, the
rationale underpinning the policy, particularly within the DWP. At the same time, the
Department of Health was developing a strategy with the aim of ‘transforming
adult social care’. This resulted in Putting
People First: a shared vision and commitment to the transformation of adult social
care and included a commitment to personal budgets for social care,
which owed much to the support of Ivan Lewis MP for the policy.
While the proposals set out in Life Chances – and the Independent
Living Strategy which followed in 2008 – were clearly grounded in the
aspirations of the independent living movement, the Department of Health’s
proposals were couched in terms of personalising social care services. There is a potential tension between an
approach which focuses on ‘tailoring services to individuals’ and one which
focuses on the autonomy of an individual to decide how best to meet their
needs. The former approach is more
likely to leave professionals and service providers in charge of deciding how
best to ‘personalise’ services while the latter requires a fundamental
transformation of power relationships.
Nevertheless, the implementation of
personal budgets built on the model originally developed by In Control – which
does aim to transfer power (in the form of information and resources) to
disabled people. A key part of this
model is telling people, at an early stage, what level of resources they might
expect. This was considered necessary to
enable people to be fully involved right from the start in deciding how best to
go about meeting their support needs. It also places disabled people on more of
an equal footing with social workers/care managers, who themselves usually have
an idea of what level of resources are likely to be available. It does not –
and was never intended to – replace the local authority’s statutory obligation
to carry out a needs assessment as laid down in legislation, guidance and case
law.
Barriers to self-directed support
Personal budgets, like direct payments, are
merely a tool - albeit a necessary one – to enable people to have choice and
control over the support they need. If
you don’t have control over the resources – in the form of a cash payment or a
budget – then you cannot self-direct your support and your self-determination
will be severely curtailed. As Think
Local Act Personal state on their website, “The aim of self-directed
support is to give people control over their support so that they can live more
independent lives. Rather than being passive, people are active citizens
choosing how to spend their allocated budget with or without help”. Yet this is
what current critics are urging government to jettison.
Of course, there are also other things
which are necessary for self-determination: the level of resources must be
sufficient; there must be an absence of unnecessary restrictions on how the
resources can be used; information and advice will be needed about how best to
use resources; assistance from others may be necessary in order to plan how
best to meet needs and put the support in place; and there must be appropriate
services, equipment or activities available from which to choose.
It should surprise no-one that there are
many barriers to ensuring all these factors are in place and – in the context
of unprecedented pressures on social care budgets – it is predictable that the
local authority role of rationing scarce resources has become more and more
problematic for those on the receiving end.
Such pressures are manifest in an intensification of bureaucratic
processes associated with rationing activity.
In order to save money, local authorities have reduced the number of
professionally qualified social workers carrying out assessments, increasing
the number of assessments carried out by more junior, less qualified staff,
while increasing bureaucratic procedures in order to keep a tight rein on how
resources are allocated. The introduction
of personal budgets has fallen foul of the economic times in which they are
being introduced, resulting in restrictions on inadequate budgets which – too
often – fail to deliver the self-determination that the policy was intended to
make possible.
To add insult to injury, many councils have
glossed over the impact of budget reductions by talking about ‘personalisation’
and ‘transformation’, using the language of empowerment and choice and control
(as is shown for example in Karen West’s study of one particular
local authority).
The original introduction of direct
payments – from 1996 onwards – similarly often failed to deliver the choice and
control envisaged by campaigners but in that case and at that time it was more
down to the attitude of a lack of trust amongst professionals: a fear that
people might abuse the system and an assumption that many disabled people were
not ‘capable’ of making choices or the ‘right’ choice. Even so, there were occasions – as there are
today - when councils sought to shut down valued services (such as day centres
and residential respite), justifying this as necessary to put control in the
hands of service users but in actuality driven by the wish to cut back
expenditure on expensive, building-based, provision.
One problem for many of us is that the
demand for direct payments and personal budgets can all too easily be seen as a
way of marketising and privatising public services. The problem for disabled people, and their
families, is that – while we may want to defend public services – our
experience is all too often that we have little or no say in how we live our
lives. We can only reconcile the two
positions by developing mechanisms which marry collective provision with
individual choice and control.
Individual choice and control cannot be achieved while power remains in
the hands of institutions and professionals; but neither can it be achieved
unless resources are made available to individuals through a progressive
taxation system. This is what direct payments were intended to do – and where
professionals and local authorities support people to use direct payments then
this is what they achieve. Personal
budgets were a response to the criticism that managing direct payments was too
onerous and daunting for some. They were
intended to deliver the same principle of self-directed support as direct
payments.
We need statutory guidance on self-directed support
The authors of the recent letter to
Directors of Adult Social Services, referred to above, have said that a
personal budget “need be no more than a signal that no support plan will be
constructed solely on the basis of selecting services from a pre-purchased menu”.
This would be to throw the principle of self-directed support out of the
window. The forthcoming guidance on the Care Bill must include the principle of
self-directed support – and set out how Councils should go about delivering
this. It will not be enough to merely
require councils to name the amount of money available in a personal budget. If
the guidance does not include the ways people can direct their own support
there will be no leverage on councils to do anything other than they always
have.
Many local authorities have resisted attempts
to increase transparency in the processes of assessment and allocation of
resources, and all too many professionals have little commitment to
self-directed support as the route to disabled people’s self-determination. It is very unfortunate that flaws in the way
local authorities are implementing personal budgets are being used as a reason
to undermine the principle of self-directed support.
Anything which undermines the gradual
progress we have been making over the last 40 years towards independent living
needs to be resisted. And the current
attacks on personal budgets are undermining that progress. Up-front allocations and support planning
are intended to help redress the balance between professionals and disabled
people. They are being misused by some
local authorities as mechanisms for rationing and controlling what people spend
their budget/direct payment on, and how.
This does not invalidate the value of such mechanisms. Instead, it makes it even more vital that
there is statutory guidance to help ensure they are used to empower rather than
disempower people.
