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.