Personal budgets and self-determination

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.

A society that says we cannot afford too many disabled people

[This blogpost has been amended on 2nd April as I was told that Victoria, who I refer to below, has very sadly died]

Yesterday, 31^st 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.

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.”

(See also http://mentalhealthcop.wordpress.com/2014/03/20/a-gilded-cage-is-still-a-cage/)

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.