Thursday, 24 April 2014

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.

Tuesday, 1 April 2014

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, 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.

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.

Monday, 3 March 2014

The Connor Report: 'Preventable' deaths and the wrong lessons

[Note: I deliberately refer to research and projects from 20-30 years ago in this piece.  One of my motivations for writing this blog is to highlight what has happened in the past because our institutions seem to have so little memory and this too often means the same mistakes are repeated again and again.]

On Monday 24th February, Southern Health NHS Trust published an independent report into the death of 18 year old Connor Sparrowhawk, which concluded that his death was preventable.His mother, Sara Ryan, writes a wonderful blog about her family’s life with, and love for, Connor, with a searing account of the impact of his death and of the further damage that Southern Health has wrought by the way they reacted (summary here). 

Since the report’s publication, a number of blogs have been written which share in Sara and her family’s grief for their loss, highlighting the various findings and implications, and the fears of other families struggling to get support (a summary list of these is here). 

If there is one thing we need to learn from the Connor Report and all those preceding it (including the Confidential Inquiry into premature deaths of people with learning disabilites, which found that over 1200 people with learning difficulties die prematurely each year) it is that the lessons learnt in the past have been the wrong ones.  Otherwise it wouldn’t keep happening. 

After every one of these inquiries, those responsible for poor and/or negligent ‘care’ say that they have ‘learnt lessons’ and put policies and procedures in place to prevent these things happening again.  However, as Rich Watts pointed out , “the independent investigation found that Southern Health had policies, guidance and pathways in place that should have ensured there were minimum standards of care, but that all of these were simply paperwork, and didn’t translate at all into practice”.

We have mountains of strategies, policies, procedures which are about best practice, involving service users and families, and ‘person-centred care’.  Many of these have followed inquiries and research, and are full of good intentions. But the lesson is that writing it down in documents, which are often in fairly inaccessible language, for circulation to managers and down to front-line staff within organisations, doesn’t work.

We should have learnt by now that most ‘best practice’ examples describe face to face contact between disabled people, families, and providers of services.  The ‘best practice’ quoted usually flows from this face to face contact, and from listening to each other, from trying things out, most importantly from working together with individuals and those who love them to sort out problems.

For me, one of the key findings of the report was that: “We found no evidence to show that the experience and knowledge of CS’ parents were captured at the beginning of his admission or included as part of his risk assessment and care plan.”

This failure to acknowledge and use the experience and knowledge of family members is nothing new when it comes to service responses to young people with learning difficulties.  The experience described by Connor’s mother is only one recent example of many which echo Ann Shearer’s comment over 30 years ago: “There is even evidence that the patterns of official help actually make life harder for families….” (Ann Shearer, 1981, Disability: Whose Handicap?).

There is so much research illustrating the difficulty that families have engaging with services and getting professionals to listen to them, particularly in the context of young people’s transition to adulthood.  As Mark Neary says: “Why are families considered the enemy as soon as our dudes move into adult social care? A lifetime of knowledge is instantly dismissed and the professionals invariably adopt a “we know best” position.”

There is also a wider context which concerns the decisions made about what services are provided and how.  People with learning difficulties and those who love them are excluded from these decisions but they have to experience – and sometimes suffer - the consequences.  However, the report into Connor’s death does not cover the role of Oxfordshire Clinical Commissioning Group or Oxfordshire Social Services, who are responsible for whether the right support is commissioned in the first place.  

For many years, research has identified problems with how decisions are made about what services should be provided.  As Tony Ryan concluded in 1998 “The biggest problem is with commissioners because commissioners, here, are somewhat removed from the day-to-day reality” (Tony Ryan, 1998, The cost of opportunity: Purchasing strategies in the housing and support arrangements of people with learning difficulties). There may be a different commissioning structure today but the problems remain the same – and these problems can only be avoided by placing people with learning difficulties, self-advocacy groups and family members at the heart of the decision-making. If we asked not only people with learning difficulties themselves but also those who love them how we as a society should be responding to their needs, maybe Assessment and Treatment Centres wouldn't even exist.  We need much more than so-called 'user involvement' – instead policies and services for people with learning difficulties should be generated by them and by those who love them. 

Commissioners are acting on behalf of us all - using public money to purchase services which are supposed to add to the quality of people's lives.  Connor was in the unit because the support which he and his family needed wasn't provided - local health and social care commissioners need to be asking why not and what help do they, as commissioners, need from people with learning difficulties and their families to enable better commissioning decisions?

I have three practical suggestions which might help to avoid the wrong lessons being learnt from this important report into such an unnecessary death:

1. Open up the commissioning of health and social care services for people with learning difficulties to self-advocacy groups and family members.  Don’t start with the services you already commission but with a blank sheet of paper to identify what kind of support would really make a difference.  Throughout the commissioning process, use the Open Contracting Principles – signed up to by the UK government – and adopt a policy of ‘affirmative disclosure’. 

2. Ask self-advocacy groups and family members to monitor services.  The idea of ‘lay assessors’ is not a new one and commissioners and providers should be placing people who use services and their families at the heart of monitoring how each service is doing.

3. Involve people with learning difficulties and family members in all the different stages of recruiting staff – from drawing up job descriptions and person specifications through to interviewing. As Carl Spaul saysattitude and values are key to making people feel empowered and valued” and people using services are very astute at identifying the attitudes and values which make for good quality care.

All these three things have been done before.  Unfortunately, the experiences and the lessons learnt have not always been built upon and have sometimes been lost.  They need to be revisited. One example of involving people with learning difficulties in the commissioning process was when, in 1994, health and social care commissioners in the London Borough of Newham invited a local People First group to work in partnership with them to both commission and monitor services.  Four ‘speaking up’ groups were set up which over a period of two years influenced what services were commissioned and provided (People First, Newham Social Services, East London and The City Health Authority, 1996, Putting People First: On our way to do things better).

There are also a lot of lessons to be learnt from people with learning difficulties monitoring and evaluating services.  Again this has been done over the last 20 years, one early example being when People First evaluated services for people in long-stay hospital placements and in the community in the London Boroughs of Sutton and Haringey (People First, 1995, Outside but not Inside …yet! Leaving hospital and living in the community: an evaluation by people with learning difficulties). 

In the mid-1990s, the Joseph Rowntree Foundation recognised that more and more organisations were involving people with learning difficulties in recruiting staff and commissioned the Norah Fry Research Centre to explore the extent and benefits of this. 

It would be more useful to learn from, build on, and emulate these types of experiences than to write yet more policies and procedures about what services should be doing.  It is extremely distressing that the long history of inquiries into ‘preventable deaths’ and poor care tend to find the same thing again and again.  And even more distressing that the response is always, "We've learnt from this, we've put in place guidance/policies/procedures/changes".  The most important thing to learn from looking at the Connor Report and the many many others is that whatever we've 'learnt' hasn't been the right lesson. 

We also need to face up to a systemic failure to really value the lives, views and experiences of people with learning difficulties (and a tendency to devalue the knowledge, experience and role of parents and other family members) – which arguably amounts to institutional disablism.  Why don't those responsible for commissioning and managing such provision pay more attention to how people like Connor, and those who love him, are experiencing the service, and what is it adding to his life? This question raises issues not just for providers and commissioners but also for us as a society.

Monday, 10 February 2014

Poverty, morality and politics

In the outline of its Anti-Poverty Strategy Programme, the Joseph Rowntree Foundation states: “We believe that people of different political backgrounds and perspectives want to understand and reduce poverty, and think there is potential to identify consensus on how we do that”.  One manifestation of this was their request to 25 “thinkers across much of the political spectrum” to write about “a compelling and positive vision of a low poverty future and – if authors want to do so – the routes by which we might get there”.

As Julia Unwin said in her Foreword to the collection of 25 essays (published as a special supplement to Prospect magazine):  “A fresh political consensus on how to achieve a low-poverty UK is needed, and while we seek to build it through our work, we also recognise the need to understand different political traditions and current perspectives on poverty”.

I wrote one of these essays, focusing on what a ‘low poverty future’ would mean for disabled people, and when the essays were published I read them in the hope of finding Julia Unwin’s “fresh political consensus”. 

There are certainly some common themes running through the essays.  Most of us argue that poverty isn’t just about low income, with economist Diane Coyle pointing out that it is hard for those who are not poor to understand fully the experience of social exclusion.  Insecurity, isolation, a lack of participation and of autonomy, are all important aspects of being poor and, for example, Harry Burns quotes Jimmy Reid’s speech about alienation: “The feelings of despair and hopelessness that pervade people who feel with justification that they have no real say in shaping or determining their own destinies” – words spoken in 1971 but which resonate today.

Yet as I read through the essays, I realised that they reflect a fundamental divide which stands in the way of the kind of consensus that JRF was hoping for.

Contributors such as AC Grayling and Rowan Williams take an explicitly moral stand on poverty but in fact assumptions about what is ‘good’ can be seen in all of the contributions, some more obvious than others. However, there are differences in whose morality is the focus of attention.  For example, AC Grayling focuses on the morality of those who are not poor to do what is in their power to alleviate poverty.  In contrast, for contributors such as Roger Scruton the primary focus is on what ‘the poor’ should be doing, while for Kieron O’Hara ‘our’ responsibility is limited to leaving “people alone to make their own decisions about how to earn money and to provide an infrastructure to support their decisions where necessary”.

This contrasting emphasis is also reflected in different perspectives on what are the possibilities for change.  Rowan Williams starts from the assumption that “there is no necessity about poverty” and that “what kind of society we inhabit and what provision we make around disadvantage is our choice, not the outworking of some impersonal law, whether of nature or of the market.” 

On the other hand, Christopher Snowdon’s statement that “A universal minimum income of the size implied by the JRF research is quite unaffordable…” is a contradiction of Rowan Williams’ starting point. Throughout the essays it is clear there is a dividing line between those who, like Snowdon, are concerned with what ‘the economy’ (by which he means companies) can afford and what ‘our society’ can afford in terms of the impact of poverty and inequality on social cohesion.

Some contributors put forward visions of a cohesive society, with assumptions about common humanity and argue that too much inequality is bad for all of us.  In contrast, others would follow Snowdon who sees “the war on inequality” as “a war on capitalism and growth”, with Roger Scruton arguing that, in any case, inequality isn’t a bad thing.

Many of the essays assume that human beings have great potential to improve their lives, given the right circumstances and opportunities. However, there is a dividing line between those who focus more on individual agency than on socio-economic circumstances.  For some, recognition of limits to which individuals can protect themselves against poverty or pull themselves out of it means that solutions have to be found at a societal level.   Neal Lawson writes: “… we believe that those who suffer from sheer brute bad luck, who, through no fault of their own, were born less healthy, strong, fast or intelligent than others, need extra help to ensure their equality alongside their fellow human beings.  When misfortune strikes – ill health, loss of work and so on – then society needs to intervene to help people.  We really are all in it together”.

David Goodhart, on the other hand, believes that ‘character’ – formed during childhood – is the ultimate protector from poverty. His approach to poverty challenges JRF’s statement that poverty is “an experience that virtually anyone can go through at some point in their lives”, saying “I can confidently predict that my friend from the council estate [who is now a “successful professional”] will never be poor again, thanks in part to his mother providing sufficient ‘love and boundaries’ when he was young”.

For me this collection of essays has therefore failed to reveal a political consensus.  Instead it has reflected a profound division that lies behind all the debates about what causes poverty and how (and whether) to tackle it.

When I started writing my own contribution, about what a ‘low poverty future’ would look like for disabled people, I was increasingly reminded of my mother telling me as a child to “Do as you would be done by”, the golden rule which lies at the heart of most of the world’s religions and ethical traditions. 

The current political debates about ‘welfare’ divide us from each other: the widely used term (by both Coalition and Labour politicians) of ‘hard working families’ inevitably creates an ‘us’ and ‘them’. ‘Welfare’ is something that others rely on. We can jettison the golden rule of “Do as you would be done by” because we do not put ourselves in others’ shoes – unless of course they offer us inspiring stories of ‘overcoming all odds’, ’pulling yourself up by your own bootstraps’ to become a ‘hard working family’.

We are creating a society where injury, ill health, frailty in old age or the birth of a disabled child means a lonely struggle for survival; where the poverty which follows unemployment, family break-up or other catastrophes is accompanied by the blame and stigma of individual failure. As Suzanne Moore says, the morality underpinning collective responsibility for each other has been removed by the argument that this collective responsibility (i.e. the welfare state) has created “moral disaster” by encouraging “individual weakness” and that it is these individual failings which must therefore be the focus of policy.

So instead of our starting point being what would we want for ourselves, the starting point is about how can we get these ‘other people’ to behave differently.  Instead of challenging whether we can afford an economy which is relentlessly driving down wages, where jobs lack security and decent working conditions, we obsess about what levels of public expenditure ‘we’ can afford.

As a summary of the JRF programme of research on the future UK labour market and poverty concluded, for many people paid work is not a route out of poverty.  Yet the debates waged by our politicians assume that it is, instead of recognising that the problem is the economy, not the individuals who struggle to survive.  Moreover, those debates have written out of existence people who are too ill to work.  Current policies treat as completely invisible people with significant levels of physical/sensory/cognitive impairment, and/or mental health difficulties, while family members who care for them face £1bn cuts in financial support by 2018.  

People living in poverty, who are most affected by social and economic policy, have no role in policy-making.  An example of how this could change is the Leeds Poverty Truth initiative, launched on 7th February which “will be led by people with first-hand experience of poverty, working with the city’s civic and business leaders to not just change what we do about poverty in the short term – but to permanently change how we tackle poverty in our city”.

Morality and morals are words not often heard in the context of politics.  But perhaps we should make clearer the morality of those who assume a right to decide what is best for those ‘others’ with whom they are so reluctant to identify.

Wednesday, 29 January 2014

“If you don’t know your history, you’re like a leaf that doesn’t know it’s part of a tree”.

SPECTRUM (previously Southampton Centre for Independent Living) recently hosted an event to mark the 30th anniversary of the origins of the Independent Living movement in Britain.  Someone once said “If you don’t know your history, you’re like a leaf that doesn’t know it’s part of a tree”.  As local authorities implement ‘personalisation’ in adult social care in the context of unprecedented cuts, it’s vital that we keep hold of the lessons learnt from past struggles by disabled people to live ‘ordinary lives’.

SPECTRUM’s event focused on the achievements of John Evans, one of the members of Project 81, a group of residents at Le Court Cheshire Home in Hampshire in the late 1970s.  John became paralysed as a result of an accident in his 20s and, like other ‘severely disabled’ people faced a lifetime of isolation and dependency in institutional care.

John concluded that if health and social care authorities gave him and others some of the money that they currently gave the Leonard Cheshire Foundation, “we could find another way of meeting our needs”. This was the radical idea that opened the way to what became the campaign for direct payments and underpins (or should underpin) the current roll-out of personal budgets for adult social care.   Crucially, it wasn’t just about the money that could be saved but about giving disabled people control over how their support needs are met.

However, it was illegal for social services authorities to pay cash to disabled people in lieu of services. John therefore proposed that Leonard Cheshire Foundation should act as a ‘sponsoring’ organisation and pass on to him the money that Hampshire Social Services would pay to enable him to employ people to provide the assistance he needed in his own home. 

John got his inspiration from other disabled people – not only in Britain but also in other European countries and in the USA – and this learning and support shared amongst disabled people has been a consistent theme in how independent living has developed since then. His achievement in finally moving into his own home in 1983, employing his own personal assistants marked the beginning of the Independent Living Movement in Britain. 

That achievement and progress since then have also been made possible by the small numbers of people working in statutory and voluntary sector organisations who share the vision that disabled people should have the same aspirations as anyone else.  It took another 13 years before the campaign for direct payments resulted in the Community Care (Direct Payments) Act 1996, years during which some far-sighted social workers and a few Directors of Social Services worked in partnership with disabled people to demonstrate that people who need support should have choice and control over how that support is provided.

Although it was people with physical impairments who started the campaign for direct payments in lieu of social care services, People First – the national organisation of people with learning disabilities - was very effective in convincing the government that people with learning disabilities should also be able to receive direct payments. Eventually direct payments were opened up to everyone entitled to social care support: older people, people with mental health support needs, carers and disabled children.

All through this campaigning disabled people tried to bring about a shift in the meaning of ‘independence’ and ‘independent living’.  As Simon Brisenden wrote in 1989,

Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.[1]

John’s journey towards independent living also involved the setting up of Hampshire Centre for Independent Living in 1984  – the first CIL in the UK: by 2004 there were about 40 such organisations, run by disabled people, employing disabled people, which provided the practical and campaigning support to enable thousands to use direct payments, as well as tackle other basic needs such as housing, access, employment and education. [2]

At the same time, there were radical developments in support for people with learning disabilities.  The National Development Team and visionary civil servants within the Department of Health, together with other pioneers working in local authority and voluntary learning disability services, individuals and their families were treading the same path as John Evans and the growing Independent Living Movement. One result was the 2001 White Paper, Valuing People: A new strategy for learning disability, based on the four principles of “civil rights, independence, choice and inclusion” and promoting person-centred planning.  At the same time, In Control demonstrated that allocating a specific budget to an individual and enabling them to express their preferences for how they want to live their lives was a more effective and efficient use of public resources.

Both strands had a big impact on government and on the social care policy agenda.  To some extent these came together in developing the 2005 strategy, Improving the Life Chances for Disabled People.  This adopted the social model of disability and defined independent living as:

all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.[3]

The Strategy proposed the piloting of individual budgets, while in 2007 the Department of Health published Putting People First, a policy for personalising social care services.  All of this led to the roll out of personal budgets for adult social care and most recently personal health budgets.

We might think, from this account, that those who have been campaigning for independent living all these years have achieved what they were struggling for.  But that is far from the case – and it is not just because we are currently facing unprecedented cuts to public services and a return of extremely negative attitudes towards disabled people.

Throughout the last 30 years, disabled people have struggled, but failed, to establish a right to independent living.  The nearest we have got to that is that local authorities now have to offer a direct payment in lieu of services but there is no entitlement to a level of payment which would guarantee access to IL.  There is also no entitlement to support to use direct payments – in the way that was envisaged by Centres for Independent Living.

Local authority social services departments remain in control over how people access support.  For all the rhetoric about ‘personalisation’ and ‘choice and control’, the process of getting a personal budget or direct payment is usually dominated by complicated procedures devised by the local authority because they fear risk, mistakes and fraud. And because all too often people working in statutory, and some voluntary sector, organisations think that they know best.  Access to support has always been dominated by the rationing of scarce resources and this is getting worse but is too often masked by the rhetoric of ‘personalisation’.

Often disabled people, and those supporting them, have no knowledge of the history of the struggle for independent living.  Their experience of ‘personalisation’, of personal budgets and of direct payments is dictated by the local authority workers with whom they come into contact.  Too often these workers themselves have no knowledge of where the policies they are implementing came from, and their practice is dictated more by bureaucratic procedures than by the principles of independent living. These procedures deliver personal budgets in ways which do not enable choice and control – such as restricting their use to an ‘approved’ list of agencies.  Too often people are still not able to choose who provides their support, or what they are supported with and when. Everyday language is replaced with meaningless jargon.  Limitations are placed on people because of a fear of ‘risk’ and far too often local authorities do not trust people to use their budgets in ways which will achieve good outcomes.

When John Evans became disabled in the 1970s, he passed from a life where he took self-determination for granted to a life where his daily experiences, his aspirations and his future were curtailed by others.  He and the other pioneers of independent living changed our way of thinking about what is possible.  The problem is that access to the resources which would make independent living possible is still determined by those who, all too often, have little or no understanding of where current policies come from.  There remains a yawning gap between policy rhetoric and reality, a gap made possible because – as 30 years ago – disabled people still do not have a legal right to choose how they receive the support needed to go about their daily lives. 

[1] Simon Brisenden, ‘A Charter for Personal Care’ in Progress, 16, 1989. Disablement Income Group.

[2] Twelve basic needs or rights were eventually identified by the independent living movement: see

[3] This was taken from the Disability Rights Commission’s Policy Statement on Social Care and Independent Living (2002), written by Gerry Zarb.