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 http://www.spectrumcil.co.uk/about/12-basic-rights/

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

Monday, 18 November 2013

Why we need to build on the Independent Living Fund

The Court of Appeal’s decision to allow the appeal against closure of the Independent Living Fund has given us a chance to step back and consider why we are really opposed to the closure of the ILF.  Up until now the main focus has been on how the closure would be a disaster for disabled people because local authorities are not in a position to make up the shortfall when responsibility is transferred to them (see, for example, this excellent analysis by DPAC).

However, this is an argument that belongs to this point in time, in the context of the draconian cuts to local authority budgets.  There are those who argue that, if personalisation of social care was properly funded and properly implemented, then it would make sense for disabled people’s independent living needs to be met by social care services. 

But would it? 

Consider the history of the Independent Living Fund.  It was set up to replace the Domestic Needs Allowance, a social security payment which covered the additional costs of those people who needed help with ‘ordinary domestic tasks’ like cooking and cleaning (see my previous blog).  It was thus part of a system based on entitlement – if you met certain criteria you had the right to a certain amount of money. Up until 2008, the Fund was not cash limited and therefore the assessment of eligibility did not include any element of rationing scarce resources. Neither were there the local variations in people’s experiences of getting help which are so much part of the local authority social care system (except, after 1993, variations in access created by local authorities’ gate-keeping role).  

Research has always found that disabled people generally had positive experiences of ILF assessments and there was little evidence of the ‘social worker knows best’ type of attitude which many complain about when receiving social care assessments.

Even the 2007 Review of the ILF  – used by the current government to justify its closure – highlighted the favourable experiences of assessments, and its much valued and “unusual” example of national portability. Whatever the faults of the ILF, its relationship with disabled people was different to that of social services professionals who – struggle as many do to be more empowering – are working within a culture with a long history of ‘doing unto’ people and a strong, often now overwhelming, element of gate-keeping scarce resources.

If you have an impairment and/or long-term ill health in our society you face additional costs of daily living.  Currently, these additional costs are recognised partly through the social security system (DLA/PIP) and partly through social care. In its original form (between 1988 and 1993) the ILF – although set up as a discretionary trust – was part of the social security system: cash grants were delivered on the basis of entitlement, were not cash-limited, and, to begin with, it wasn’t even clear that they were means-tested. From 1993, ILF funding became a hybrid, sitting between the two systems – funded out of the social security budget but accessed once someone qualifies for a certain level of social care.

The question is: Why do we think that it’s appropriate that some additional costs are funded via a system of entitlement based to a large extent on objective criteria (imperfect though this is) and some via a system of cash-limited, professional social work judgements about what a person’s ‘needs’ are?

Now that we have a United Nations Convention covering the rights of disabled people, with the right to independent living at its heart, why do we think it’s appropriate that our assistance needs are met within a system called ‘social care’?

For years, disabled people and our allies have tried to reform social care systems so that these systems and their resources are used to deliver the building blocks to true citizenship.  In the 1990s, we worked to develop understanding about the difference between a ‘needs-led assessment’ and a ‘service-led assessment’.  In vain we struggled to stop social care assessments being about rationing, about fitting people into existing services.  Then we thought that direct payments would deliver choice and control, yet once implemented they were subject to such bureaucratic monitoring and restrictions on how they could be used that the original vision was all too often impossible. During the 2000s, we thought that personal budgets, Resource Allocation Systems, service brokerage, self-directed support could all transform social care into an empowering mechanism for delivering independent living.

Most developments in social care over the last 30 years have been driven by people who are very committed to empowering the people for whom they provide services.  There are many individuals who I admire for their dogged determination to keep trying to bring about a real transformation in the system and in people’s lives – and some things have changed for the better and many individuals have benefitted.

But progress has been very limited, has arguably stalled in the current climate, and – in any case – can ‘social care’ really deliver a right to independent living?

When I was working on Improving the Life Chances of Disabled People – the Labour Government’s 25-year strategy for delivering full citizenship for disabled people - we identified the following characteristics as necessary for delivering independent living:

-   a single system which would address all aspects of disabled people’s needs for support and/or equipment or adaptations

-   choice and control over the resources allocated

-   self-assessment to be a key part of the process of determining eligibility, acknowledging disabled people’s expertise in how to best meet their needs

-   access to advocacy where this is needed.

Disabled people have long argued against the fragmentation of our lives across different budgets and services. We have argued that we have the expertise about how best to meet our needs for additional support so that we can go about our daily lives.  The Right to Control – an attempt by the last government to bring together six different funding streams – was just one example of how this could be done.  Disability Rights UK has recently recommended that employment support funding should be put in the hands of disabled people themselves, rather than the myriad of contractors and sub-contractors who have such a poor record of success. Neil Crowther’s argument that we need something like an Access to Living fund which brings together all the different sources of funding daily living costs is just the most recent example of an idea which goes back 30 years or more.

It is no coincidence that disabled people were prepared to fight to preserve the Independent Living Fund. It is no coincidence that the ILF has been particularly effective at enabling people with high support needs – including people with significant learning disabilities who otherwise end up in institutional care – to live in their own homes.   Far from abolishing the ILF we need a system which builds on the way it has enabled thousands to lead ‘ordinary lives’. We need a system which funds the additional costs that disabled people have – of all ages, and across the whole range of impairments and long-term health conditions. It needs to be a nationally consistent system, with no element of post-code lottery.  And it needs to be based on universalist principles, like child benefit and DLA/PIP are.  Universal payments, unlike means-testing, are the most efficient way of delivering support, having lower administration costs and creating no disincentive to employment or to increase wages and hours of work.  What is more, by recognising additional costs they help reduce poverty and inequality. 

Critics may say this is unrealistic – particularly in the current context.  I would say that those disabled people who were willing to go to court to defend their right to independent living have shown us that we need something worth fighting for – and the current tinkering with the social care system is not it.  Building on what is good about the Independent Living Fund gives us many more opportunities for working towards the goal of implementing, in full, the vision of independent living that disabled people have been fighting for over the last 30 years.