Wednesday, 28 November 2012

Beveridge would be saying 'It's the economy, stupid'

It was good to hear Jose Harris on Radio 4’s marathon programme on the welfare state yesterday morning.  She supervised the early stages of my PhD in 1977.  I was researching the origins of minimum wage legislation – not our current version but the Wages Boards which were introduced by the 1909 Trades Boards Act and abolished by the Conservative government in 1993.  Winston Churchill, as President of the Board of Trade, made the case for the 1909 legislation, saying, “It is a national evil that any class of His Majesty’s subjects should receive less than a living wage in return for their utmost exertions”.

The campaigns leading to this first intervention by the State to secure a minimum level of wages were focused on women’s ‘sweated labour’ and were often dominated by the trade unions’ argument that men’s wages should be a ‘family wage’ which supported women in their role as wives and mothers. However, the most influential players at the time were in fact a small group of employers who firmly believed it was not in their own, nor in the wider society’s, interest to have large numbers of people living at subsistence level.  This was not so much because they feared social unrest but because they feared the long-term damage that subsistence wages and very poor working conditions were doing to society.  Low wages created an inefficient unhealthy workforce and unfair competition from employers who had no interest in the general modernisation of industry.

This group of mainly Quaker employers, led by George Cadbury and his newspaper the Daily News, won the argument against those who they saw as irresponsible ‘laissez faire’ employers whose actions might lead to short-term gains but which would be accompanied by increasing poverty and long-term economic disadvantage.

My thesis was that it was the influence of these employers that led to the State intervening to prevent unfettered economic forces from driving down wages to poverty levels.  And I thought of this when listening to the three hour programme on the welfare state yesterday morning.  It was admirable of the BBC to devote such time to the issue but – like almost all the current public debate on welfare reform – there was very little mention of what is arguably the most important one of Beveridge’s five pledges; the commitment to full employment. 

This commitment was crucial because without it the other four pledges become financially unsustainable.  Full employment requires the State to take responsibility for what kind of economy we have instead of leaving it to market forces. Beveridge recognised this and his 1944 report Full Employment in a Free Society proposed, as Jose Harris describes in her biography:

A totally new kind of annual budget, which would use taxation, borrowing and deficit-financing to determine the levels of public expenditure, business investment and consumer demand.

After more than 30 years of governments taking less and less responsibility for our economy, the viability of our welfare state is determined not by what we want for ourselves, our families, our communities, but by the demands of global capital which in pursuing the lowest production costs abdicates responsibility for the long-term social consequences of low waged, low tax, low regulation economies.   

It was the demands of global capital which created high levels of unemployment in areas previously dominated by industries which moved production elsewhere in pursuit of lower wages.  The same economic forces are leading to an increase in insecure, low paid work.   These are the factors which create long-term unemployment and reliance on benefits, not individual characteristics of ‘malingering’ and ‘dependency’.

Unfettered global economic forces particularly affect those who employers would not choose to employ unless there is a shortage of labour supply.  And it is therefore the behaviour of employers and investors that should be the focus of government policy, rather than the hounding of people who have no option but to depend on benefits for their survival.  

I think Beveridge, if he were alive today, would be pointing out that:

- high levels of secure employment, at wages sufficient to sustain a reasonable standard of living, are incompatible with the way our economy is currently configured
- a progressive taxation system is incompatible with both the economic reality of, and the ideology associated with, the requirements of global capital
- it is these factors which make a welfare state, based on universal principles which delivers social and economic rights, economically unviable (not the creation of a ‘dependency culture’).

Or to paraphrase an American president he would be saying ‘It’s the economy, stupid’, not the welfare state that’s the problem.

Most crucially, I think he would be demanding that we recognise, confront and reform the dysfunctional ways in which our economy is currently configured, and that he would insist that such a challenge is necessary if we are to have a society which supports people when they need it, rather than the ‘sink or swim’ kind of society which we are rapidly becoming.

Tuesday, 20 November 2012

Welfare reform will increase the numbers of disabled children.

A key motivation fueling welfare reform is the government’s desire to reduce the numbers of people who qualify for disability benefits – whether this is the out-of-work benefit, Employment and Support Allowance (previously Incapacity Benefit), or the additional costs benefit, Personal Independence Payment (previously Disability Living Allowance).

Yet the impact of welfare reform will also increase the numbers of children growing into adulthood with long-term impairment and/or ill health.

This is for two reasons:

1.  In spite of the recent statistical blip (caused by the reduction in median income rather than by any real decrease), child poverty is expected to rise from 2012-13 and – if nothing stops this upward trend – one in four children will be living in poverty by2020. 

2.  Children who grow up in poverty are more likely to acquire a long-term disabling condition by the time they reach adulthood.

This latter point is revealed by research carried out by the Institute of Health at the University of Warwick which asked the question: “To what extent is early social disadvantage associated with long-term disabling conditions in later childhood?”  Analysing data for 1991 and 2001 from the Office for National Statistics Longitudinal Study, they found:

        The odds of developing chronic disabling conditions in later childhood increased as the level of household disadvantage rose
        For children in the most disadvantaged group in 1991, the odds of developing chronic disabling conditions by 2001 were more than twice those for children living in the least disadvantaged households.[i]

In other words, a non-disabled child under the age of 10, whose parents are poor, is more likely to become disabled by the age of 20 than a child whose parents are not poor.

When this research was raised in a recent House of Lords debate, the response was: “The Government are indeed committed to tackling child poverty but believe that it is key to tackle the causes ratherthan to treat the symptoms”.  

The problem is that current welfare reform policies are based on an ideological, rather than an evidence-based, view of what the causes of poverty are (as is very evident from the consultation on changing how to measure child poverty).  At the heart of current welfare policy is the assumption that paid employment is the route – the only route – out of poverty.  This is despite evidence that there are more poor families where at least one member of the household is working than where no-one is working and 61% of children in poverty have at least one parent in work – up from 45% in the mid-nineties.
Rather than focus on the problem of in-work poverty, however, the government’s ideologically driven approach to policy assumes, not only that paid employment is the only route out of poverty, but that it is the motivation and behaviour of individuals that is the key barrier to getting work.  Factors over which people have no control – the number and type of jobs in their locality, ill health or impairment, the behaviour of employers – are no longer recognised.

Poverty and disadvantage are therefore to be tackled by instilling individual responsibility and effort through financial incentives delivered by the benefit system.  It is this ideology which lies behind welfare reform – the aim is that no-one will be better off on benefits than in work, and that financial sanctions will create the motivation to get into work.  This principle – rather than evidence – has driven welfare reform with the result that the legislation and its implementation takes no account of real world factors which create insuperable barriers for many people seeking work and affordable homes.

When we objected in the 1980s to Margaret Thatcher’s ‘There is no such thing as society’ stance, we were objecting to the notion that, in times of need, individuals could only rely on themselves and their families, rather than also on the wider society.  Today we have an approach which is in many ways the other side of the same ideological coin – a refusal to recognise the influence of socio-economic factors on individual life-chances. 

The refusal to acknowledge the influence of factors over which individuals have no control, is storing up significant problems for the future.  It is ruining lives and will cost our society dearly.

Nowhere is this more apparent than in the relationship between childhood disability and poverty. Current government policies, by increasing childhood poverty, will increase the numbers of children growing into adulthood affected by impairment and/or long-term ill health.  Once they reach adulthood, however, they will meet a system which tells them that their reduced employment prospects are down to their lack of motivation and their own individual failings, and condemn them to a quality of life which doesn’t really bear thinking about.

[i] This research was summarised by Lord Colin Low in a debate in the House of Lords on 11th October

Friday, 4 May 2012

Disabled people do have rights....

The disability movement has for many years campaigned for a legal right to practical assistance for those who need support to go about their daily lives.  While others talk of ‘care’ for ‘vulnerable’ people, we have made the case for a right to the kind of assistance, adaptations and equipment which enable disabled people to access the kind of life that non-disabled people take for granted.  The right to choose when you get up in the morning, the right to assistance over necessary personal care, the right to the help needed to participate in family and community life and in society generally. 

The first time that anything like this kind of right was included in British legislation was the 1970 Chronically Sick andDisabled Persons Act (originally a Private Members’ Bill campaigned for by Alf Morris MP). Section 2 of this legislation says that, if a disabled person is assessed as needing assistance, equipment or adaptations, then their local authority has a duty to make arrangements to ensure those needs are met. 

This entitlement was strengthened in the late 1980s when further legislation was passed – the Disabled Persons (Services, Consultation and Representation) Act 1986 - to provide an entitlement to an assessment of needs covered under Section 2 of the 1970 Act.  However, it took many years of campaigning and advocacy for disabled individuals to access their rights under this legislation. One key initiative was an Advocacy Project run by RADAR in the early 1990s which sought to increase awareness amongst both local authorities and disabled people of the statutory rights provided under Section 2.  The advocacy provided by this project - which published a report called 'Disabled People have Rights' - led directly to a series of court cases which established some important precedents.

One of the most important involved Gloucestershire County Council who, in order to make cuts to their social care budget, had reduced the amount of support provided to those receiving home care services.  A series of legal challenges established, firstly that support could not be arbitrarily reduced without re-assessing an individual’s needs, and secondly that, as lawyer Luke Clements explains, “once a local authority has decided that a person has ‘eligible needs’, these must be met irrespective of resource arguments”.

The Gloucestershire and other cases established that, while a local authority could take resources into account in their definition of ‘eligible needs’, once it has been decided what levels of need are to be classified as ‘eligible’, then, if a person is assessed as meeting that level of need, arrangements have to be made to meet those needs – and the arrangements have to be related to the circumstances of that particular individual. 
Unfortunately, in practice, the legislation and case law does not provide sufficient protection of disabled people’s rights – primarily because some local authorities continue to ignore their statutory duties. Often they do this as a result of ‘custom and practice’ – in other words it isn’t written down as a formal policy but is something that is part of the everyday practice of decision-making.  One of the most common examples of this is the practice of placing a limit on the amount of funding that will be approved for individual care packages.  This amount usually varies according to which ‘social care’ group someone is placed in, for example the ‘cost ceiling’ applied to home care or residential care placements for older people is lower than that for people have learning disabilities and/or physical impairments.

Occasionally, local authorities are bold enough to put such illegal practices in their policy documents and recently the website False Economy highlighted one of these.  In a budget paper titled “A fair budget for a fairer city”, Newcastle City Council set out its proposal to:

It is unusual for a council to be open about this kind of action (and indeed about their existing policy relating to older people), not least because it is in clear breach of community care law.  A local authority should not take a decision that an individual’s needs will be responded to by providing no more than a certain level of service or funding.

Even without such a blatant statement which contravenes statutory obligations, funding panels often act in ways which are open to legal challenge. This is because they often fail to take full account of the needs and circumstances of the individual who has been assessed and instead apply a depersonalised and generalised format with the sole purpose of rationing resources. As Luke Clements and Pauline Thompson point out, in their book Community Care and the Law, such practices have been successfully challenged in the courts, though in many instances, individual cases have been settled to avoid litigation.

Such illegal rationing mechanisms are particularly worrying in the context of the closure of the Independent Living Fund and the government’s assumption that local authorities will replace the funding that would previously have been received from the ILF by people who have high levels of support needs. It is also worrying in the context of the continuing dearth of advocacy services and of reductions in entitlement to legal aid.  Rights are meaningless unless people know about them and have effective means of redress.

The current legislative framework for social care does not provide a full entitlement to independent living of the kind argued for by many of us (and most recently by the JCHR’s Inquiry into independent living).  However, it does provide some important rights for disabled people and places key statutory duties on local authorities. We need greater awareness about these rights and duties, and the help of organisations and lawyers to enable disabled people to resist the casual denial of their rights which has been all too common in the past, and which will undoubtedly increase in the context of the severe pressure on social care budgets.  We also need a statutory right to advocacy, as set out originally in the Disabled Persons Act 1986 but never enacted.  Perhaps someone can start thinking about how to get this into the next Labour Party manifesto?

Monday, 9 April 2012

The Work Capability Assessment: a case of history repeating itself

Thousands of people’s lives are being turned upside down by the new assessment regime – the Work Capability Assessment (WCA) – used to determine eligibility for out of work sickness benefits (Employment and Support Allowance).

The WCA is based on the biopsychosocial (BPS) model.  This was originally developed as a way of taking a more holistic approach to people’s experience of ill health and impairment.  In its most straightforward application it is a way of acknowledging that the experience of illness and/or impairment will be influenced by not only by the biology of the condition (the ‘disease’ or ‘impairment’) but also by the social and economic context, and by individual psychology.

As an approach, the BPS model can be, and has been, presented as ‘progressive’ and as a corrective to the over-medicalisation of people’s experiences of their bodies. Feminists and others have long challenged the authority of the medical profession as the sole source of knowledge and treatment.  Such challenges emphasise more holistic explanations of people’s experiences of their bodies and their mental health, arguing against biology as sole cause and medicine as sole treatment. The BPS model also purports to acknowledge the value of the social model of disability, developed by the disability movement from the 1970s onwards.

However, while there are theoretical and evidence-based arguments to be had about the relative influence of, and the interaction between, biological, psychological and social factors, the current problem with the BPS model is the way it has been applied in the context of governments’ attempts to reduce the amount of money spent on out of work sickness benefits.  

Jonathan Rutherford has described the influence of the insurance industry on the way the BPS model was applied when the Labour Government replaced Incapacity Benefit with Employment and Support Allowance ('New Labour, the Market State and the End of Welfare', Soundings, 2007, Issue 36). The government was concerned that ‘too many’ people were qualifying for and remaining on Incapacity Benefit, while the insurance industry was motivated to limit successful claims on Income Protection Insurance.  

In this context, as Gill Thorburn explains in her excellent analysis, the BPS has been applied with “a relentless emphasis on an individual’s ‘beliefs’and ‘attitudes’ towards their illness…. In this sense it could more aptly be termed the ‘Psycho’ model of illness”. 

It is clear, not just from the political debates and media coverage, but also from the testimony of those subjected to the WCA, that a number of assumptions are made when determining eligibility for ESA:
- that some people’s experiences are ‘subjective’ because their self-reported restrictions are supposedly not ‘explained’ by what is clinically measured
- that these accounts of restrictions are therefore not trustworthy
- and that someone acting on behalf of the state must make a judgement about the level of restrictions actually experienced.

So, an approach which attempts to acknowledge the whole of a person’s experience, rather than just that which can be measured by a medical professional, has been turned into a way of justifying what are essentially moral judgements about whether a person is ‘really sick or disabled’.   

Moreover, these moral judgements are being outsourced by the state to a private company, Atos [Update 2015: Atos walked away from the contract and it was then given to Maximus].  Since the purpose of introducing the WCA is to reduce the numbers eligible, Atos’ ability to renew this and gain other similar contracts (such as that for the forthcoming Personal Independence Payment) is likely to be linked to how many (or rather, how few) people are judged ‘fit to work’. After all, one of the key reasons for replacing the old Personal Capability Assessment was that it was resulting in ‘too many’ people qualifying for out of work sickness benefits.

The conflict over so-called ‘subjective’ experiences of illness and impairment is being played out in the appeals made by 40% of those deemed ineligible for ESA.  The cost of appeals in 2010/11 was £48.2million and 145 additional judges are being recruited to deal with the mounting backlog of cases.

The motivations, and assumptions, behind the WCA and its operation are not new, however.  Those administering the Poor Law in the seventeenth century were concerned to weed out ‘sturdy vagabonds’ from making claims on public resources, and distinctions have been made between the ‘deserving’ and ‘undeserving’ ever since. David Turner, in his paper ‘Fraudulent disability in historical perspective’ points out how:

The development of the news media during the eighteenth century led to increased stereotyping of the disabled, with attempts to sort ‘genuine’ from ‘faked’ conditions and differentiate between good and bad disabled types.  This led to calls for welfare relief to be based on firmer medical principles, together with proposals to return the sick and disabled to the workforce. 

Sounds familiar doesn’t it?

The history of collectively funded provision for those who cannot sell their labour because of impairment and/or illness, is marked by countless points at which the state, supported by popular media, decides that the current rules and procedures to determine eligibility are too slack, and instead introduces new systems which it is thought will better identify the ‘genuinely sick and disabled’ and thereby reduce the numbers qualifying for support.

Each new system is supposedly based on a more ‘objective’, ‘scientific’ way of determining eligibility.  All that has changed over the years is that the academic underpinnings of the WCA are assumed to be more valid than the methods used by the Poor Law Guardians to determine who was ‘really sick’.  But if the history of medicine shows anything it is that there is often a gap between what it can explain and measure at a particular moment in time, and what people’s actual experiences are. We shouldn’t forget that it isn’t so long ago that the symptoms of autistic spectrum disorders were diagnosed as children’s psychological reactions to dysfunctional parenting (‘fridge mothers’ as the popular term went).  And to take a more recent example highlighted by Gill Thorburn, medical technological developments are highlighting the limitations of conventional MRIs in the diagnosis of musculoskeletal problems, one of the key conditions held up as ‘medically unexplained’ when such scans fail to show any ‘objective’ evidence of a patient’s ‘subjective’ experience of pain,

Individuals and organisations are mounting convincing criticisms of the validity of the WCA and the assumptions underpinning it. What is also important, however, is to address the two underlying factors running through the whole history of out of work sickness benefits, namely:

-   political and economic factors which create a desire to limit or reduce public expenditure on supporting those who cannot support themselves through selling their labour
-   the unequal relationship between those who design and deliver the welfare system and those who are subjected to it.

If we want to defend and promote a welfare system which does not punish people for being unable to sell their labour, we have to develop an economic system which can sustain a level of taxation sufficient to fund support at a level which affords a decent standard of living for all.   

If we want to defend and promote a welfare system which treats people with respect, and which seeks to empower them as citizens, then we have to develop a welfare system which is co-produced by those who depend on it. 

This may sound utopian but, unless we address these fundamental political and economic issues we will only keep repeating the battles we fought yesterday and the future for disabled and ill people will be very bleak indeed. 

Note: On the day I published this Disabled People Against the Cuts also published this really interesting piece by Debbie Jolly about the social model and the BPS

Tuesday, 6 March 2012

Fulfilling potential or potential unfulfilled?

‘Fulfilling Potential'  is a discussion document, published by the government’s Office for Disability Issues.  They have asked for responses to it by 9th March.  The process is intended to inform the forthcoming Disability Strategy which, according to evidence given to the Joint Committee on Human Rights by Maria Miller (Minister for Disabled People), will build on the Independent Living Strategy and take the UN Convention on the Rights of People with Disabilities “as a starting point”. 

‘Fulfilling Potential’ is full of the kind of language used by the disability movement, promising a tackling of barriers and to promote choice and control.  Its approach is thus underpinned by the social model of disability and by disabled people’s definition of ‘independent’ as being, not about ‘doing things for yourself’ or self-sufficiency, but about having control over the support needed to go about one’s daily life. 

Yet the document sits alongside, and steadfastly ignores, a raft of welfare reform policies which, far from recognising the social, economic and environmental barriers experienced by disabled people, assume that unemployment, impairment and ill health are a result of individual states of mind – lack of motivation and ‘dependency’. These policies are based, not on the social model of disability, but instead on the biopsychosocial model – a tool developed by the insurance industry to manage claims made on income protection policies. 

Disabled people have a vision of a welfare state which, through a progressive taxation system, would make resources available to help create a level playing field for those who, without such additional resources, would not experience the same opportunities as non-disabled people.  The UN Convention  – and in particular Article 19 – is recognition that without such provision disabled people’s human rights are at risk.

In contrast, current welfare reform policies assume that to rely on publicly-funded benefits and services is a ‘bad’ thing, to be avoided and reserved for a residual group of the most ‘vulnerable’, the most ‘dependent’.  These policies assume that provision for disabled people has been too ‘generous’, creating unnecessary ‘dependency’, and therefore  stricter criteria need to be applied to qualifying for disability benefits together with sanctions in order to ‘motivate’ people into economic independence through work.

A glaring omission in the Fulfilling Potential document is any reference to a key policy development led by ODI - the Right to Control Co-produced with disabled people, the Right to Control is based on the social model of disability, and is ‘a new legal right’ which gives disabled people choice and control over the support they are entitled to from the state.  

The Welfare Reform Act of 2009 gave the government powers to set up ‘trailblazing’ areas (and to regulate for a subsequent national roll-out) where disabled people have the right to have control over resources from six different funding streams covering social care, housing support and adaptations, and employment support. The Right to Control had all party support and, until its strange omission from the Fulfilling Potential document, the assumption had been that this current government was committed to rolling it out nationally. Indeed, Maria Miller, in giving evidence to the Joint Committee on Human Rights last year, spoke warmly of the Right to Control trailblazers, praising the way they were ‘empowering’ disabled people and recognising the importance of co-production.

The Right to Control is underpinned by the principle that disabled people are experts in what barriers they face, and in how to address those barriers. It is delivered in partnership with disabled people’s organisations and has been co-produced and is being co-delivered with these organisations.

In contrast, current reforms to out of work benefits, and the delivery of the Work Programme, are based on a model which assumes that the main barrier to employment is individual motivation and attitude. These reforms are imposed on disabled people, who are not assumed to be experts in their needs and barriers or in how to address either. They are at best paternalistic and at worst punitive. They are a prime example of the state thinking that it knows best.

Two funding streams, aimed at helping disabled people into and to keep paid employment, are part of the Right to Control trailblazers.  Disabled people are thus being given control over resources they are entitled to under the Work Choice programme (the specialist employment programme) and Access to Work.  Such experiences must be in stark contrast to those disabled people receiving services from the Work programme where it is Job Centre Plus civil servants and service providers such as A4e who are considered to be the ‘experts’ as to how best to help people into work. Far from being in control over how to use resources, disabled people in these situations face losing their benefits if they don’t do what they are told to do (including unpaid work for unlimited periods).

Early evaluation of the seven trailblazer areas indicates the kind of changes that need to be made if employment support programmes are to have good outcomes – for example the Work Choice guidelines had to be changed so that, instead of only being able to go on courses which were felt to be inappropriate (such as writing a CV) or on ones which had been attended before, individuals could use their Work Choice funding to pay for a vocational course more suited to their needs.

‘Fulfilling Potential’ uses language and is (seemingly) underpinned by an approach which is completely at odds with the language and approach which currently dominates welfare reform.  ODI should have the courage to promote the Right to Control and to apply its approach to welfare-to-work policies.  Like the Right to Control, policies and services which aim to increase employment rates amongst disabled people should be co-produced and co-delivered by disabled people and their organisations.  Such policies and services should recognise that disabled people themselves are the experts in their needs and in the barriers they face, and in how resources should best be used to address such barriers.

Much of the innovation and progress in adult social care over the last 30 years has come from the pioneering and campaigning work of disabled people’s own organisations.  It is about time that those concerned with welfare benefits and with ‘welfare-to-work’ programmes learnt from this and started working in partnership with disabled people and their organisations to both co-produce and co-deliver more appropriate and less disempowering policies.

Thursday, 1 March 2012

Lords and MPs call for a legal right to independent living

For over 30 years, disabled people have been fighting for a right to independent living.  And today the Joint Committee on Human Rights (JCHR) calls for a right to independent living to be incorporated into the UK’s legislation.

The term ‘independent’ is usually taken to mean ‘doing things for yourself’, being self-sufficient.  Importantly, in the current political context it is often used to mean not being ‘dependent’ on the state. 

Disabled people don’t mean any of these things when we use the term ‘independent living’.  Instead it means having choice and control over where and with whom we live and over the support, adaptations or equipment needed to go about our daily lives.  Without such choice and control, disabled people’s human rights are at risk.  This was first identified by people like Paul Hunt, living in a Leonard Cheshire residential home in the 1970s, who insisted that it wasn’t his impairment that restricted his opportunities but the way that the Home dictated what he could and couldn’t do.[1]

Simon Brissenden, another pioneer of independent living, argued in 1989 that
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.[2]

And in the early 1990s, a group of activists involved in the British Council of Organisations of Disabled People, came together[3] to articulate the underlying philosophy of independent living:

·        that all human life is of value;
·        that anyone, whatever their impairment, is capable of exerting choices;
·        that people who are disabled by society’s reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives;
·        that disabled people have the right to participate fully in society.

One of the results of the international campaign for independent living – and the links made to human rights – was the United Nations Convention of the Rights of People with Disabilities, which came into force in 2008. 

Article 19 of the Convention concerns the right to independent living and the JCHR calls for this right to be incorporated into domestic legislation.

In the current context of attacks on the benefits and services that help to create a level playing field for disabled people, the JCHR find that there is a risk that the UK is going backwards as a result of the cumulative impact of these reforms. As a result of evidence presented to them, the JCHR have concluded that:

·        the tightening in eligibility criteria for adult social care
·        the replacement of Disability Living Allowance with Personal Independence Payment
·        the closure of the Independent Living Fund, and
·        the changes to housing benefit

all risk contravening Article 19 of the UN Convention.

The report also points out that the right to independent living applies as much to people living in residential or nursing homes as it does to those living in their own homes – a welcome recognition given the continuing evidence of a denial of basic human rights that is all too common in communal provision.

The Committee heard evidence that a right to advocacy, and to independent advice and information, is a cornerstone without which independent living may be unachievable for many.  They therefore called for implementation of Section 2 of the 1986 Disabled Persons Act, which concerns the right to advocacy but was never enacted.

Government Ministers, in their evidence to the Inquiry, used the language of the disability movement. They spoke of a support for choice and control, for equal rights and independent living. This report – thanks to the evidence that disabled people presented to the Committee - exposes the gap between their words and their deeds.  

[2] Simon Brisenden, ‘A Charter for Personal Care’ in Progress, 16, 1989. Disablement Income Group.
[3] This discussion was part of a research project I carried out in 1991-2 on independent living.  It was published as ‘Independent Lives? Community Care and Disabled People’, Macmillans, 1993.

Monday, 30 January 2012

The 'logic' of reducing benefits for disabled children.

Tomorrow (January 31st 2012) Crossbenchers in the House of Lords are to try one more time to amend the Welfare Reform Bill to prevent a reduction in the amount of money paid to disabled children.  Last time, the amendment was lost by only two votes.

At the moment, children in receipt of Disability Living Allowance, whose parents earn a low income or are out of work, receive a ‘disability addition’ worth £53.62 p.w.  Children in receipt of higher rate DLA receive an additional £21 p.w. on top of this.  Under the new Universal Credit system, the government proposes that children in receipt of the higher rate DLA will receive a total disability addition of £77 while children in receipt of medium and lower rates of DLA will only receive £26.75.   

About 100,000 disabled children will be affected by this reduction in the amount of money paid as a contribution towards the additional costs they and their families face associated with impairment and disability.

The government’s stated reason for reducing the amount of money available for disabled children within the Universal Credit system is that this is necessary to bring rates in line with what is available once children reach adulthood.  

Defending the policy in the House of Lords, David Freud argued that the more generous benefit rates available to disabled children meant that “the drop in income from childhood to adulthood can cause financial difficulties for young disabled adults”.  He therefore justified reducing the amount of money available to children because it would “smooth the transition from childhood to adulthood by removing that artificial divide”.  In other words, disabled children should get used to living in poverty in childhood as that is what awaits them as they move into adulthood.

This means that the progress that the Labour government made in tackling poverty amongst families with disabled children is to be sacrificed to the downward pressure on benefit rates for adults.

A key factor in this downward pressure on benefit rates, and determining the design of Universal Credit, relates to the Poor Law principle of ‘less eligibility’.  This refers to the perceived need to ensure that it is not possible for households or individuals to be better off out of work than in work.  The children who are on the lower or middle rate of DLA are assumed to pass, in adulthood, into the Work-Related Activity Group of Employment and Support Allowance, where a key determinant of benefit levels is that they should not be set so ‘high’ as to create a disincentive to work.

But in a low waged economy, with ever-increasing global pressures driving wages down even further, this principle is hard to maintain.  Ian Duncan Smith’s intention that the new Universal Credit system will ‘always make it pay to work’ is in conflict with two other aims: that our benefit system should provide enough of a safety net to prevent destitution; and that families with children, and/or with a family member who is disabled, incur additional costs which should be allowed for in the assumptions made about at what level this safety net should be set.

If our economy does not sustain jobs which pay a living wage, it is inevitable that the principle of ‘less eligibility’ will mean a benefit system which fails to provide households – particularly those which incur additional costs relating to disability – with enough of an income to prevent destitution.

Another of the government’s justifications for changes to the ‘disability addition’ for disabled children is that it is targeting help to those who are most ‘severely disabled’.  This is part and parcel of the residualisation of the welfare state – the process by which it is becoming something that only those in the greatest need can look to receive help from.  This is not a social security system on which we can all rely at times of misfortune and need, something in which therefore we all have stake.  Instead it is a benefit system which – like social housing has become – is only available to the most marginalised of social groups.

The focus on the ‘most severely disabled’ children is also part and parcel of the narrative which currently dominates public debate on adult disability benefits: namely that there are large numbers of people receiving such benefits who aren’t ‘really disabled’. Similarly, by reducing the amount of support available to disabled children on lower rates of DLA the government is implicitly saying that the families of these children do not incur sufficient additional costs to justify their current levels of benefits.

Yet these are families already at significant risk of poverty: 4 in 10 disabled children live in poverty – a total of 320,000.  Half of these live in households with a disabled adult and of these 50% live in poverty.   

These poverty rates will inevitably increase significantly, and are unavoidable as long as we have a residualised benefit system, governed by Poor Law principles in the context of an economy which cannot sustain full employment and a living wage.  

Wednesday, 11 January 2012

Defending the Independent Living Fund

In a discussion about my critique of disability policy, someone expressed surprise that I hadn’t written about the closure of the Independent Living Fund.  They were right that this is a serious omission from any analysis of the current attack on disabled people’s access to civil and human rights.  My only excuse is that every time I started to include the issue there was too much I wanted to say about the history and demise of the ILF.

The setting up of the Independent Living Fund in 1988 was an example of ‘progress by default’ in the heyday of the Thatcher government’s attack on the welfare state. This attack included abolishing something called the Domestic Needs Allowance.  This (unpublicised and therefore underclaimed) benefit was paid to a small group of disabled people who qualified for an addition to their Supplementary Benefit because they needed help with ‘ordinary domestic tasks’ like cooking and cleaning. Its abolition was part and parcel of the then Tory government doing what this Coalition government is doing – attempting to cut the benefits bill while claiming to be introducing new systems which would enable ‘better targeting’.  Then, as now, it was the House of Lords which mounted significant resistance resulting in a number of changes to the legislation, including the announcement by the government that they would set up a Fund to help ‘people who are severely disabled’, who were on low incomes, in receipt of attendance allowance, and who had to pay for their ‘domestic care’.   

The government thought that only about 250 people would qualify; Disability Alliance thought it would be several thousands.  By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million.

As with Disability Living Allowance, the government found it had introduced a method of supporting disabled people’s additional costs which was popular because it increased autonomy and quality of life.  But, as with DLA, instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying. In 1992, the original ILF was closed overnight and while a new Fund was set up, eligibility was tightened up and disabled people had to already be in receipt of local authority funded services.
Yet still its popularity grew, as did the principle at the heart of the ILF – giving people the money to enable them to purchase their own support. 

In 1993 I published research[i], comparing the experiences of people who were dependent on traditional services for the help they needed with those who received grants from the Independent Living Fund or cash payments from their local authority (at that point these direct payments were technically illegal until the 1996 Community Care (Direct Payments) Act was passed).  The contrast was striking in terms of people’s access to privacy and a family life, and to the opportunities they had for participating in society: ILF grants gave people control over the support they needed and meant their human and civil rights were protected and promoted.

These findings were echoed by all the research carried out during the 1990s and in more recent years – ILF grants have given people choice and control and have, as the most recent review found, been particularly good at reaching people with significant learning difficulties, who made up almost a third of those receiving grants in 2006

So why close it down?  The main incentive was of course the Department for Work and Pensions’ need to offer up savings to the Treasury in the context of cutting the deficit.  In looking for reasons DWP argued that "an independent discretionary trust delivering social care is financiallyunsustainable”.

The ILF was not a perfect system: amongst other things, it discriminated against older people (by imposing an upper age limit of 65 at the point of application) and against those with the highest support needs (by imposing a weekly limit on how much support can be funded). The independent review carried out in 2006 recommended – in the longer term – merging it into a new system of delivering social care based on the individual budgets which were being piloted at that time.

And the ILF is undoubtedly an anomaly.  In its initial phase it was entirely part of the national social security system but funded needs which were otherwise met by locally delivered social care systems. Since 1992, it has been more of a hybrid in that, while it is funded within the national social security system, the gateway to an ILF grant is through the locally delivered social care system.

When I was working with the Prime Minister’s Strategy Unit, on what became Improvingthe Life Chances of Disabled People,   the logic of our analysis of independent living and the policies needed to deliver it led us to discuss whether there should be a national delivery mechanism – akin to the Independent Living Fund.  We drew back from this, partly because of political pragmatism but also on the grounds that it would undermine local democracy. 

I’ve never been entirely happy with this latter reason. It is only a historical accident – not because of considered policy design – that disabled people’s additional costs are currently addressed by two entirely different systems: Disability Living Allowance, non-means-tested and delivered through a national social security system; and community care (whether as services or direct payments) means-tested and delivered through a local system subject to local and professional discretion.

The Dilnot Commission, in response to the years of evidence of a ‘postcode lottery’ in access to social care recommends a national system of assessment.  We already have one – it’s called the Independent Living Fund.

For years, there have been attempts to encourage local authorities to use direct payments (and now personal budgets) to enable disabled people to have choice and control over the support they need to go about their daily lives.  Yet there remains a postcode lottery of not only the level of support available but the extent to which an individual can have control over the resources available.

As Colin Barnes has written, “One way out of this mess would be to take the distribution of direct payments out of the hands of local authorities and centralise it. This could be achieved by setting up a new national body similar to the ILF and accountable to organisations controlled and run by disabled people such as the National Centre for Independent Living (NCIL)”. [ii]

In the next few months the government will be publishing a consultation on the Independent Living Fund, and its long awaited White Paper in response to both the Dilnot Commission and the Law Commission’s report on community care legislation. The debate so far has mainly been related to how we can fund adult social care but there is an equally important debate to be had about the principles of delivery.  I would suggest, as a starting point, these should include:

- nationally consistent entitlements: ‘postcode lotteries’ are unjust and create disincentives to move in pursuit of employment opportunities or because of family commitments;

- universality, i.e. no means-test: disabled people face additional costs and a modern welfare state should fund these costs, out of general taxation, to create a level playing field;

- choice and control: self-determination is a basic human right which disabled people cannot experience unless they have choice and control over the support needed to go about their daily lives.

The Association of Directors of Adult Social Services told the Joint Committee on Human Rights Inquiry intoIndependent Living that, in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.  This is the reality facing disabled people and which must be addressed by the government in its plans for the future of adult social care.

In the meantime, I would urge people to sign Disabled People Against the Cuts’ (DPAC) letter which urges the government to carry out a separate consultation on the ILF (rather than just including it in that on future funding of adult social care), and to continue the separate funding that the ILF provides. You can get a copy of the letter and sign up by visiting the DPAC website or emailing

[i] Morris, J. 1993. Independent Lives? Community Care and Disabled People, Macmillan.

[ii]  Barnes, C. 2007.’Direct payments and their future: an ethical concern?’ in Ethics and Social Welfare, 1(3), pp. 349-354.