We need to develop more radical challenges to disability policy

When I stopped working with the Office for Disability Issues (as a consultant on the Independent Living Strategy and the Right to Control), the Joseph Rowntree Foundation gave me the opportunity to reflect on what progress has been achieved in terms of disability policy over the last 20 years.  In the resulting short report,  I have had to conclude that there is little room for making progress within the ideological framework driving current disability policies, and that we need to develop more radical challenges to the disability policy agenda and engage in wider debates, particularly those which question the way our economy is currently configured.

In order for disabled people to experience equal access to full human and civil rights, and opportunities to improve their life chances, we need a system which:

- uses resources to create a level playing field for those whose impairment or ill health would otherwise lead to significant economic and social disadvantage

- delivers those resources in ways which, at the same time, enables autonomy for those who need support.

Disabled people and our allies have spent years looking for, and taking advantage, of ‘windows of opportunity’ within dominant policy agendas in order to make progress on our aim of full and equal citizenship.  The disability movement is arguably one of the most successful social movements in terms of the impact it has had on not only government policy but also on social attitudes.

But any advances we have made over the last 20 years or so are being set back by a combination of economic developments and a government determined to radically change the welfare state.

To put it briefly and too simplistically:

- 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 the ‘demographic timebomb’).

The disability movement faces, not only the struggle to make any progress in this wider context, but also the fact that both this and the last government adopted the language of our analysis and demands, and used it to pursue policies which are creating significant disadvantages for disabled people and their families.  So for example:

- the proposal to reform Disability Living Allowance, which aims to reduce the budget by 20%, uses the social model of disability to justify reducing eligibility;

- the reforms to incapacity benefit, which reduce eligibility, increase means-testing and impose conditions and sanctions, take the demand that ‘most disabled people both want to and can work’ and turn it against people whose experience of ill health make work – as currently configured – very difficult if not impossible;

- our demands for choice and control over the resources needed to go about our daily lives have been adopted in the context of social care policies which are more successful at delivering the privatisation of care services than in delivering independent living, and may well support the same trend in the context of health care;

- the language and demands of ‘user involvement’ have been incorporated into the ‘Big Society’ agenda which aims to reduce the role of the state and the infrastructure which is required for the empowerment of service users.

All of this has led me to conclude that it’s no good continuing to fight our battles within the context of the intellectual and political space which the disability movement has very effectively carved out over the last 20-30 years.  Instead we have to carry those concepts and ideas into the wider arena of not only social policy but also economic policy. 

Why we need to defend Disability Living Allowance

On Monday 14^th November, the House of Lords Committee on the Welfare Reform Bill will be considering amendments tabled on the reform of Disability Living Allowance (DLA).  This may explain the stories in the Daily Mail and Daily Telegraph on Friday (11^th November) claiming that 94% of recent DLA claimants only had to fill in a form to get the benefit.

Other figures in both articles – but not the headline one – seem to originate from DWP statistics. These statistics show that the DLA claim form was the only evidence submitted in 16% of cases, not 94%. By the end of the day, Full Fact had debunked the misuse of these statistics very comprehensively.

But this was just the latest in a whole series of attacks on the integrity of those claiming DLA: the reality of the experience was better represented in the thousands of tweets reacting to the articles. 

On Monday Labour and Independent peers will try and improve the Clauses in the Welfare Reform Bill by:

- ensuring that the benefit is available to pay for the extra costs that come with impairment, illness and disabling barriers

- placing the social model of disability at the heart of the assessment process

- requiring the new assessment criteria and process to be co-produced, piloted and reviewed with disabled people and their organisations

- reinstating a lower rate of benefit payment to assist people who need lower levels of support

- ensuring that people in residential care continue to receive the mobility component.

One of the most irritating things about the welfare reform debate is how government ministers are using the language of the disability movement to justify their reforms.  A classic example is the corruption of the social model of disability, and of our concept of independent living, in the proposals for replacing Disability Living Allowance with Personal Independence Payment. 

The social model of disability says that it is not our impairment which disables us but the barriers that society puts in the way; the independent living movement redefines ‘independent’ to mean, not doing things for yourself, but having choice and control over whatever support you need in order to go about your daily life.  For people with impairments (whether physical, sensory, communication, cognitive or relating to mental health) the human right of autonomy is denied unless disabling barriers are removed and disabled people have choice and control over the support they need.

In contrast, the government’s use of the words ‘independent’ and ‘independence’ is linked to the notion of not being ‘dependent’ on others or, most crucially, on the state.  The disability movement is clear that the ‘problem’ for us lies in the disabling barriers we experience, but for this government, the ‘problem’ lies with our reliance on the state for assistance to go about our daily lives.

For the disability movement, benefits such as DLA are about helping to create a level playing field.  For the government, receiving DLA is a sign of being ‘dependent’ and should be reserved for the most ‘vulnerable’.

In its desire to limit access to state support, the government has put a particular spin on statistics and research.  Left Foot Forward and others have debunked many of these stories. One further government narrative is that receiving DLA acts as a financial disincentive to getting paid employment.

There does in fact seem to be a statistical link between receiving DLA and unemployment: “even though DLA claimants tend to be older, poorly qualified, on benefits for longer and in poorer health thanother IB claimants, the fact of having a DLA claim, in itself reduces thelikelihood of someone saying they would like a job (now or in the future) bymore than a third”.

However, the same research, and other research also funded by DWP, makes clear that there are two likely reasons for this correlation - neither of them relating to DLA being a financial disincentive.   

Firstly, the same researchers, when they carried out interviews with disabled people and those advising them, found that misconceptions about DLA eligibility seem to be a key factor in the relationship between DLA receipt and unemployment:  “For many DLA claimants,both applicants and recipients, there was a perception that DLA was a benefit for those who are unable to work, was only payable when someone was not workingand stopped if they went back into work". 

Secondly, relationships with, and attitudes held by, health and other professionals also seemed to reinforce the perceived link between DLA eligibility and being unable to work. Being “told by a doctor that they were unlikely to return to work” was “a key trigger for making a DLA claim”.   

However, instead of the government recognising its own failure to properly communicate about DLA, it has used this research to justify reforming the benefit, with the aim of reducing the DLA budget by 20%.

DLA is a popular benefit amongst disabled people for very good reasons.  Firstly, it is not means-tested and as such is the only aspect of the benefit system which is implicitly based on creating a ‘level playing field’ for disabled people – in the same way that child benefit is intended to compensate for the additional costs of bringing up children.  Secondly, DLA enables people to make decisions for themselves as to how best to meet their additional needs and it is therefore empowering in that it promotes autonomy and self-determination. 

But an ideology which equates receiving resources from the state with ‘dependency’ can never recognise the benefits of using redistributed taxes to promote a level playing field for those who would otherwise experience significant disadvantages.

We need to challenge the misuse of statistics by the right wing press and government alike.  We also need our allies in Parliament to continue trying to mitigate the damage that will be caused if the Welfare Reform Bill goes through unamended.  But we also need to champion a vision of a welfare state that celebrates the virtue of using resources raised through a progressive taxation system to help create a level playing field for people who have additional support needs.

"Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens."

(The above quote comes from Sue Marsh's blog, Diary of a Benefit Scrounger) 

On the second day of the House of Lords Committee stage of the Welfare Reform Bill last week, Baroness Jane Campbell asked the government to reflect on what happens when an assessment process is developed with no involvement of disabled people and their organisations.  

She talked of a woman who has end-stage multiple sclerosis and who can now only move one eyelid and murmur inaudible words. Atos, the company carrying out Work Capability Assessments, telephoned her to say she needed to attend their offices to be assessed. When her husband explained that this was not possible, they said that they must speak to her on the telephone and read out a statement.

Jane Campbell continued:

“When her husband explained that she could not speak, they asked him to hold the telephone so that they could read it out to her, so he put the speaker phone on. They said: ‘This assessment is necessary and mandatory. If it does not go ahead, there will be consequences’. The woman, of course, found this very distressing and scary. They continued, refusing to take into consideration that the woman was not able to be interviewed. They were working from a script in which there is no flexibility and no requirement on assessors to apply themselves to real life situations or to take a different approach to different disabilities or health conditions”.

As Baroness Campbell says, the welfare benefit reforms have not been “intelligently and systematically co-produced in any substantive way with disabled people and disabled experts”.  As she also pointed out, disabled people and their organisations have a lot of experience of working with central and local government to co-produce policy – for example this is currently happening through the Right to Control programme,  an initiative intended to provide disabled people with choice and control over the resources they are entitled to.

Indeed, for some years, the government has been investing in disabled people’s organisations to bolster their sustainability and enable them to play a full role in helping to develop and implement policies which affect disabled people’s lives.  

In 2005, the government strategy, Improving the Life Chances ofDisabled People, set out a commitment that – by 2010 – every local authority area should have a disabled people’s user-led organisation. The Department of Health then launched a programme to help bring this about and this is now being built upon by the Strengthening Disabled People’sUser-led Organisations Programme.

The legal framework for involving disabled people in the development and delivery of services is provided by the Public Sector Equality Duty in the Equality Act 2010.  That Act means that public authorities must have ‘due regard’ to:

- the need to eliminate discrimination, harassment and victimization of disabled people;

- advance equality of opportunity;and

- foster good relations towards disabled people.

The Office for Disability Issues, whose role it is to champion disability equality across government, is clear that involvement of disabled people and their organisations is key to fulfilling this duty.

How, therefore, have we ended up with an assessment process which, in its design and delivery, seems to fail on all three aspects of the duty?

When Peter Beresford, from Shaping Our Lives, a user-controlled organisation, gave evidence to the Joint Committee on Human Rights Inquiry into Independent Living, he voiced concern at the assumption that disabled people will only get paid work if a ‘stick’ is applied.  On the contrary he said, many disabled people would wish to see employment as a right.  Policies should be focused on barriers to employment rather than assuming that “people identified as disabled will only work if it is presented as an obligation they have to avail themselves of”. 

If the assessment of ‘work capability’ had been developed with disabled people and their organisations (such as Shaping Our Lives, the UK DisabledPeople’s Council, People First, and many many other national and local user-led organisations), the assessment tools and process would have been based on the reality of the experience of being ill or disabled and on what really gets in the way of being able to work.  The failure to involve disabled people means the policy will inevitably fail in its aim of increasing employment. It is not only that too many assessments get it wrong, resulting in high levels of appeals, but that when people are identified as needing support in order to get a job, the action which follows has very poor outcomes. Amongst those who were in work prior to claiming Employment and Support Allowance, only one in four had found a job 12-18 months later; for those who were not in work it was less than 1 in 10.

On the one hand, government has recognised that better policy outcomes are achieved by involving disabled people and their organisations – something which is also backed by legislation.  On the other hand, significant policy shifts are happening with no involvement of disabled people at all.  Ian Duncan Smith and his civil servants should pay more attention to the investment which has already been made in disabled people’s user-led organisations, and work with them to co-produce policies which have a better chance of delivering good outcomes.  

Conditions, responsibility and welfare reform: a democratic deficit

The over-arching objective of conditionality is to influence the behaviour of as many working age benefit recipients as possible in order to move them into work, avoid long-term benefit receipt and protect the taxpayer. ('Realising Potential: A vision for personalised conditionality and support", DWP report published 2008)

What is the point of sanctions when failure to comply may always be due to the condition?....These…..have been designed by fit people and show no understanding of what it is like to try to find and keep work with a long-term disability. (Carer Watch's Blog: Letter to Professor Harrington)

Most western governments have increased the conditions and sanctions applied to the receipt of out of work benefits in recent years, with the aim of bringing down the number of claimants.  In Britain, conditionality has been extended to more and more groups of people, with the latest being those who qualify for Employment and Support Allowance because of illness or impairment and who are placed in the Work Related Activity Group.

There are four stories that are being spun in support of conditionality, by all political parties.  They are:

1.  That a large number of those who claimed Incapacity Benefit are ‘the hidden unemployed’ – mostly men who lost their jobs in the deindustrialisation of the 1980s and 1990s. 

While Conservative governments’ policies did undoubtedly help create this phenomenon in the past, this group has been reducing steadily in number and proportion of those claiming IB (mainly as they reach retirement age), as Declan Gaffney has illustrated. 

Over half of those now in receipt of IB/ESA also receive Disability Living Allowance and, although DLA is not an out of work benefit, most recipients experience significant levels of impairment, with nine out of ten having two or more impairments, over half four or more.

2.  That work is good for people’s health and well-being and therefore it is in their long-term interests to be pressurised into taking up employment of any kind.

Politicians of all parties have made much of the findings of a review of research carried out by Gordon Waddell and Kim Burton, published by the Department of Work and Pensions in 2006, which concluded:  “There is a strong evidence base showing that work is generally good for physical and mental well-being” and that, conversely, “Worklessness is associated with poorer physical and mental health and well-being”. 

However, the politicians who have relied on this research review fail to also quote the qualification highlighted by the authors that “account must be taken of the nature and quality of work and its social context; jobs should be safe and accommodating”.  Waddell and Burton emphasise three caveats: that, while on average work is good for health and well-being, a minority may experience poor health as a result of work; beneficial health effects depend on the nature and quality of work; the social context must also be taken into account.

There is no room in the ‘work is good for you’ story, spun by the current welfare reform agenda, of the evidence of the increasing number of jobs characterized by ‘high effort,low discretion’, characteristics which have been shown to lead to high stress and health problems. 

There is no recognition of the impact on health of the increasing number of insecure, temporary, low waged jobs – the rise of what Guy Standing has called the‘precariat’. Waddell and Burton’s finding that “Job insecurity has an adverse effect on health” has been steadfastly ignored. 

3. That it is people’s attitudes and motivation which are the key barrier to moving off benefits and into employment. 

This assumption is held so strongly that it permeates not just political pronouncements but sometimes researchers’ interpretation of their results.  DWP commissioned research by the Institute for Employment Studies, published last month, on people claiming Employment and Support Allowance. The report highlights a finding that “Among claimants who were in work before their claim, the belief that work improves health was associated with a higher likelihood of work resumption”.  Amongst those who were not in work immediately prior to their claim there is no such association (and, incidentally, the overall return to work within 12 -18 months is very low: amongst those who were in work prior to their claim 26% got a job, for those who were not in work it was only 9%). 

The assumption is made – from the way the findings are presented - that it is the attitude itself which increases likelihood of return to work. Thus one of the conclusions drawn by the authors is that “as the belief that work improves health was found to be important, encouraging people in this belief may positively influence work entry rates”.   

This excludes the possibility that people’s belief about whether work improved their health was based on their previous experience of whether work did improve their health or whether it was in fact detrimental – rather the belief is assumed to be entirely ideologically constructed.  This helps to legitimise the assumption that the state (in the form of the people doing the Work Capability Assessment, setting the conditions and applying the sanctions) knows what is best for the particular individual – change your beliefs about your state of health and of course you’ll be able to get a job.

Suppose an individual with ME, or someone with bi-polar disorder, knows, from past experience, that doing certain things leads to a deterioration in their physical or mental health.  The system of assessment and sanctions privileges the judgement of the assessor and personal advisor over that of the individual concerned. Yet I am not aware of any research on the validity of such judgements versus those of the individuals being assessed or sanctioned.

Which leads us to the final part of the story:

4.  That the welfare benefit reforms are about encouraging individual responsibility and reducing dependency.

Politicians from all parties are fond of talking about the way that applying conditions to the receipt of out of work benefits will encourage individuals to take responsibility for their own destiny.

In fact the application of conditions and sanctions increases the power of the state. Far from promoting individual responsibility, conditionality creates paternalism and a loss of autonomy/self-determination. In doing so, it “allows an encroachment of discretionary power by the state” and the welfare benefits system is characterised by a democratic deficit in that “the groups subject to the policy have little or no say in the design or about how it is run, or how they are treated” (1).

Over the last thirty years or so, we’ve seen an increase in some groups of people demanding, and politicians recognising, the need for them to be involved in the key policy and service delivery decisions which affect their lives – the disabled people’s and survivors’ movements, tenants’ and residents’ organisations, and so on.  Similarly, in the 60s and 70s there were embryonic demands that unemployed people should have a say in how Labour Exchanges (as Job Centres were called) were run and how benefits should be delivered.  Where is the voice of those on out of work benefits in the development of government and opposition policies over the last 10 years, which so affect their lives? Where is the research, involving and informed by the experiences of its participants, that would truly examine the complex barriers to employment?

Far from encouraging individual responsibility, current policies create a situation where people in receipt of out of work benefits are considered to have no right of influence or autonomy.  Instead the state decrees that access to self-determination is only to be achieved by being in paid employment – and thus this key aspect of full citizenship is placed out of reach for those who are unlucky enough to be too ill to work; discriminated against by employers because of impairment; and/or live in an area where there are too many people chasing too few jobs.

(1) Standing, G. 2011. Behavioural conditionality: why the nudges must be stopped - an opinion piece. Journal of Poverty and Social Justice, 19 (1), pp. 27-38.

Downton Abbey, insurance companies and welfare benefit reform

Did anyone take note of the story which ran throughout all the ad breaks in the first episode of the new Downtown Abbey series last Sunday?  It was a heart-warming tale from Aviva of the value of taking out insurance if you have an accident and can’t return to work.

And last Friday the Guardian ran a story about how “the Conservative party has had a long-standing financial relationship with insurance companies”. Their investigations revealed that “financial firms with insurance interests have given the Tories £5.4m in the last decade, £4.9m of that since David Cameron became leader in December 2005”. 

In the meantime, the Welfare Reform Bill has entered the House of Lords.  This Bill is part of the steady shift away from the principle, introduced by the Beveridge reforms, that cash payments in the event of unemployment or disability “will continue so long as the need lasts, without means test, and will be paid from a Social Insurance Fund built up by contributions from the insured persons, from their employers,if any, and from the State”.  The means-tested part of the post-war welfare state (called national assistance then, income support now) was intended to ‘wither away’ through a combination of contributory benefits and the state taking responsibility for maintaining full employment. Instead, contributory benefits have been steadily eroded, in terms of both the time-limits imposed and the conditions applied.  And the state now leaves the ‘market’ to determine levels of employment.

As with the NHS reforms, such developments open up opportunities for private providers.  The steady dismantling of the social insurance system will undoubtedly encourage more people to respond to insurance companies’ messages that we need to turn to them to look after us in times of need, rather than the welfare state.

The dominant narrative behind the reforms to out-of-work disability benefits – the replacement of Incapacity Benefit with Employment and Support Allowance – is that more and more people have been claiming it who have ‘trivial’ conditions and who are not really ‘disabled’.

There are two problems with this storyline.

The first is that, as Richard Berthoud’s analysis shows, “most of the growth in the prevalence of limiting long-standing illness … has affected people at the more severe, rather than the less severe, end of the spectrum ... This suggests that the underlying trend is a true one, not simply associated with people’s reports of, or responses to, trivial conditions”.

The second is that popular and political debate is often confused about what is meant by ‘disability’.  Disabled people have quite rightly asserted that to be ‘disabled’ does not necessarily mean being ‘sick’ and that they should be given the chance to work like anyone else.  This assertion goes together with a public image of a ‘disabled person’ as someone who uses a wheelchair or who is blind or perhaps deaf, or someone with a mild-moderate learning difficulty, the implicit assumption being that they do not experience any ill health associated with their impairment.

However, this description does not fit many people who are in receipt of out-of-work 'disability' benefits for which they qualified because of ill health. The problem is that this feeds into negative attitudes towards them, as they do not conform to the stereotype of a 'disabled person'.

Negative attitudes are also created because the state has applied a particular approach to disability and illness in the context of out-of-work benefits.

Underlying the application of the new Work Capability Assessment, and the increase in sanctions and conditions, is the assumption that it is individual motivations and attitudes which are the main obstacle to employment for many people on long-term out of work benefits.  In this scenario, it is the individual and their behaviour which needs to be ‘fixed’ rather than local job markets, employer discrimination, or inadequate healthcare services.  It is the individual who is to be blamed for being out of work because of long-term illness or impairment.

This is to ignore the factors, which are nothing to do with individuals, that have resulted in high numbers of people claiming long-term out of work benefits during the last 30–40 years or so. This is not because of an increase in the number of ‘malingerers’ but because the UK economy is integrally linked to the global economy. The availability of low-waged labour within emerging economies, together with the dramatic increase in the global supply of educated workers, affects the employment opportunities, pay levels and working conditions of most people in this country. However, globalisation particularly affects those who employers would not choose to employ unless there is a shortage of labour supply - people with long-term conditions who are out of work are disproportionately concentrated in parts of the country which have experienced deindustrialisation and have yet to recover .

It is shortage of labour which increases employment opportunities amongst those who require adjustments and flexibility from employers if they are to work – as happened in the period of full employment after the Second World War.  Where there is no shortage of labour, people with long-term conditions or impairments will always be at a disadvantage because of employer behaviour, not because of their own motivations and attitudes.

What we need therefore is a welfare benefit system which does not see us and our behaviour as the problem but where out-of-work benefits and employment support are seen as ‘reasonable adjustments’, on the one hand compensating for loss of income while at the same time tackling disabling barriers to employment. 

[Welfare reform is one issue explored in my critique of disability policy, to be published by the Joseph Rowntree Foundation in November.]

Disabled People's Organisations and the 'Big Society'

Why does all the rhetoric about the ‘Big Society’ irritate so many of us?  For disability activists in particular the language and attitudes grate.

I suppose some of us feel that it’s a pity that those pushing this agenda seem to be unaware of, or uninterested in, the history of disabled people pioneering new ways of supporting people; setting up our own organisations to do this; and after many years persuading government that giving people more choice and control is a good idea.

I’m referring to the independent living movement, and to the idea that it’s disabled people themselves who know how best to meet their support needs.  And to the recognition that a lack of choice and control undermines human and civil rights.

Over 30 years ago, people like Paul Hunt and John Evans in Hampshire, and Maggie Hines and Ken Davis in Derbyshire, resisted the way the residential homes in which they lived denied them control over the most basic things in their lives. They challenged the idea that physical inability means being ‘dependent’ and in need of ‘care’.  ‘Independence’ they said, is not about ‘doing things for yourself’; instead it’s about having choice and control over the support you need to go about your daily life. 

Over the next twenty years, disabled people set up local and national organisations, campaigning for direct payments and for civil rights – resulting in the Disability Discrimination Act in 1995 and the Direct Payments Act in 1996. They also developed services to help people use direct payments, with peer support and lived experiences at the heart of everything they did. Recent research confirms the value of peer support, in comparison with traditional professional-led care management. User-led services mean that people are not passive recipients but participants in organising their support, leading to greater well-being and less social exclusion.

The current policy agenda is supposedly about giving people and communities more control to do things for themselves.  As Disability Lib says, disabled people and our organisations have a strong history of doing this.  But these are small organisations, struggling to compete with the economies of scale offered by large voluntary and private sector bodies. Many have lost local authority contracts in the last few years.  With less capacity to work on tendering, they are also hampered by the extra time needed to involve service users with different access needs.  The voluntary sector expects total cuts of over £3bn  over the next five years, but smaller organisations look set to suffer the most, particularly with the shift from grants to competitive tendering.

It is difficult not to be cynical and to believe that the ‘Big Society’ agenda is more about shrinking the size of the state than using public resources in more empowering ways.  It’s more about opportunities for private sector organisations than creating opportunities for organisations run by, and accountable to, their service users.  

Many people with physical and/or sensory impairments, with learning difficulties or mental health support needs, or who experience the frailty that comes with old age, need support to go about their daily lives.  Our human and civil rights are threatened if we don’t have choice and control over that support. 

We need a welfare state that recognises this, that invests in services and organisations that empower.  We don’t need empty rhetoric disguising a withdrawal of resources from organisations that have demonstrated how best to deliver human and civil rights.

[User-led organizations and the ‘Big Society’ are one issue explored in my critique of 20 years of disability policy, to be published by the Joseph Rowntree Foundation in November.]