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 9^th 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.

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.  

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[1] See Vic Finkelstein’s account of this struggle, http://www.leeds.ac.uk/disability-studies/archiveuk/finkelstein/Administrative%20Challenge%201.pdf.

[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.

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.  

“More generous uprating over the period 2003- 10 has seen the child payments increase at a faster pace than the adultpayments, leading to a lack of alignment in rates. The Government aims to align child and adult payments through these reforms”. 

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.  

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 mail@dpac.uk.net.

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[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.

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.