Disability policy 1990 and 2010 - an evidence-free zone.

If anyone doubts that evidence has little part to play in influencing government policy, they only have to compare the origins of Disability Living Allowance in 1990 with the circumstances of its demise in 2010, when the government published its proposals to replace DLA with Personal Independence Payment.

In 1990 we had a Conservative government who wanted to reform disability benefits.  Their White Paper, The Way Ahead, identified that there had been large increases in the numbers successfully claiming the two additional costs benefits – Attendance Allowance and Mobility Allowance – over the previous ten years: a sixfold increase in Mob A recipients between 1978/9 and 1989/90;  and threefold increase in AA recipients.

A national survey of disabled people had also identified that the additional costs that they incurred were only a fraction of the amount paid to those qualifying for these benefits. AA was £20.45 and £30.60 per week and Mob A £21.40, whereas a government survey found that average extra costs ranged from £3.20 for people in severity category 1 to £11.70 in severity category 10. Disability organisations had challenged these figures but the government response was that their challenge related to people with highest needs and took into account care needs which should be met by either local authority services or the Independent Living Fund.

So – did the government respond by cutting the amount of money spent on these benefits?  In the same way that the current government aims to cut today’s budget for additional costs disability benefits by 20%?

On the contrary, the Conservative government of 1990 proposed to replace Mobility Allowance and Attendance Allowance with a new benefit, Disability Living Allowance, which would be extended to larger numbers of people, increasing the amount of money spent.

Unlike the current government, the 1990 government recognised the demographic reasons for the increase in numbers claiming disability benefits: although “there is no reason to suppose an increase in the incidence of disability at all ages” there are, they said “more old people and they are living longer” and this “will have contributed to the rise”.  And, they said, there was greater awareness of the benefits so more people were claiming.

In contrast, the current government argued in 2010 that the 30% increase in the numbers receiving DLA since 2002 is ‘inexplicable’, concluding that “The complexity and subjectivity of the benefit has led to a wider application than originally intended”. Their focus was on those of working age, arguing that DLA can act as a disincentive to seeking work and the June 2010 Budget announced their intention of reducing the numbers of 18-64 year olds receiving additional help by 20%.

In fact, as Declan Gaffney has shown, only 8% of additional working age claims cannot be easily explained.  All the rest of the increase is explained by either demographic factors (primarily that recipients keep DLA after reaching retirement age) or by the rise in under 20 year olds receiving the benefit because of mental ill health or learning difficulties (probably because of increased awareness of the benefit).  Moreover, the number of new claims amongst 18-64 year olds has in fact been falling since 2002.  In addition, evidence that disability benefits do not cover disabled people's costs of living has not figured at all in the government's policy deliberations.

Whereas the current government argues that too many people are receiving help with the additional costs associated with impairment and disability, the 1990 Tory government felt that not enough people were being helped.  Their White Paper argued that the OPCS surveys showed that there were people under pension age with “moderate to severe disabilities and corresponding costs, but who fail to qualify for AA or Mob A.”   The new benefit, Disability Living Allowance, was therefore intended to encompass people who were ‘less severely disabled’ for whom “the government believes more help is needed”.

In contrast, the current government believes that help should only be available to “those that need the greatest help”.  The lower rate of the care component is therefore abolished and anyone who can walk more than 20 metres will be ineligible for the higher rate of the mobility component – with very significant consequences for people who can currently lease a Motability car using their DLA. 

How do we explain these differences in approach?

One important factor is the role played by the Treasury.  In 1990, the Chancellor was persuaded to agree to the new benefit by offering up savings in the form of abolishing the Additional Pension element of Invalidity Benefit and the Reduced Earning element of Industrial Injury benefits.  This was in spite of the fact that the calculations set out in The Way Ahead make clear that these savings did not, in the short-term, come anywhere near the additional expenditure that the new DLA would cost (although they were more significant in the longer-term).  The argument which won the day was the government’s case that disabled people of working age needed more support than they were currently getting.

In contrast, the proposals developed during 2010 to replace DLA with PIP, were motivated by the Treasury’s demand that each government department offer up substantial savings on current budgets. The arguments made about ‘inexplicable increases’ in DLA recipients, the case made for a more ‘objective’ assessment to determine eligibility were merely fig leaves for the prime motivation – to cut the budget by 20%. As Maria Miller, the then Minister confirmed to the House of Commons on 18th October 2010, “One factor being considered in developing options for the new assessment is the need for reform of disability living allowance to deliver savings of 20% of working age expenditure”.

In this context, it is likely that the recent change in the proposed criteria for eligibility for the mobility component of PIP – the reduction from 50m to 20m in terms of ability to walk – has come about because someone has calculated that this reduction in eligibility is necessary in order to make the savings required.

But the most important lesson from the comparison of government proposals in 1990 and 2010 is that in neither situation were their policy decisions based on evidence.  In 1990, the government ignored (albeit probably faulty) evidence that the additional costs of impairment/disability were less than the value of the benefits received. And in 2010, the government ignored evidence that the increase in DLA recipients was almost entirely explained by demographic and other reasons – and that there is no evidence that people have been awarded DLA who didn’t need it; on the contrary there is evidence that disability benefits do not cover people's costs of living.

In both instances, policy was driven by political intent – in 1990 the government wanted to show that it was extending more help to disabled people; in 2010 the government wanted to cut the amount of money spent on supporting disabled people.  As someone once said, everything else is just noise.

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.

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 11^th October http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/121011-0001.htm#12101112000573 . 

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:

put in place afunding panel that will authorise all high cost care packages to new and existing users. Packages costing more than £500 per week will be reassessed with a maximum upper limit of spending on care packages to meet each person’s individual needs. We will implement this over the next two years. The upper limits principle is already applied to services for older people.

          

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?

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

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.