Thursday, 7 July 2016

Something to celebrate: a story of campaigning and co-production in one London borough

For many years, disability campaigners have pointed out that the system of charging for daily living support (community care, or home care, charging) is effectively a tax on disability.  Apart from the general injustice, it particularly discriminates against those with the highest needs, as they will be more likely to be limited to an income just above poverty levels; it discriminates against people reliant on a pension income because this is taken into account for the purposes of charging whereas an income from wages is not; and it prevents people from building up savings which might be needed to pay for expensive equipment or adaptations

It is perhaps inevitable that charging for adult social care has become common practice, given increasing demand and insufficient funding from either general taxation or local council taxes, together with diminishing political support for a universalist approach to ‘welfare’. But one London borough has bucked the trend and in 2014 abolished this ‘tax on disability’.  

How did this come about?

It was the result of strong campaigning by a small group of local disabled people; the willingness of local politicians to learn about the impact of policies on people’s lives; and the election of people who not only made promises but then delivered on them. 

Hammersmith and Fulham Campaign Against the Cuts was formed in 2006, in response to a newly elected Conservative-led Council which - according to David Cameron - was a ‘model’ for the policies he would pursue in government. Though only a small group of disabled people, they made a big impact, launching a legal challenge to the imposition of community care charges which although unsuccessful delayed its introduction. 

By the local Council elections of 2014, HAFCAC had learnt how to get the voices of disabled people heard in context of local electioneering.  They asked all the Parties about their policies on disability issues, collated the responses and publicised them.  Voters very rarely get pre-election material about disabled people’s concerns so HAFCAC distributed leaflets outlining issues for disabled people.  They hired a minibus and took to the streets to talk to people about voting, setting up a market stall - “All this created a real buzz” says, Kevin Caulfield, Chair of HAFCAC “with some people saying things like ‘I wasn’t going to vote but you made me realise it’s not just about me’”. 

Steve Cowan had been Leader of the Labour opposition on Hammersmith and Fulham Council since 2006.  Like many Labour Party politicians and activists, he had, he says, understood “disability to be an issue of discrimination and rights” but recognition of the impact of social care policies on disabled people’s daily lives only came about through his contact with people who were living the impact of such policies.  

One of these was Debbie Domb, a member of HAFCAC, who Steve said “took it upon herself to educate me. She would have me round her flat - at this point I was Leader of the Opposition - and as far as she was concerned I was going to need to know a lot more stuff than I did.  And so she would talk to me about what was needed.”  Debbie and others talked to Steve about not only the unfair ‘tax on disability’ that charging represents but also the importance of the money from the Independent Living Fund which enabled people with high support needs to go about their daily lives.  The ILF was abolished in July 2015 and responsibility handed over the local authorities.  Many people fear their funding will be reduced and control over their lives will be diminished.

The Labour Party manifesto for the local elections in Hammersmith and Fulham in 2014 included the promises that, if elected, Labour would abolish home care charging.  

Labour won control of the Council, taking 11 seats from the Conservatives (giving them 28 seats to the Conservatives’ 20).  The new Council quickly announced that they would maintain the levels of support provided to people who were transferring from the Independent Living Fund. And, on December 3rd 2014 (the International Day of Disabled People) Steve Cowan announced the abolition of community care charging from April 2015.  As he says, this was an illustration of a different approach to the tightening of resources facing all local councils:

In opposition I watched as Hammersmith and Fulham Council took the easy option of cutting services or introducing new charges for people, often in desperate need of those services, while elsewhere they were wasting millions of pounds of public money. [Instead] we were able to pay for the abolition of home care charges by shutting down council magazines, removing lamp post vanity banners and shutting down other propaganda. 

The shift in priorities was encapsulated by Kevin Caulfield who welcomed the abolition of charging. saying:

We have campaigned hard for eight years against this unfair tax on disabled people just for having our needs met. Every other non-disabled HF resident would view it as an absolute violation of their human rights if they had to pay an invoice from the council before they could use the toilet, get washed and engage in day to day activities. We are over the moon to have a Council that now understands that. 

Hammersmith and Fulham Council is taking an approach to developing policy which opens them up to the impact of their decisions on people’s lives.  The pressing need to do things differently was illustrated immediately following the 2014 election when Councillors were faced with angry parents of disabled children, who had been let down by the recently commissioned school transport service. 

Steve Cowan told me

This had been privatised by the Conservatives and commissioned as a new service with Westminster and Kensington and Chelsea Councils.  It had gone live in April 2014 and we won control of the Council on 22 May 2014.  We were very quickly contacted by parents giving us examples of how that service is causing serious harm to their children – all of whom were disabled.

The response from senior officials was very disappointing..… In one early meeting on 11 June 2014, where officials had been unsuccessfully arguing these were no more than teething problems – one official lost his temper and claimed that this particular group of children had “had been treated like royalty for too long”. They were not on top of the issue which became extremely evident when we had a public hearing on the matter on 8 July 2014.

This is what happens when people making decisions about services have little or no contact with the people actually using the service.  This is why disabled people have argued for many years that policy should be co-produced with the people whose lives it affects. 

Unfortunately, many politicians and professionals use the word ‘co-production’ with little understanding - or real commitment - to actually co-producing policy and services with those whose lives are affected by policies and services.  

This widespread lack of understanding about what co-production actually is, is further promulgated by, for example Care Act guidance which says that it is “when an individual influences the support and services received, or when groups of people get together to influence the way that services are designed, commissioned and delivered”.
This is not co-production - it belongs more to the era of so-called ‘user involvement’, which is usually little more than consultation after a policy or service has been developed. Instead, as the Office for Disability Issues said in 2009: 
Co-production means working together to develop a policy or a service. We use the word to refer to two situations:  a group of people working in partnership with government and other public bodies to develop, implement and evaluate/review a policy which affects their lives;  groups of people, or individuals, working with service providers to design, deliver and evaluate/review the services they use.(1)

In other words, co-production means working together in partnership to jointly produce something - not asking people their opinions of something which has already been decided upon. 

Hammersmith and Fulham Council are now setting up a ‘Disabled People’s Commission’, with the aim of:

working in partnership with Disabled residents to create new and innovative ways of engaging with Disabled people by co-producing  policy design and decision-making, as well as service commissioning and delivery.

If they do manage to achieve this it will provide a model for how policy-making and service delivery could be done differently by local Councils, and inspiration to other local disability organisations who are often struggling to make an impact on local services at a time of major cuts in services. 
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(1) This definition was used in advice to those seeking to the deliver the Right To Control, an initiative of the last Labour government, which was discontinued by the Coalition government after it took office in 2010.

Thursday, 28 April 2016

"A Fit Person to be Removed?"

I’m writing this in the context of last week’s #7daysofaction, just the latest stage in the campaign by families of people who have been detained in Assessment and Treatment Units.  It follows the Panorma Programme about criminal abuse by staff at a private hospital, Winterbourne View; the #justiceforlb campaign after the death of Connor Sparrowhawk as a result of negligence by an NHS Trust; the revelation of appallingly low level of investigations of unexpected deaths amongst people with mental health difficulties and people with learning disabilities at the same NHS Trust; the continuing failure to provide enough community and family support to enable people with learning disabilities and/or autism to live at home - and so on, and so on.
This blogpost is my attempt, amongst that of many other people, to understand - and draw attention to - how we have got to a situation where people can be treated so appallingly, can lose their lives, and yet very rarely is anyone held accountable….and the same things keep happening. 
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Twenty five years ago, a small book was published called ‘A Fit Person to Be Removed: Personal Accounts of Life in a Mental Deficiency Institution’.  Maggie Potts and Rebecca Fido interviewed 17 people, who had been ‘certified’ under the 1913 Mental Deficiency Act as ‘feeble minded’, ‘idiots’, ‘imbeciles’ or ‘morally defective’. They had spent most of their lives in an institution the authors called ‘The Park’ until leaving as a result of changes in policy during the 1970s and 1980s. A foreword to the book expressed the hope that enabling these experiences to be told “may prevent society from repeating the mistakes of previous care systems”. 
Institutions like ‘The Park’ had steadily increased in number from about 400 in the mid-nineteenth century to almost 2000 by 1914.  Their growth was fuelled by a set of values associated with the increase in industrialisation - values which arose from worries about people who were “unproductive” and concerns that society “should be protected from the evils of mental deficiency”. Those who took a more benevolent approach justified the deprivation of liberty by stressing that “such people” required “care and protection” (these quotes are all from ‘A fit person to be removed’).
However, from the Second World War onwards there were increasing challenges to this kind of value system. Awareness of what a denial of common humanity had led to in Nazi Germany created the climate for the UN Convention on Human Rights. Gradually, this recognition of fundamental rights which should be accorded to all human beings helped to influence the way disabled people, including people with learning disabilities/difficulties were responded to. Gradually, the right to life, to freedom of expression, to make choices, to receive education, the right to a family life were recognised for people who were previously considered as having no place in, and being of no value to, our society.
By the early years of this century, we had government policies which - on paper at least - promised to provide “new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities”.  Most importantly we had some organisations, often started by families, which pioneered ways of enabling people with learning disabilities to live ‘ordinary lives’.
And finally, 10 years ago, we had the UN Convention on the Rights of People with Disabilities which not only upholds disabled people's basic human rights but also includes Article 19, Living Independently and Being Included in the Community:
States Parties to the present Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
Over the last 20 or 30 years, therefore, we have made some progress in recognising the human rights of people with learning difficulties/disabilities - not enough progress but some people certainly have had access to an ‘ordinary life’. So why does it feel as if we’re going backwards?
One factor, amongst others, is undoubtedly what has happened to public services in the era of what philosopher Michael Sandel has described as “the age of market triumphalism”. 
Whereas after the second World War there was increasing understanding of the moral meaning of certain public goods, in the last few decades this has been more and more curtailed by attempts to use ‘market forces’ to deliver the things that previously had been recognised as being of value not only to individuals but also to the wider community.   Now, it is contended, good choices are made and good services delivered through self-interest and financial incentives; and there is little or no moral meaning - for either the individual or the community - placed on what is being delivered.  
In the case of social care, the 1990 NHS and Community Care Act ushered in the ‘purchaser/provider split’ and outsourcing of social care services. Now after more than 20 years of privatisation, it is the investment and management decisions of profit-making organisations which predominantly determine the nature and the quality of many care services, rather than moral or political decisions about what kind of lives we want for ourselves and our communities.  Care has become commodified and, if a profit cannot be made, organisations cease to trade in it.  This has led to the current crisis in the provision of domiciliary and residential care because of the significant reductions in local authority social care budgets - our collective failure to value social care enough to provide sufficient resources.
In the case of healthcare, the Health and Social Care Act of 2012 replaced the NHS ‘internal market’ established by previous Labour and Conservative governments with a new level of marketisation via the role of Clinical Commissioning Groups. So far this was failed to yield the same outsourcing opportunities of the social care reforms of the 1990s - as was vividly illustrated by a Radio 4 ‘File on 4’ programme recently. Neither not-for-profit or for-profit organisations have found it easy to deliver the required outcomes within the restricted budgets made available and the ‘marketisation’ of NHS services is increasingly being questioned. As Chris Ham, from the King’s Fund, told Radio 4: 
There’s no good empirical evidence that having competition within the NHS drives down costs. In fact, there’s some pretty good evidence it can increase costs, all the transaction costs associated with tendering, writing contracts, monitoring contracts.
However, there is one area of NHS funded services which seems to be providing lucrative, and growing, opportunities for the private sector: in-patient mental health and specialist learning disability services.
As Chris Hatton points out, there has been a shift in the last 10 years of NHS inpatient provision for people with learning disabilities to what is euphemistically called the ‘independent sector’:  
….the number of people with learning disabilities in NHS inpatient services dropped, from 3,669 people in 2006 to 1,650 people in 2015. In contrast, the number of people with learning disabilities in independent sector NHS services increased, from 940 people in 2006 to 1,350 people in 2015. In 2006, 20% of people were in independent sector services; in 2015 this had increased to 45%.
Companies running mental health and learning disability in-patient provision have benefited from both the 2012 health reforms and also reductions in NHS services.  As the Financial Times reported on 7th February this year “The UK [private mental health] industry is expected to benefit from cuts in state-funded services”.  They went on to say: 
Mental healthcare has been one of the biggest casualties of the government’s cost-cutting programme — but this has in turn has benefited the private sector.  Since 2010, the number of in-house beds provided by the NHS for people with mental health issues or learning disabilities has fallen by 23 per cent. But the number of beds provided by the private sector has grown by 8 per cent, according to LaingBuisson, the healthcare consultancy. The sector remains dependent on NHS fees, which account for 87 per cent of revenues, with the rest paid for by patients or private medical insurance.

However, the ‘marketisation’ of healthcare has not just created investment opportunities for private companies, it has also had an impact on services which remain in the public sector. The weakening of accountability which is associated with the increased role of private organisations in in-patient provision for people with learning disabilities and mental health needs is mirrored by a lessening of accountability within NHS provision. Many people warned that the structural changes ushered in by the Health and Social Care Act 2012 would lead to a loss of accountability.  Private sector organisations may be driven by the need to make profit and to be accountable to shareholders rather than to the public or to those they serve but, at the same time, there is no democratic accountability of Clinical Commissioning Groups and, as the Kings Fund warned, the accountability of NHS trusts depends on (what has turned out to be inadequate) regulation and ‘internal governance’ (which has blatantly failed in the case of organisations such as Southern Health). 
Moreover, the context in which CCGs are operating means that, instead of long-term planning for and investing in services to meet local and national needs, resources are allocated on the basis of trying to match expressed need with what is available in the ‘marketplace’ of NHS and private providers. This means that commissioners are more and more restricted to responding to immediate demand with inadequate resources and a restricted choice of suppliers, rather than planning for and investing in services so that when the need arises there are good quality, sufficient and appropriate services to meet it. It is this which accounts for people being placed many miles away from their home and/or often in a service which is not suited to their needs. 
Marketisation of public services results in individuals and their needs being commodified - a source of income to public and private sector organisations alike.  The moral values which attach to what makes life good for individuals, their families and the wider community are of little or no relevance in a market system. 
This moral vacuum is a fertile breeding ground for some very worrying attitudes. According to some, disabled and older people are burdens being shouldered by an increasingly reluctant society. In an echo of times gone by, our social worth is determined by whether we are ‘productive’, by which is meant whether we can engage in waged labour.  Government policy and rhetoric positively encourages the idea that waged labour is the only way to achieve a good quality of life. Self-determination, control over our lives, is only to be gained if we do not need any support - because to need support to go about our daily lives is to be ‘dependent’, ‘vulnerable’, in other words lacking agency.
At the same time, if our need for support is recognised we are sources of revenue not only for private companies but also for public and ‘third sector’ organisations whose funding is now determined by the ‘marketisation’ of resource allocation.
This inevitably leads to dehumanisation in the way services are delivered.  Procedures are developed which are more about the needs of the organisation than the person they serve. As Mariana Fotaki wrote
We see the effects of these changes in the NHS: imposing a market ethos on health care staff, and a focus on indicators and targets, has led to the distortion of care. Studies have shown the long term reality of the suffering, dependence and vulnerability of mentally ill patients is disavowed, and the complexities of managing those in psychological distress are systematically evaded. It is replaced by work intensification and demands on the overworked front line staff to show more compassion.
Attitudes are nurtured which lead to someone in desperate need of support being described as ‘toxic to the system’. That word ‘toxic’ was used by the same organisation - Southern Health NHS Foundation Trust - to describe Sara Ryan, the bereaved mother of Connor Sparrowhawk, who an inquest found had died a preventable death due to their negligence.  It’s a revealing use of language in both these situations. Toxic means poisonous, deadly, harmful: a young man in extreme need of support, whose life is in danger, and a mother whose advocacy is fuelled by love for her son, are considered to be harmful to an organisation who has commodified those who they are paid to support. 
A market ethos has pervaded health and social care services, reflected in the way that a concern for ‘efficiency’ and ‘value for money’ (reducing costs) has crowded out the importance of personal interactions and relationships between service provider and service user. One result, in the context of people with learning disabilities in ATUs, is a failure to pay attention to how people communicate (including a failure to listen to family members and friends) and a labelling of distress as ‘challenging’ and ‘difficult’ behaviour which needs to be ‘modified’. 
When overworked, under-qualified, and under-supported front-line staff predictably make mistakes, they are exhorted to show more compassion by government while the organisations concerned promise, yet again, to ‘learn the lessons’. 
Is it any wonder that some people are worried that we may be moving back to where we started in terms of people who are not ‘productive’ being ‘warehoused’ in institutions?  This time, however, such institutionalisation is identified as a profit-making activity for private companies while investment in community support and relationships - which would prevent such incarceration - fails to materialise, and the accountability of the public sector to those they serve is undermined.
But, there are lights shining in this darkness.  Out of the #justiceforlb campaign has come a focus on what we should all feel ashamed of: the continued incarceration of people in at best inappropriate, at worst, cruel and inhumane, conditions often many miles away from their family and friends. #7daysofaction told seven stories of people who have been failed not only by particular professionals and services, but also by us collectively.  
We have to decide, as a society, whether we want to go back to a version of the early 1900s, “repeating the mistakes of previous care systems” (as the authors of ‘A Fit Person to be Removed’ put it) or whether we want to design, resource and deliver support which fulfils the vision encapsulated in Article 19 of the Convention on the Rights of Persons with Disabilities, recognising the equal right of all disabled people “to live in the community, with choices equal to others” and facilitating “full enjoyment…of this right and their full inclusion and participation in the community”.


Wednesday, 6 April 2016

The ESA WRAG cut: Rhetoric and reality. Or how making people poorer won't reduce the disability employment gap.

So the government has responded to the Petition calling on it to reverse the £29.05pw cut to the income of people in the Employment and Support Allowance Work Related Activity Group and refused to debate the issue again.

Their response to this Petition is littered with misleading statements - as were the Parliamentary debates on the change.  There is such a yawning gap between government rhetoric and the reality of people’s lives that it’s hard to believe it’s not worth continuing this fight.  

So, here’s an attempt to measure the government’s response to the Petition with some reminders of reality.

“This change only affects new claims made after that date and there will be no cash losers among those who are already in receipt of ESA”

Reality: This statement assumes that it’s OK to disadvantage a future group of claimants because current claimants aren’t affected. It’s not. 

(There also seems to be an assumption that opposition to the cut comes only from, or on behalf of, individuals who are afraid of how they themselves will be affected - a rather jaundiced view of human nature.)

The reality is that the experience of those currently receiving £102.15 pw (the ESA WRAG rate) illustrates how difficult it will be for future claimants to manage on £73.10 pw.

£73.10 pw is the level at which Job Seekers Allowance is set.  However, those on JSA are, on average, only claiming it for 6 months.  This relatively short period means people often rely on savings, help from family and friends, and also that they are less likely to incur large costs of, for example, car or household appliances repairs/replacement, insurance, etc.   The higher rate of ESA (for both those in the Support Group and in the Work Related Activity Group) is in recognition that 60% of people in the ESA Work Related Activity Group are out of work for 2 years or more. This is hardly surprising as, to be eligible for ESA, a person has to be assessed as having ‘limited capability for work’ which means that ‘his capability for work is limited by his physical or mental condition’ and ‘the limitation is such that it is not reasonable to require him to work’.

The longer someone is out of work, the harder it is to manage financially, and this is why our social security system has, since 1971, paid a higher rate to those who are out of work for longer than the average unemployed person. (Note: this higher rate of payment is not anything to do with whether someone has additional costs because of disability - only about half of those in the ESA WRA group qualify for Disability Living Allowance/Personal Independence Payment which is the additional disability costs payment.  See my previous blogpost.)

As it is, people have difficulty trying to manage on the ESA rate of £102.15.  The Disability Benefits Consortium, for example, found that 57% of a sample of 500 people said it wasn’t enough to live on; 28% said they had been unable to afford to eat at times, while 38% had been unable to heat their home. 

“The current system…..acts to trap people on welfare.”

Reality: There is little evidence that reducing levels of out of work disability benefits ‘incentivises’ people into work in significant numbers.  Most findings from the research studies cited by the government and its supporters are limited by the fact that they do not control for other factors which may be more important in determining whether people remain on benefits or regain employment.  All the researchers recognise this and qualify their findings accordingly but this is rarely recognised by those arguing for a cut in long-term sickness benefits.

The Norwegian study cited by Reform in their report (which the government has heavily relied on to support the policy change) found that a 10% reduction in Temporary Disability Benefit resulted in a 3% increase in movement into employment. However, the authors also cautioned “Note that we have no ambition of identifying the effects of the reform [to out of work disability benefits] as such. That would be very difficult, since the implementation of the reform coincided with other developments that probably contributed to the rise in employment…”. 

A systematic review of the impact of changes in eligibility and in levels of out of work disability/sickness benefits found that most studies similarly did not control for factors - such as levels of unemployment - which might also have an impact on movement off benefits and into employment.  The only study that did (from Sweden) found that an increase in the benefit level paid resulted in an increase in the duration on sickness benefits by an average of 4.7 days.

Interestingly, the Norway study cited by Reform found that the decrease in benefits levels not only coincided with a small increased movement into employment but also coincided with a higher increase in movement onto Permanent Disability Benefit. This correlation was also found in a number of studies included in the systematic review mentioned above. It’s very likely that the reduction in the ESA WRAG benefit will be followed by an increase in those moving into the ESA Support Group.

As Ben Baumberg argued, when the ESA WRAG cut was first announced in 2015, an increase in the numbers being placed in the ESA Support Group is likely to happen for two reasons.  Firstly, the increased conditionality and sanctions applied to the Work Related Activity Group is already resulting in an increase in people placed in the Support Group under Regulation 35(2)(b) where there would be a substantial risk to their health or someone else’s health if they were found to be capable of work-related activities. Secondly, claimants will themselves be more motivated to get into the Support Group because of the economic penalty of doing work related activity. Furthermore, once in the Support Group, they will be less inclined to take the risk of trying to enter or regain employment. 

I’m willing to bet that sooner or later we will have Ministers complaining that people in the Support Group are ‘languishing’ on benefits, and that there aren’t enough ‘incentives’ to ‘motivate’ them to seek employment.

The danger of assuming that correlation equals causation is illustrated by the fact that while the value of out of work disability benefits in the UK has been falling as a proportion of the average wage since 1979, over the same period the disability employment gap increased. And of course no government Minister or think tank is claiming that this correlation means the value of disability benefits should be increased in order to reduce the disability employment gap.(1)

“In addition to providing financial security for individuals, work often has a profound effect on people’s life chances and it is right that this Government does everything it can to provide better support to get people into work.”

Reality: Instead of addressing the failure of current “support to get people into work”, the government has assumed that removing a third of a person’s income will result in them getting a job.

To reiterate, the legislation governing out of work disability benefits says that people only qualify for ESA if they are assessed as having “limited capability for work” which means that “his capability for work is limited by his physical or mental condition” and “the limitation is such that it is not reasonable to require him to work”.

Those who have been put in the Work Related Activity Group have been assessed, not as fit for work, but only able to do ‘work-related activity’,  The legislation defines such activity as that “which makes it more likely that the person will obtain or remain in work or be able to do so” and regulations give examples such as action plans, work focussed interviews and training.

In any case the Work Capability Assessment is not, in reality, an assessment of whether someone is able to work. As Demos, amongst many others have pointed out, it is an assessment of functional limitations rather than an assessment of whether there are any actual jobs a person can do. This also means that neither is it an assessment of whether someone can actually do work-related activity, or crucially, what kind of support they might need.

There are two types of employment support programmes, the Work Programme and Work Choice. The former is a generic employment support programme, a payment-by-results programme delivered by private providers.  The generic Work Programme is not succeeding in getting disabled people into work, as is now widely recognised. The most recent statistics from DWP indicate that only 12.5% of ESA new claimants get a job outcome within two years on the programme. The equivalent figure for ex-IB ESA participants is 4.7%. 

The Work Choice programme has a better success rate but - although the Work and Pensions Select Committee recommended expanding it - the government announced last year that they would replace both the Work and the Work Choice programme with a new combined Work and Health Programme.  “Subsequently, it became clear that funding for this new programme would only be one fifth of the level of funding previously provided for the Work Programme and Work Choice.” 

“We are committed to ensuring that people have the best support possible, and that is what these changes are about.”

Reality:  These changes are about reducing public expenditure.  From the government’s point of view they are necessary because previous attempts to reduce the amount spent on disability benefits has failed. 

The Work Capability Assessment and Employment and Support Allowance were introduced in 2008 with the intention of ‘getting people off long-term sickness benefits and into work’. The rhetoric used then and since echoed that of the early 1990s.  Then it was argued that many people on what was then called Invalidity Benefit were actually capable of working and that there had been a growing ‘dependency culture’. 

Invalidity Benefit was therefore replaced by Incapacity Benefit in 1995 and an ‘All Work Test’ introduced, with the aim of being more ‘objective’ than the previous system of assessment which relied on GPs. However, the new assessment did not in fact reduce the numbers claiming long-term sickness benefits, so the All Work Test was replaced with first, the Personal Capacity Test in 2000 and then the Work Capability Assessment in 2008 (when Incapacity Benefit was replaced by Employment and Support Allowance). 

None of these changes have led to the intended reduction in the numbers of people receiving long-term sickness benefits - primarily because, although the number of new claims has remained fairly static since the 1990s, none of the changes has resulted in significant reductions in people actually regaining employment. 

When the Labour government introduced the Work Capability Assessment in 2008, they claimed the new system would lead to a reduction of 1 million claiming long-term out of work sickness benefits (Incapacity Benefit, replaced by Employment and Support Allowance).  The Coalition government also adopted this claim and supported the new system.  However, faced with a failure to reduce the numbers claiming ESA, the new Conservative government in 2015 started to criticise the system which they said they had ‘inherited’.  Before he resigned in March this year, Iain Duncan Smith signalled that the WCA would be replaced with an assessment which is more “personalised” and less “binary”, a system “which is focussed on what a claimant can do and the support they’ll need – and not just on what they can’t do”.  These familiar words and phrases - which have been used by governments every time they replaced one form of assessment and benefit with another in the last 30 years - will undoubtedly figure in the White Paper that the DWP intends to publish later on this year.

The tragedy is that - as most disabled people will tell you - both Labour and Conservative governments have focussed on individuals’ supposed lack of ‘motivation’ to get paid employment, rather than on the barriers of employer discrimination, unsuitable working conditions, job availability, and many other barriers which all too often accompany the experience of disability and/or ill health (see below). 

And incidentally, the replacement of Disability Living Allowance with Personal Independence Payment was similarly motivated by misinformed ideology which led the government to believe it could thereby reduce the budget by 20%.  We now know that only 5% of ‘savings’ have materialised. 

“The current system fails to provide the right support to help those with health conditions and disabilities towards and into work….”

Reality: It is certainly true that those disabled people who want to retain and regain paid employment are not receiving the ‘right support’.  But that is because the government is failing to address the factors which act as barriers to employment. And failing to provide the kind of support which does address barriers to employment.

There is considerable evidence from good practice examples, including those presented to the House of Lords Select Committee on the Equality Act 2010 and Disability, that when employers fulfil their duty under anti-discrimination legislation to make ‘reasonable adjustments’ to address barriers facing disabled people, this enables people to gain and retain employment.  However, the Committee also concluded that the government was not doing enough to encourage awareness of duties relating to reasonable adjustments.  Their report drew attention to the inappropriateness of relying on individual disabled people taking action to enforce their rights. Moreover, far from making it easier for disabled people to access their rights under the Equality Act, the government has made it harder by introducing employment tribunal fees.

The rights of employees are important in enabling disabled people to retain employment and this is illustrated by analysis of what happened across a range of countries during the last recession: where employment protections were greater the likelihood of becoming unemployed for those with ‘chronic illness’ was reduced. This confirms the longitudinal study published by the Department of Work and Pensions in 2003 which found that disabled people were less likely to lose their jobs if their workplaces were characterised by good employment protection. 

Recent changes in the UK economy have resulted in an increase in the kind of working conditions which would make it harder for disabled people to gain and retain employment.  This includes the increase in temporary agency work - a feature of the UK labour market in recent years - which has been accompanied by an increase in employers circumventing employment protection legislation and also in the type of working conditions which are both associated with poor health and which are harder for people in poor health to manage.

Unfortunately the current government considers employment rights to be unnecessary ‘red tape’, as illustrated by their inclusion of the Equality Act in their programme to reduce ‘burdens on businesses.  As the House of Lords Select Committee concluded, the government has “made changes under the Red Tape Challenge which increase the problems of disabled people….The Government, instead of concentrating on the burden on businesses, should be looking at the burden on disabled people”.  

A survey of people in the ESA Work Related Activity Group found that, while most felt that their state of health was a barrier to employment, the majority also wanted to work and identified ways in which work could be adjusted to make this possible, the most common being “flexible working, working from home, working less than 16 hours per week, increased confidence on the part of employers, and the opportunity to prove their abilities through work trials rather than interviews”. It is hard not to conclude that it is working conditions that need to change, not people who are claiming out of work benefits.

At the same time, the government has failed to significantly invest in the one programme which has a proven track record in supporting disabled people to work. Access to Work is a government funded programme, started in 1994, which pays for equipment, adaptations or support required by a disabled person in, or about to enter, employment or work experience, or who is doing ‘permitted work’ while on ESA.  It is a programme that in the past has been much praised by disabled people for helping them gain or retain employment and has also been described as the ‘best kept secret’, the assumption being that if it was more known about and better funded more disabled people would benefit from it.  It is also the type of government expenditure which makes economic sense as for every £1 spent on Access to Work the Exchequer recoups £1.48.

In the first two years of the 2010-15 Coalition government, there was a 17% reduction in the numbers of people helped by Access to Work (partly because of a rule change excluding larger employers, brought in by Labour).  Since 2012/13 the numbers of disabled people helped have increased but have still not reached the same level as in 2009/10. (2)

In 2015, the government decided to cap the amount of support that an individual could get from Access to Work - on the grounds that this would enable more people to be helped.   Research by a number of disability organisations in 2015 found that nearly all A2W users whose funding had been reviewed had experienced reductions in the help they got but the DWP has refused to release information which would confirm whether this is true or not. Deaf people have raised particular concerns about the impact on people who use BSL interpreters. 


The reality is…..
….that if the government really wants to tackle the ‘disability employment gap’ then it needs to stop trying to ‘fix’ disabled people’ and instead turn its attention to the factors which create poor health, insecure employment and poor working conditions.  Making people poorer will not magic up good health, good employers or good working conditions.  


  1. And if you really want to look at the problem with assuming statistically significant correlations tell us something about causality, have a look at this website which, amongst other things, points out that there is a statistically significant correlation between trimming the fat off your steak and being an atheist.(with thanks to Tim Harford’s Radio 4 programme More or Less for highlighting this).
  2. The November 2015 Spending Review announced “a real terms increase in Access to Work….to help a further 25,000 disabled people each year remain in work”.  However, when asked to confirm this, the Department for Work and Pensions refused to comment and I have not been able to find any indication of an increase in the Access to Work budget to make this a reality (if anyone else can find it I’d be grateful!).

Friday, 18 March 2016

Personal Independent Payment: Please get your facts right.

So we've moved on - in the space of a week - from discussing the government's removal of £30 pw from those assessed as not currently fit to work but who might work sometime in the future.  

Now the debate is about the realisation that most of the money George Osborne needs to fund his tax cuts for the better off will be funded by reducing the amount of money spent on Personal Independence Payments (PIP).

In the debates and discussions which will happen over the next few days or weeks about the government’s plans for PIP, I’ve got an important request to make of journalists and politicians alike: please get your facts right.

For example, compare these statements by Tory MP, Dominic Raab, on the Daily Politics show on 9th March, with the facts:

He was being questioned by Andrew Neil about the cut of £30 pw to those in the Employment and Support Allowance Work Related Activity Group (ESA WRAG).

“We’re moving to a situation where if you have a disability condition you get your Job Seekers Allowance the same as anyone else and then the entitlement you get for your condition is moved over to what is called Personal Independence Payment - in effect it means that you have a personally tailored uplift bearing in mind the impact your condition has on your work prospects”.

Fact: Personal Independence Payment is nothing to do with whether someone is fit enough to work.  It is an additional costs payment, intended to mitigate the extra costs of daily life which disabled people incur.  PIP is made up of two components, a care element - eligibility for which depends on your need for assistance or equipment to do daily living tasks;  and a mobility element - which depends on your ability to walk or to move around unsupervised.  PIP is not means-tested: you can receive it regardless of your employment status or your income.  It is similar to child benefit, which is paid in recognition of the additional costs of bringing up a child and until recently was also not means-tested at all.

Another Fact: The higher rate for those on ESA, in comparison with Job Seekers Allowance, is in recognition that the great majority will be out of work for far longer than those on JSA, partly because they have been assessed as not being currently fit enough to seek work, partly because of the barriers they face to employment even if they are fit enough.  The longer a person is out of work, the bigger impact that has on their daily living costs (savings are depleted, repairs are required to household appliances, insurance has to be paid, etc etc). The removal of £30pw so that those in the ESA WRA Group only receive the same amount as those on JSA is a removal of the recognition of the financial costs of longer-term unemployment.

Andrew Neil asked Dominic Raab whether this £30 cut wasn’t rather cruel.  Raab replied:

“What is happening is it’s not a straight cut, that element is shifted into a personally tailored assessment of what actual need is so it’s not just a tick box exercise”

Fact: It is a straight cut. About half of people on ESA WRAG already get PIP.  The rest could be getting it if they were eligible. (So we might ask was Dominic Raab lying or is he just uninformed/misinformed?)

Another Fact: The assessment for PIP is a ‘tick box’ exercise.  The need to use particular equipment, or the ability to walk, is a proxy indicator of levels of impairment. It’s a much cruder measure than the assessment for Disability Living Allowance which was replaced by PIP.

Andrew Neil probed some more about the ESA WRAG cut, asking whether some people wouldn’t still be economically disadvantaged.

Dominic Raab responded:

“And that’s precisely why the Personal Independence Payment should make sure that doesn’t happen and it’s a far more accurate, personally tailored assessment of what their real personal needs are.”

Fact: He’s either lying or is uninformed/misinformed. See above.  Currently, about half of those in the ESA WRA group already receive PIP.  Future claimants of ESA, placed in the Work Related Activity Group, will receive £30 less per week - regardless of whether they qualify for PIP or not.  The government’s justification for reducing the payment to the same level as JSA was that the cut would be a financial incentive to seek work - although these are people who have been assessed as currently not fit to work.

Other misleading statements about the proposed change in eligibility criteria for PIP.

George Osborne: 
“On welfare, last week my Right Hon Friend the Secretary of State for Work and Pensions set out changes that will ensure that within the rising disability budget, support is better targeted at those who need it most.”

Fact: When the Coalition government came in they attempted to cut the budget spent on helping with additional costs of disability by replacing Disability Living Allowance with Personal Independence Payment.  The aim was to reduce the budget by 20%.  They failed to do this and the budget continued to rise but the change still meant that many, many individuals have seen a reduction in the help they receive.  For example, in order to lease a car or a wheelchair using the Motability scheme, someone has to receive the enhanced rate of the mobility component of PIP.  So far 45% of Motability users (13,900) who previously received the higher mobility rate of DLA have been re-assessed for PIP and have lost their Motability-leased car or wheelchair as a result

The consequences for some people are life-changing - and life-ruining. Kate Rae, told the Guardian how, six days into a new job, she got a letter calling her for a reassessment as part of the replacement of DLA with PIP. Because she was assessed as capable of walking between 20 and 50 metres she lost the enhanced mobility rate, no longer qualified for her Motability leased car which she used to get to work.  She was forced to give up her job and, last night, on the BBC local TV news she was interviewed while she packed up her flat in order to move back to live with her mother. So much for ‘personal independence’ - and it’s only one example of how thousands of people’s lives are being ruined as a result of the ideologically driven aim of reducing the size of the state.   (See also this article by Frances Ryan)

Justin Tomlinson (Minister for Disabled People): 
“This is not a financial measure”.

Fact: It is. The replacement of DLA with PIP did not produce the 20% budget reduction that the government intended.  This is not surprising because the motivation for the change was solely driven by financial considerations - the government’s desire to reduce public expenditure - and bore little relation to the reality of disabled people’s lives. The government assumed a lower proportion of new claimants and people transferring from DLA would qualify for PIP than has turned out to be the case.  

As the reduction in the PIP budget is such a significant part of the savings to be made by 2019/20 in order to fund tax cuts for the better off, we can only assume that financial motivations were paramount in order to deliver the government’s political priorities.

Various Ministers: 

We’ve consulted on these changes and are following independent advice that the current assessment isn’t working well.

Fact: The government is ignoring the majority of organisations and individuals who responded to the consultation and has distorted the findings of the review it commissioned from an ex-DWP civil servant. 

281 responses were received to the consultation.  Only 11 (all individuals) supported the changes. The DWP recognised that the majority strenuously opposed them, summarising that:
  • Respondents felt that reliance on aids and appliances is a good indicator of additional costs.
  • Respondents questioned the effectiveness and accuracy of the PIP assessment, both in terms of the policy underpinning it and the application of the policy.
  • Respondents were concerned that any of the options for change would have a negative impact on the individuals affected.
  • Respondents felt that any of the options for change would increase individuals’ needs for support from other public services and could lead to increased PIP expenditure. 

(It’s also worth looking at the ‘Crippling Choices’ report by Spartacus Network - which is more grounded in the reality of people’s lives than any evidence the government has produced )

The ‘independent review’ cited is a 2014 report by Paul Gray, an ex-DWP senior civil servant who reported that:  “Anecdotally, the Review heard from some case managers who felt they saw a higher than expected number of assessment reports where aids and appliances were used in justifications”.  However, he concluded: “Data so far available is insufficient to draw meaningful conclusions about the composition of PIP awards”.  (see also this article which summarises the review’s findings on aids and adaptations )

When journalists and politicians debate these issues they are talking about things which affect many thousands of people's lives.  The least we should expect them to do is to get their facts right.