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. 
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. 

Saturday, 12 March 2016

Self-determination and citizenship: out of reach for disabled people?

[This is the text of a talk I gave at Norah Fry Research Centre, University of Bristol, on March 10th, 2016]

When I was asked to do this lecture it was suggested I do something about disabled people and citizenship.  Around about the same time, I had a conversation with a hairdresser (as you do) and also listened to a You and Yours phone in (as I try not to do), both about citizenship.

The hairdresser was a young Iranian woman who was applying for British citizenship having been here for five years or so.  I asked her why she wanted to settle in this country, given that all her family were still in Iran.  She said that firstly she felt safe here and secondly, even though things may be improving in Iran, she thought it would be many years before it became really democratic.  I asked her what she meant by ‘democracy’ and she talked about ‘a government that looks after its people’.

The You and Yours phone-in asked people who had come here from other countries and become British citizens, when they first felt like a citizen - and almost everyone who phoned in talked about a feeling of being accepted, and of belonging. 

So together the hairdresser and the You and Yours contributors conjured up a picture of a society where people are accepted for who they are, a community to which you feel you belong, where you feel safe, and where you know that your government will act in your best interests and will not harm you.

I was particularly struck by this because I increasingly feel that more and more disabled people do not feel safe, do not feel accepted for who they are, and where our government seems to be acting in ways which - far from being in our best interests - actually harm us. 

I also thought I would revisit the paper I wrote about citizenship and disabled people in 2005 for the Disability Rights Commission (DRC). That was also the year that the government published a 25 year strategy to improve the life chances of disabled people, setting out the aim that:

In the DRC report, I argued that there were three aspects of citizenship: self-determination; participation and contribution.  And that self-determination was critical because without self-determination we are held back from both participating and contributing.

So what do I meant by ‘self-determination’?  It’s about making decisions for yourself, what is often called autonomy. For example, in making the case for people with learning disabilities’ rights to citizenship, Simon Duffy states, “Put simply, if you have self-determination then this means you are in charge of your own life. If you do not have self-determination then other people are in charge of you” (Simon Duffy, 2003, Keys to Citizenship, Centre for Welfare Reform, p.5).

Being in charge of your own life - making decisions for yourself - is not a simple matter if you require assistance to go about your daily life, particularly if you need assistance to communicate and to express your preferences. Self determination for disabled people is not only about removing barriers - what people often call ‘negative rights’, a right not to be coerced to do something.  It’s also often about having the right kind of assistance so that your choices can be put into action. So, for example, detaining people with learning disabilities in long-stay hospitals creates a barrier to self-determination but closing down the hospitals is not sufficient to enable them to exercise choice and control over their lives. They may also require support to make choices, set up home, manage their own money, seek employment, and so on. And they won’t be able to make decisions for themselves if their previous accommodation is merely replaced by another form of institution. They will need, instead, to have somewhere to live where they can make the ordinary choices of daily life. Not only that, but the community in which they want to live may need to make some changes themselves because, in many cases, changes in attitudes will be required so that people with learning disabilities are welcomed and accepted.

For disabled people therefore, self-determination cannot be achieved without positive rights - rights to action to be taken by other people, organisations and by society in general.  The UN Human Rights framework recognises these kinds of economic, social and cultural rights and the UN Convention on the Rights of Disabled People sets out how disabled people require specific action in order to have access to the same life chances as non-disabled people, particularly in Article 19 which concerns independent living.

So how is our society currently doing at promoting such positive rights, rights which are essential if disabled people are to have access to full citizenship?  More specifically, what is our current government doing, on our behalf?

The answer to that question is, unfortunately, that current government policies  are removing the assistance required to promote our self-determination, participation and contribution.  And in the process, people feel less safe, are more likely to live in poverty, are denied opportunities open to others, and in some cases have shortened life expectancy.  Government policy, in other words, far from promoting our citizenship, is actually doing us harm.

I’ll just briefly discuss two policy areas before going on to identify what I think are the fundamental problems underpinning and driving these developments.

“Getting disabled people into work” is currently the main focus of policies which are supposedly intended to enable us to be full citizens, and reduce the risk of living in poverty. Welfare reform is the mechanism to do this, fuelled by the assumption that the primary barrier is - not the attitudes of employers, or even the experience of impairment or illness  - but the motivation and attitudes of disabled people themselves. The most recent example of this is the removal of £1500 per year from people who have been assessed as currently not able to work because of illness and/or impairment, on the grounds that this would improve their motivation to “move closer to the labour market”.

At the same time, policies aimed at providing the assistance that people might need in order to get or retain employment are failing - primarily because they are not based on disabled people’s actual experiences and needs. 

Two examples: The Work Programme - the government’s main programme for helping people to get a job - is only managing to assist about 1 in 9 people on ESA into employment.  The Programme generally has a poor record in enabling sustained employment with only 1 in 4 remaining in employment for 6 months or more.

But it’s not just that the Work Programme isn’t achieving its aims.  It’s also actually harming people.  A survey carried out for Mind found that the majority of disabled people who were put on the Work Programme felt that the experience had worsened their mental health and had made them less likely to gain employment. Almost 20,000 people with mental health difficulties had their benefits stopped as a result of sanctions during 2014/15, an increase of 668% over the last four years. And sanctions mean no money for food, heating, rent.

At the same time, Access to Work funding - intended to pay for the support, equipment or adaptations that people might need in order to work - has been restricted for each individual and this is threatening, amongst others, people who need Sign Language Interpreters. Jenny Sealey, for example, fears that she will no longer be able to work full-time as a theatre Director. There is  also anecdotal evidence that, in general, when people are reassessed their funding is being reduced, although the DWP has refused a Freedom of Information request which would confirm whether this is a common experience.  Although there have been increases in last couple of years to the Access to Work budget, earlier cuts have not been made up and it is still not funding as many people as it was in 2010.

The message that disabled people are getting is summed up by Jenny Sealey when she says:  “I am very curious to know why Deaf and disabled people are considered second-class citizens, why we are ghettoised, discriminated against and deemed worthless”.

These two examples illustrate two key aspects of current government policies: a punitive approach to what we used to call social security but has now been renamed ‘welfare’, which bears very little relationship to people’s actual experiences or needs; and an over-riding aim of cutting public expenditure. The message is that the key to being accepted as a full citizen is to be in paid work; but that there is a limit to which we the government, on behalf of all citizens, is prepared to pay to enable you to enter and retain paid employment.   And what’s more, we think the main barrier is your attitude to work so we will reduce your benefits in order to ‘incentivise’ you to try harder. No wonder many disabled people caught up in the benefit system feel very very insecure. 

The second policy area concerns independent living - two words which sum up what it is to have self-determination, and to have the opportunities to participate and contribute.  But access to independent living has been undermined by cuts to social care budgets.  Although independent living is not just about social care, it is no accident that a protestor at Norfolk County Council’s recent meeting where further cuts of £50m were made to social care, held up a placard saying “No to 2nd Class Citizenship for Disabled People”.

Increasingly people who need support to go about their daily lives are finding that the maximum support available confines them within the four walls of their own home.  Fifteen minute visits three times a day is, for many older disabled people in particular, the maximum help they can expect from their local authority.  Deaths amongst older people have been rising since 2011, having previously fallen since the 1970s, and it is claimed that this is a result of the ‘crisis in social care’. 

The Care Act and the accompanying statutory guidance is full of fine words but the promotion of so-called ‘well-being’ is incompatible with the level of cuts sustained by social care and the proposed 2% increase in council tax is not sufficient to make good the total level of funding cuts since 2010.  The same Norfolk County Council meeting which cut the social care budget also raised its council tax by not 2% but 4% (primarily because they needed to in order to continue to provide statutory children’s services). 

The closure of the Independent Living Fund was a major setback.  It is not just that many people transferring from ILF funding are reporting reductions in the amount of support they receive, and restrictions on how they can use their direct payments, but that there are thousands of people who, since the Fund closed to new applicants in 2010, have never had the opportunities that the ILF had been delivering to people with the highest support needs since 1988.

The largest group of people who received funding from the ILF were people with “severe learning disabilities”.  Will they be more likely in the future to enter institutional provision, for example the new hospital in Northampton on the site of the old Northampton Lunatic Asylum which boasts of being the ‘Europe’s largest mental health facility for young people learning disabilities and/or autism’?

Whatever the government’s intentions set out in its various responses to scandals such as Winterbourne View, American companies have identified lucrative opportunities for moving into the provision of in-patient mental health services, particularly those specialising in secure accommodation for people with learning disabilities and/or autism. Journalists writing about these developments put them down to a ‘rise in NHS outsourcing’.

In 2013, Guardian journalist, Zoe Williams, posed a question to the government we would all like an answer to: “What's your plan for these people whose lives we apparently can't afford?”  She was specifically referring to those affected by the closure of the ILF but there would seem to be an increasing number of disabled and older people who are getting the message that society in general is not willing to allocate sufficient resources to enable them to go about their daily lives in the way that non-disabled people might take for granted. 

I could carry on depressing us all by listing the many many other policies which are undermining disabled people’s self-determination, and failing to deliver full citizenship.  But there are common factors driving these policies and we can’t hope to counter them unless we address these fundamental issues. 

These factors are inter-related and there are many different facets of them but I think they can be divided into two: a belief that public goods and services are best delivered through competition between providers; and a failure to recognise the economic and social value of the common good.

The basic assumption behind the promotion of competition in public service is that accountability is to be achieved via market mechanisms. So, with the NHS, first a so-called ‘internal market’ was introduced in the early 1990s and then competition was opened up to private providers.  The theory is that competition will increase efficiency (by driving down costs) while commissioning for outcomes, together with regulation, will assure quality.  This is not so much privatisation of NHS providers (although there has been a steady increase in private companies gaining NHS contracts) as the marketisation of all healthcare, whether provided by public bodies or not.  

But if markets are supposed to deliver efficiency and quality, why do we get to a position where, to take only a couple of recent examples, our taxes were paying up to £4000 pw for a private company to keep people with learning disabilities - described as needing “extra help to live 'in the community’” - in inhumane conditions.   Or where we were paying an NHS organisation over £3000 pw to provide such negligent care that a young man with learning disabilities and epilepsy drowned in a bath?

Why haven’t those commissioning or regulating these services, on our behalf, prevented this kind of thing happening?  How, for example, can an NHS Trust be found so negligent that it is responsible for the deaths of people in its care, which fails to investigate more than a handful of ‘unexpected deaths’ and yet no-one is held accountable.  Marketisation of NHS services - whether they are outsourced to the private sector or not - has not delivered accountability to its service users. 

The provision of social care was, of course, privatised as a result of the community care reforms in the 1990s.  This was intended, like all privatisations, to deliver choice, quality and efficiency but as things currently stand none of these things have materialised.  Instead, we have a regulator struggling to impose acceptable standards while care homes and homecare agencies go out of business because local authorities won’t pay enough for their services.  The bottom line is that there isn’t enough money going into the social care system. The private insurance industry has not been able to identify sufficient profit making products to provide an alternative to public funding and governments have been increasingly unwilling to provide sufficient resources raised from general taxation to meet the demand for good quality care.

It isn’t just that market mechanisms have proved unable to deliver quality and efficiency, it’s also that we as a society have not valued health and social care enough to be prepared to spend sufficient of our collective resources.  Or rather, we haven’t elected governments who have recognised the full extent of how vital these services are to our common good and who then use our collective resources to make the necessary expenditure.

As philosopher Michael Sandel says: “Some of the good things in life are corrupted or degraded if turned into commodities, so to decide when to use markets, it’s not enough to think about efficiency; we have also to decide how to value the goods in question”. (See ‘What Money Can’t Buy: The moral limits of markets’)

The other policy area that I focussed on - welfare reform - illustrates this second underlying problem. Not only have we as a society failed to value the common good, but an individual’s social value is increasingly defined as being in paid employment. None of the roles that most people fulfil outside their working life are to count as the contribution part of being a citizen. Moreover, paid employment is identified as the over-riding policy aim with no recognition that, for increasing numbers of people, work is bad for their physical and mental health because it is insecure, badly paid, and the working conditions are poor.  Despite this, the recent Mental Health Taskforce strategy identified employment as a “health outcome” outcome. 

This linking of social value with being in paid employment has its logical conclusion with Times journalist’s Matthew Parris’ contention that older and disabled people are “an unproductive overhang” and his belief that in the future it will be seen as ‘selfish’ for older people to refuse to accept assistance to die once they need a certain level of health and social care.

To summarise, citizenship for disabled people is incompatible with the kind of society that we are becoming (or, arguably, have already become).  This is because:

  • governments have refused to raise sufficient levels of collective resources to support the social rights necessary to our full citizenship
  • public services have been undermined and devalued by subjecting them to marketisation and/or outsourcing/privatising
  • attitudes have been promoted which value human beings only according to their productive value.

The result is that disabled people’s ability to contribute and participate is being fundamentally undermined, in particular because the support required to enable self-determination is inadequate and steadily declining.

I hate being so pessimistic so I’ve been trying hard to find ways to be more positive.  And there are a few things we need to hold on to.

While the policies and behaviours of government and organisations can make life very difficult for front-line workers, it is important to hold on to the fact that individual workers do have opportunities to make a real difference to people’s lives - and to help people to make decisions for themselves about their lives.  It’s relationships that matter: for example, recent research, like much previous research, found that people using mental health services saw their relationships with care co-ordinators as being central to their recovery.

Lucy Series, a researcher at Cardiff Law School, writes a blog called The Small Places, the title of which refers to something Eleanor Roosevelt said in 1958:

"Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world."

For all of us, it’s in the small places of our daily interaction with others that we have the opportunity to behave in ways which are kind, which recognise people’s full humanity and which can thereby help contribute - sometimes against heavy odds - to their value as citizens.

Another cause of optimism is the way the awful experiences of individuals have - primarily through social media - been brought out of the private sphere into the public.  In the early days of the disability movement we neglected the experiences of people with long-term health conditions. And although these are the people who arguably have been most affected by welfare reform policies in recent years, they are also the people who have led the campaigns against such policies.  People who cannot leave their house, who cannot engage in more traditional forms of campaigning have made their voices heard through social media.  In addition, those who in the past would have been using the traditional forms of getting their voices heard have also capitalised on the new opportunities for communicating a message.  One key example is the Justice for LB campaign - which included the first ever live tweeting of an inquest into the death of a young man with learning disabilities - and which has used other imaginative and evocative methods combining real world and virtual world methods.  

But all the time we have to recognise what are the fundamental causes of the problems we face.  A denial of the common good; an attack on the idea that we can pool resources to promote the common good; a removal of democratic accountability from government and local government and their replacement by the accountability of the market.  What we need is more democratic accountability not less.  What we need is a recognition that there are some things which we should value as a society and which cannot be efficiently or effectively delivered through financial incentives and self-interest. In particular, what we need is the involvement of people whose lives are affected by the way we use collective resources. If we think that increasing employment opportunities for disabled people is a good thing, then systems and services to achieve that must be designed by disabled people themselves. And if we want to use public money to enable people with learning disabilities, currently shut up in institutions, to lead ordinary lives then it is they, their advocates and their families who should to decide how to use that money. 

Until we address these fundamental causes disabled people will increasingly feel unsafe, as if we do not belong, and as if our government is not acting in our best interests. And, to answer the question posed by my title, self-determination and citizenship will indeed increasingly feel out of reach for disabled people.