Friday 30 November 2012

Leveson and Disability, Ships Passing in the Night

We’re not imagining it, the Leveson report admits there really is an anti-disability agenda in the press. You just have to dig deep to find the admission!

The press coverage has inevitably focussed on the recommendations for press regulation, and the PM’s instant retreat from it into a lock-in with the hacks in the Last Chance Saloon (which the Press were told they were inhabiting after the last press inquiry in 1990 following the death of Princess Diana), but that forgets that Leveson took a huge amount of evidence, written as well as in person, and the report is not only his recommendations, but his analysis of that evidence and with it the way that the contemporary press behaves.

While it was phone hacking and the Millie Dowler and Maddie McCann cases that dominated the press coverage, evidence was submitted to the Inquiry about the way that disabled people have been systematically demonised by the press, but unfortunately Lord Leveson refused to call disability groups to give evidence, restricting them to written evidence.

Time and again as you skim through the huge (2000 pages) report you find a section where you think that Leveson is about to talk about disability, but then he shies away again and very little of substance is actually said. He actually raises it in a section in Volume II entitled ‘Harm’ and with the spiralling disability hate crime rates you think that surely here is where he will talk about disability, after all he’s going into detail in the section on the complete fabrication of anti-Muslim stories and the outing and ridiculing of Trans people unfortunate enough to draw media attention, but then he falters at the final hurdle and disability is reduced to ‘them too’. The value for disabled people here is his conclusion that groups as well as individuals need to be able to call on a press regulator to protect them, all too often the PCC has simply dismissed complaints about the most outrageous attacks on disabled people because no individuals are named, but it is still an opportunity missed.

Leveson finally hits his disability stride in the next section, reporting three media stories around ESA stats, one from the Mail, one from the Sun, one from the Express, and all three particularly egregious examples of their kind. Leveson concludes that the stories are clearly inaccurate, indeed that there is no reasonable way to draw the conclusions being trumpeted in headlines alleging “94% of incapacity benefits [sic] can work”. Leveson tacitly accepts the conclusion that there is a clear anti-disability agenda at work, which could actually be hugely valuable, because it is further official recognition, after that of the Select Committee on Work and Pensions, that there has been a concerted press campaign to demonise us. Disturbingly, even in this section the evidence from disability groups and from journalist Katharine Quarmby, author of the seminal ‘Scapegoat: Why We Are Failing Disabled People’ goes unreferenced, it is only the evidence from media accuracy group Full Fact, with additional reference to the concerns of the Select Committee on Work and Pensions, that features in Leveson’s analysis. It would seem the learned judge hasn’t come across Nothing For Us, Without Us.

A full half of Volume III is devoted to Data Protection, and with data on ‘vulnerable’ people drawing additional protection under the Data Protection Act, together with certain notorious cases such as Gordon Brown’s child, you would expect disability to crop up once or twice, sadly it seems not to occur even once. Volume IV does have one interesting revelation, that in 2005 the PCC lobbied against a European Directive that would have outlawed audio-visual content that incited hatred on the grounds of, amongst other things, disability, because that would ‘infringe on editorial prerogatives’ (even though audio-visual content is barely relevant to the PCC). It is quite frightening that the press regulator will go out and lobby in defence of an editor’s right to bigotry, but not to defend vulnerable minorities against it.

Volume IV does address our needs when Lord Leveson returns to the subject of discrimination against groups rather than individuals, arguing that there is no good reason why the press regulator should not address this, and impose sanctions and redress if that is required. This has been a substantial weakness of the existing press regulation and we shouldn’t underestimate how significant a change it could be, but we need it to be wrapped up in a press regulatory mechanism that does address incitement to hatred, and I think Leveson has shied away from that, in fact he acknowledges in a later section that harm of this kind is difficult to address through self-regulation (which is another reason to line up against Cameron’s refusal to legislate). Unfortunately that is the last reference to disability in the Report, though it had rapidly become clear that the Report was not going to instantly reverse the campaign of vilification that continues to be directed at us.

In her piece for Channel 4 News, Katharine Quarmby perhaps nails the true problem with Leveson and disability, talking about his refusal to call disability groups to give evidence before the Inquiry and saying he “displayed the nervousness around disability that so characterises the elite” and ultimately glossed over it rather than try to understand the politics that surround us. Unfortunately that means a deeper analysis of press demonisation of disabled people is now a discussion for the next inquiry into press ethics – it’s a pity we only have them once a generation....

Thursday 29 November 2012

Disabled? Work Programme? Bah, Humbug!

Collector: At this festive time of year, Mr. Scrooge, it is more than usually desirable that we should make some slight provision for the poor and destitute.
Scrooge: Are there no prisons?

It has been known for a while that the DWP, under the Glorious Leadership of the finger-wagging Iain Duncan Scrooge, plans to extend compulsory workfare to disabled people. Thanks to a DWP memo, we now know this will kick off on the 3rd of December, and as a lovely Christmas present for we ‘workshy’ Tiny Tims, Dear Uncle Iain Duncan Scrooge is extending the sanctions regime for disabled people from the very same date.

The implications of the Compulsory Workfare changes are that workfare contractors from the likes of A4E, Serco and Igneus are being given the rights to determine that a disabled person, who even ATOS have acknowledged is not fit for work, should in fact be forced to work for an indefinite term. These people are not experts in disability and they certainly are not experts in the limitations imposed by our individual disabilities. Worse still, they are driven by a bonus-dependent pay structure to get us into work come what may, yet they will have the authority to send us on indefinite forced labour, at a fraction of the minimum wage, no matter our objections that our disabilities will not allow us to do the work, or that it is actively dangerous to our health.

The memo repeats Dear Uncle Iain Duncan Scrooge’s favourite claim that work is good for you and that being out of work is actively bad for your health, almost as though DWP were desperate to convince their own staff and contractors that bullying disabled people into work is a good idea; the problem is that this research relates to the population in general, and is completely inapplicable to a cohort of disabled people ruled unfit for work by even the notoriously biased Work Capability Assessment. When I was working I used to end each working day curled up in foetal position on the office floor, in so much pain that I couldn’t think straight; I’m really not certain that counted as good for me.

It is particularly interesting that the memo is worded to refer to people in the WRAG as having ‘limited capacity for work’, whereas the ESA WRAG criteria define us as ‘not currently fit for work’. It is never a good sign when you need to hit the definitions with a sledgehammer to get them to fit your policy.

For those who have never experienced the DWP in action first hand, this may all seem a bit theoretical, and surely no reasonable person would expect a disabled person to do something they aren’t capable of, or that might even be dangerous to them? That is something I am sure Dear Uncle Iain Duncan Scrooge would be the first to claim, but I have actually been here before and yes, we do have something to fear. Back in 2009 I was claiming JSA, and was referred to Flexible New Deal, one of the workfare predecessors. Knowing full well that I was disabled and walked with crutches, JCP sent me to attend an interview with a workfare contractor in a building accessed up a flight of slippery external iron steps, in foul weather, in an office so stuffed with furniture I could barely fit into it and certainly couldn’t walk safely, where I was expected to discuss the intimate details of my disability while sat back to back with someone else discussing his ongoing drug problem.

Now, to the credit of the people who interviewed me, they realised immediately that I was far too disabled for the scheme and should actually be on ESA, but even with them reporting this back, JCP insisted that I had to go on the scheme come what may. It was only when I wrote a letter of complaint and copied it to my MP, in his persona as the then Minister for Disabled People, that there was a magical change in JCP’s attitude and would I please change my claim to ESA? My ESA claim has been a nightmare all of its own, but perhaps the salient feature for the current topic is that I was told I would be called for an interview with RBLI, the training arm of the Royal British Legion, which, I was warned, would be in a yet another building accessed up an external iron staircase….

I actually received a written apology from JCP admitting they had ‘lost track’ of my disability. Yet the initial contractor kept demanding I come back for further interviews, even though I wasn’t even claiming JSA any more, and, even once they ‘remembered’ I was disabled and moved me on to ESA, the workfare contractor, the commercial arm of a disability charity, dealing solely with disabled clients, had an office up a flight of external iron stairs and half a mile from the nearest disabled parking. That is not just ‘losing track’ of my disability, it is an active contempt for my disability, and even my safety.

And now that contempt is going to be capable of meting out mandatory workfare backed by sanctions. We already know from DWP data that disabled people are being disproportionately sanctioned. 10,130 sanctions were applied to around 8,500 disabled people (some being sanctioned twice or more), 45% of those sanctions were directed at people with mental health issues, despite only 30% of disabled participants having mental health issues. With Work Programme figures being released in different places at different times it is difficult to determine the overall rates of sanction, but combining the newly released outcome figures with the earlier sanction figures should give us a lower bound (as the earlier sanctions statistics will have applied to a smaller pool and there is anecdotal evidence sanction rates are increasing). That gives us 8,500 sanctioned from a population of around 80,000 disabled participants, or around 10.5%, which is significantly higher than on the Work Programme as a whole, where a Freedom of Information request has revealed a typical sanction rate of 6%. This sanctions regime applies even as the Work Programme fails to get disabled participants into work at an even greater rate than it fails non-disabled people (only 1.3% of disabled Work Programme participants were found work, versus 3.5% for non-disabled participants, and against an expectation that 5% would find help even without ‘support’). 

The sanctions changes are detailed on the DWP’s website. At the moment disabled people can be sanctioned if they don’t attend a Work Programme interview or don’t do whatever ‘work related activity’ is mandated, and I have already heard of disabled people being threatened with sanctions simply for having their disability manifest itself in the middle of a training course. Some contractors are even reported to have regional offices solely dedicated to handling sanctions, or to have reduced the sanctioning process to pushing a button, removing any chance of individual circumstances being adequately considered. Some even have targets for sanctioning (see this DWP document, page 77/78). The current sanctions start at 50% of your benefit, rising to 100% after 4 weeks, but stop when you are beaten into submission. That is bad enough, but under the new regime they won’t stop even when you submit, you will face an additional punitive fixed term sanction even after complying with whatever is being demanded, one week for a first ‘offence’, two weeks for a second, and four for any following instances. It is difficult to construe this as anything other than deliberate and calculated punishment, with no regard whatsoever for our disabilities.

It is also disturbing to note that even if you submit an explanation for why you are unable to participate, DWP expect you to participate while they consider it. If they don’t accept your explanation you can appeal to a tribunal – but better hope those are running faster than the one year plus delays currently being experienced on WCA appeals…

And the truly contemptuous irony, all of these savage changes from Dear Uncle Iain Duncan Scrooge are coming into force on 3rd December, the International Day of Persons with a Disability.

Friday 23 November 2012

Always the Pall-Bearer, never the Corpse - Lord Freud & The Risk-Taking Poor

This week, Lord Freud, parliamentary Undersecretary for the Department of Work and Pensions, has been talking once again about the lifestyle choices of benefit claimants and the fact that poor people simply don't take enough risks.

In an interview for House Magazine, where he speaks sensibly about the need for better guidance and clarity within the system, Freud continues to reveal his profound naivety about the lives of people on low incomes. 
“You know, the incapacity benefits, the lone parents, the people who are self-employed for year after year and only earn hundreds of pounds or a few thousand pounds, the people waiting for their work ability assessment then not going to it – all kinds of areas where people are able to have a lifestyle off benefits [sic.] and actually off conditionality.”
Clearly, none of these situations are ones of choice.  Nobody chooses to be incapacitated for work, the majority of lone parents are not even single, let alone impoverished, out of choice.  The self-employed example is an interesting one, because it puts such a porky pie to this rhetoric of risk.

Being a creative type, I've known many self-employed people on very low incomes. I've come across three categories of circumstances:
  • People who are earning a very small amount, but have other support, such as a decent pension, a high-earning spouse or financial support from other family. Sometimes these people are hobbyists who produce more steampunk tea-cosies than they can give away, some are pursuing a lifelong dream and others are just pleased to earn a few quid commission on tupperwear or sex-toys.
The risks these people take are highly variable, but they're not close to needing benefits.
  • People on benefits who are earning such a small amount that they are only able to reduce the amount they claim on benefits, but are working hard with a view to becoming completely free of benefits at some time in the future.
  • People who are earning just enough to stay off benefits for now.  I know these people include at least one of the Where's the Benefit? gang and what they have achieved is pretty amazing.
These second two categories of people are all major risk-takers.  Having helped close friends with the paperwork in these circumstances and having done small amounts of paid writing work myself, I can tell you that any unconventional work, including self-employment, does not mix with the benefits system; until you have done the work, been paid and filled in multiple forms, it is sometimes impossible to know
  • how much form-filling is necessary (after writing one piece, I endured a six month paper trail with the DWP, taking up far more time and energy than the work itself.)
  • whether you're going to inadvertently break a rule and get into trouble.
  • whether your capacity for a little work is going to bring you under suspicion for fraud. 
  • at what point you'll lose your benefits.
  • how difficult it could be to get back on benefits, if you lose them and need them again.
Meanwhile, the benefits system is much stricter - and less sensible - than the tax system when it comes to expenses and overheads. Often, money is counted as earnings if it passes through your hands, even if you have to spend it to keep your business going. Some of this stuff actually looks like it might improve with the new systems, but it's still a mess now and it always has been. 

So why would anyone bother?  Well, only because they can't do conventional work, but they have the skills and just enough energy to do something. These are usually disabled people, or those caring for disabled people, who have much less time or energy, or much less reliable time and energy, than they'd need to work even part time, employed by someone else.

Providing that there is work available, it would surely be far easier and far less of a risk to do conventional work, if one has the capacity to do so. The idea even benefits claimants who are actively working, thus reducing the amount of benefits they claim and contributing to the economy, can be described as lazy or cautious, is completely ludicrous.

Freud said,
"...people who are poorer should be prepared to take the biggest risks, they’ve got least to lose."
This is nonsense. This is like saying we should recruit soldiers from people who are sick and have shortened life expectancies, because they have less to lose - what's a limb here or there if you're heart's going to give out any minute?  We need our soldiers to be healthy because, as well as being better equipped for the job, they are unlikely to lose as much - they are much less likely to be killed than someone with pre-existing ill health. Similarly, in terms of major financial risk-taking, that's entirely for the likes of Freud and his peers, who have a soft plump pillow of inherited cash and savings beneath them.

When people on benefits are afraid of taking work, it is because they are afraid of being left with literally no income or savings. Of being left homeless and hungry, with absolutely nothing. Sometimes even nothing minus debt.

And finally, on the subject of terrible analogies, Freud defends his massive personal privilege that some  consider disqualifies a person to pontificate about the behaviour of those so very much less fortunate than themselves.
"I think you don’t have to be the corpse to go to a funeral, which is the implied criticism there."
This is true, but you're more likely to be welcome if your understanding of the world hasn't filled you with complete contempt for the deceased and his loved ones.

It helps if you have some understanding of mortality.

Tuesday 20 November 2012

Third Harrington review of the Work Capability Assessment

The third independent review of the Work Capability Assessment [PDF] by Professor Harrington has been released today. I am not particularly impressed with it, particularly Harrington's criticism of those who have campaigned against the current welfare reform.
The WCA continues to be portrayed in an extremely negative light, often fuelled by adverse media coverage, representative groups and political points scoring. Whilst the Review continues to hear examples of individuals who have been poorly treated by the WCA process, DWP can be reasonably pleased with what they have achieved. Some recognition of the considerable work to date would give a more balanced picture and DWP needs to be more proactive in communicating this. [Emphasis mine.]
I don't know what world Harrington inhabits but that "adverse media coverage" was brought about by relentless campaigning from those who are directly affected in horrendous ways - "representative groups" and the only "political points scoring" we've made has been nearly universally against all three main parties. We have had a very hard time getting people within those parties to see the problem at all. Calling for the DWP to get better PR is not the solution.

Right in the foreward I was struck by his comments about tribunal judges.
Recommendations on the training of professionals in DWP Operations, Atos Healthcare and the Tribunals have produced some limited progress. In particular, it is regrettable that the First-tier Tribunal has effectively distanced itself from the rest of the WCA. Feedback from the Judges to the Decision Makers has, at last, started in a rudimentary way. However, much, much more is needed if we are to see a real dialogue between the Judges and the Decision Makers. This must happen on cases where there is a difference of opinion on what category is appropriate for that case based on the same set of evidence. For the First-tier Tribunal to suggest that the WCA Independent Review has no remit to consider the appeal stage of the process is illogical and untenable in my view. [Emphasis mine.]
Harrington is calling for feedback from tribunal judges to the Atos assessors and the DWP decision makers over why they reached different decisions to those made by the DWP. However the comments that Robert Devereux DWP private secretary made before the Public Accounts Committee on the 19th appear to be directly quoting the paragraph above out of context and instead criticised the tribunal judges for reaching a different decision. His thought appears to be that if looking at the same evidence then the decision should also be the same, without considering that the original decision makers might have been wrong. What Devereux and Harrington both seem to have missed is that Atos and the DWP have often failed to look at the evidence at all and the face-to-face assessment is not likely to find anything that strays from the Lima computer system's checklist. There have been many cases where Atos and DWP staff have refused to look at evidence from healthcare professionals or refused to wait for evidence, and many more cases where evidence has been lost in the system somewhere between health care professional and decision maker.

One of Harrington's conclusions stood out to me:
The Work Capability Assessment (WCA) remains a valid concept for assessing benefit claimants’ eligibility for Employment and Support Allowance (ESA). Whilst the WCA continues to garner considerable – and sometimes, but not always, justifiable – criticism the Independent Reviewer has not seen or heard any compelling arguments or evidence that the whole system should be scrapped. Instead it needs to be made fairer and more effective by improving both the process and the technical descriptors used to assess eligibility.
I know a lot of people would disagree with that, but I think this is a lost battle and the public will continue to support assessments in this way. I took a little more hope from his recognition that we do need change.
A number of the major charities in this year’s call for evidence say that although they have seen some change for the better, it is disappointingly incomplete in coverage and depth. I agree with them. Changing such a large and complex process and such a controversial assessment takes time – it is happening.

So far as the descriptors are concerned, progress has been positive but slow. We are close to a new and much improved set of provisions for cancer treatment. For the mental, intellectual and cognitive conditions descriptors and for the fluctuating condition descriptors, work is underway for a formal review of new proposals from a number of charities to compare them with the existing descriptors. This work will continue into 2013 and I have been asked to chair the expert independent steering group overseeing the quality and validity of the evidence-based review. It is important to wait for the results of this before rushing to conclusions about how to change the descriptors.
We know from earlier this year that the DWP have been testing new descriptors and I hope that there will be progress on these so that serious conditions affecting ability to function which are currently missed will be noted in future. Also note in the paragraph above that Harrington is to continue working with the DWP on this aspect.

I am concerned that cancer treatment has been singled out as needing special attention once again. Cancer is very bad and unpleasant and everyone knows someone who has had it, that's why it is politically dangerous to send patients on chemotherapy to work. However many other conditions are equally serious and yet not so media-friendly and are therefore treated differently. The Work Capability Assessment is supposed to be about assessing the impact of the condition on ability to function, not what treatment is being received.


Harrington made a number of recommendations to the DWP. I am pleased that the first is for decision makers to consider the need for further documentary evidence. Whether they will do this or not is another question but as I said before the gathering of evidence is a big problem.
It is essential that all relevant medical and allied evidence about the claimant is available to the DWP Decision Maker at the earliest possible stage in the assessment process. If this can be achieved then Tribunals will be based on Judges and Medical Members considering the same body of evidence as the Decision Maker did.
Less pleasing is his second recommendation:
DWP Operations need to find an appropriate balance between better quality decisions that are carefully considered and ‘right first time’ and the achievement of appropriate benchmarks at a local level.
Now I could be wrong here, but that looks very much like a target.

The third recommendation is that the DWP should try to get more feedback from tribunals as to why decisions are overturned. This seems reasonable as it could affect change in the decisions made to start with. The fourth recommendation is that the DWP must highlight improvements, and be open about problems. As I said before, better PR for the DWP is not the answer. I'm open to hearing about improvements made but not if they are used to distract from problems that remain unsolved.

I'll leave you with this comment from Harrington.
Considerable disquiet remains, and this cannot be ignored
You're damn right it can't!

Monday 12 November 2012

Guest post: Some conditions are more equal than others

This is a guest post from @DocHackenbush.

Black and white cartoon. Caption across the top says 'why do cancer patients seem to get cut more slack than other sick and disabled people?' There are then 4 monsters. On the left is 'cancer' who looks a bit like a snail with a soft shell with tentacles. Then there's two-headed 'MS'. Next is 'EDS' who looks a bit like a rasher of bacon with a face and hirsutism. Finally is something that looks a bit like a dildo with one eye and a floor level mouth. This one is wearing a name badge saying 'Hi. My name is Cronhns.' MS is saying 'Wow! Can I have your autograph? How do we get to be as famous as you?' EDS says '*mutters*' and cancer responds with 'try killing a few more celebrities!'

The inspiration for this cartoon came from the ruling that people receiving treatment for cancer are partially exempt from the one year time limit on receiving Contributory Employment Support Allowance (cESA) in the Work Related Activity Group. If you are getting treatment for your cancer, your one year countdown begins when your treatment ends. If you have anything else, tough cheddar - your countdown starts when your claim starts, regardless of what treatments you are currently undergoing.

As someone with a cancer of their very own, you'd think that was something I could really get behind, right? Well here's the thing - cancers come in all shapes, sizes and flavours and mine, on the whole, is more manageable than most; my main symptoms being skin lesions and fatigue. I know many people who live with illnesses and conditions much more detrimental to leading a normal life that will have their entitlement to benefits withdrawn after only twelve months. Why should the public profile of my disease mean that I get longer on ESA? Don't get me wrong, Cancer is a horrible, horrible bastard of an illness, but then again so is Ehlers Danlos Syndrome, Multiple Sclerosis, ME, Crohn's Disease or any number of others I could name, the treatments for managing which are often considerably more debilitating.

Should these people get shafted because their disease or condition or whatever hasn't had any telethons held in their honour recently? Sadly this government seems to think they should.

The People's Review of the Work Capability Assessment #realWCA

New report highlights failures of Work Capability Assessment as Spartacus campaign awaits Harrington’s final review

A new report from the Spartacus campaign today (Monday 12 November) analyses the failures of the Government’s Work Capability Assessment and the Employment & Support Allowance system, which is supposed to support people who are too sick or disabled to work.

It also warns that disabled people are at risk because of the government’s refusal to consider a ‘real world’ test – where part of the test would take into account the real barriers to employment.

The report, ‘The People’s Review of the Work Capability Assessment’, includes examples of people who have been told they are fit for work, including:

  • Someone with no short term memory mechanism
  • A man with a terminal brain tumour
  • An incontinent disabled man who is both blind and deaf

Other examples of claimants’ experiences include a man whose benefits were stopped for failing to return the necessary forms, despite his wife informing the Department for Work and Pensions (DWP) that he was in a coma; and a man who died 48 hours after filling in his questionnaire - after informing everyone of his death his wife received a call 3 months later asking him to come in for his assessment.

Overall the report highlights stories of more than 70 people who have been inappropriately assessed, forced to go to tribunal, felt humiliated or treated inappropriately. It comes prior to the publication of the final review of the Work Capability Assessment by Professor Harrington, who steps down as advisor to the DWP this month, and whose resignation was announced in July, just days after the broadcast of two TV documentaries exposing the reality of claimants’ experience of the assessment process.

The report also highlights serious concerns about the number of people who have died after being told by the DWP they were ‘fit for work’ or have taken their own lives in circumstances where applying for ESA and going through the WCA appear to be factors in their deaths.

Professor Peter Beresford OBE, professor of social policy at Brunel University and chair of Shaping Our Lives, said:

“The work capability assessment is unreliable and unhelpful, as well as being arbitrary and cruel... No-one – not the doctors who make the assessment decisions, nor Atos which has responsibility for providing assessments, nor the Department of Work and Pensions which commissioned them – takes responsibility for the problems and failures in the system. It’s a perfect storm of irresponsibility and unaccountability.”

The report includes an analysis of the position of a number of professional and regulatory organisations on the WCA, including the British Medical Association, the Royal College of Nursing, the General Medical Council, the National Audit Office and the Citizens Advice Bureau, as well as Government statements and background information on Atos, the company employed to carry out the assessments.

The report’s author added:

These issues are a matter of survival for people living with illness and disability. It is unacceptable that in 21st century Britain vulnerable people are being treated so appallingly. We hope The People’s Review will spur the Government into prompt and concrete action on the failures of the WCA. Radical change is needed - and it is needed now. Whilst there has been some acknowledgement of the problems following Professor Harrington‘s previous Reviews, our evidence from those at the sharp end of the process, including of the high rate of successful appeals and the huge backlog of unheard appeals, shows the whole system is still failing badly. The cost to the taxpayer is enormous and the cost to those going through it goes way beyond money. In the meantime, sick and disabled people continue to be severely affected by what they’ve experienced, and terrified of what the future holds.

The new report is available from: