If you can only walk twenty metres you'll get no help

When PIP starts to replace Disability Living Allowance next year anyone who can walk just twenty metres will not qualify for help with mobility. Twenty metres is less than the distance most of the disabled parking bays at my local Tesco are from the door. It's really not much. Hundreds of thousands of people will no longer get a mobility allowance and as a result will no longer be eligible to lease a Motability car. One day it might be you that needs this.

The government has also left out the phrase "safely, reliably, repeatedly and in a timely manner" from the PIP regulations. This means that if a person can do something just once, or can push through pain to do it, they might not get help and can't even challenge it at tribunal.

These are just two of the largest problems. Please write to your MP and ask them to fix this urgently. I can't stress enough how urgent this is. You can contact your MP at Write To Them

There is lots more information at We Are Spartacus.

Please also sign the (Stop the) War On Welfare petition which is calling for government to do a cumulative impact assessment on welfare reform. A great many changes are being made all at once and yet the government have not stopped to consider how they will affect people when taken all together.

This is the message that I sent to my MP, you can use mine as a starting point for your own if you are stuck. Remember that MPs pay more attention to unique messages.

Dear xxxxxxx,

I am writing to you about the new Personal Independence Payments (PIP) which will soon replace DLA. It has emerged following the publication of the PIP regulations last week that there are many problems with the regulations, two of which are extremely serious.

Under PIP a person who can walk just 20 metres will not be eligible for the mobility component of PIP. That is an astonishingly short distance. Even the closer disabled parking bays at my local Tesco are twenty metres from the entrance. This decision will deny mobility allowance to hundreds of thousands of people who rely on it, and an estimated 100,000 people will lose their Motability cars in the first year alone as a result.

I also note with alarm that the phrase "safely, reliably, repeatedly and in a timely manner" has not been included in the regulations. This phrasing is extremely important, since a person may be able to do something once but then not again for hours - effectively meaning that the activity cannot be done, but PIP will take no account of that.

Government ministers claim that the vulnerable will be protected. I hope that you can see why I am so concerned about PIP and how this will leave people trapped in their homes without transport and denied support for even the bare minimum of activities that they must perform. Please can you give me your assurance that these regulations will be amended so that disabled people can continue with their lives.

Sincerely,

[Name and address]

A Testing Journey

I have my Work Capability Assessment (WCA) on Sunday.

Yes, you read that right: A Sunday. And, yes, 2 days before Christmas. I presume Atos are working weekends in order to claim overtime expenses from the DWP.

I've read news reports about people getting all precious and going to the press saying "why would they want to assess me? Look at me... I'm clearly not fit for work." Erm... that's the point of the assessment: To look at you.

But there was something in the envelope that made my jaw drop in disbelief: A suggested journey plan.

"What's wrong with that? Surely that's Atos being helpful in giving you directions to their centre..."

They told me to take a route that's not wheelchair accessible.

First of all they tell me to walk 16 minutes to Kings Cross tube station. I'm not going to get pedantic about that; I talk of going for "a walk" despite being a wheelchair user. They tell me to take the Circle Line to Edgware Road and then walk another 9 minutes to the testing centre.

Edgware Road has no wheelchair access. In fact the closest wheelchair accessible tube station is Kings Cross.

You have to remember this isn't just a random travel leaflet shoved in with the letter; this is a tailor made journey plan for someone coming from my address to the testing centre at that specific date and time.

Atos haven't seen me in 4.5 years. It's possible that some of my health problems may have changed. But one thing that has not, and will never get any better is my lifelong mobility impairment.

Atos and the DWP know I'm a wheelchair user because of an incurable impairment. My impairment's incurableness is the reason I have an indefinite DLA award.

Further proof that Atos believe in miracles.

Well over 100,000 to lose Motability vehicles under draconian new rules

This is a guest post by @theyoungjane and originally appeared here.

When I blogged on this topic back in January, I predicted thousands of disabled people would lose their Motability vehicles under the Government’s draft criteria for Personal Independence Payment (PIP), set to replace Disability Living Allowance (DLA) under the Welfare Reform Act. Yesterday, the Government published the final version of the criteria and the reality is far, far worse than we could have imagined.

Many consultation responses on the draft criteria complained that the descriptors for Activity 12 (Activity 11 in the draft), addressing physical difficulties in moving around, were unclear and confusing. We hoped they would be clarified; in particular, we expected clarification that being unable to walk more than 50 metres would qualify claimants for the enhanced mobility component and the Motability scheme. But we’re stunned by the decision that to qualify for Motability, a claimant needs to be unable to walk more than 20 metres – a far shorter distance.

This has massive repercussions for the majority of Motability customers who, whilst they might be able to walk 20 metres, do nonetheless have very significant difficulties getting around. Under the second draft criteria, published in January, DWP predicted that 27% fewer working age people would be eligible for the scheme once PIP was fully rolled out. It is now clear from the Government’s own figures that 42% fewer disabled people of working age will be eligible for the Motability scheme once PIP is fully rolled out than would have been eligible had DLA continued unchanged (see Personal Independence Payment: Reassessment and Impacts, published 13 December 2012).

So what will this mean for disabled people? Only those with the greatest difficulty getting around, mainly those who use a wheelchair most of the time, will qualify for the Motability scheme on grounds of physical impairment. Huge numbers of disabled people with serious musculo-skeletal conditions, serious heart conditions or respiratory difficulties, cerebral palsy, neurological conditions such as MS and ME and many, many more will no longer benefit from the scheme. Their car will simply be taken away before they have a chance to appeal.

Those who no longer qualify for Motability are likely to be unable to get to work, attend medical appointments, visit friends, go shopping or, indeed, have much of a life at all. More than a hundred thousand people, who were previously able to get out and about independently, will find themselves staring at four walls; they will need more support for essential journeys, such as medical appointments, and their quality of life will be decimated. When visiting a small supermarket, 20 metres doesn’t even get you from the parking space to the entrance, never mind around the supermarket. In fact, lots of people have to walk more than 20 metres from their car to their front door when they get home again!

Disabled people who live in rural areas will be hurt the most. What little public transport is available is less likely to be accessible. There may be no local shops, no GP or pharmacy nearby; asking for a lift to the GP means asking someone to commit a considerable part of their day to drive a considerable distance.

Then there’s the knock-on effect on the UK car industry and the wider economy. In our report, Reversing from Recovery, published in June this year, the Spartacus network used the DWP’s own projections under the draft criteria to demonstrate the knock-on effect on the car industry and wider economy once all DLA claimants of working age had been migrated to PIP. However, under the DWP’s revised projections of the number of claimants eligible for Motability, under the final PIP criteria, the effect on the car industry and economy will be much more serious:

• the car industry could lose nearly 50,000 new car sales a year (we predicted a loss of 31,450 sales under earlier projections),
• more than 5,500 jobs could be lost from the economy (we predicted a loss of just over 3,500 jobs under earlier projections)
• the Treasury could lose £126 million in tax receipts from motor-related industries (we predicted a loss of £79 million under earlier projections),

as a result of fewer claimants using the Motability scheme by the time PIP has been fully rolled out. And of course, if disabled people lose their jobs because they can no longer get to work, they will claim more in benefits and pay less tax. All in all, the original estimate of the effect on the economy was bad enough, but these figures are far worse.

For some, there is one slight cause for encouragement: the Government has listened to concerns about the speed of implementation and the necessity for evaluation and revised its timetable. DLA claimants with indefinite awards will only start to be reassessed from October 2015 – but newer claimants are more likely to have been given time-limited awards and therefore won’t benefit. And without extra assurances from either side of the political divide, we have to assume that the criteria published today will eventually affect all DLA claimants, albeit with implementation taking place over a longer timetable.

Hundreds of thousands of disabled people whose cars are vital to their life and health stand to lose virtually everything. No car = no independence, no job, no salary (with a consequent risk of homelessness), no social life plus increased dependence on family members, health and social care services and other benefits to survive. This begs the question: how does this cut help disabled people to fulfill the social contract of being part of society and contributing by work, volunteering or being part of their community? Even those held up by the Minister for Disabled People, Esther McVey, as inspirational role models will have their lives cruelly and unnecessarily restricted.

The Government has clearly paid little heed to the impact of this ‘reform’ on disabled people’s human rights. There is no doubt that the PIP criteria for people with a physical difficulty in getting around is retrogressive under the United Nations Convention on the Rights of Persons with Disabilities, ratified by the UK in 2009. The proposals seriously compromise disabled people’s human rights under several Articles of the Convention, including, among others, the right to live independently and to be included in the community (Article 19), and the right to personal mobility, specifically to….’ personal mobility with the greatest possible independence’ (Article 20).

This attack on the lives of disabled people who have difficulty getting around is NOT a price worth paying. MPs on both sides of the House of Commons should vote these regulations down. The Government can, and must, do much better than this, if it really wants to build on the legacy of the Paralympics.

                                       *************************************

* To get the enhanced mobility component of PIP, you need to accrue 12 points from either the first or second mobility activity in Part 3 of Schedule 1 of the PIP regulations. The first activity (Activity 11 in other DWP documents) covers non-physical difficulties with planning or following a journey and the second activity (Activity 12 in other DWP documents) covers physical difficulties in getting around. To get 12 points from the second activity alone, you have to be unable to stand then move more than 20 metres. If you have no difficulties with planning or following a journey and you can walk more than 20 metres, you will not be awarded the enhanced mobility component and you will not be eligible for the Motability scheme.

International Day of Persons With Disabilities

Today is the UN's International Day of Persons With Disabilities. The theme is "Removing barriers to create an inclusive and accessible society for all." Our government are celebrating the day by preparing to send sick and disabled people on unlimited unpaid "work experience". In a way this is removing barriers - now sick and disabled people can be subject to the same punitive measures that unemployed able-bodied people are - but I don't think this is what was meant.

The DWP press release has made an effort to deny that this is mandatory or punitive, but just a few words later explains that anyone who refuses to go on such unpaid work experience (or is unable to but ignored) will be subject to Mandatory Work Activity instead and failing that, will lose the majority of their ESA benefit. It would be nice to think that MWA is only used in extreme cases but in practice anyone and everyone can be sent for this mandatory labour without cause. My own brother is one such example.

This measure applies only to people in the Work Related Activity Group (WRAG) and those in the Support Group are safe for now but people in the WRAG are NOT fit for work, even ignoring the fact that so many people are wrongly assigned to the WRAG when they should be in the Support Group. They are expected to be able to return to work, with help, at some unspecified point in the future. This new policy of forcing them on to The Work Programme, work experience and Mandatory Work Activity (Unpaid labour) completely ignores this and will cause harm, suffering and even death.

Image by @dochackenbush

Disability Workfare – Even Worse Than We Feared

With Disability Workfare due to kick in on Monday, DWP chose the end of the week to throw out their press-release, clearly trying to restrict the ability of anyone to challenge it in any significant manner or even engage in a meaningful debate. The press-release claims that no disabled person will be mandated onto work experience, but in the very next sentence starts talking about mandating us onto subtly different Mandatory Work placements under threat of sanction. So if you turn down work experience it isn't difficult to guess what will follow.

We now know that from Monday contractors from the likes of A4E will be able to mandate a disabled person onto indefinite Mandatory Work Placements, and while the Work Programme Providers are reluctant to elaborate, and DWP claim otherwise, it is clear much of this will be with private sector companies. Of course with contractor bonus payments dependent on showing progress, and contractors being given targets for sanctioning people on the Work Programme (a fact revealed by DWP’s own research), the absolute certainty is that the immediate interests of individual contractors will be given precedence over the interests of the disabled people forced into their absolute control.

Chillingly the press-release states that Mandatory Work Placement will be used in “circumstances where someone refuses to take reasonable steps to address a barrier which is stopping them working.” So the likelihood is that we will see Mandatory Work Placements being used as a club to force disabled people into treatments some medically unqualified A4E or Serco contractor desperate to get his monthly bonus thinks is appropriate, no matter whether that is the actual case. As an example, I have major back problems, for most people standard physiotherapy is an appropriate part of treatment for back issues, and we have seen suggestions of linking the Work Programme and physio in the past, but in my case my back problems are linked to my Hypermobility Syndrome, and the stretching aspects of normal physio would be actively damaging, but is that a nuance that a pressured A4E hack is going to understand, or care about? There are plenty of other examples of damaging treatments out there, for instance ME and exercise, which even has a powerful lobby of UK doctors backing it, no matter that the rest of the medical world disagrees with them.

The press-release even resorts to outright lying when it states “People who are too sick or disabled to work are placed in the support group for ESA”. All people in receipt of ESA have been classified as too sick to work by ATOS following a Work Capability Assessment and are placed in both the Support Group, and in the Work Related Activity Group, which is precisely the group that mandatory workfare will now apply to. The difference between the two groups is that someone in WRAG may, and only may, become able to work at some indefinite point in the future, and that point will often be years away, if at all (a point DWP are incredibly reluctant to acknowledge). Additionally, as Labour’s Shadow Employment Secretary, Stephen Timms, has pointed out, many people are being wrongly placed by ATOS into the WRAG when they should in fact be in Support Group. It is likely that this new policy will drive the already disastrous rate of WCA appeals even higher.

Indeed the prospects of disability workfare are so bad that even the major disability charities, who have clung to workfare through the worst of the protests against it, are now dropping it like a stinking corpse. The British Heart Foundation have already severed all ties, Cancer Research UK will pull out on the 1^st January and Scope are urgently reviewing their position.

One aspect of disability workfare that seems not to have been explored is that there is going to be a huge issue around the legal concept of duty of care (i.e. the requirement to protect people from harm) for anyone taking on someone from ESA under a Mandatory Work Placement. People on ESA have by definition been found not currently fit for work, while duty of care applies to anyone an employer is in a supervisory position over (or to customers or even passers-by), it is not necessary for them to be the disabled person's employer in terms of law for duty of care to apply. It may well be the case that taking on a disabled person under mandatory workfare will violate the terms of their employer liability insurance, leaving them directly liable.

The press-release also contains the bizarre assertion that not having had many jobs is a valid reason for subjecting a disabled person to mandatory workfare. Speaking as a disabled person, I have only ever had one job, so would presumably be subject to this. Of course that one job was for 22 years and revolved around developing flight control systems to stop aircraft falling out of the sky; so maybe not having had many jobs isn’t the career weakness DWP claim it is. For that matter the Civil Service Fast Track typically recruits direct from university, so it is likely that the authors of the press-release have themselves only had one job….

(Amended to refer to the indefinite Mandatory Work Placements rather than Mandatory Work Activity, which is apparently limited to 4 weeks)

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....

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 3^rd 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 3^rd December, the International Day of Persons with a Disability.

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.

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.

Recommendations

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!

Guest post: Some conditions are more equal than others

This is a guest post from @DocHackenbush.

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: http://wearespartacus.org.uk/wca-peoples-review.

Misleading Stories

Esther McVey, our new minister "for" disabled people, claims in this BBC article that:

there were a lot of misleading stories about the impact of welfare reforms on disabled people.

And

too often under the current system we are wasting money on overpayments where people's conditions have changed, with £630m a year on DLA alone.

According to these official DWP figures on page 14 the total annual overpayment is £240 million, less than half of McVey's claim.

Of that £240 million, only £60 million is lost to fraud. If your circumstances change and you fail to notify the DWP that is benefit fraud.

The amount of overpayments because someone's condition has changed has got to be less than £60 million a year because that £60m includes not only people whose condition has changed, but the outright false claimers too. Now; who exactly is it spinning misleading stories?

I once calculated that reassessing all DLA claimants annually would cost around £247,456,000. £247 million on reassessments is a hell of a lot more "taxpayers money" than losing less than £60m a year to fraud.

Then there's the fact that a hell of a lot of people don't get indefinite DLA awards. People with conditions that might get better get limited term awards. It's only people with incurable conditions like mine that get indefinite awards. Declan Gaffney once explained how at any given time there will always appear to be a greater percentage of people with indefinite awards, but many, many people get limited term DLA and the implication that everyone's got a lifetime award for a temporary condition is just a tall tale. Or a "misleading story".

If they don't know how can we know?

I was at a disability conference today.  Amongst the various different speakers there were two staff members from local branches of jobcentre plus.  They'd been asked to talk about the new Personal Independence Payment or PIP which will be replacing DLA.

I was sitting at the back with the vice chair of a disability group which is very influential within Oxfordshire.  We'd like to think that we're both pretty clued up on the changes that will be coming in the next year or so.  Or at least as clued up as it's possible to be when the exact details of the changes still haven't been decided and/or announced.

Within the first five minutes of that talk we both went "that's not right."  Because not only was the talk highlighting just how badly the changes have been thought out, it was also becoming clear that the speakers understanding of the changes didn't match reality. 

PIP comes in next April.  According to the speaker existing DLA claimants will then be written too to be offered the chance to apply for PIP instead if they are likely to be better off or remain on DLA until their award ends if thats what they'd be better off on.  I have an indefinite award of DLA (I have cerebral palsy - a life long condition that is incurable and doesn't improve) and the way the talk was given it appeared that I have the choice to remain on DLA indefinitely and never move to PIP.  If that was a real choice it's the one I'd make.

The reality of the matter is:  PIP comes in next April for new claimants and reassessments.  She's right about that.
Some DLA claimants may at that point chose to claim to PIP. She's right about that.

 But starting in October next year all DLA claimants regardless of whether their award is time limited or indefinite will be reassessed on a rolling basis until everyone is moved to PIP.  There is no consideration of which benefit suits people better or choice in the matter.  Just like the Incapacity Benefit to ESA migration this is forced upon us.  That wasn't clear in that talk.

I went to speak to the them after and asked for clarification of the situation with an indefinite DLA award.  And after checking their notes they agreed that it has no effect on PIP migration.  I got correct information.  But  we have a room of in the region of 50 disabled people who were given unclear information or which is could even be argued is wrong. 

Changes to benefits mean it's possible fines of up to £50 a time could be levied against people who make mistakes or omit information when filling out benefit forms.  If staff on the front line of benefits services don't know the information that's needed how can the disabled people whose very lives it affects be expected to know?

It's a shame each person at that event couldn't levy the same fine against the jobcentre staff for failing to make their talk clear.  We could use it to fund our next event - and to support each other through these changes in a way that doesn't seem available at the moment.

Poor and disabled? Tories think you're a troublemaker

I wrote yesterday about the plans by Iain Duncan Smith to restrict what "troubled families" can spend benefits on through the use of smart cards, and why this is a terrible idea for many reasons. It's even worse than that though. The plan is to get councils to send "troubleshooters" to confront these families and force them to conform to the expectations of the government. The Independent and BBC News both have more details.

What I didn't write about yesterday is the definition that the government are using for troubled family, and that definition is very bad indeed. The Conservative Party have turned to research by the Economic and Social Research Council (ESRC) to decide who might be "troubled". The government have decided that a troubled family is one that meets five out of seven criteria:

• Low income
• No one in the family who is working
• Poor housing
• Parents who have no qualifications
• The mother has a mental health problem
• One parent has a long-standing illness or disability
• Unable to afford basics, including food and clothes.

Government Lies

In fact these criteria boil down to one thing: poverty. And the ESRC have come right out and stated that the government have basically made up their own minds about what it all means. They said "In the term 'troubled families' it deliberately conflates families experiencing multiple disadvantage and families that cause trouble." The definition that the government are using does not mention child truancy, criminal records, ASBOs, police call outs, drug abuse, or any of the other things that they claim to be addressing.

It is quite likely that none of these conditions are under the control of the family themselves, and yet under government plans they can be penalised for it. Even worse than that, though, is the presence of illness, disability and mental health on that list. These are definitely not under the control of the people involved, but it is clear from what Eric Pickles told The Independent that the government do blame these people. Pickles said that these families must end an "it's not my fault" culture of excuses and must stop avoiding taking responsibility for their own lives. He said that there would be "less understanding" and a tougher approach.

Victim Blaming

This is blaming the victim, plain and simple. It fits right in with the Bio-Psychosocial model of disability that the government have adopted after decades of being advised by insurance company UNUM. The model basically says that disability is all in the mind of the disabled person and they only need to adopt a better attitude to overcome barriers to work and other activities. This is the model that has seen so many people judged fit for work in their Work Capability Assessment by Atos, and now we see it being used to clamp down on poor people who the Tories find distasteful. Instead of helping them, which costs money, they are punishing them because they don't fit their Victorian ideal of "deserving poor".

120,000 troubled families could be legally banned from spending benefits on alcohol and tobacco [Telegraph]
Problem families told - 'Stop blaming others' [The Independent]
Councils back troubled families scheme [BBC News]

This blog post first appeared at A Latent Existence.

No alcohol or tobacco

"No alcohol or tobacco"

That's what you get printed on vouchers for emergency food supplies  from Co-op and Tesco given out by a charity where I live. And now, it seems, it could apply to all benefits paid to "120,000 problem families" if Iain Duncan Smith has his way. According to The Telegraph:

Iain Duncan Smith has asked his officials to see if so-called ‘problem’ families should receive their welfare payments on smart cards, rather than in cash. 

The cards would only be able to pay for “priority” items such as food, housing, clothing, education and health care. 

The Work and Pensions secretary wants to stop parents who are alcoholics or who are on drugs from using welfare payments to fuel their addictions. 

The team of civil servants in his department have been asked to come up with proposals by the end of this month.

We can find the government's definition of these 120,000 "problem families" in an article from The Independent back in June:

Under government criteria, a troubled family is one that meets five out of seven criteria: having a low income, no one in the family who is working, poor housing, parents who have no qualifications, where the mother has a mental health problem, one parent has a long-standing illness or disability, and where the family is unable to afford basics, including food and clothes.

There are many problems with this definition but it can be summarised thusly:

@spoonydoc @latentexistence So basically anyone without the good manners to be born healthy, rich and privileged.
— Jonathan Hume (@IamMrJ) October 13, 2012

The Problems

Leaving aside for a moment the morality of dictating what people can buy, the first problem I can see with this scheme is that it will favour big businesses and supermarkets and leave small local shops and markets by the wayside. There will be costs involved in accepting these payment cards as well, I'm sure, as checks to make sure that shops honour the restrictions. Markets are usually cash only which would bar people from getting cheap local fresh fruit and vegetables.

The second problem is related; because of barriers to accepting the smart cards or to restrictions on what can be purchased people will be barred from shopping around for cheaper food and some will be prevented from purchasing specialist items that are required for their health but are not prescribed or considered by government to be necessary.

The third problem, and possibly the biggest problem I see is that sick or disabled people often have no choice in where they shop. The limited ability to travel or to carry things can mean that the nearest shop is the only one they can use. If small shops are not able to accept these cards then there may be no other source of food open to these people.

@philrandal @latentexistence Many social services insist you buy your shopping online. Won't provide carers to help. #nojoinedupthinking
— Spoonydoc (@Spoonydoc) October 13, 2012

Many sick or disabled people order their shopping over the internet; in fact this is often a requirement since care plans have written internet shopping in so as to cut costs of providing carers for shopping trips. This will probably be less of a problem since supermarkets will accept cards but the question remains as to whether or not they will accept them over the internet.

Breaking Addiction

If the idea of this scheme is as reported, to stop feeding addiction, then it will be pointless anyway. Addiction is powerful and removing funds doesn't mean that people won't be addicted any more. If someone is dependant on nicotine or alcohol then providing benefits on a restricted smart code will not prevent them from obtaining these things if they have to. It will lead to a black market - to bartering of valuable food items for cigarettes and alcohol, or to selling of restricted funds for much less than the real value resulting in less money for the benefit recipient. It could well lead to theft to feed the addiction. It will certainly drive some into prostitution. Drug dependency drives people to desperate measures and they won't always be rational.

Pleasure and Entertainment

Finally we must ask why society deems it acceptable to tell those who are least fortunate that they must not have any pleasures or enjoyment. It seems that those who must rely on benefits are resented and even envied for what they have. Some is illogical; for example Motability cars are not a luxury, they are required for people who cannot walk to get to medical appointments or to go shopping and the cars are leased not given. Internet connections may be the only way that some people can shop, communicate, pay bills, claim benefits or get support and yet some people still think that an internet connection is a luxury that those on benefits should not have. People who have TVs and perhaps TV subscriptions are resented, but for those who are forced to stay in the home by illness or have no funds to go out it may be the only thing to occupy their time. Should these people be forced to sit and stare at the wall for the rest of their lives? We seem to have broken the concept of national insurance. When a person who has worked and paid their dues becomes unemployed or unable to work and receives benefits they are resented for claiming benefits that they have been paying for while working. Must they too give up all pleasure in their lives?

The government hasn't addressed the reasons for smoking and drinking either, and it's not just about addiction. Smoking is an appetite suppressant  When food is expensive and income is so low parents often buy food for their children while smoking to mitigate their own hunger pangs. Alcohol is a pain killer and a sedative; like it or not for some people despite all of our medical advances alcohol may be the only way that they can have a few pain-free hours or relax enough to go to sleep.

Nanny State

Others have said this better than me:

If it incoveniences the middle classes, it's Nanny State. If it restricts those on benefits, it's 'for their own good': telegraph.co.uk/news/politics/…
— DickMandrake (@DickMandrake) October 13, 2012

Tories love to bitch and whine about the Nanny State but only if it affects them personally. The poor on the other hand…
— Hugo Z. Hackenbush (@DocHackenbush) October 13, 2012

…well they NEED nannying because they are too feckless and indolent to look after themselves. #torylogic
— Hugo Z. Hackenbush (@DocHackenbush) October 13, 2012

I shall end with this. Another extremely worrying element of this is what the cards would pay for:

"education and health care"

Now why would we need to pay for those?

Sources:
120,000 troubled families could be legally banned from spending benefits on alcohol and tobacco [Telegraph]
Problem families told - 'Stop blaming others' [The Independent]

This blog post first appeared at latentexistence.me.uk

Work Consultation

As many of you may remember, I ran a consultation on this blog some time ago, asking about work with long term fluctuating conditions or disability. It received over 250 responses.

Most people said they would like to "work" but that they either could not possibly now hope to work at all or that "work" as understood in our society simply does not suit or accommodate people with mental or physical illness.

However, five ideas came up time and time again :

1) Working from home - In 2012, many commented that it is ridiculous that businesses don't do more to allow people with illnesses or disabilities to work from home. With email, Skype and video conferencing, intranets and disability aids, it is perfectly possibly - indeed cheaper for many businesses - to facilitate home working.

However, the concept of "part time" or "full time" work as understood by most businesses does not fit with long term, unpredictable conditions. Any work would need to be utterly flexible, allowing the employee to dip in and out as their conditions require. Some might work well very early in the morning but be useless by midday. Some might be able to work for an hour or two here and there. Some need work that they can do at night when symptoms make sleep impossible. Any work would need to be utterly flexible over a 24 hour period.

It was felt that many had great experience and expertise from a lifetime of work that was now going to waste.

Employers were as much a barrier to work as the conditions that make work so difficult. Much more had to be done to include businesses in any conversation about taking on sick or disabled employees.

A "Work Bank" allowing businesses to upload overflow work from peak times (ie data entry, paralegal, accountancy, design, etc) was suggested. Business could plan for busier times, and those looking for flexible work could log on, accept certain hours or chunks of work and "bank" hours towards an annual work goal.

2) Micro Businesses - Many felt that they had developed new skills since becoming chronically ill. Hobbies had become slightly more, but the benefit system simply didn't allow them to develop these into viable businesses. As soon as they started to earn any small income from these talents, they found themselves unable to develop them as they simply weren't confident enough to lose all benefits.

Many suggested a kind of small business co-operative, where those living with long term conditions wanting to develop small businesses could come together in an area and support one another. Some might be better able to take product to market, some might have great marketing skills, yet others might be creative but unable to physically participate.

A combination of small micro-loans, Access to Work, networking with others in the same position, business support and flexibility within the benefit system might allow these businesses to flourish. Might. But crucially, there needs to be a totally new approach to benefits and work that allowed space and accepts that those with significant barriers to work need a much less punitive benefit system with much less draconian marginal tax rates and sanctions.

3) Education and training - Often, when someone becomes chronically ill or their impairment means that their current job is no longer viable, they are simply thrown on the scrapheap. Every study shows that once someone with an illness or disability is excluded from the job market, it is many times harder to re-enter.

A real commitment to find other suitable work within an existing company, supported by Access to Work, re-training or further education where appropriate could mean that someone never becomes excluded in the first place. This should be a partnership between the person with barriers to work, employers and government. All too often it has been a lonely path between a supportive employer and a willing worker, but the business simply cannot carry these costs alone. A little early intervention from Government could save years of benefit payments in the future.

4) "Falling off a cliff" - For decades our benefit system has become more and more punitive with tougher sanctions and limitations. The more dependent on social security someone is, the more impossible it becomes to consider any kind of paid work. Earning disregards (the amount you are allowed to earn before losing huge chunks of support) are ludicrous - often as little as £20 a week. This, sadly, is unlikely to improve significantly under Universal Credit.

Successive governments were seduced by the idea that those with long term illnesses simply needed to try harder, yet at every turn, politicians created their own barriers to work within the very system supposed to enable and encourage.

If someone stands to lose £6,000 a year in benefits by working, they need to know that they can earn at least that amount - reliably -before they could have the confidence to "go it alone". If someone will lose £10,000 or even more, yet could only ever reasonably expect or hope to earn a few thousand, many are excluded from even trying.

Politicians must accept that :

A) Some will simply never be able to "work" again at all.

B) Some will never be able to work again in the way society expects.

C) Some will always be excluded from the workplace despite a willingness - even eagerness to work.

ALL work should be valued. Anyone with a significant impairment should get extra support. If they have a diagnosis that means they will always face difficulties sustaining consistent work or face barriers to working, any work they feel they can do should be supported.

If someone can only ever manage a few hours from home, or can only manage to volunteer for a few hours here and there, that effort should be rewarded too. If we truly want a "good society" or a "big society" or "one nation" then we must value all contribution.

Politicians should consider a "volunteer credit" - available to those discussed above, carers, parents who support their children's school, or any other volunteer who is for whatever reason unable to "work" traditionally. The credit could boost final pension levels.

5) Despite all of the above, many with long term fluctuating conditions asked what on earth they were supposed to do during very bad times. All of the above suggestions meant that there would be times when they were simply unable to "work" and would be left high and dry with no salary. The "rollercoaster" effect had led many to give up on the idea of work at all. One minute self sufficient with some salary, the next plunged into poverty and fear, faced with a welfare system almost impossible to re-enter, the stress of re-applications, tribunals, appeals. Ironically, the more sanction we have developed, the less likely those with long term illnesses are to feel they could even attempt to work.

Those with long term conditions that will always face a significant barrier to work should see some of the tax they pay go towards a "lifetime fund" - heavily subsidised by the employer and Government (just as a pension is) that they can dip in and out of when illness makes it impossible to work. It might go back to the employer to help them cover long periods of illness. It might provide a small extra income during very difficult times. It might pay for adjustments when they become necessary. For the relatively small cost to the employee, business and government, it would be vastly cheaper over the long term in wasted benefit payments and recruitment or lost work hours.

Business have been largely absent from these discussions for too long. However, there appears to be a real appetite to change this, just a lack of suggestions on how. Tax incentives could encourage business to take on more people who suffer from long term conditions. Targets for employing a certain % of long term ill or disabled people are used effectively in many other developed countries. Government effort could be channelled much more into supporting business to set up schemes such as those detailed above, or "cover" business against times when the worker simply cannot work, rather than decades of social security support.

So, with all of this in mind, could I ask you again, to leave your comments below? If you would like to answer the questions below, it might help to add a little structure, but if not, feel free to say as little or as much as you like and of course, make any further suggestions you have.

Would any of these suggestions help you?

What is your condition, How long have you had it for?

Do you have other suggestions that you think could work?

When did you last work?

What did you do?

How long did you work for?

Why did you have to stop working?

Would you like to work, however little?

Are you now totally unable to work?

Does the benefit system hold you back from working?

What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.

Many thanks.

** Some have suggested that the list of questions at the end may make some reveal too much personal information. PLEASE don't feel pressured to reveal anything personal at all. 

Consulting?

I was sent a consultation document from my council this week. I'm always happy to take part in a consultation, as it shows that the council is doing what it is supposed to, and consulting on changes. But, unsurprisingly, in these days of Coalition cuts-that-kill, this consultation seemed to have something of a hidden agenda, beyond just asking for people's opinions.

The subject of this survey: Council Tax Benefit cuts. I'm not currently on Council Tax Benefit, but I have been in the past, and I'm sure I could find myself in a situation where I need to claim that benefit in the future. Any of us, at any time, could find ourselves in dire straits in this economy - disabled or not. The survey opens with a brief explanation about how they will ask questions about what their current and future priorities for housing should be. (As you will see, this explanation turned out to be inadequate.) Fine, I think. And then I see the questions.

Question 1: Bringing empty homes back into use should be a priority.
I have no problem with this. I see houses sitting empty in my area all the time - often, I suspect, as a result of mortgage repossessions, but probably also as a result of people owning several properties and not being able to rent some of them out. I tick the box marked 'agree' - it could be one of the council's priorities.

Question 2: Proposed changes in legislation should be used to reduce council tax exemptions and discounts on empty homes and second homes.
Hang on a minute. We just moved from sensibly-worded questions to ones that would get me a 'fail' on my Quantitative Research Methods course. Now I have a problem. I am all in favour of the council reducing discounts for people who own more than one home. I have no idea why they get council tax discounts at all - if you can afford to own two homes, you can afford to pay council tax on them. So why have the council potentially shoved in two extremely different groups of people together in this question? Depending on how you read the question (which is very unclear), it looks like two groups could be lumped in together here: rich landlords, and other, often extremely poor people who need to claim general council tax exemptions. If the second group is suggested in this question, this includes a large number of disabled people, many of whom claim a discount because they have an extra room (for a carer to sleep in, or for mobility equipment, or because they need more than one bathroom as a result of their care needs). As a dyslexic and dyspraxic person, I have serious problems understanding which groups are meant to be included here. I sighed, ticked 'strongly disagree', and wrote an explanation: This question is unclear. I am happy to see reductions on second home exemptions, but do not touch council tax exemptions for those on benefits, disabled people, and other people who need them for reasons of disadvantage and poverty. They are the reason why council tax exemptions exist.

Question 3 was another fairly clearly-worded, not-too-controversial question about charging more council tax on empty properties, and then we get to question 4.
Question 4: Whilst pension age claimants are protected, working age claimants should have their amount of council tax support reduced.
Ah yes. A leading question that suggests we will 'protect' the people who it's currently fashionable to help (those 'hard-working' people who have now retired), but not the scroungers who don't work. Look at how they refer to us: 'working age claimants'. Why not a term that gets across the concept of 'those who can't work because they are disadvantaged by this economy and its high unemployment levels, and disabled people'? I can't believe it's really that difficult to call us something that suggests 'disadvantaged people' rather than 'people who should be working'. I think this is emotive and biased wording of a question - another example of bad quantitative research. I ticked 'strongly disagree' and tried to explain why (in the very small amount of white space next to the ticky boxes).

Question 5: Using existing administrative and computer systems to minimise costs should be a priority at this point in time.
I'm not at all sure what they meant by that, but I ticked 'agree'. I wonder now if I should have left it blank. Questions in quantitative research, and especially in consultations, should be clear. Nowhere on the consultation paper was this question explained in more detail.

Question 6: Changes to other welfare benefits should be known about before looking to implement a radically changed council tax support scheme.
Again, this is a bit unclear - what changes are we talking about here? The information sheet hasn't fully explained this. I ticked 'strongly agree', and wrote 'Any cuts to council tax benefits must be applied sparingly, and only once we know the effects of current cuts on disadvantaged groups'. If I'd had more space, I'd have written a lot more about how disabled people are being abandoned into worse and worse levels of poverty by government-level benefit cuts, and how councils should be helping to make this a little bit easier, rather than jumping on the bandwagon and cutting local-level benefits too. I did not have enough space.

There were no 'Please write any further opinions here' type questions/spaces at the end. This is a serious failing in a consultation, and especially on such an unclear survey. As you can see, I had a lot of words I wanted to write, to explain my answers in more detail.

But what worried me most was the list of ticky boxes at the end. The survey had two sections under 'ABOUT YOU' - the second section involved Equalities Monitoring (and was solely about ethnicity). The first section, which I have to conclude would be used in analysis for putting answers in context, asked the following. Am I male or female? Answered. What's my age band? Answered. And then:
Are you presently claiming council tax benefit?
Oh, excellent. A chance for the council to discount the opinions of the people who will be affected by these changes most. The opposite might be true - but how do I know? The way these answers are used are not explained, anywhere, and that's the biggest problem here.
Will the proposed changes to council tax discounts affect you?
See above. I ticked 'no' to both of these, which is the truth at the moment (although possibly not in the future), and in the hope that they would take my answers more seriously as a result. But why should I be given that privilege? No explanation of how these answers will be used means people are left confused.
And the final whammy:
Do you consider yourself to be disabled?
Given that this question was also NOT under the 'equalities monitoring' section, I can only assume that, once again, this information is being used by the council in their analysis of my answers. I was so close to ticking 'no', until I realised that the council just might be using this information to give my answers more weight, not less. Unfortunately, since they again haven't explained how it will be used, I'm left very worried about what my answer (I did tick 'yes') will mean for the way that my opinions are taken into account.

The 'equalities monitoring' section itself was about ethnic origin. This once again gives the impression that disability is not an equality issue in this consultation - it's a situation that will be taken into account when answers are analysed. I still don't know how.

Consultation is really important. Councils have to consult before they make changes to things like benefits. I may be wrong about how the questions about disability etc. are being used - maybe councils do want to listen more closely to the views of people who will be affected by the changes. Unfortunately, with no explanation of how any of these questions will be used and analysed, and with such a poorly-designed survey anyway, I'm left with paranoia and doubts - especially in this age of the government ignoring disabled people's opinions and needs, on a massive scale.

I will be writing to my local councillor and asking why the council is issuing, as a consultation document, a survey that wouldn't pass as a basic Quantitative Methods assignment at university. Personally, I think they know very well what they're doing, and that they're using the badly-worded questions and lack of explanations for their own purposes. I can't prove any of this, of course. But there are far more responsible ways to consult, so that 'vulnerable' people aren't left feeling like this.

Have you experienced a bad local consultation recently? Are you concerned that your council is finding ways to overlook your opinions? I'd like to know how widespread this situation is.