Lord Morris of Manchester

I'm sure you've all read by now about the death of Labour peer Alf Morris. He was the man behind the 1970 Chronically Sick and Disabled Persons Act and the man behind Mobility Allowance (which then became the mobility component of DLA and will soon become the mobility component of PIP).

The Channel 4 website's obituary has a great quote from him:

“If we could each bequeath one precious gift to posterity, I would choose a society in which there is genuine compassion for long-term sick and disabled people; where understanding is unostentatious and sincere; where needs come before means; where if years cannot be added to their lives, at least life can be added to their years; where the mobility of disabled people is restricted only by the bounds of technical progress and discovery; where they have the fundamental right to participate in industry and society according to ability; where socially preventable distress is unknown; and where no one has cause to be ill at ease because of her or his disability.”

How the last few years must have broken his heart. That all compassion for disabled people has evaporated from our society, that all understanding has been replaced by hate. The fact that means have been put far in front of needs; resulting in the deaths of numerous disabled people because the government had decided to retract their support. The closure of the Remploy factories restricting the number of disabled people taking part in industry. Where socially preventable distress is inflicted on disabled people deliberately. And given that Mobility Allowance was his baby; the fact that mobility is being taken from 20% of that benefit's successors.

NAO Says DWP failed to penalise Atos

The National Audit Office has said that the Department of Work and Pensions has failed to penalise Atos for under-performance on the Work Capability Assessment and has failed to set the French multinational sufficiently challenging targets. In the past year Atos has been paid £122 million for carrying out the WCA, but a further £60 million has had to be spent on Tribunal cases appealing Atos judgements, 40% of which succeed. DWP has admitted that Atos performance has failed to meet agreed time limits and has been sub-standard since mid-2011.

The NAO also noted that DWP's failure to seek the reasons behind tribunal judgements mean that it is impossible to determine whether changes are required to the Work Capability Assessment and that its negotiating position is undermined by inaccurate forecasting of the number of people requiring an assessment, likely related to DWP's recent admission that people assigned into the ESA WRAG by the WCA are significantly more disabled than it forecast. Of the penalty clauses which have been triggered by Atos performance, DWP have claimed only 10% of the redress the taxpayer is entitled to.

A DWP spokesman claimed that they were committed to obtaining "value for money for the taxpayer", while an Atos spokesman said that the WCA contract was "complex and challenging".

The review was conducted by the NAO at the request of the Labour MP Tom Greatrex, who noted that the failure to claim redress and the tribunal costs mean that "The taxpayer is effectively paying for this service twice ... clearing up the mess that results from Atos assessments."

Given the Tory focus on applying 'private sector best practise' to government, the leniency being applied to Atos seems difficult to comprehend; no private company would simply let a failing subcontractor off with 90% of penalty clauses, while a stringent recovery plan would be demanded to deal with the failures rather than allow them to continue bumbling on without intervention.

National Insurance and "Taxpayers' Money"

An article I wrote appears in the latest issue of The Occupied Times and can be found online here. This is the unedited version I originally submitted, posted with kind agreement from the OT.

On the day that I’m sitting down to write this piece; an article largely about me and my fears over welfare reform appeared on the US Huffington Post. With it being the US site most of the commenters were Fox News viewers banging on about how Obamacare will introduce Death Panels and nothing to do with what the article was actually about.

There were some supportive comments from decent people who thought the UK welfare cuts were too much. There were some deeply disturbing comments from the pro-eugenics people saying that I shouldn’t be allowed to live at all. Aside from the Fox News fans, the other large group of commenters were the people who said either “well, it’s sad that people have these conditions; but why should they get taxpayers money?” Or “she says she can’t work but she also says she can do her own shopping. If she can leave the house to shop she can get a job and doesn’t need taxpayers money.” Because hitting the supermarket for 45 mins on a good day is exactly the same as working 9 to 5, Monday to Friday. But I digress.

The recurring point there is the one about “taxpayers money”. We seem to have developed this cultural notion that people who claim benefits are not taxpayers, and never have been. This isn’t true.

Because “please don’t dismantle the welfare state and leave people undergoing cancer treatment completely destitute” is considered an extreme left position these days I occasionally get pitted in radio debates against libertarians who are completely opposed to a welfare state because they don’t want to spend “their taxes” on paying benefits to other people. At some point I always end up screeching “it’s called National Insurance for a reason! That’s how insurance schemes work!”

I didn’t get my first job until I was part-way through my degree. My impaired mobility meant I couldn’t do the kinds of work young people traditionally do like bar work or stacking supermarket shelves. So I claimed benefits until I was educated enough for people to be willing to give me a job within my physical limits. I started paying my own National Insurance contributions halfway through my final year at uni and continued to do so for several years.

I was in my mid-20s when my health started to deteriorate. Over the next few years, bit by bit, I reduced the amount of work I was doing until, when I was 28, I reached a point where working was something I’d become completely incapable of. So I’ve now reached a point where I’ve claimed back from the National Insurance pot more than I ever paid in, but that’s how the insurance business works.

Some people buy annual multi-trip travel insurance every year and never make a claim. Other people take out a fortnight’s insurance for their first ever oversees holiday and have to make a claim immediately for a suitcase and contents that were destroyed on the outbound flight. Sometimes that’s just how the cookie crumbles.

I am not just scrounging taxes from others; I paid my taxes and my National Insurance contributions when I could, and now I can’t I’m living under the protection that the insurance scheme offered.

During one of the aforementioned radio debates I was up against a guy who felt that the idea of a third of tax spending going on welfare was absurd. His suggestion? Rich people take out private income-protection insurance instead and only us filthy poor people claim from the state.

Private insurance premiums would cost more than National Insurance contributions. Private insurance companies also try extremely hard to not pay out. If there’s an element of self-infliction to your condition - for example if you drunkenly dived into the shallow end of a pool and broke your neck – your insurer will probably not payout. The welfare state traditionally has paid out to all who needed support, regardless of how the need for support arose. He’d rather people pay more for poorer quality cover just for the satisfaction of saying “yeah, well, at least we’re not spending a third of our taxes on welfare!”

Wealthy people paying for private insurance and not claiming state benefits if they become ill or impaired would further undermine what little will there is among the rich to keep the welfare state going. A rich person has a motivation to pay their National Insurance contributions if they know they’ll get their £90-odd a week should they develop cancer; even though they’ve got their own means to not need it. With strict means testing for people claiming Employment and Support Allowance having come in, this gives the rich further grounds to be hostile towards the poor for claiming what they see as “their taxes”.

Some disabled people have never been able to work and will never be able to work. Some might argue that someone like me who only worked for a few years and has claimed back more than they paid in should at least be eligible because that’s the nature of insurance. What about those who’ve never paid and will never pay even one week’s National Insurance?

The answer to this question is something brought up by a different radio debating partner of mine and also is brought up several times by commenters on the Huff Post article telling me that I don’t deserve state benefits: It’s a family’s responsibility to look after a disabled child.

Of course, what they mean is that a parent should pay to meet every one of the disabled child’s needs for life and the state shouldn’t be forced to pay for a quirk of genetics, a traumatic birth or an accident. But I see it differently: If I’d never been able to work at all; the National Insurance premiums my parents paid would cover me. Radio Rightwinger said that she’s made private insurance arrangements to protect her family, how does National Insurance differ? Both my parents worked in factories and paid their National Insurance, how is that any different to Radio Rightwinger’s private insurance pot?

With people of means no longer able to claim Contributory Employment and Support Allowance for more than a year if they’re deemed capable of possibly being able to work at some point in the future it not only undermines support for National Insurance as I’ve already mentioned; it’s also a remarkable bait and switch. A comparable situation is public sector pensions: Public sector workers were sold a pension scheme and now the government is trying to change the rules. You have to have paid a minimum amount of National Insurance contributions to get Contributory ESA – the clue is in the name – but disabled people are not getting the same outrage and support over this changing of the rules. Two million people striked over pension changes, but because we’re seen as “scrounging taxpayers money” rather than “people who paid into an insurance scheme” I don’t think we’ll ever see the same amount of support in fighting the changes.

Atos sponsors Olympics and Paralympics

At the end of last week @hossylass and I were both asked to write a short piece about Atos to go into this satirical paper about the Olympic/Paralympic sponsors. Our submissions were then not included. So I'm posting them on WtB instead. Mine can be found here. Hossy in fact wrote 2 pieces as she was unsure what they wanted, these are them:

Dear Customer,

You have been carefully selected by your Government database to be one of the first to benefit from our latest opportunity to turn your life around.

Remember how we managed, in one simple assessment, to free you from the burden that is state dependency, and to simultaneously reduce your sickness or disability from “severe” to “marginal” or in some cases cure you altogether?

Well now there is more good news. We have been carefully chosen to take you on a new journey of discovery, to help you to be even less dependent on the state.

This journey will consist of an interview with someone who has an understanding of disability (having completed our extensive 3 hour course), and will be a wonderful opportunity for you to experience different cultural opinions to disability, to learn how to decipher strong accents from many nations, and to allow you to describe your disability in a much reduced manner.

No more shall you be compelled to explain at depth your condition and its affects on your everyday life – we have removed that burden too, and all that will be asked of you is Yes or No answers.

I am confident that you will embrace this opportunity – it will almost certainly be life changing!

Atos Healthcare

---

Atos sponsors Olympics and Paralympics

Atos are proud to sponsor the 2012 London Olypmic Games, and the UK Government are thrilled that Atos are committing with such generosity.

A spokesperson for the DWP said: “In all our dealings with Atos we have found them very receptive to opportunities, sponsoring the Olympics is another way that the Government can cement our relationship. It is also a clear sign that Atos care about not just healthy people, but also those who need to become healthy. Sport is clearly the way forward to good health, as is work.

It is this commitment to ensuring that people are termed healthy that has convinced us that Atos Healthcare are genuinely the best people not just to sponsor the Olympics and Paralympics, but also to manage assessments that increase the number of people who are fit for work, whilst decreasing their personal costs, something I am sure all sick and disabled people want.”

Meanwhile a spokesperson for Atos said: “We are very much looking forward to watching the Olympians, and are grateful for the opportunity to do so. When the Paralympics start, we will be watching equally as closely, if not more so. It is a marvellous opportunity for us to analyse and assess performance, it should be quite enlightening and educational, and may give us increased opportunity to help people to become less dependent on the state. We may be recording some of the competitors for training and fact verification, in order to reinforce our views.”

When questioned on their knowledge of the Paralympic grading system of disability, and disability in general, Atos admitted to being “not quite up to speed” but are “willing to learn”. This is indeed positive news, given that Atos are currently being accused of not having complete understanding of disability, and the vast amounts of proof available that these accusations are founded in fact.

Atos found "fit for work"

At the end of last week @hossylass and I were both asked to write a short piece about Atos to go into this satirical paper about the Olympic/Paralympic sponsors. Our submissions were then not included. So I'm posting them here instead. This first post is my submission, while Hossy's is here:

Atos found "fit for work"

French IT company Atos were last week found "fit for work" when they were awarded the contract by the ConDems to assess disabled people for the new benefit Personal Independence Payment (PIP). This is despite them being completely incapable when it comes to assessing people for the existing benefit Employment and Support Allowance (ESA). Atos's conclusions in ESA decisions are frequently challenged and appeals found in favour of the disabled person.

If a disabled person was as lacking in ability as Atos then even Atos would probably find them incapable of functioning in the workplace. Despite Atos not being able to correctly decide if they can wipe their own bums without help from a tribunal panel, they will now be tasked with not only finding out if disabled people are fit for work, but also whether or not disabled people are entitled to help in the bum wiping area. And you need that wipe to be damn effective now: The government have redefined the verb “to bathe” and if you need help when it comes to washing you're now only allowed to wash your hands, face, underarms and torso. So when wiping your butt you need to get it spotless because you're not allowed to clean it in the bath.

Atos operate from the idea everyone's a faker until proved otherwise. The same mindset that has excluded all athletes with learning difficulties from the Paralmypics since the Spanish learning disabled basketball team were found to be mostly comprised of frauds in Sydney in 2000. Genuine athletes with learning difficulties make their return this year after having been excluded for 12 years because of a tiny number of fakers. Disability benefit fraud is less than 0.5% but Atos are torturing all disabled people. Kinda makes it seem like Atos are the perfect sponsor.

#ATOS Contracts: Sick Joke, Or Rewarding Incompetence?

It seems the reward for all the heartache and suffering that ATOS have inflicted on disabled people over the past few years, the bonus for getting one assessment in six so wrong it is overturned in front of a judge, for wasting £50m/year of taxpayer’s money in those appeal tribunals, is the right to inflict precisely the same kind of abuse on millions of disabled recipients of Disability Living Allowance as the government axes that successful benefit in order to exclude 20 to 25% of current recipients.

In the same week that ATOS has been pilloried by back to back Dispatches and Panorama documentaries that revealed staff who consider their job toxic, who spend their time looking for ways to not think about the consequences on the patients they swore an oath to protect, while celebrating that they are never called before the tribunals who have to put right their failure, and who seemingly find nothing wrong with asking a suicidal patient why they haven’t succeeded yet (not to mention the absolute triumph of finding a sectioned, catatonic man fit for work), the government has seen fit to reward their execution of the WCA contract with the majority of the contracts to conduct the DLA to PIP migration. The other contracts have gone to Capita, an outsourcing company, because clearly managing office cleaning is everything you need to know to conduct complex medical assessments of disability (or maybe it was their work as bailiffs which drew Grayling’s eye). The terrifying thing is it could have been even worse, G4S were competing for the PIP contracts until they reduced Olympic security to a farce.

You have to wonder what IDS was thinking when he signed off on this. Was he rewarding incompetence, or rewarding ATOS for their demonstrated ability to ignore facts, humanity, ethical obligations and even sheer common sense in pursuit of the mandated cuts?

Fear, Loathing and Disability in the Torygraph

It turns out yesterday's attacks on us in the Mail and Express were not the DWP's only pre-emptive strike against the disastrous revelations of Dispatches and Panorama. The DWP puppetmasters also convinced the Daily Telegraph to launch an attack on disabled people, this time with a rehashed version of a Christina Odone blog (apparently the Telegraph were too lazy even to write an original piece).

This being the Torygraph, the primal hate of the Mail and Express would not suit their house style, so the article is framed to claim that the 'disability rights lobby' (a term she uses repeatedly, apparently in an attempt to paint us as no different to any corporate lobby group, rather than as an actively disparaged minority subject to spiralling levels of hate crime) are attempting to have their cake and eat it, by demanding both the right to work, and the right to have out of work benefits on demand. She even drags in the Paralympics, writing:

Aren't the Paralympics proof that even the most physically challenged can achieve awesome feats? Their disabilities did not prevent Nelson, Byron, FDR, JFK from achieving their goals.

Apparently if we aren't winning gold medals or becoming living legends, then Ms Odone considers we are letting the side down. She is actually articulating a view many of us have been afraid of, the use of the Paralympics as a tool to beat us with, rather than to celebrate our achievements, while her selection of disabled heroes make an interesting choice: Nelson who was already marked for high office (and had patrons to ensure that) before he ever became disabled; Byron, whose club foot did little to limit his poetry (but which does demonstrate the psychological damage caused by negative views of disability); FDR, who was again a major figure prior to disability, and who did everything in his power to hide his disability, to the extent that most Americans did not realise they had a disabled president, and JFK, whose political career was the vehicle of his media magnate father, and who suffered from the back pain she goes on to deride later. There is much to celebrate in all four of these disabled lives, but also much to be critical of in the light of contemporary views of disability, and all four had assets and influence operating on their behalf that are available to very few people in our society, disabled or otherwise.

But it is in her final paragraph that Ms Odone's mask slips and she descends to the level of the Mail and the Express, proclaiming:

A man who claims to suffer from a debilitating but unprovable backache, an alcoholic who refuses to tackle her addiction: they may be considered "disabled" but should they receive benefits? When they do, the truly incapacitated feel cheated. As do the rest of us.


As someone who actually has a 'debilitating but unprovable backache,' I had just finished speaking on Radio London about disability hate crime and the irresponsibility of vile tabloids like the Mail and Express in whipping up ignorant hatred against disabled people by teaching the mob that common disabilities are not real and that we are all 'fakes' and 'frauds' and legitimate targets for their hatred when I came across Ms Odone's article. To find the same hate-filled line being repeated in the Telegraph, supposedly a 'quality' broadsheet was utterly depressing.

My 'debilitating but unprovable backache' manifests itself as pain across the entire lower surface of my body if I sit at a desk. Imagine feeling like you have a burn across everything from knees to buttocks, and feeling that every day across 20-odd years of disability. I worked for most of that, but every other day would see me curled up on the office floor, in so much pain that I couldn't string two coherent thoughts together. It might not show on x-rays or MRIs, neuro-plasticity means that the only issue need be the internal wiring of the spinal cord, but multiple rheumatologists and my pain management specialist are in no doubt that my pain is very real, and utterly disabling. Yet apparently Ms Odone is medically qualified to the point of being able to dismiss them without even seeing me.

Forced out of work, even DWP accepted there was no hope of me finding work, but my WCA was a bitter farce that triggered a major flare-up in my disability which lasted months. Never mind the problems shown in last night's documentaries, the ATOS doctor was verbally aggressive from the outset, criticising me for my knowledge of the process, dismissing evidence later proved to be absolutely true as my condition worsened in front of him, and actively trying to prevent me giving the one piece of evidence that qualified me for ESA outright. My report of what happened now forms part of the Work And Pensions Select Committee report into the WCA.

And then last year, no doubt because of the encouragement of hate-filled articles like this, someone reported me to the Benefit Fraud Hotline as working full time. I rarely leave the house more than once a week for a couple of hours, my car sits on the drive in open view for all of that time, yet someone felt able to assure DWP I was a benefit fraudster, because they had been taught by the tabloids and by articles like this that all of us are. The DWP investigator may have dismissed the allegation before she was even through my front door, but the consequences for me were a massive flare-up, lasting months, leaving me barely able to snatch an hours' sleep at a time. And when it came time to renew my ESA claim at Christmas, I was simply unable to do it, every attempt triggering panic attacks. That is the reality that articles like this create for disabled people, that is the climate of hatred we live in. 

Hatemongering at the DWP?

The press-officers and Special Advisers at the Department of Work and Pensions must have been burning the midnight oil the last couple of days, searching the records of the DWP for benefit claimants they can spin as having unjustifiably claimed benefits for what they can try to convince people are minor injuries. And today they must have been patting themselves on the back as the Daily Mail and the Daily Express laid into disabled people for daring to claim when suffering such minor injuries as low back pain.

As it happens I have low back pain, it has dominated my life for twenty years, it led to the end of my career as an engineer developing flight control systems, on far too many days it has left me curled up on the office floor, in so much pain I can’t think straight, as sensation tries to convince me I have burns across the entire lower surface of my body. So forgive me if I disagree that this is a minor disability.

As I read that article in the Mail, I didn’t share its outrage. What I felt was fear, the fear of being targeted for the baying mob as a ‘fraud’ and a ‘scrounger’. The Mail is teaching everyone who reads that article that people who have low back pain, people who have any little understood disability, ultimately all disabled people, are ‘frauds’ and ‘scroungers’, and suitable targets for their hatred as the economy tanks. Is it any wonder disabled people see terrifying parallels to the similar campaign in Nazi Germany.

Incitement to Disability Hate Crimes dressed up as socially responsible reporting by the Hate Mail and the Vexpress, this is nothing new, but the interesting question is why today?

The answer can be found in the TV schedules. At 8 PM on Channel 4, Dispatches will be ripping open the repellent truth of ATOS and the WCA, with a doctor going undercover and being told by his ATOS trainers that the point of the WCA is to get people off benefits and that if they don’t hit the targets and put sufficient people off benefits they will be sanctioned (the targets the DWP swears blind do not exist). Then at 8:30PM on BBC 2, Panorama does exactly the same thing, with Professor Harrington, the independent reviewer of the WCA saying that there are areas where it is clearly failing disabled people.

The DWP are desperate to do whatever they can to prevent the truth of their disablist behaviour and that of their contractors becoming more widely known, and as they have done on previous occasions, they have tried to launch a pre-emptive strike through their glove-puppets in the right-wing press. We may not see their hand directly, but only the DWP is in a position to dredge up the figures quoted in both articles.

IDS may proclaim himself perplexed at the way the right-wing press turn DWP statements into vicious attacks on disabled people, but there can be no doubt that we are seeing a deliberate campaign of vilification orchestrated from within the DWP. If they want the results to be different, they have had years to change their behaviour, but there has been no such change. Instead we see the shameful sight of a government inciting hatred against its most vulnerable subjects.

And the effects of that campaign of hatred and incitement will be seen tomorrow when Scope publish the results of their latest survey, revealing that the rate of disability hate crime has doubled since 2008.

A Toxic Day for ATOS at the Olympics?

ATOS will no doubt have been hoping to milk their association with the Olympics and their partnership with the International Paralympic Committee over the next few weeks, but is the milk about to curdle, could the Olympics turn ATOS into a toxic brand?

Later tonight, at 8PM on Channel 4, and at 8:30PM on BBC2, both Dispatches  and Panorama will be running exposes of the ATOS WCA process. We’ve already seen hints of what is to come with leaks from Dispatches showing ATOS trainers telling doctors that if they pass more than the approved amount of disabled people they will be subject to sanctions, and a DWP spokesperson claiming it is nonsense to say there are targets. Meanwhile Panorama has Professor Harrington, the independent reviewer of the WCA process admitting that it is failing disabled people and is not good enough.

Worse, Steve Hill’s case, featured on Panorama, and summarized here by bendygirl, raises the disturbing possibility that the WCA may have directly contributed to his death, by convincing a man with chronic heart failure and waiting for surgery that he was actually fit for work. Steve Hill died of a heart attack after vacuuming his car, 39 days after an ATOS doctor told him he was fit for work.

Meanwhile, a Parliamentary Early Day Motion, laid down by the superb John McDonnell, MP, one of disabled people's true friends in the Lower House, castigates ATOS for their treatment of disabled people, and the International Paralympic Committee for associating themselves with an openly disablist company by naming it as a partner. Never mind the active mistreatment of disabled people, ATOS can’t even be bothered to make most of their assessment centres actually accessible to disabled people. The IPC’s attitude when disabled people write to complain (and I have done that myself and seen their reply) is essentially that they don’t care as it isn’t their problem – I am curious as to which part of the Olympic spirit is reflected in telling disabled people you don’t care about the way they are treated by the company you are allowing to wrap itself in your flag?

83 MPs covering just about every party, though no Tories yet (quel surprise), have signed the EDM so far. Just think about that, 83 MPs condemning the International Paralympic Committee and its partner company on the first full day of the Olympics for the way disabled people are treated by them.

My own experiences of ATOS can be found here, and the long term effects it has had on me are discussed here.

I am hoping for a wonderful Olympics and Paralympics, but for a disastrous one for ATOS. And as for the International Paralympic Committee, I am hoping that this will serve to remind them that they are supposed to represent everything that is best about disabled people, not defend their oppression. The Olympic Spirit is about being the best that we can be, not about providing corporate whitewashes.  

#OpeningCeremony Programme Image Transcript

Last night this image did the rounds on Twitter. It's a page from the opening ceremony programme in which Boyle explained his vision.

As the image is not accessible to screenreader users, and because of its reference to the welfare state, it seemed sensible to post a transcript here. Huge, huge thanks to @lilacwheelz who actually transcribed it.

‘Be not afeard: the isle is full of noises’

The Tempest, William Shakespeare



At some point in their histories, most nations experience a revolution that changes everything about them.

The United Kingdom had a revolution that changed the whole of human existence.

In 1709 Abraham Darby smelted iron in a blast furnace, using coke. And so began the Industrial Revolution. Out of Abraham’s Shropshire furnace flowed molten metal. Out of his genus flowed the mills, looms, engines, weapons, railways, ships, cities, conflicts and prosperity that built the world we live in.

In November 1990 another Briton sparked another revolution – equally far-reaching – a revolution we’re still experiencing. The digital revolution was sparked by Tim Berners-Lee’s amazing gift to the world – the World Wide Web. This, he said, is for everyone.

We welcome you to an Olympic Opening Ceremony for everyone. A ceremony that celebrates the creativity, eccentricity, daring and openness of the British genius by harnessing the genius, creativity, eccentricity, daring and openness of modern London.

You’ll hear the words of our great poets – Shakespeare, Blake and Milton. You’ll hear the glorious noise of our unrivalled pop culture. You’ll see the characters from our great children’s literature – Peter Pan and Captain Hook, Mary Poppins, Voldemort, Cruella de Vil. You’ll see ordinary families and extraordinary athletes. Dancing nurses, singing children and amazing special effects.

But we hope, too, that through all the noise and excitement you’ll glimpse a single golden thread of purpose – the idea of Jerusalem – of the better world, the world of real freedom and true equality, a world that can be built through the prosperity of industry, through the caring nation that built the welfare state, through the joyous energy of popular culture, through the dream of universal communication. A belief that we can build Jerusalem.

Worcestershire County Council, Past Caring?

Austerity is hitting social care hard. More and more councils are changing their eligibility rules, directly affecting who qualifies for care. In turn, the closure of the Independent Living Fund (ILF) and the reduction of the care budget by local authorities, are antithetical to what the modern disability movement has been striving for in the last 40 years. As a result of this, the archaic model of residential care is threatening to make a comeback. Bringing with it a wholly paternalistic way of thinking: social services and those in positions of authority are restricting the freedom and responsibilities of people subordinate to them. 

Harsh wording perhaps, but this may be the reality for service users within Worcestershire County, as highlighted by the WeAreSpartacus report titled ‘’Past Caring’, released on the 12th of July, which served as a response to Worcestershire County Council’s Maximum Expenditure Policy. ‘Past Caring’, criticizes any impending policies that would impose a cap on care costs, meaning that anyone needing significant amounts of support may have to go into residential care. The initiation of such policies by WCC would only affect new service users, or those experiencing increased care needs. I suggest that this will result in a two tier system: service users with fixed care needs, already established within the system, will be temporarily safeguarded by such changes, however those with fluctuating or increased needs would be assessed under the strict eligibility requirements, and therefore be forced to make a fresh case for their right to live independently. The reality is that independent living in post-austerity Britain is under threat.

The 'Past caring' clearly state, there are three options: 1) Pay for the shortfall privately 2) Change the type or volume of care provided, or 3) Access community voluntary organisations and faith groups for additional care support. The proposed alternatives are unrealistic for those in long-term care. The first option is only available to a wealthy minority, or at best could be utilized as a stopgap measure for anyone until their savings run out. This contingency measure may well become a reality for some who are backed into a fiscal corner. However, WCC clearly states:

You (or a family member) could decide to make an additional financial contribution towards the care package (this would be in addition to any financial contribution you are required to make under the Council's Fairer Charging Policy) 

This suggests then, that a disabled person would not only have to continue paying for the council’s ‘Fairer Charges’, but also any additional care that isn’t covered by social services’ new policy. This begs the question, what has happened to the familiar phrasing found on most DWP letters, namely the fixed amount that you are legally entitled to live on - has this fallen by the wayside? Its absence under the new policy is palpable.

The second option, the reduction of hourly care, directly conflicts with the ethical and legal obligation of required social services. The ‘Past Caring’ report identifies that the number of care hours an assessment recommends would be fundamentally unmet after a reduction in “volume.” It’s important to note however, that once a person’s needs have been identified, then the state has a legal obligation to acknowledge their entitlement.

In turn, WCC have also suggested that the usage of adaptive technologies should be considered, which seems laughably absurdist. Cheaper alternatives, such as Direct Payment. have been identified by ‘Past Caring’ as not suitable for all, because many people cannot meet the demanding regime of paperwork, which is required from the service users themselves.

To my mind, the third option is equally as inadequate as the first two. The mere suggestion that disabled people can automatically access community voluntary organisations and faith groups, fails on many levels, not least because it places disabled people’s autonomy under pressure by forcing service users to seek charity, locating funding from sources whose social, political or religious leanings might not be in line with their own. Are we suggesting then, that people with disabilities are supposed to be grateful for help with the cost of personal assistance, wherever the source of this support comes from? This negates peoples rights to a personal social or political opinion, moving dangerously close to Cameron’s Big Society, which has shown to be unsuccessful and hardly sustainable as a long term solution.

Residential Care, a flawed alternative?

The report identifies the two groups at most risk, namely those with significant disabilities and care needs that will exceed the capped cost under the new guidelines of such policy. Thus the Maximum Expenditure Policy will undoubtedly lead to the routine institutionalisation of entire user groups, who will be shunted off to care homes for the rest of their lives. In the event that such suitable accommodation can be found, it is furthermore highly unlikely to be local due to its scarcity. This would lead to uprooting the service user, severing local ties to family and community, resulting in the loss of a broad social network. Depending on the location of the residential home, it may be extremely difficult for friends and family to visit regularly, leading in turn to extreme isolation and the deterioration of existing relationships.

The second group are those who are approaching the financial ceiling of the cap. Such service users, in order to avoid residential care, are likely to make detrimental life decisions in order to keep costs low. For example, skipping certain meals or utility costs to curb spending in their own care package. As a result, and as ‘Past Caring’ puts it, ‘the quality of life and safety of this user group is highly likely to be compromised by the Maximum Expenditure Policy’.

To sum up the main points made by ‘Past Caring’, firstly and most importantly, WCC service users are faced with the possibility of being forced to choose between home and the daunting possibility of residential care. The policy’s three suggested alternatives highlight the extent of WCC’s capabilities. WCC’s failure to provide an accessible consultation with service users opens the council up for legal scrutiny. Therefore, this report provides evidence that the only other valid option they are offering is that of being placed in a residential care home.

It has been suggested that the White Paper will put an end to the postcode lottery, delivering equality of care wherever one might live. Yet, the adoption of WCC's policy directly contravenes this. The action taken by WCC reveals certainly that, within the near future, there will be a clear disparity between provision for those who live in different counties. The bureaucratic mess gives counties a window of opportunity to exploit the weaknesses of Welfare Reform, meaning that unfortunate individuals will fall between the cracks of the system; becoming increasingly unheard and unaccountable. The impending changes greatly undermine lifestyle choices and the ability for people with disabilities to imagine a long-term future within Worcestershire County. ‘Past Caring’ states: 

...Moving into residential care for purely economic reasons will lead to curtailing of independence, curtailing of freedom, loss of income, loss of social ties, loss of community ties, loss of daily social activities, potential job losses and perhaps most shockingly family break up. 

The loss of community is a loss of social network, which I would define as a supportive component of independent living. Yet, questions have to be asked, does the introduction of such policy reflect a fair ratio of cuts, or are these burdens falling squarely on disabled people? Will there be additional financial burden from living within residential care, such as curtailed employment prospects due to prohibitively high costs? Let it be stated that freedom is under threat here and social isolation is the likely result. Therefore, it’s important for all local disabled people, their families and allies alike, to speak up before consultation finishes at the end of July. For more information, visit We Are Spartacus.

Guest Post: Supported Mortgage Interest and Welfare Reform

This is a guest post from @_louhicky.

A limited range of accessible housing restricts the lifestyle choices made by disabled people. There has been a lot of discussion about accessible housing in the media recently. Last week The Guardian published the article ‘Young disabled people failed by estate agents and property websites.’ The study ‘Locked Out’, recently compiled by The Trailblazers, a group of young disabled people, highlighted the common failure to understand the needs of wheelchair users; particularly with respect to what makes an accessible property. (NB: I know there is a glaring disability hierarchy at play here, for the sake of this blog I am going to put this argument aside. I’m taking note of it.)

The lack of social mobility is worth a mention here and the long-term implications of suffering restrictions within the housing market. In clarifying what I mean by social mobility: to many this signals the ability to move vertically or even horizontally within social classes. To progress, to study, to live independently, to obtain employment, to buy a car, maybe even an annual holiday, or simply to aspire to something. I’m not so interested in movement between social classes, but rather the importance of having choices - even if they are related to materialistic desires. One comment by user cycleloopy on The Guardian’s feature, states:

Estate agents want to do the least amount of work for the most return. Recognising the needs of people with disabilities sounds too much like hard work.

There is a stinging element of truth here, but let’s reframe this comment. Estate agents desire profit, this limits the housing stock or profile for those who seek accessible housing. The private rental market is not a realistic choice for people who require adaptations to be made. Again, the ‘Locked out’ report found that seven out of ten say they find it difficult to identify accommodation that is accessible to them, largely because estates agents have poor knowledge of adapted properties in their area.

The chances of successfully appealing a decision are quickly evaporating under the coalition government, leaving disabled people left without choices, trapped within their own circumstances. What’s next, the property ladder? Yet, the [Locked Out] report found that nine out of ten people say that they are just as keen to get onto the property ladder as their non-disabled peers.

Home Ownership schemes (which have been mainly brought about by the Labour government) such as HOLD (Home Ownership for Long term disabilities) increase the availability of accessible housing, especially if these free up local authority properties. Effectively, this creates a small-scale economy for people with disabilities, and, as a result, creates demand and opportunity for others. Ownership is currently, albeit rather precariously, available with the assistance of Supported Mortgage Interest (SMI), which has been extended under this year’s budget until January 2013. However, SMI is presently under review (the consultation period ended in February 2012), and it would seem that the coalition government is underestimating the power of ‘crip economy’ and its potential as a source of fiscal stimulus. The DWP’s SMI impact report shows that there were roughly 239,000 recipients benefiting from this scheme in 2011/12, at a cost of £400m.

Under welfare reform it has been suggested that SMI will be further incorporated into the Universal Credit system, however this complex process of streamlining benefits would undoubtedly mean that some people are likely to be left out. A Guardian feature from late last year, Disabled people pay price for cuts to mortgage relief revealed that regardless of these changes, SMI payments have become unpredictable, as they already have been subjected to cuts. When, for instance, average interest rates fell below 6.08% some people enjoyed a surplus on their payments, whilst when the rate was cut to 3.63%, others found their payments falling short of what was in fact owed. Under pressure, then, from both Welfare reforms and unpredictable SMI rates, disabled people are prevented from making the move onto the property market that they ostensibly desire, and as a result fully adapted homes are lying empty.

It is evident therefore that the long waiting list for accessible properties substantiates the idea that there is high demand and no supply. Indeed this is not helpful whilst transferring between local authorities with care packages. The ‘Locked Out’ report reveals that eight out of ten people are not confident that they would be able to access the same level of care and support if they moved out of their local authority. Similarly, relocation for a new job is almost impossible. As Channel 4’s No Go Britain highlighted in its interview with Hannah-Lou Blackall. No housing means no job.

A lack of housing options denies disabled people the basic right to make choices about their lifestyle. The ‘crip economy’ shows potential for growth, but the enforcers of housing policy need to ensure that local authorities are building all new housing options to the Lifetime Homes Standard, and even further that ten percent will be built to wheelchair standard design.
This post hasn’t even begun to tackle the adaptation of existing homes, or cooperation of private landlords within the letting market. In the United States, an accessible apartment is defined ADA (American Disabilities Act) accessible, clearly labeled, and clearly following the lines of the disability law - most importantly defining a standard within the marketplace. In order to be classified as ADA accessible, properties have to meet certain legal requirements: there is no room for subjective interpretation, or making do with already-existing properties and their flaws. If the British government adopted tougher measures, recognizing the value of choice, whilst sustaining the current growth of both social and private markets they could offer people the chance of taking their dream job, or ensuring that family growth and long term security is achievable, or even, quite simply, the chance to live with flat mates without complex bureaucracy.

More information: My safe Home - http://www.mysafehome.info/

Karen Sherlock - An Ordinary Woman In An Extraordinary World

Karen Sherlock was just an ordinary woman. She didn’t have a great deal of money, her health meant she didn’t get many opportunities to go out, particularly not anywhere you might have seen her, and even if you did you wouldn’t have given her another thought. Just another woman in middle age as invisible as all women past a certain age become. 

But Karen had another life, one in which she was recognised for her courage and determination to stand up for the rights of all sick and disabled people subject to the Work Capability Assessment. You might not have noticed Karen, but had you paid attention you would have seen the story of an utterly remarkable woman, who’s experiences typify the disconnect between the reality of sick and disabled people’s lives and the blunt instrument employed by the state to rule if we are ‘fit for work’. 

Karen was diagnosed with type 1 diabetes when she was 3. By the time she reached working age she was already developing complications from the diabetes, but that didn’t stop her working and living a full life. Time passed, she married her beloved Nigel and worked in the NHS. Her health worsened, and after losing most of her eyesight it became impossible for her to continue working. In February 2008 Karen was dismissed from her job due to ill health, a decision made by the Occupational Health arm of Atos on behalf of the Pensions Agency. 

This is when Karen’s nightmare truly began. She applied for Employment Support Allowance, formerly called Incapacity Benefit, which is a benefit for people who are unable to work temporarily or permanently due to disability or ill health. She was called to attend a Work Capability Assessment ‘medical’, again run by Atos, but an Atos held to entirely different standards by the Department of Work and Pensions than the Atos who’d decided she was unfit to work in the NHS. The standards used by Atos to medically retire Karen from her NHS job considered whether she was well enough to do that specific job, but as intended by the government, the Work Capability Assessments she endured were designed purely to assess whether people have any capacity for some work in some form. Ministers such as Chris Grayling have made it very clear that this is the intention of the test by repeatedly stating their ‘absolute and implacable opposition to a real world test’. In normal person speak what that means is that Ministers refuse to consider a fitness for work testing process that considers the job the person was trained to do and whether they are still capable of carrying that out, instead focusing narrowly on whether they have some capacity to perform imaginary work related tasks such as being able to sit at a workstation for half an hour. On May 30^th 2012, the day before Karen was finally placed in the Support Group, a mere 10 days before her death, Chris Grayling announced that those in the Work Related Activity Group, those people just like Karen who could soon expect to be mandated to the Work Programme “have proved sicker and further from the workplace than expected” That is one way of describing it to the 32 families each week grieving the death of their loved ones who had been found ‘fit for future return to work’, people a far cry from the supposedly lazy scroungers the public have been led to believe this policy applies to. 

Karen described her first WCA in Spring 2008 as a ‘farce’, never heard the results and was called for another WCA in August 2008 when she was placed in the Work Related Activity Group. Karen had diabetic autonomic neuoropathy, gastropaerisis and diabetic retinopathy. She was partially sighted, with a heart condition, asthma, chronic kidney disease, B12 deficiency, anaemia, high blood pressure and was frequently doubly incontinent. For all these reasons she was correctly found unfit to perform her role in the NHS, but the Work Capability Assessment is not designed to consider whether someone is fit to work in their job of training, it is a blunt tool purely intended to separate people out into 3 categories;  those who are unfit for any kind of work, placed into the Support Group with no conditions attached to their benefit receipt, those who are considered entirely fit for work and transferred to jobseekers allowance, then the WRAG  intended for people with some disability or health problems considered able to return to the workplace in some future capacity. Those placed in the WRAG are expected to participate in activities aimed at returning them to the work place, including mandatory work programmes in some circumstances. For those in receipt of contributions based ESA (the benefit paid in return for National Insurance contributions) a one year time limit applies, retrospectively, whereas this benefit used to be paid as of right to those with sufficient NI contributions for as long as they were sick or disabled. This means that people such as Karen who had worked all their lives lose their eligibility for ESA. Karen’s husband Nigel worked, but even before tax didn’t earn anything approaching the £26,000 pa means testing limit being introduced for other benefits.  This didn’t matter as the means testing limit for ESA is a partner earning a mere £7500 pa. 

Karen endured the stress and anxiety of four WCA’s and subsequent appeal processes between 2008 and April of 2012 when her ESA stopped completely, leaving her and Nigel £380 per month worse off. Karen was terrified, so much so that her fear was palpable, even online. She worried about how they’d pay their mortgage, basic bills, how Nigel would cope. At the same time Karen was consumed with anxiety about the financial aspects she was also in worsening health, awaiting an operation to enable her to start dialysis, being considered for the transplant list and investigated for worsening cardiac problems.  Despite all that, Karen remained in the Work Related Activity Group. 

I first knew Karen in October 2010, when we founded The Broken of Britain a social media based disability rights campaign. We were asking sick and disabled people to speak out, to tell their stories about how they had become reliant upon benefits, and people were initially reluctant. Pride and fear combine to prevent us wanting to discuss the intimate details of our lives in public. But a small handful of people stepped forward in those first few days, they pushed aside their anxiety that speaking out would be used against them by the DWP and told their stories. Karen was one of these people. Although she is probably the most terrified person I have encountered to date about the welfare reforms, she was also the first to stand up to be counted. Karen understood that telling her story would help other people and so she acted in characteristic manner and did what she believed to be right for everyone. The last email I have from Karen is from early April 2012 when she told me she’d used the benefits calculator I’d suggested to see if there was any other support she and Nigel could claim. There wasn’t. I couldn’t offer Karen any hope, all I could do was apologise and explain to her that this was the exact intended effect of the benefit ‘reforms’ we had all fought so hard to prevent. 

I can’t think of an online group who didn’t benefit from Karen’s presence over the past two years, she played an active role wherever she could, trying to support other people in distress. When Karen was frightened, which was most days, she would literally beg other campaigners for the reassurance that everything would be ok. Every time it broke a piece of my heart not to be able to offer her the security she needed, the answer she was so desperate to hear, that it would be ok, that it was all some big mistake. None of us could ever tell Karen that, she died a mere 8 days after getting the notice she had finally been placed in the support group, her last years of life utterly blighted by ‘despair, helplessness and frustration’ directly caused by a government who’s leader had pledged to alleviate precisely such bureaucratic suffering. 

For me, one memory typifies both Karen Sherlock and the complex, bureaucratic cruelty she experienced. The Atos nurse who performed Karen’s initial WCA was kind to her and tried to reassure her that she should be in the support group. These comments stuck with Karen, she could not understand how what had been so obvious to the first person to assess her had been overturned, nor why everyone else she appealed to seemed so wilfully blind to it. It both haunted Karen and gave her the strength to carry on fighting for what she knew to be right. I explained to Karen that although she’d been assessed by an Atos employee, a Department of Work and Pensions Decision Maker, with no medical training made the final decision about which group people are allocated to, the support or Work Related Activity group Karen was repeatedly placed in. In passing I mentioned that the people carrying out the ‘medicals’ weren’t supposed to comment on which group people are put in. Despite her terror, her anxiety and the disgraceful way the system had treated such a vulnerable individual, Karen worried that if she spoke out about that nurse’s compassion she might get her into trouble for having demonstrated a kindness the process of claiming Employment Support Allowance is designed to deny. 

Goodnight Karen, Sleep Well Xx 

Flowers and tributes were sent for Karen's funeral from donations from her online family

The Real Cost of Losing Motability - #ReversingRecovery

A report released today shows how PIP will be disastrous not only for the disabled community, but also for the car industry. In short, ending DLA will have a serious effect on the economy. The report is calling on the government to reconsider its reforms to DLA, including by consulting more widely.

The report, 'Reversing from Recovery', makes it clear that many fewer disabled people will be eligible for Motability cars under PIP rules. To quote the report, we're looking at "a 27% reduction in the number of working age disabled people, and a 17% reduction in the number of disabled people overall" who can access Motability cars. There will be major effects on the economy as a result, including a £342 million drop in contribution to GDP as a result of the changes. Many disabled people's ability to work will also be drastically reduced. In a time of economic difficulties, this is one cut that will harm, not help, the economy.

As many disabled people will be able to tell you, the changes are going to have a drastic effect on our lives, as well as on the economy. As today's report shows, "85% of Motability car users say the car has a positive impact on their ability to access health services, whilst more than 1 in 3 of those able to work say it maintains or improves their ability to undertake paid employment." Transport is still so appallingly inaccessible for many of us, as DPAC's Right To Ride protest recently highlighted. Other disabled and long-term ill people have medical and social needs for cars that other disabled people do not, and those needs are getting worse as the cuts mean more people are losing the support that might help, like social care. And as we all know, this is not a free car - we pay for it with our DLA Mobility Component. We're not talking about a free ride here, but a positive contribution that disabled people make to the economy and which in turn means we can have reliable, maintained cars through a lease scheme that we can afford. (Don't underestimate the importance of 'reliable', either, for people who have serious health difficulties or live in vulnerable situations.)

Disabled people have been concerned for some time now that our access to Motability is going to be affected by PIP. As we've been arguing, PIP moves the goalposts to such an extent that many people who now qualify for a car under DLA will no longer be eligible under PIP. Despite rather vague promises in the House of Commons (scroll down to Anna Soubry's question to see the non-answer), the government is failing to respond to these concerns. And when it comes to Motability, it looks as though it's not just disabled people who are set to lose out.

Although of course, we're going to lose out the most. I'm really quite terrified about this one. My Motability car has meant that I can pursue a university course and do part-time work as well. It looks like I won't be eligible under the PIP rules, and that will probably mean I can no longer do any paid work or studying. These are the kind of situations that the government should be worried about, but PIP shows that their back-to-work rhetoric is not actually based in reality. As we already knew. As the report puts it, "We’ll see disabled people less independent, less likely to be able to get or keep a job and more likely to close businesses or give up self-employment. Having welfare reform plans which interfere with employment prospects is nonsensical. The Government should think again."

'Reversing from Recovery' is published by the WeareSpartacus campaign group, who have drawn on Motability's own reports. They've provided template letters that you can send to your MP, the Lords or your local newspaper - go to http://wearespartacus.org.uk/letters/ for details. To spread the word, use the #ReversingRecovery hashtag on twitter. This is the kind of news that the government will not be wanting us to talk about. Let's get talking about it.

• Details of the Government's proposals for PIP, including projections of the number of people expected to be eligible for the enhanced mobility rate, can be found in the DWP consultation document, 'Personal Independence Payment: Assessment thresholds and consultation' (January 2012), available at http://wearespartacus.org.uk/reversing-from-recovery/ .

Local Housing Allowance Cuts & The Idealised Family

This is a Daily Mail link, thus the succinct and witty title:

Cameron to axe housing benefits for feckless under 25s in war on wellfare culture

Or as I would have put it: Under-25s to be denied Local Housing Allowance. Maybe.

The Conservative Government have an idealised view of normal families being wealthy, upper middle class, living in large houses with plenty of space, where everyone gets on well, everyone works and spends time outside the house and parents are committed to providing for their offspring for as long as it takes for them to get on their feet. Getting on their feet, in the mind of David Cameron, seems to mean saving up to buy a house (a neat trick at the best of times, let alone when you're poor enough to be on benefits).

I know a lot of nice families. I don't know any families like that.

My parents are great, but they didn't see parenthood as a lifelong financial burden and expected my sister and I to be independent. I started paying rent (though admittedly not much) at sixteen and moved out at eighteen. They helped my sister through university to the best of their ability but have provided no further financial assistance to either of us since. They are generous with their time and energy, I get Christmas presents I couldn't afford to treat myself to, but as far as they are concerned, they've done their bit.

By the time I was eighteen, I couldn't stand living with them any more. They were not abusive. They weren't terrible about my illness, but they weren't coping with it at all well, at a time when I wasn't coping with it at all. They struggled to see me suffer and half the time they treated me like an infant, while half the time they kept their distance and made it difficult to ask for help. They were, at that time, fantastically homophobic*. Both of them were also under a fair amount of personal stress; Mum's father had died the previous year, Dad was unemployed and I was frequently caught up in the middle of their arguments. And this was making me ill. It wasn't the only thing making me ill, but it was a big contributing factor to the suicidal depression that took hold.

As it was, I met a thirty-four year old man who took advantage of my considerable vulnerability - including my housing situation - and whisked me off to the other end of the country. This seemed like a really good thing at the time; I had a rock bottom self-esteem and was used to being treated like a child, so I wasn't able to identify verbal abuse, controlling behaviour or even the violence for what it was. What's more, being sent home to my parents in humiliation was used as a constant threat and since I couldn't live by myself, I felt this was my only other option. It was only much later, when I realised that I had friends and several family members who would be prepared to provide refuge should I need it, that I was finally able to leave.

I needed to move out when I was in my late teens. A change in legislation wouldn't have stopped my story happening, but it would remove a vital option from other young disabled women (and women who are poor for other reasons). Young and vulnerable women without any option of independent housing are going to be even more vulnerable to older abusers who don't have to work too hard to seem a more attractive option than staying with Mum & Dad.

The difficulties of living with parents are exaggerated for disabled people - folks who find it easy to live with their parents are usually extremely independent, able to go out whenever they like and only pop home to sleep off the hangover. When you're at home most of the time, need meals cooking, let alone help with bathing and so forth, there's far more pressure on that relationship. Some parents of disabled people are so used to being anxious about and protective of their kids that they take a long time to realise that their children have grown up. If indeed, they ever do.

That was my situation, but there are myriad other reasons that young people cannot live with their parents, apart from obvious things like having no parents or having terrible parents (who are by no means restricted to parents who beat you up - one exceptional circumstance the article acknowledged). These include

• Parents live in a house too small to accommodate you, e.g. they've got a smaller house now, Gran's moved into your old bedroom or you'd have to share a room with two five-year-olds and a budgie named Elvis.
• Parents' house is physically inaccessible. 
• Parents' house is an unhealthy environment for you - I had one young friend with ME who wound up in a hostel because the noise and chaos of her multiple younger siblings made it impossible for her to get sufficient rest.
• Parents make it difficult to be yourself in some way (e.g. they disapprove of your sexuality, religion or lack thereof).
• Parents live in a completely different part of the country to where the young person lives and works. Not only it is perfectly reasonable that young adults move to other parts of the country, for studying, work or because somewhere is more suited to them, but it is even more reasonable that young people shouldn't have to move back - or indeed follow their parents around the country - if something goes wrong. You might have begun to establish a career in London, only to be unemployed at the age of twenty-four, and rather than staying in London while you find a new job, you have to return to Orkney where it is impossible to apply for London jobs.

When I was twenty-nine, I was forced to move back in with my parents. This situation changed soon after and I now live less than half my time with my own folks and the rest of the time with my boyfriend's parents - who are, in fairness, somewhat closer to Cameron's ideal, only without having any money to spare. 

However, my parents struggled with this. They wanted to help, because I'd found myself in very insecure accommodation where I didn't have access to freezer space or a functional washing machine, let alone the help I needed. But they didn't understand why I couldn't get social housing with a snap of my fingers and move out again right away. They couldn't understand that Local Housing Allowance wouldn't pay full rent on any suitable place I might want to live - in fact, it wouldn't pay for any place I could reasonably live, such that I could afford to eat as well, in this not at all posh part of rural Suffolk.

My parents house is inaccessible, and while folk in other areas of the country can't get the basics, I've had to turn down all kinds of adaptations from social services because this is not my house and my folks don't want the place looking like a nursing home. They would never consider getting a vehicle that could transport my power chair, so I can't get out much while I'm with them and have to ask my boyfriend's Dad to help me on most significant journeys. And apart from all that, it's been a struggle. Not an insurmountable one, but a struggle, nevertheless.

This is a normal family. Some people reading this might judge my parents badly, but others will know how lucky I am that I've got a comfy room and a roof here and get on with them well enough that this is okay for now - especially as I don't have to be here all the time. But there is nothing remarkable about my situation or the attitudes of my folks. They love me and they have done their best for me. Even if they were to be judged badly for that, it's not something I - let alone my desperate eighteen year old self - have ever had any control over.  

* They weren't as bad as all that, really, but I love my parents, and when I think about things they said then, when I was having come to terms with my sexuality in secret, I find it very shocking and hurtful. However, I know they could have been worse, and if they'd found out about my sexuality then, they probably would have dismissed it as an abhorrent phase  as opposed to throwing me out or anything nearly so dramatic.

Guest post: Spoon overdrafts and the #WCA

This is a post by @MargoJMilne and originally appeared here on Tuesday 12th June.

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...



But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.



And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do all we can, for Karen and its other victims.

Ungrateful

I am chronically sick. My illness forces me to rely on income from benefits because I am unable to work. I have just been told that to object to the monarchy and to hold political views while I live in this country where the welfare system looks after me is ungrateful. I can't begin to address how wrong that idea is.

It stems from the same point of view that says I should lie in bed all day and think about how terrible I am to need taxpayers money to support me. The idea that I do not work so I have no right to any quality of life, to leave the house or to have any enjoyment in life.

It is the same point of view that says that I live on taxpayer's money, so every tax payer has a right to question how I spend my income, and that I should never spend it on anything nice or entertaining.  The point of view that is jealous of my Motability car because I obviously don't deserve it and I shouldn't have a better car than someone who works. (Never mind that the car provides a way for me to get to my medical appointments and to do things for myself rather than require yet more help from the state, and that I lease and pay for it out of a benefit that I already receive.)

These are the views that lead to sick and disabled people being reported for benefit fraud because someone saw them walk a short distance or carry out some task that other people feel makes them fit for work, without any idea of variable health conditions, good and bad days, of doing something despite the pain or the payback later because the task must be done.

These are the kind of views that have allowed the government to actively remove much of the support given and the progress made over the last thirty years in the lives of sick and disabled people. These are the kind of views that lead to disabled people being locked away in care homes to die quietly without bothering anyone. This government has reversed things so much that councils are actually moving sick and disabled people into care homes to save money. Back to the age where they are out of sight, out of mind.

These are the views that led the Nazis to murder 240,000 disabled people between 1939 and 1945, so forgive me if I complain about the government and hold political opinions of my own. I have good reason.

Worcestershire County Council to put disabled into care

Lest We Forget: Eradicating the 'Useless Eaters' in the Third Reich [PDF]

Like a puppet on a string

Got a letter from the council this morning telling me they've sent the DWP an order to stop my income support and pay it to them instead because of outstanding council tax benefit (that I'm not actually liable for).

So, Camden Council realised their fuck uppery and reduced the "debt" I owe them. Not cancelled entirely, just reduced...

— Lisa Egan (@lisybabe) May 10, 2012

... However they REFUSED to cancel the "stop her benefits and give them to us instead!" order they sent to the DWP...

— Lisa Egan (@lisybabe) May 10, 2012

... So I'm still having my benefits taken to pay a non-existent debt. Hate having no independent income: The state can fuck w/ me for laughs

— Lisa Egan (@lisybabe) May 10, 2012

At least I found a purpose in life: "Dance little puppet, dance!" is presumably amusing someone at Camden Council.

— Lisa Egan (@lisybabe) May 10, 2012

It's nice to serve some useful purpose. If my despair wasn't keeping someone at the council with a love of schadenfreude entertained I would merely be just a useless scrounger off the state who added nothing whatsoever to society.

The woman said "We *only* want to take about £360 a week." Which is £150 more than my entire combined weekly income.

— Lisa Egan (@lisybabe) May 10, 2012

Apparently someone who should know better has fallen for the tabloid insinuation that all benefit claimants get £500 a week.

At least I live in London where no-one cares about someone in tears going down the street. Couldn't bear it if someone asked if I was OK.

— Lisa Egan (@lisybabe) May 10, 2012

Like my life wasn't fucking miserable enough.

Crowd Mapping the affects of Housing Benefit Reform

I doubt there is anyone reading this who isn't aware that the reforms to Housing Benefit will have a huge impact on the lives of claimants. With more being deducted for non dependants living with claimants and a limit on size of property that can be claimed for amongst others big changes are underway.

Citizens Advice is working hard to protect people's rights and support those who are in difficulty. Benefit reforms are something they are watching closely, both the national organisation and the individual bureaux on a local level. A big part of their social policy work is gathering evidence as to impacts. It's really useful for raising awareness.

Hackney CAB have been using crowd mapping to record the impact housing benefit cuts are having in their area.

The map shows the area (ward not exact address due to confidentiality) where a problem has been reported. These are colour coded by type such as shortfall, overcrowding or arrears. You can the click on an entry for more details.

Looking at the map highlight the scope of the problems in Hackney. I knew there was a huge issue but seeing it like that is quite eye opening. There will however be many others in that area struggling who haven't sort advice. And thousands of others all over the country in exactly the same position.

On that website there is also a page with some stats about predicted the impact of the housing benefit cuts. It includes a stat the coalition are probably hoping no one realises.

93% of new housing benefit claims since the election are from people who work and have a low income. Working isn't going to help those people deal with the cuts.

Disabled people aren't mentioned in any of those stats. But the impact on us is likely to be bigger than on any other groups. Not are we facing ESA migration and cuts, the implementation of PIP and drastic changes to many other services a lot of us will also be hit by benefit changes which also affect non disabled people.

Hackney CAB crowd map can be viewed here

I'd really recommend contacting CAB if you need help or advice with benefits or any other issue. Advice Guide is the best place to start and as well as factsheets has a find your nearest bureau function.

A hidden benefit cut #counciltaxbenefit #welfarereform #wrb

On Wednesday I attended a forum of people who are for the most part volunteers and campaigners. The main purpose of the event was to discuss the planned changes to housing benefit or local housing allowance.

Another benefit change was also briefly discussed. One I hadn't been aware was happening.

As of April 2013 Council Tax Benefit will no longer exist in its present from. It was suggested by the facilitator at the forum that the news of this change has been lost in all the information and outcry about the planned housing benefit changes. I leave you to make your own mind up about whether this was done deliberately by the government. I did wonder just how it was I hadn't heard of this.

Council Tax Benefit is centrally controlled at the moment. You apply to your local council but the rules and money come from a central pot. It's not strictly speaking a disability benefit. A lot of disabled people do receive it but it's available to anyone who is on a low enough income. A high proportion if the people who receive it are in work and for some it is what allows them to remain in work or to take work in the first place. Currently it's possible to receive all or part of your council tax paid via benefit (claimants don't receive this money it goes straight to the council) and also in some circumstances to receive a separate discount for which you don't need to be on benefit.

So in my own case
My council tax bill is discounted by 25% because I live alone (this is called the single adult reduction and any household where only one person over 18 lives is entitled to it. Claimed via contacting the council)

My flat is a band b property however because I'm a wheelchair user the council tax due is reduced by 1 band meaning I'm liable for band a prices. For people who live in band a it's reduced by a set percentage. (this is available to anyone who needs extra space for wheelchair use or an additional room due to medical needs. Again claimed from the council)

And as I am deemed to have a low income I receive Council Tax Benefit which in my case pays the remainder in full.

If I was working I may have received some benefit and had to pay the rest. It really is on a case by case basis. I know of people who receive perhaps only £15 a month council tax benefit and pay the rest and people who receive all but £5 a month of their council tax in benefit and pay that £5

From April 2013 however there will be no set rules for the provision of council tax support. Instead it will be provided locally with each area deciding how best to use it. The pot of money to be available for this is to be 10% less than the current bill for council tax benefit and this money will not be ring fenced.

This will almost definitely create a postcode lottery in what support is available. My suspicion is that areas which are already poor at providing services such as social care are likely to also use little of the available money for council tax support. Yet another hit for disabled people and for many others who may well not carry the scrounger stereotype we crips must fight.

The government would probably argue that if people have enough income to be only receiving a small sum of council tax benefit each month - say the £15 I used above - they can afford to pay that too.

It's easy to say that when you have a high paying job, secure accommodation, good health and family who support you like most of the government do. £15 is maybe a starter in a restaurant. They miss it but it wouldn't be a big deal and come next week they probably wouldn't remember it.

It's not so easy when you're on a low income. The £15 you've just lost could mean you can't pay for your prescriptions or you can't eat for a few days or the carer who comes once a week to change your bed must be stopped. Not easy to manage without and not something you can say "oh well" and forget about.

Edited (by Lisa) to add: We've had quite a lot of Tweets related to this post. As not everyone follows us on Twitter so will have seen them RTed; I thought I should post some of the more crucial ones here to add them to the debate. The limits on what html can be used in comments means you can't embed tweets below the line.

@wheresbenefit Didn't realise you hadn't spotted it. There's more too. The 10% cut isn't allowed to be taken from pensioner households, so..

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit ...all the cut in the total pot must come from working-age households (regardless of need), which effectively means a...

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit ...higher than 10% cut in the available funding for those households.:-(

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit Some LA's like my own say they have no plans to alter CTB eligib, others say pensioners protected every1 else *shrugs* :(

— BendyGirl (@BendyGirl) May 7, 2012

@itsmotherswork @wheresbenefit We have funded @theifs to look at Council Tax Benefit devolution @jrf_uk. Report out end of May.

— Chris Goulden (JRF) (@Chris_Goulden) May 7, 2012

@itsmotherswork @wheresbenefit estimated that the cut could be as high as 25% for working age households depending on local demographics.

— Jeff Skipp (@JeffSkipp) May 7, 2012