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

The Price of Hate #BADD2012

It’s Blogging Against Disablism Day, and that’s taken me by surprise. That wouldn’t normally be a problem, last year I knew about it well in advance, but this year I’m struggling more, and – Ironically? Poetically? Absurdly? – I think the reason is the disablism I’ve faced over the last couple of years

The problems started with my application for Employment and Support Allowance, for which we have to go back to February 2010, and the day that Jobcentre Plus admitted (under ministerial prodding, having previously told me to shut up and do as I was told) that I was too disabled to claim JSA, too disabled for any of their training schemes, and needed to claim ESA instead. ESA comes complete with a massive form, in which you are expected to summarize every aspect of decades of disability in the tiny spaces provided (there was no electronic version of the form available at that point, despite it having been in use for several years – DWP’s contempt for our needs was all too apparent). So I improvised and created my own electronic version, because I can’t write legibly for more than a sentence and some of the information on my disability is so personal I hesitate even to tell my consultant, so there was no way I could ask someone else to do it for me.

To say things then descended into low farce would be giving ATOS,  DWP’s French contractor (who are IT rather than disability specialists – and it shows), an unwarranted reputation for competence as I now had to face their infamous Work Capability Assessment. At my first assessment appointment, the adjustable seating I had told them I needed hadn’t been provided. The doctor I spoke to confided that they had requested better seats, but been told to make do with the cheap, unsuitable seating they had by their area management (so, contempt yes, competence no). That visit triggered a massive flare-up in my disability, I quite literally spent a week on the bathroom floor, in so much pain I didn’t know what day it was, and the next three months doped to the eyeballs on opiate painkillers. Needless to say I didn’t get very far with my ESA claim. When I finally got back on top of things, I found ATOS had told DWP I didn’t attend the appointment. In a rare demonstration of competence DWP agreed to reinstate my claim (the ‘Oh, not again’ when being told what ATOS had done might have had something to do with it) and arranged another assessment.

By now we were into October 2010. ATOS did manage to have an adjustable chair for me this time (it didn’t help), but every other aspect of the assessment met the worst stereotypes about the way ATOS behaves. The hour wait past my appointment time - ATOS routinely overbook by 25%, having nothing but contempt for the fact their patients may find extended sitting acutely painful – left me in pain and shaking before I even got through the door of the assessment room. The ATOS doctor was abrupt, overbearing, wouldn’t meet my eyes, had clearly made up his mind I was faking before I ever entered the room and generally tried to browbeat me into saying what he wanted, and not what would get me the benefit I was entitled to. He clearly wasn’t used to someone who was able to meet him head on and argue their case intelligently and knowledgeably (though he did criticise me for having that knowledge). And then came the moment when I had to tell him ‘I need to stand up, or else I’m going to throw up’, and a look of utter panic passed across his face as he realised that my claim was utterly genuine, and that he had just spent most of the last hour abusing a patient in violation of his oath. The change in his manner couldn’t have been more marked, though he still managed to criticise me for being unable to bend my knee because of the degree of pain I was in. I walked into the room on crutches and both feet, I came out in so much pain I couldn’t weight bear on my left leg (ironically this was one of the symptoms I had been criticised for describing earlier). Fortunately this time the flare-up only put me in bed for the rest of the day, not weeks or months.

Amazingly I passed the assessment, though whether I would have without the visible flare-up is the elephant in the room. Nevertheless, the Select Committee on Work and Pensions were interested enough in what goes on in ATOS assessments, even those where people pass first time, to put my account into their report documenting the failures of the ATOS run WCA. On the other hand, I still couldn’t bring myself to apply for Disability Living Allowance. My walking difficulties mean I probably qualify for Higher Rate Mobility, but it’s marginal, and applying would mean another assessment, and likely an appeal, and that was just more than I could face.

With ESA sorted, things seemed better at the end of 2010, but 2011 brought disablism crashing back into my life. DWP contacted me to tell me that they had received an anonymous tip on the National Benefit Fraud Hotline, alleging I was working full time. The DWP are proud of their hotline and emphasise it to the public at every opportunity, yet 94% of claims it receives are either malicious, or have no basis in fact and I’m willing to bet most of that lack of basis in reality itself originates in xenophobic attitudes, whether they be related to race, disability or whatever. DWP seem to be very careful not to release any figures to show how many of those 94% of claims are directed at minority members.

I am lucky if I get out of the house for 4 hours in the week, and my car sits in open view for all of that time I am at home, so I was really interested to hear what evidence had been provided to DWP in support of this claim that I was working 9 til 5. The answer turned out to be none, DWP investigate all claims, no matter how much evidence is provided, no matter the consequences to the person being investigated.

So the DWP investigation crashed and burned the moment their investigator met me, but the stress was still enough to trigger another massive flare-up, one that lasted for 4 months, at its worst I spent an entire month without being able to sleep for more than an hour at a time, and that only while propped into a sitting postion. The overwhelming likelihood is that the claim was disability related harassment, in breach of the Equality Act 2010, but DWP refuse to release any information on allegations made by the Hotline, no matter how egregiously obvious the discrimination driving the claims is. Or to put it bluntly, DWP are allowing themselves to be used as the tool of racists and disablists in criminal harassment, and such is their contempt for us they are happy to go along with it no matter how overwhelming the evidence of this is.

And so 2011 went on, a year of fighting the government’s increasingly open disablist attitudes, fighting against the horrific Welfare Reform Bill, occasionally talking to the media about my experience of disability hate crimes, the benefit fraud allegation being a popular topic there. Yet no matter how hard we fought, attitudes to disability seemed to go from bad to worse, with even BBC getting in on the act, whether it be Dom Littlewood chasing down another supposed scrounger on Saints and Scroungers, John Humphrys claiming we are a generation without the will to work, or Panorama telling everyone that any disabled person who dares to sail or drive a good car is clearly a fraudster (I had just got back from a holiday sailing with friends, that was the first time a TV programme had ever left me too intimidated to leave the house). When I talked about disablism on the BBC local TV news, they even brought in the local Tory MP to counter me and claim that people were perfectly entitled to be angry with us. 

I even managed to get the campaigning group 37 Degrees to recognise that disabled people couldn’t hope to win their popularity contest method of choosing campaigns, but where they spent well over a year campaigning against the NHS Bill, their sole intervention on the Welfare Reform Bill came not at the eleventh hour, but at 11:59:59. Needless to say it didn’t help, but it did show that when it comes to appealing to humanity’s common goodness, crips will lose to badgers, or trees, every time.

And then, just at the end of the year, it happened, a brown letter lying on the floor in front of the letterbox. ATOS wanted me to attend another WCA.

I tried to fill the form in, I really did. I even tracked down the electronic version, but every time I tried to fill it in I felt physically sick and my pain levels soared. I lost nights of sleep, spent days curled up in pain, and ultimately I realised I couldn’t do it. I honestly don’t know what the state of my claim is, it’s fairly obvious DWP have suspended or dropped it (no money going into my account), but I simply can’t bring myself to open the letters from them, or anything that even looks like it might be from them.

I have finally had to realise that those farcical ATOS WCAs, amplified by the disablism that runs rife in the media and taints attitudes on the street, have actually done me some very real damage, and that, like any other traumatized abuse victim, I hesitate to put myself back into the environment where I was abused and where the likelihood is that I will face more abuse. I don’t know where I go from here, even if I submitted a WCA claim today, I would get no money from it, because Time-Limiting of ESA kicked in yesterday, and anyone who claims Contributions Related ESA will lose their benefit after a year, which I have already had. The government accepts that tens of thousands of ESA claimants are genuinely unfit for work, but says it is unreasonable of us not to have adapted to our disabilities after a year and not to have found another job, no matter the rampant disablism of the jobs market, no matter the millions of non-disabled people out of work, no matter the reality that disability is generally for life, and if that attitude isn’t disablist, then what is?

I could still apply for DLA, but HRM isn’t remotely enough to live on, and I would face precisely the same attitudes in its assessment. Worse, it is being replaced by Personal Independent Payments, and the companies shortlisted to run PIP's assessments are a rogues gallery of those with the most dreadful reputations for dealing with people. What exactly is it about a company that spends its time playing prison guard by shoving immigration detainees around the system that qualifies it to assess how disabled I am?

I have been trying to write this article since the New Year, but the fear spilling over from the WCA thing has left me struggling to manage at all. I seem to be climbing out of it, slowly, but it needed the impetus of Blogging Against Disablism Day to let me, force me, to do this, and I still have to find a way to face my WCA demons. No matter our efforts, Disablism is not just alive and well, but thriving.

Postscript 1: Leveson

In grim irony, Blogging Against Disablism Day has seen Katharine Quarmby, author of the stunning and sickening expose of disability hate crime ‘Scapegoat, Why We Are Failing Disabled People', writing in the Huffington Post to say that the Leveson Inquiry into Standards in the Media has refused to call either her or any of the disability organisations who have submitted written evidence. Apparently the systematic demonization of disabled people by the British media is not considered important enough to justify Lord Leveson taking an interest.

Postscript 2: The Grim Truth

Also released today was a survey commissioned by the MS Society. Its conclusions were:

1 Briton in 4 thinks disabled people should expect to be discriminated against

1 Briton in 4 thinks we exaggerate our disabilities

1 Briton in 4 thinks we are being unreasonable if we expect to go to a bar or a club in a wheelchair

So that’s one Briton in four is openly disablist and proud of it.

Guest post: Disability benefits and the self-made mouth #badd2012

This is a guest post from @indigojo_uk that originally appeared here. It is reproduced here as part of Blogging Against Disablism Day 2012 as it's a write up about a disablist appearing on the radio decrying benefit claimants.

Last Saturday night, there was a debate on the Stephen Nolan show, a late-night phone-in on the BBC station Radio 5 Live, in which the former Apprentice contestant Katie Hopkins, who styles herself “the only candidate to say ‘no’ to Sir Alan” [Alan Sugar of Amstrad, who runs the TV series, The Apprentice], defended the government’s cuts to disability and housing benefits and Lisa “Lisybabe” Egan and one of the other callers tried to oppose her. Hopkins is clearly of the opinion that disability benefits are given out to an awful lot of people who aren’t really disabled or don’t deserve them, as shown by this tweet:

If people's disability benefit was handed out from the top rung of a ladder I reckon most would climb the ladder to get it.

— Katie Hopkins (@KTHopkins) April 25, 2012

Her stance was that people need to rely on their own resources rather than the state as we live in “austere” times, a line that she trotted out again when Lisa reminded her that people had paid National Insurance and that the whole idea of an insurance scheme is that it pays out when things go wrong. As for housing benefit, she said she did not see why the state should pay for people to live in the south-east, without apparently realising that the majority of housing benefit recipients are actually in work. She also posted this rant about child benefits on her blog, claiming (without the slightest evidence, of course) that “for so many of our poorer families in this country the child does not benefit at all – but rather the overweight mother guzzling McDonalds with her large brown Primark bag bulging at her feet”. You can listen to the show here for the next week. (For non-British readers: a Primark bag does not signify affluence.)

The issue of housing benefit is not the main concern here, except to state that the majority of recipients are in fact in work, and much of it pays for the shortage of affordable housing stock, the political decision to sell off council houses, and the runaway house price inflation caused by the credit boom which ended in 2008. Disability benefits are a burden society has always had in one form or another, because there have always been people whose physical or mental condition, whether temporary or permanent, either does not allow them to work, or makes them a less attractive proposition to employers for one reason or another. There are two separate categories of disability benefit: the Disability Living Allowance, which covers the cost of being disabled (such as for care and mobility aids) and is paid regardless of whether the recipient is working — indeed, it may help them remain in work — and the former Incapacity Benefit, which supported people who were unable to work, whether due to illness or a complication of their disability. Many of those who currently receive DLA would previously have been institutionalised, a practice which ended because the public realised that there were rampant abuses, the care was often impersonal, taking no account of people’s needs and abilities, and there was little dignity or privacy in many of them, besides the fact that the vast majority of people do not need to be housed apart from their families and the community. They were paid for out of state expense as well, and the land they stood on is now in many cases prime real estate and the grand buildings have been demolished or converted into luxury flats, so a return to that is going to be extremely expensive as well as unsatisfactory for all concerned.

Hopkins introduced herself by saying that “as a taxpayer” it had become obvious to her that people could live where they choose, have as many children as they choose, and smoke if they choose and have the state pay for the consequences of that, and that benefits should be a privilege and that people should “look to themselves” rather than the state to provide for them. She also invited the others to come with her on “claimants’ day” to the benefit office to see people collecting their benefits in their pyjamas. (I was on Job Seekers’ Allowance for two years and I almost never saw people in the Job Centre in their pyjamas.) Lisa asked her if, in the event of her getting cancer or having an accident, she would try to use the national insurance contributions she had paid, and Hopkins replied no, that she had savings that would provide for her family in such circumstances, money she had made by “grafting” and getting up at 5:30am every morning to provide for her family. Further enquiries reveal that Hopkins has epilepsy, and if she expects everyone to rely on themselves rather than the state, she should explain whether she has used the NHS to provide either the medication or the care she needs such as consultations to decide which medications to take and so on, and hospitalisation in the event of a severe seizure. In any case, she is not the only one who gets up at that time or earlier, and the majority of us do not make a lot of money because our jobs do not pay us that much. Hopkins got lucky; she does not mention on her website that she invented anything or has actually run a business doing anything other than selling advice to other businesspeople and public speaking. She is, in other words, a professional mouth, someone with opinions who gets paid for them.

When Egan asked her if she really was so cruel as to insist that people with cancer not receive help from the state, she fell back on her claim that the benefit system was too generous. She claimed that the people she “accosts” in their pyjamas get “home allowance” of up to £400, job seekers’ allowance, disability allowance “although they’ve managed to walk very well to the job centre”, and that it makes it not worth your while to work part-time. In fact, having been on JSA, the last time I received it, it was about £65 per week, which is about a day and a half’s average pay and just enough to buy the bare essentials for a week with. The reason it is “not worth your while to work” is because the money is deducted from your allowance and the allowance is stopped if you have two days’ work that week, even if it is a one-off booking through an agency during a slump, so unless you get a permanent job or a prospect of a lot of casual work, accepting a work booking could well leave you worse off. This is simply a consequence of the version of means testing that is used for JSA, and it is one of a number of circumstances in which means testing is a proven disincentive to work.

Nobody really confronted Hopkins with why some benefits need to be paid, and disability benefits in particular. We either pay for people with disabilities to live at home, and for the necessary adaptations and home care arrangements, or we pay for them to live in a care facility, when the land is bought, and they’re built, and all the cooks, cleaners, nurses, managers and others are hired, at huge expense — there is no third option, unless you count leaving them to die or leaving them to beg on the streets. Some people with disabilities can work, and others can if they are provided with some assistance, or if people help them to find a niche they can cope with working in, or helps them through (or past) the interview process, and the benefits made to these people may be more than recouped in the taxes they pay because they are then able to work. Others cannot, either because they do not have the intellectual capacity, or because their physical limitations make it impractical, or because their health complications or mental health problems mean they will not be able to work reliably, or because prejudice or inconvenience means people will not hire them. Of course, some people with disabilities are very wealthy and can afford to pay for care themselves, and some can run their own business, but this is not the majority and the costs of being disabled or of having a long-term medical condition add considerably to the cost of living, which is why we have a health service and a welfare system.

Hopkins clearly does not know much about what she is talking about here, only that she doesn’t want to pay to finance anyone else’s lifestyle. She promotes herself as some sort of “self-made”, self-employed person who “tells it like it is” as a social commentator and public speaker (reinforcing her “tough” image by boasting that she went to the Sandhurst military officers’ academy), but on this evidence that seems to consist of making bigoted and ill-informed comments that might go down well with all the well-paid drunks at a corporate party but do not add much to this discussion. There is a lot of talk about scroungers in pyjamas claiming benefits that were enough to live on comfortably without working, yet no solution has been given as to how to get the idlers off benefits without impoverishing people who are in real need and are unable to work; the government did not come up with one and neither has she. Yet again, British talk radio allows a serious and important debate to descend into a slanging match by giving undue prominence to an opinionated but uninformed guest — at the expense of the licence fee payer!

Image source: The Sun.

Across the pond

We all know that DLA and social care cuts are going to result in more disabled people being institutionalised. When the money to fund independent living is taken away you have no choice but to acquiesce to being banged up. Tonight's Panorama is one of many recent examples of how horrific institutionalisation is. Remember Winterbourne View?

Over here disabled people have almost no support from the mainstream in fighting the cuts that will ultimately result in more people being incarcerated in these places. The media campaign decrying all disabled people as faking scroungers being so pervasive; people are even less likely to stand alongside us than they ever were.

Not so in America.

Today ER star Noah Wyle has been arrested at a disability rights protest in DC organised by ADAPT. They're fighting the proposed cuts to Medicaid; the scheme that funds independent living over there.

Photo tweeted by @NationalADAPT

Wyle is the second ER star to be arrested for protesting in recent weeks. Last month George Clooney was arrested protesting outside the Sudanese embassy in DC. Does anyone have Alex Kingston's number? I ask purely for activism purposes, obviously... *innocent face*

It's both exciting and saddening. Exciting that a Hollywood star is willing to stand up for disabled people's basic right to live outside of an institution. But saddening because you can guarantee that it'd never happen over here.

Edit 24/04/12: Here's a brilliant interview with Wyle in which he explains that: "To institutionalize a disabled American costs four times as much than to give assistance for independent living."

It's the same story here, of course. Disability Rights UK have carried out an impact assessment of the cuts to DLA and found that the costs of cutting the benefit will wipe out any planned savings.

Guest post: Personal Independence Payment – The Next Great Welfare Train Crash

This is a guest post from @johnnyvoid and originally appeared here.

Brutality combined with incompetence are becoming the hallmark of the current Tory administration and the plans to abolish Disability Living Allowance (DLA) are riddled with both. The Government is driving ahead with their plans to replace DLA with the new Personal Independent Payment (PIP). The aim of this is to strip benefits from a fifth of disabled people.

This will be achieved by using an independent medical assessment as the key part of the decision making process when considering a claim for the new benefit. That assessment will be carried out by a private company.

We already have an effective model of how the new scheme might operate. The Work Capability Assessment (WCA) is a short computer test carried out by French IT firm Atos which is used to determine eligibility for the out of work sickness and disability benefit Employment Support Allowance. For everyone other the Government and Atos themselves, it has been an unmitigated disaster. The constant assessment and re-assessment regime has driven an increasing number of people to take their own lives. A recent Daily Mirror investigation found that 32 people a week die after being declared ‘fit for work’ by Atos. Around 40% of appeals against Atos’ decisions are successful and the appeals system is in meltdown due to the number of cases being brought.

Despite some tampering around the edges due to a recent review of the process, there are no plans to abolish or significantly reform the WCA. This should serve as a stark warning to people facing the new PIP testing regime. The Government are happy with Atos the way things are. Lots of people are losing their benefits. That was always all they wanted.

The stated agenda of PIP is to remove benefits from 20% of disabled people. All other mealy mouthed attempts at reform are secondary to this. It will be down to the private sector to carry out this cull. In many ways the PIP process will be identical to the WCA. It may yet even be Atos who carry out the assessments.

This will not only prove traumatic for the people forced to undergo demeaning health tests, but will bring devastating social costs. The Government’s plan that “entitlement will depend on the person’s circumstances and the impact of their health condition or disability on their everyday lives” is vague and open to all kinds of interpretation.

How it will be measured in practice is anyone’s guess. Given it’s the private sector who will be carrying out the bulk of the work the answer is likely to be the cheapest way possible. It will be difficult to imagine how, for example, being in full time work can be ignored by any assessment. Under the WCA claimants who have admitted to watching Eastenders have had it used against them as evidence of being ‘fit to work’. It is therefore very likely that having a job will come to be seen as a disqualifying criteria for claiming PIP, if not formally but as a reality of people’s experiences. This may not be the Government’s intention, but in practice it seems unavoidable.

Atos, as well as human rights abusers G4s and private sector sharks Serco, are some of the companies believed to be bidding for the PIP contract. They should be warned it is a thoroughly poisoned chalice. Atos have already seen their reputation destroyed by the WCA, with the name of their company becoming a dirty word. This will seem trivial should they take on the PIP Assessments.

DLA is a non means tested benefit designed to help people meet the additional costs of disability or ill health. In many ways it should be seen as an adjunct to the NHS rather than a benefit comparable to those paid to people unable to work. DLA is used for things like additional transportation costs, specialist equipment or personal care. For many working disabled people these things are essential to help them remain in work. As Disability Rights UK have recently pointed out (PDF), the removal of DLA from over half a million people may drive many into unemployment.

People currently claiming DLA include doctors, lawyers, journalists and MPs. Whilst those claiming out of work benefits are by their very nature economically disempowered (in that they don’t have jobs and are forced into the poverty of the benefits system) many DLA claimants are highly skilled professionals. We could face the unedifying spectacle of Doctors having their health and disability needs assessed by the two bit NHS rejects at Atos. Disabled legal professionals may yet be forced into the appeals system and are likely to prove ferocious. Any company which takes on the PIP contract will face unprecedented resistance at grass roots level, from people in some cases far more qualified than their own assessors. It will be doctors, lawyers and journalists lining up alongside benefit claimants to take action against the companies concerned.

Imagine becoming public enemy number for not just the three million plus DLA claimants, but their friends, families and carers. People with many more skills and resources to fight than those on out of work benefits. Every mistake, appeal or careless remark by an assessor will be scrutinised. Assessment centres and other business sites could find themselves thronged with disabled protesters. An avalanche of legal challenges seems almost inevitable.

It is possible that on the ground a two tier process will develop. Disabled doctors and lawyers may be informally waved through the process in the hope they won’t make too much fuss. Can we honestly believe that David Blunkett or a Paralympian Gold Medal winner will face the same kind of scrutiny as an out of work disabled single mum living on a Council Estate?

The alternative is that the PIP assessment will become an unofficial ‘means test’. Those in work, or able to lead more active lives, may find themselves punished as any sign of independence is used against them. However the upcoming farce plays out it will prove catastrophic not just for disabled people themselves but for the wider credibility of the system.

As we have seen under the WCA regime, there will be more suicides, more appeals and more people having conditions made worse by the stress of endless testing. The Government says that only in very few cases will PIP be awarded for life. This will mean for example, that people who may have lost a limb will be forced back to continual re-assessments, presumably to check it hasn’t sneakily grown back.

Despite lurid headlines DLA is not an easy benefit to qualify for. A wealth of medical information is required, from GPs, consultants and other health professionals. As with the WCA, this is likely to become secondary to the short assessments carried out by private companies. As more disabled people are forced into poverty it will be down to Local Authorities and the NHS to pick up the slack. Just like so much of this Government’s Welfare Reform, it may yet cost more money to go down this road than simply leaving things as they are.

The Government are currently consulting on the changes and you can make your feelings heard here. If past consultations are anything to go by then don’t expect them to listen. The over privileged tory toffs have made their intentions well and truly clear. Don’t think that this scum will shed any tears for those driven into poverty or even suicide by these changes. As Maria Miller, the Minister for Disabled People has already said, the cost of disabled people is simply ‘unsustainable’. That tells us everything we need to know about this Government’s attitudes towards sickness and disability.

Join the growing protests against Welfare Reform including action called in Central London by Disabled People Against Cuts on the 18th April (tomorrow!).

PIP Survey - Can you Help?

The wonderful Sam Barnett-Cormack and wearespartacus.org.uk have designed this survey to help them put together an official Spartacus response to the PIP consultation.

We'd be REALLY grateful if you could spare a few minutes to take part. The more people that reply, the more reliable the results will be.

We don't feel that we should speak for you - but would love to base our response on what YOU think and need.

Thank you so much.

SURVEY

Guest post: When "the vulnerable" have everything to fear

This is a guest post from @Spoonydoc and originally appeared here.

Many disabled people are currently living in fear since the welfare reform bill became law. Some benefits are due to be replaced with stringent new criteria which mean that many disabled people will no longer qualify for support. With social services cutbacks many will be left with no help whatsoever.

I am not quite in that position. I am among what the government likes to call "the most vulnerable". Currently in receipt of the highest levels of disability benefits and having easily passed the new dreaded draconian Work Capability Assessment I am in the support group of what is called ESA and am not expected to be able to work again. Having seen the criteria for the new benefits it is clear that even being as harsh as possible, I should easily qualify for the highest rates of these too.

With the government having promised that the reforms will see more support diverted to the "most vulnerable in our society", you would therefore think I have nothing to fear.

You couldn't be more wrong.

I currently live independently.
As I live alone I receive an extra payment called SDP (severe disability payment) which helps cover the extra costs of care and disability.
However a large portion of this and my other benefits goes to social services and in return I receive direct payments, money with which I employ carers to help me with every day tasks such as getting dressed, washed, eating, shopping, etc.
My LHA (Local Housing Allowance) is upgraded to a 2 bedroom rate so that carers or family can stay when my illness is so bad that someone needs to stay overnight.
My flat was adapted 8 years ago so that it is wheelchair friendly.

When the changes start coming in next year, all this will go.

a) SDP is being abolished completely.
b) The 2 bedroom allowance is no longer guaranteed.
c) I will continue to have to pay most of my benefits towards my care. I cannot manage without it.

I calculate that I will be around £80 per week worse off (around half from SDP and half from LHA).
At first I might be ok. Apparently there will be a transitional protection as far as SDP goes, which means I will only be £40 worse off and might be able to get that together somehow. As time goes on however, that will be eroded by inflation and benefit freezes.

The second big issue is : I cannot manage without a second bedroom.
Even if I could, there are no wheelchair friendly 1 bedroom flats available for rent privately (I've been looking). As far as social housing goes there is little wheelchair accessible housing available and in any case I am not allowed a bungalow until I am 50, ie in 17 years time!

So I either have to go into non wheelchair accessible accommodation without provision for my carer or go bankrupt!

The only other solution is for me to go into a care home at the ripe old age of 35. Ironically this will cost far more than if I were to stay put and continued to be paid benefits.

Before the election David Cameron said "If you are sick, disabled, frail, vulnerable, or the poorest in society you have nothing to fear."

Sir, please look me in the eye and say that now.

32 deaths a week.

I haven't been able to write here for a while. After the Welfare Reform Bill came into law it has all felt a bit pointless. I felt helpless, that all was lost.

Whether or not that is the case remains to be seen, but I've been prompted back into action after seeing this story: 32 die a week after failing test for new incapacity benefit.

32 people every week.

We've used the Freedom of Information Act to discover that, between January and August last year, 1,100 claimants died after they were put in the "work-related activity group".

This group - which accounted for 21% of all claimants at the last count - get a lower rate of benefit for one year and are expected to go out and find work. [...]

We don't know how many people died after being found "fit to work", the third group, as that information was "not available".

But we have also found that 1,600 people died before their assessment had been completed.

Go and read the whole thing, and kick up a fuss, put this to the top of everybody's agenda. It can't go on.

Tell Me Lies, Tell Me Sweet Little Lies #esa #wrb #nogobritain

It all sounded such a positive idea; reform Incapacity Benefit by introducing Employment Support Allowance to ensure those who are too sick or disabled to ever work receive life long financial support, those who could do some work with the right support get that support, and those who've been 'gaming' the system get kicked off the benefit. What's not to like about that? Those in need of protection get it, those in need of support to work receive it and the 'drains on society' drain jobseekers allowance instead of sickness benefit so hard working tax payers can rest easy knowing their money is going to the right place. It's such a lovely idea that its impossible to argue against. It's why welfare campaigners have had such an uphill struggle to explain to the public that the "I don't mean people like you" they always exclude from benefit scrounging justifications are actually almost all "people like me" and not the amorphous drain on society type that everyone knows exists...until you actually ask them to name just one person they know and head scratching ensues.

Support for the genuinely sick or disabled is so entrenched in British thinking that it doesn't get questioned until people are in that position themselves and discover that at the time they are most vulnerable those nice little bungalows and free cars they thought would be there to enablee the practicalities of life never really existed. It's why slashing welfare can be done on the premise that it won't affect 'people like me', because until you don't know any better you'd assume people like me are getting all they need to support their ill health or disability.

We've had 18 years of laws the government insist make Britain accessible to disabled people, laws now being used to justify removing financial benefits designed to help us pay for those access needs. Laws which have seen great progress but that are so poorly enforced that a Baroness found herself needing to crawl off a train dragging her wheelchair and a famous yachtsman told he could not travel on a train because "those things will damage the floors".

Against that background of promises to always protect the most vulnerable its proved impossible to explain to the public that the welfare cuts are disproportionately falling upon sick and disabled people. Impossible to demonstrate that this was in fact a giant exercise in simply redefining what to be sick or disabled means, whilst the media floundered around struggling to understand the different names of benefits, what they are for, let alone what losing that support might mean. As campaigners, we always knew what that would mean was being unable to alert the public to the long term human consequences of this until after the changes became law and enough time had passed to collect evidence of what happens to people.

That evidence is still at best patchy, and will gradually emerge over the next 18 months as the tribunal service struggle to process soaring number of appeals against denial of benefit. It will continue to be obscured by the confusion between responsibility caused by outsourcing the medical testing part of the system to a private company not known for their competency, leaving the final decision with an administrative employee of the Department of Work and Pensions and the appeals process by another arm of the civil service. A private company who have failed to provide adequate access to examination centres, failed to inject any humanity into their working processes, frequently failed to acheive the required standards for those working processes but been astonishingly successful in obscuring the true heart of this problem, the deliberate redefinition of sickness and disability designed by the Department of Work and Pensions.

Because, really that's the key to this issue. And slowly, but surely now the evidence will start to emerge that these cuts are very much targeted upon 'people like me', people like the mum with a fractured spine who's lost her adapted mobility car, the mum who used to be a nurse, but now recovering from breast cancer complicated by severe osteoporosis declared fit for work, or the 1100 people who died last year after being found fit for some work and put in the Work Related Activity Group. That's the same group of people now receiving letters to inform them the benefit they believed they'd paid for all their working lives is now being time limited retrospectively if their partner earns more than £7500 a year. These ARE people like me, and when life brings the events we all most instinctively fear they will also be people like you.

So as the government continue to tell their sweet little lies, remember that one day "people like you" will become "people like me", the people you so wanted to believe were somehow so different from you they could be excised from conscience with clever words and promises to protect.

♫...Let me take you by the hand and lead you through the streets of London; I'll show you something to make you change your mind. ...♫

Visit any American city and it's unlikely you'll get to the end of your first day before you've seen a rough-sleeping wheelchair user. Most seem to sleep in that awkward contorted position usually reserved for trying to sleep on a plane, though I have seen people try and achieve some semblance of horizontalness by laying with their head and upper torso on their chair seat and their butt and legs on a bench or low wall. That's the wheelchair users that haven't had their legs blown off in service of their country, of course. I'm assuming that if you laid down on the floor to sleep in a doorway that your essential mobility aid wouldn't still be next to you in the morning.

The first time I went to America it really shocked me. I'd never seen a wheelchair user sleeping rough in the UK. My parents explained that it's because our health service and welfare state were less brutal than there and we don't tend to leave wheelchair users destitute. I was 11 when I went on that trip and the only thing I'd known was Thatcherism: She was elected as PM 13 days before I was born and in October 1990 when I left this island for the first time she was still a month short of handing the reins over to Major.

Our system has always failed people with mental health and substance abuse problems and they make up a significant proportion of our rough sleepers. Wheelchair users aren't immune from ending up without a home to call their own - especially down to the fact that accessible housing is in such short supply - but we tend to end up as hidden homeless rather than living on the streets.

For 21 years since that first trip to America it remained the case that I never saw a wheelchair user sleeping rough in Britain.

As more and more applications for disability benefits are turned down disabled people are finding it increasingly hard to make ends meet. Things will get worse in the near future when people in WRAG claiming cESA start to lose their income, and yet worse still in little over a year when half a million genuinely disabled people lose their DLA.

The fact that cuts are already starting to bite can be seen on the streets of London: Over the last few months I've seen 3 different wheelchair users hunkering down for the night on the streets of my city.

Welcome to compassionate Conservatism: Even more brutal than Thatcher.

Budget 2012: the disabled marginalised yet again, with worse to come?

Yesterday's budget contained a kick in the teeth for disabled people, quickly followed by a punch in the face.

The Chancellor's retreat on child benefit, moving the threshold for ineligibility from those earning over £43,000 to those earning over £60,000, was a bare-faced example of the Government looking after its own voters. When the planned benefit cut was announced last year there were howls of outrage amongst higher rate earners, and the Tories, mindful an election has to be fought in perhaps two years time, decided to try and save their own skins.

How is this relevant to disabled people?

When the recent Welfare reform Bill passed through the House of Lords, three defeats were enacted on the Government as the Lords chose to make changes that they believed would safe-guard some of the most sick and disabled in the country. One of those changes was to extend the length of time that people on contributory-based Employment Support Allowance could claim the benefit. The Government proposed that those people place in the Working Capability Group of ESA (so claimants who are too ill to work but should be able to in the future) could only claim the benefit for a year. The Lords voted to extend this to two years to ensure that people had enough time to get better before being forced into work. Macmillan cancer support for example argued that annually 7.000 cancer patients, routinely placed in the Working group of ESA, take longer than 12 months to recover.

Although the Lords followed due democratic process to enact these changes, they have not come into force. The Government used 'financial privilege' to block these amendments. In short, MPs cried "Sorry, no money!" and did so in a way that has seen no precedent.

But suddenly come budget day, the Government discovered a stash of cash to save the child benefit of higher rate tax-payers, those who are doing ok in life, and yet still no money to extend ESA for those who are too sick to work through no fault of their own. More worryingly for democracy, the Government places greater value on the opinion of its voters then on the democratic process of a Bill being passed into law.

The second fear hidden in the budget was Osborne's casual mention that Ian Duncan Smith would have to find a further £10 billion of welfare cuts on top of the £18 billion already slashed from these bills. The biggest slice of welfare is spent on old age - with today's vicious headlines about a granny tax I can't see the Government making any further cuts to pensioners. Child benefit cuts now seem completely off the table, a decision that Ian Duncan Smith may come to resent Osborne for as he frantically tries to cut £10 billion.

So where can more cuts be found? Housing benefit perhaps, childcare credits even, but a clear forerunner would be disability benefits. Disability Living Allowance is already scheduled to be scrapped next year, and replaced by Personal Independence Payments (PIP). In the Government's last spending review it arbitrarily decided to cut recipients of PIP by 20%, before it had even decided the criteria for eligibility or assessed the needs of a single disabled person.

What's the betting that in the next spending review the Government decides to save 25% or even 30% from the PIP bill? I, for one, am very worried.

As first published on nhsbuff