Guest post: Some conditions are more equal than others

This is a guest post from @DocHackenbush.

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

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illnesses and conditions much more detrimental to leading a normal life that will have their entitlement to benefits withdrawn after only twelve months.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

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

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/

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.

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!).

Guest post: Modelling disability

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

Models. Not glamorous young men and women. Not scale representations of trains. But understandings of disability.

Models are simplified ways of describing systems: they help us understand what's going on, in a way that can influence social policy and public debate, and can also enable new and potentially more effective insights and methods of intervention,

So why am I telling you about them? Well, they've become very important in the welfare reform discussion.

In the Committee stages of the Welfare Reform Bill, the Government committed itself to the use of the social model of disability in the Bill. In the social model, disability arises from society's response to people with impairments. Physical, mental and sensory differences or impairments don't have to lead to disability unless society fails to react to them and include people regardless of their individual differences.

That puts the onus on society to make work, education etc accessible for disabled people. Disabled young people have just as high aspirations as their able-bodied peers, but are 2½ times as likely to be out of work, and those in work earn 11% less.

But earlier this week, when the Bill was being discussed in the House of Lords, Lord Freud announced that the Government had decided that the Bill should be based on the biopsychosocial model of disability instead. This model claims that biological, psychological and social factors all play a part in human functioning, in the context of disease or illness.

The biological component of the theory comes, clearly, from within the individual's body. The psychological part encompasses thoughts, emotions and behaviour, and looks for potential causes of a health problem such as lack of self-control, emotional turmoil, and negative thinking. The social part investigates how different social factors such as socioeconomic status, culture and technology can influence health.

A lot of its application is in illness behaviour. When someone becomes ill, they get certain rights (eg they don't have to work) but also certain responsibilities (eg they have to do what their doctor says and do their best to get well).

All sounds very sensible. Things worth taking into account. So what's the problem? Why am I writing a blog post about it all?

Well, for one, the biopsychosocial model is about health and illness, not about impairment and disability. It has nothing to say to the situation of someone who was, for instance, born with cerebral palsy. Even for the majority of us with long-term illnesses, "illness behaviour" is mainly irrelevant: we're not going to get better, no matter how hard we try.

Obviously some of us are going to recover, go back to work, lead normal lives again. That's wonderful. But many of us are not. I have progressive MS. I'm not going to be getting better - I'm going to get worse, and there is absolutely no way I'm fit to work at present.

But because the government has chosen the biopsychosocial model, there's a very real risk that after a year I'll be forced onto Jobseeker's Allowance: and face having it removed if I don't turn up for interviews because I'm unable to get out of bed. Or even, maybe, get a job, somehow (given the current climate), and get sacked because I fall asleep uncontrollably at my desk.

So, models. They're useful things, but they're kind of like jigsaw pieces. You can't just ram one in where you'd like it to go, and hope nobody'll notice - a bit of sky in the middle of the green grass, that sort of thing. The model has to fit. And the biopsychosocial model just doesn't.

PS I didn't want to make this post too long, so I'm stopping there, with models. It's very much worth your time reading up on the dubious nature of the DWP's links with the Unum Research Centre at Cardiff University, though. This is a good place to start.

Guest post: Lords vote tomorrow, Jan 17th

This is a guest post from Hossylass

On Tuesday the Lords vote on abolishing DLA and replacing it with PIP.

The Spartacus Report (Responsible Reform Report) was written because the Government did not consult correctly on PIP, and lied about the results.

We have to stop PIP, it has no foundation and many people will be financially penalised for not being the "right sort of disabled".

The criteria given so far are minimal, and many people simply will not fit into the 15 tick box questions.

No-one will be exempt, everyone will be assessed, in a similar way to ESA.

The only way we can stop this is to persuade the Lords to ask for a pause in the process so that PIP can be discussed further.

All the things you need to write an email are available in OuchToo. There are lists of the Lords emails, there are template letters, guidelines of what to include and a thread about PIP and what people think they will lose.

One last push is what is needed - remember disabled people chained themselves to the Gates of Downing Street, and there should be "Nothing about us without us".

Please find time to send the emails, you can do it in bulk and it will only take a few minutes.
Save our DLA - only we can do it !

And finally, many thanks for all your efforts, for all your tweeting, report sending, facebooking, emailing. Never before have so many disabled people done so much together, and last week we frightened the Government and changed the minds of the Lords.

Lets do it again this week.

Many thanks again.

Guest post: BBC bashes benefit claimants two weeks running

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

I’m a little late writing about this, but I watched John Humphrys’ programme on BBC2, The Future State of Welfare, a few days after it was broadcast (I was working a night shift the actual night), and last week the BBC broadcast a Panorama programme, Britain on the Fiddle, which exposed people claiming benefits while driving Bentleys, owning yachts and houses in France, and running pubs. In between the “damning exposé” of the wealthy benefit cheats, they also showed people being caught using blue (disability parking) badges illegally (in one case, when the disabled person was not present). This was obviously done to make it look like the programme was defending the interests of “the little people” against the cheats, but it was entirely irrelevant to the rest of the programme.

Humphrys’ programme started by interviewing various people who were claiming benefits and giving some recollections about “his day” when he was growing up in Splott in Cardiff. Apparently back then, not working carried some degree of stigma, and there was one man in the neighbourhood who did not work, for some unspecified reason, and he was shunned by the community for that. The reason could, of course, have been quite genuine — he may well have had a disability or some health problem that he did not feel comfortable discussing with all and sundry. He interviewed various benefit claimants, including a family of several children with a single mother, a long-term unemployed family in an ex-industrial northern town where the father had calculated that working would not make him much better off than staying on benefits, a family from Spain who were on housing benefit so they could live in Islington, and a woman with ME who had been failed by her ATOS assessment (although she easily won on appeal).

The whole thrust of Humphrys’ argument was the need to cut the benefits bill, ignoring the issue of whether what the bill pays for is worth paying for or necessary. The reason why a modest flat in a district close to central London, where the work is, costs so much was conveniently glossed over (it was nothing like that expensive twenty years ago, before prices and rents became inflated by the sale of council properties and buy-to-let mortgages). Why a man in a northern town regards the work that is available as not worth doing was not asked (the fact is that there were serious jobs in the north until the factories and mines were closed down, and a large town like Middlesbrough cannot survive with just supermarkets and council jobs). The history of unemployment and benefits in the UK is a history of political decisions — unemployment figures (derived from numbers of dole claimants) used to threaten workers not to go on strike or demand rights, incapacity benefits later used to artificially reduce unemployment numbers, and so on. None of this is of the current claimants’ making, so we saw someone who had never had to worry about finding a job, not for a good few decades at least, making someone from a community which had been deliberately impoverished look like a scrounger. If you have ever had the notion to tell someone, “I’ve worked hard all my life”, you should consider yourself lucky that you had the opportunity to do that. Some people do not.

Humphrys also travels to New York to interview officials and charity workers involved with the “workfare” scheme there, and those dealing with its fallout. Early on, he presents it as a system whereby benefits are delivered only to those who prove that they are looking for work — the same is true of Jobseekers’ Allowance in the UK, in which claimants are required to keep a diary of their ongoing search for work, and are given jobs to apply for. Towards the end, he showed some of the soup kitchens and charity food outlets that have appeared in New York to serve people who are unable to receive welfare as their two-year allowance has run out with no work in sight. He also interviewed two women who had been in white-collar jobs and made redundant, and were afraid for the future as they had found themselves unable to get any more work. This provided some counter-balancing to the sermons from middle-class men in suits about personal responsibility (one of them claimed that people went back on welfare because they lacked the personal organisation to keep a job. But it did not seriously examine why people lost jobs and could not find anything else: people will not employ them, often because they are “overqualified”, and it might be assumed that they will not stay if employed, or they do not have experience, or the social skills the human resources department decrees that the job requires.

Last week’s Panorama really did bring the programme to a new low — the 30-minute format is something I have criticised again and again (such as here) as it lends itself to sensationalism rather than to serious investigation, but this just was not Panorama — it was more like a cheap prime-time infotainment piece, a bit like Saints and Scroungers without the “saints” (who were often people who helped the poor and disabled find benefits they were entitled to). The aim was obviously to show that the benefit bill was as high as it was because of fraud, and that “fraud costs all of us”, but the over-investigation of fraud can sometimes detract from the purpose of the benefit and make life very difficult for real claimants, so as to satisfy the mid-market tabloids. Nobody would object to someone who had been found out claiming benefits when they are not living in the country, or were perfectly well-off in their own right, or not as disabled as they claim to be, being punished or having their benefits cut, but some benefits are in fact not means-tested and the programme did not make that clear. It also did not mention that the rate of disability benefit fraud is extremely low, and therefore the cost of welfare is not being significantly inflated by fraud; it is just high because there is a lot of disability, and some people’s needs are severe and complex.

What makes this all the more disgusting is that excuses are being manufactured to “cut the benefits bill” at a time of scarcity when many people are falling into poverty. The same cannot be said of the introduction of Jobseekers’ Allowance under John Major — that happened in 1996, after the early 1990s recession had ended, although with much the same media baiting of the “workshy”. This time round, it is benefits as a whole that are being attacked, with the media — not just the newspapers which support the Tories because their wealthy owners tell them to, but the BBC which is paid for by public subscription — joining in the chorus. We have a welfare system partly to make sure people do not fall into destitution, partly to make sure that people with disabilities and other complex needs can live dignified and productive lives, and partly to pay for the costs of ideological trends (such as globalisation) and political decisions. If we wish to cut the benefits bill, we need to get people working, and that means reducing our reliance on imported manufactured goods, for a start. People who can work, and are offered a serious job (that is, one with prospects), will do so. Those who cannot, because of their own or a dependent’s disability (or because of prejudice, or some other genuine reason), must be supported. The alternative is to lose our status as a civilised country.

Guest post: Why has my government let me down?

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

I have received disability living allowance (DLA) since I was around 7 years old. My feet are so bad that walking is extremely painful! At 24 I can’t walk half as far as I used too, I have insoles made to go in the one pair of trainers I can fit into and I also take painkillers and anti-inflammatory drugs every day to try and give me some small shot at making it through the day. In the UK if you receive the higher rate mobility component of DLA you can opt to use the money for the motability scheme – a great service where instead of money, you receive a car on a 3 year lease for help with ‘getting around’. At 17 I passed my driving test and I used the scheme to get a car to help me go to work, do the food shopping, attend hospital appointments and go swimming. My car has been the one thing that has enabled me to live a ‘normal’ life. I can have a full time job, run my own home and have the freedom to know If I need to be somewhere I can get there – pain free!

So imagine my devastation when my government, took away my car and told me, you are no longer entitled to help or benefits because frankly you’re just not disabled enough. With no car I fear now my life as I know it is on borrowed time. I’ve appealed but the minimum wait for an appeal is another 11 weeks. With no car I’m struggling to get to work, I have to walk to the bus stop and try and manage two bus journeys and another walk from the bus stop to work. By the time I get there my feet already scream in pain. By the time I’ve done an 8 hour shift I’m dead on my feet and I have the same two bus journey home to do before I can even think about sitting down and resting my red raw and sore painful feet. If they ever get that bad I usually don’t walk on them for 24 hours to try and let them recover but without a car and rent and bills to pay I have less than 12 hours before I have to do it all over again. There’s no chance of food shopping (how on earth could I carry it home!) and I don’t think hospital appointments are available on a weekend.

If I lose my job I lose my house and then where do I go? On a council housing list? Oh I’m afraid not, you see I was bought up to earn my own living, take the minimal help i need and don’t have babies until i can afford them, and yet when I call to ask for help I am told that as i don’t have any dependent children they cannot house me and as i elected to leave work (regardless of why!) they won’t help to find me a home because I had one.

So here I am, in pain and in fear of losing my home because I can’t physically carry on getting to work but more importantly because today my government gave up on me. I’ve spent all my life trying to live the right life, to be a productive part of society and not different but it seems I got it wrong because my society cannot help me unless I have done all the things my hard working mother told me not too.

How much of a failure do I feel to know that my mind IS capable of working but my body is not, it’s not my fault but I’m being punished for it anyway. My car helped me to be normal, there was nothing that I couldn’t do because if my feet couldn’t get me there my wheels could.
The government has a legal obligation to support a child whose parents do not because it’s simply not the childs fault, but when you’re an adult and need support because it’s not your fault, they will stand back and watch your world fall apart around you, regardless of how hard you have tried, regardless of what help you need.

Guest post: Court tells disabled woman: just wet yourself

This is a guest post by Indigo Jo and originally appeared here.

Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)

I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)

Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.

Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.

I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.

Suicide is part of the disability debate, because suicide is part of some disabled people's lives

This is a guest post from Zellieh, who can be found on twitter, and blogging here.

I'm writing this post because I'm so angry with this Guardian article, Suicide threats don't help disability debate, by Sharon Brennan:

I fear that the rhetoric used to draw attention to our community will close off the ears of the public. Threatening suicide is not just extreme, it sounds overtly engineered to make any discussion of disability benefit reform sound callous. Talking of increased pain, social isolation, inability to maintain a dignified life have a worthy place in the debate, but is it ethical to phrase the fight for benefits in the context of life or death?

Suicide isn't a political tactic for me, and you're lucky, dear readers and Guardian article authors, if you can look at the real risk of suicide among mentally ill disability benefits recipients and think of it as a tactical thing that other people do.

I don't know how much you know about claiming disability benefits on mental health grounds, but let me assure you that you don't get Disability Living Allowance, Incapacity Benefit or Employment Support Allowance for Mental Health issues because you're 'having a bit of a bad day' -- you need evidence, from a GP, a Psychiatrist, and a Community Psychiatric Nurse or Occupational Therapist, of serious long-lasting problems -- which often includes self-harm, suicidal thoughts, and/or actual suicide attempts.

The Department for Work and Pensions don't just hand over disability benefits because you ask nicely. The DWP & ATOS' medical assessments for benefits are designed for physical health problems, with mental health problems tacked on as a bit of an afterthought, so for someone who is mentally ill, they are the equivalent, in terms of stress, of passing a job interview or being made redundant, plus being threatened with moving house and/or having your house repossessed, since benefits link to Housing Benefit, so if you lose your disability benefits you can lose some or all of your Housing Benefit.

In your article, Ms. Brennan, you talk about

the talk of "potential" suicide

Thank you for using those patronisingly skeptical quotemarks around the issue of "potential" suicide. Or as I like to call it in my reality, suicide.

Suicide is not a tactic for me; it's a real risk: TWO of my four suicide attempts were triggered by the stress of medical assessments; one suicide attempt each for Disability Living Allowance and Incapacity Benefit.

I am genuinely happy for you, Ms. Brennan, if you manage to be both physically disabled and mentally well -- and I mean that sincerely; the world needs more happy, kick-ass people with disabilities leading full and varied lives, because disability ISN'T all about suffering and pain -- but I find your ignorance about people with mental health issues insulting.

Referring to a recent survey by Disability Alliance (which found that 9% of people who answered were considering suicide), you say,

I don't doubt that those who responded to the survey are genuinely in fear of losing the very support that makes their life bearable, but should they have been asked about suicide in the first place?

Well, considering that a third of people claim disability benefits due to mental health problems, and that many people with physical health problems are also often suffering form various mental illnesses or depressed due to the physical and emotional exhaustion that comes with living with disability, yes that is a valid question.

You go on to say,

Life is too precious to be used as an instrument to fight against government cuts and I can only hope that the very posing of the question hasn't led someone, already living in a climate of fear, to start down a very dark path of desperation.

Well, don't worry your passive-aggressive little head about that -- I was brought to suicide by the process of claiming disability benefits long before this survey came out, and in fact, I haven't even read it yet. Although, the current climate of fear has led me to think suicidal thoughts far more often; turning on the TV has become akin to playing Russian Roulette: will today's speech by [insert politician's name here] be the one that finally tips me over the edge?

Suicidal thoughts are a symptom of depression and also many of the anxiety disorders, eating disorders, and diseases such as dementia. Depression and anxiety often accompany physical health problems, for both disabled people and their carers (who are often invisible victims) due to stress and pain and grief and the severe limitations illness brings to peoples' lives.

Suicide is not a rhetorical device for me - it is a symptom of my illness. It is a symptom -- and a real risk -- of many peoples' illness. When you ask,

is it ethical to phrase the fight for benefits in the context of life or death?

I ask you -- is it ethical of you to ask me to lie about my life, my illness, my experience, because talk of my suicidal thoughts upsets you?

Guest Post: How the ILF closure will affect real people

This is a guest post by Martyn Sibley and originally appeared on martynsibley.com

As always my life has been fast paced and on the tiring side. I am glad to say despite winter and general work tiredness, I am feeling good and looking forward to xmas. Due to things being busy, this blog on the recent Independent Living Fund (ILF) proposals is not the heavily researched or laid out as an intellectual thesis, as I would usually prefer ;-)

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.
It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life. Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.
So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?

The Government Is Implicated In Creating Negative Attitudes To Disabled

This is a guest post by Sharon Brennan, originally posted here

 

It is the 40 years since the first Disability Act was enacted and to mark the occasion the BBC commissioned a survey into the public's attitude to disabled people. Interestingly 90% of people thought the Government should do more to help disabled people into work. I found this outlook really refreshing as I recently wrote a piece for the Guardian discussing the need for the Government to recognise that disabled employment must be a two way conversation: disabled people must be willing to work but employers must be willing to hire. Despite the Government refusing to discuss the fact that it is harder for disabled people to find work, it was great that the average person recognises it as a problem.

Where the BBC survey results were less positive, were in its findings that 40% of people think disabled people would "refuse work even when they have been found capable of doing it". This figure rose to over 50% amongst young respondents and those on low incomes.

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed,  "75% of claimants are fit to work", and carried on: "Tough new benefits test weed out the workshy".

You expect this kind of thing from the Daily Mail. But what shocked me is that the 75% figure came from a press release from the Department of Work and Pensions. And the figure is wrong. So it amounts to blatant Government propaganda. 

The Government has reached its 75% figure by adding together 39% of people found fit to work and the 36% of people who have removed their claim during the assessment process. This 36% figure is problematic as there is much anecdotal evidence that those withdrawing their claims are those suffering from mental illness who find the process too frustrating and to have a negative impact upon their health condition. The truth is that the Government has no idea what happens to these 36% of people, as it doesn't track those who withdraw their claim. Which also means that the Government has no idea why they stop the process, although of course the Mail is quick to claim its because they were merely 'trying it on'.

But lets turn out attention to the number of successful appeals against ATOS's decision. When you follow the 'Notes to editors' link on the DWP very own press release it reveals a more in-depth report which shows that every month on average 40% of appeals against ATOS are upheld and they are awarded ESA. On average one third of claimants found 'fit to work' appealed against their decision and 40% were successful with their appeal. So if you do the math, once the whole process including appeals is complete, the DWP is wrong to say 39% are fit to work. In fact, 34% are found fit to work. So overall, at best 70% of ESA claimants are 'fit to work' although my guess this would be lower still if those 36% who dropped out of the process were given the right support to continue with their claim.

Let me remind you that the Government has access to this data, I've taken it directly from its own report. Yet although the release quotes Grayling saying he is "determined to get the medical test right" the successful appeals against the test are entirely omitted from his ESA headline statistics. 5% may be a small difference, but it is a difference none-the-less when you think that this current Government is so focused on transparency and providing accurate information to its citizens.

So it is clear that for some reason the Government has decided to spin the statistics associated with who is and isn't fit to work. It seems to suit their current agenda for the public to think that the majority of ESA claimants are 'scroungers'. Perhaps they realise they can only get the public to accept their massive welfare cuts if the public think the money is going to the undeserving. 

And this might explain why, in today's BBC survey, the number of people who think disabled people choose not to work rises amongst those people who are most struggling to get by in life or get a job. So the Government at least seems to be doing well at one thing: pitting one set of welfare cut losers against another.

'Not Really Disabled'

This is a guest post by pinkpjs

Since May one of the most successful things to be achieved by the
condems seems to be the legitimisation of scapegoating and targeting
of disabled people so wiping away years of struggle for equality and
social justice by disabled people and effectively taking us back to
some very dark days when we are perceived not as human beings but as
'useless eaters' only this time we are undeserving liars and cheats as
well.

The extent of this was made more apparent to me two days after
listening in disbelief to the cheers greeting Osbourne's shock and awe
attack on services and benefits that we depend on for our health and
wellbeing.

As part of my job I had to attend a meeting with a manager working with
the DWP who told me that their role was to support disabled people to
receive benefits they are entitled to.

I asked them about the changes to DLA in particular and the impact of
people in residential care and was shocked to be told that 'they don't
really need the mobility allowance as most of them rarely go out except
to medical appointments and then the staff are more than happy to take
them, so it is only fair that they shouldn't get this'.

Then, the response to my question about any other changes to DLA which
the condems have hinted at, was 'well, we all know that many people
currently getting this really aren't disabled and shouldn't be getting
it'.

I was left quite speechless at the blatant way this manager in their
professional capacity expressed their opinions which I'm assuming are
not based on fact but on propaganda, especially as this leads me to
believe this could effectively mean that clients will not get benefits
they are entitled to.

Also, they do not know me and do not know that I have a hidden mental
health impairment and have had years of struggle to both get and keep
jobs and receive DLA which they presumably think I am not entitled to
but which actually supports and enables me to work.

They also do not know that I have been in a residential treatment unit
and depended on the mobility component of DLA in order to maintain
contact with my family and especially my children and my friends which
was vital to my recovery and to mine and my children's right to family
life, especially as I was 50 miles away from my home.

They did not know that I have many disabled friends who would see their
attitudes as deeply disciminating and offensive.

And now Labour have stated they support the condems over this I feel
that politicians think it is fair to deny disabled people hope.

The Daily Mail's Deserving Few (Scroungers not welcome)

 Guest post from Rich of Arbitrary Constant

I'd love to know what it's like being someone with the mindset of a Daily Mail reader. It must be fascinating to be outraged by something today that is the exact opposite of the thing you were outraged by yesterday.

The subject of benefits is ripe ground for this: on the one side you have the "benefit scrounging scum" who are displaying frankly extraordinary skill and expertise in amassing small fortunes at the expense of your average hard-working taxpayer. On the other, you have "our brave lads" and "heroes" whose sacrifice and commitment to our way of life the government isn't valuing by scrimping and saving on the measly difference of a few quid a week.

Into this melting pot of prejudice, hypocrisy and knee-jerk reaction enters the "hero officer blinded by gunman Raoul Moat", David Rathband. The DWP has assessed him as being eligible for the lower mobility component of Disability Living Allowance, £18.95 a week, compared to the higher rate of £49.85.

Predictably, the Daily Mail is appaled by this decision, branding it "paltry" and quoting Mr Rathband as follows:

If only they knew how hard it is being blind. I need help just to get to the end of my garage. Each day is a challenge to get about. As a blind person you have to learn a route in your mind, if it's walking to the shops and back, and it's taken me six weeks just to do that. How on earth does that make me mobile? I'm going to appeal the decision. I don't know if I'll win or not but this is a point of principle.

This, of course, from the the paper which gave us:
— George Osborne's remedy for a crippling benefit (bonus points for particularly distasteful use of language)
— The boom towns transformed into benefit blackspots
— 76% of those who say they're sick 'can work': Tests weed out most seeking incapacity benefit
— Osborne begins crackdown on incapacity benefit cheats with plans to treble assessments
— Just one in six incapacity benefit claimants 'is genuine' as tough new test reveals TWO MILLION could be cheating (extra style points for use of capital letter for emphasis)

All in all, this amounts to the usual, ill-informed hypocrisy of the Daily Mail. Only it could glowingly quote a hero talking about the "principle" of the positive difference benefits makes in their day-to-day life, whilst at the same time lambasting every other benefit recipient as a "scrounger".

With all due respect to Mr Rathband and the difficulties he will undoubtedly face for the rest of his life, there are plenty of people in far worse a position than him who are being targeted by the coalition government's wilful confusion of Disability Living Allowance as an "out-of-work benefit" and the Daily Mail's gleeful coverage of people that fit the bill.

Perhaps the Daily Mail should recognise how hard it is being a disabled person by ensuring everybody gets the right level of welfare support they need, rather than just those it happens to think are the most deserving.

Guest Post: This year’s budget – progressive or destructive?

This is a guest post by Flash Bristow.

This week, the Institute for Fiscal Studies (IFS) published a report assessing the impact of June’s budget¹. It was no surprise to find that the poorest and disabled people have been hardest hit by benefit cuts in a budget that is far from “progressive”.

We know that disabled people often have a low income – the Joseph Rowntree foundation found that three out of ten disabled people of working age are living in poverty². With this background, the IFS report makes for grim reading.

Their projection illustrates that as a result of benefit changes, the poorest 30% of people will lose 2% of their income. For those who already live hand to mouth, this could be hard to bear.

There are three ways in which we will be hit hard: these concern changes to Disability Living Allowance (DLA), Housing Benefit and the way that benefit increases are calculated.

Firstly, from 2013 there will be reforms to the way DLA is assessed. We do not know much about how this will operate or whether it will affect those who already have indefinite awards, but the Government’s Budget policy costings document says that the result will be to remove DLA from around 20% of claimants. As only 1% of claims are estimated to be fraudulent, surely the other 19% will be people who need help but are turned away. As it is estimated that only 40-60% of those eligible for DLA actually claim it ³ this is a very harsh cut.

There will be various changes to Housing Benefit, but the killer clause for disabled people is “Reductions in housing benefit for those of working age living in social housing that is under-occupied” – the government trumpets that this change is predicted to make a saving of £490 million in 2014-15.

This rule makes no consideration of disabled people’s needs – for example the requirement for an extra bedroom for carers to sleep in, or if a couple (or children) are unable to share a bedroom because one of them is disabled. My own parents are in this situation – my father has a special bed on the ground floor, while my mother sleeps in the marital bed upstairs. But it’s just a numbers game to the government – count the heads, assign the bedrooms. Simple, right?

A parliamentary briefing paper on Housing Benefit⁴ says “The Department for Work and Pensions (DWP) have stated that they expect the additional needs of disabled people to be paid for by local authorities from Discretionary Housing Payments but this is not working in practice.” This is a disgrace – discretionary payments can never be relied upon (particularly as they are meant to be temporary, and come from a limited pot of money) so it is worrying to consider how many disabled people will be penalised for “under-occupying” a property, when in fact they need all of the rooms in their house.

In addition, the IFS report goes on to say that “Local Housing Allowance rates will be set at the 30th percentile of local rents rather than the 50th percentile. This effectively means that LHA claimants will only be able to choose from the cheapest 30% of properties in their local area of the appropriate size for their family rather than the cheapest 50%.” This could be a problem for any disabled people who need a ground floor flat – as I discovered when I was house-hunting, they often carry a premium for being a “garden flat”. Housing benefit won’t stretch that far. And what about my friend Sam, who needs a town centre flat because she can’t access public transport to cheaper houses in the suburbs? Yet again disabled people are being penalised by circumstance.

The final way in which the budget is unfair to disabled people is in the way that year-on-year benefit increases will be made. There are three indexes on which inflation can be calculated, and the government is changing the index used for calculating benefit to the meanest one – meaning that we can look forward to an even more meagre increase to our benefits each April. I’m surprised that the government hasn’t axed our traditional £10 Christmas bonus!

This budget is all but “progressive” – as the IFS has concluded. It’s frightening to consider how many disabled people will be pushed closer to the breadline, if they aren’t there already. Of course, we knew this already when cuts were publicised, but it’s good to have it confirmed by an independent research institute. Perhaps now the government will have to ensure that disabled people are not disadvantaged by this budget. If not, how long before they have blood on their hands?


1. The distributional effect of tax and benefit reforms to be introduced between June 2010 and April 2014: a revised assessment
2. UK poverty falls overall, but rates increase among disabled people
3. A brief guide to the world of tax for disabled people
4. Housing Benefit: Size Criteria and Discretionary Housing Payments