Where's the Benefit?

Simplified Version of Draft PIP Criteria

2012-02-07T16:07:00.003Z

Here is the simplified version of the PIP criteria we've been working on.

Draft Pip Criteria - Simplified Version

We hope it will give you all the information you need to decide how you will be personally affected by the change from DLA to PIP. Soon, we will publish a guide to the consultation too, so perhaps we can use this simplified version to start to think about what submissions we might make to the consultation.

Hopefully by later in the week, we can start writing our submissions when the guide to the consultation is finalised. We hope it will mean that many, many more people will engage with this process and we can make our views heard.

If you've already done a submission or don't want to wait, we would like to invite you all to send any submissions you make to us, so that this time, we can keep a public record of as many responses as possible. We will be inviting Charities, DPOs and other campaigning groups to do the same.

Clearly, this will not suit everyone. Some may wish their submission to be private and we wholeheartedly respect this. However, to avoid any suggestion that our views may not be properly considered, we feel it would be helpful to provide a space where they can be collected.

Draft Pip Criteria - Simplified Version

The Death Of Decency #wrb

2012-02-02T13:31:00.001Z

It's been a long, hard eighteen months. Harder and tougher than I could ever communicate to you. I could try and tell you of the times Sue and I spent hours fevered, medicated and desperately unwell just trying to string together a few coherent sentences. The times we tried frantically to finish articles for newspapers interrupted by journalists, politicians or charities wanting us to help with research about issues they didn't really understand, or the times we took turns to cry with despair about what was happening to our country which no-one but a handful of seriously ill people seemed to care about.

I could tell you of how receiving messages from people so terrorised they wanted to tell us their lives were no longer worth living became routine. Of sleepless nights fearing that the person had gone ahead with their plans, or even of the devastating night when despite the online community rapidly rallying help we heard that the prompt police response was too late and another person was found dead.

I could tell you that we always knew this to be an unwinnable battle. That very early on we decided that whatever dirty tricks politicians pulled we would not sink to that level. That we would always act with honesty, ensuring our facts were double and triple checked, that we would counter lies with integrity and truth. That the more justice appeared to be absenting herself from this process, the more we were determined to ensure her voice remained.

I could tell you all those things and more, but never would you be able to truly understand how much this battle has cost those who had least to give. We have lobbied, debated and pleaded, often ignoring issues which would affect us personally as we decided on principle that we would act for the the best interests of all our community, even if that was to the detriment of our own personal lives, financial situations and our long term health.

I could, but that's not the most important thing to say.

The most important issue of all is the message sent by a British government to the British people. That disabled children who aren't the most disabled of all will have their support cut to 'justify' increasing the support to the most severely disabled children by less than £2 a week. That newly disabled or seriously ill adults living alone will lose the money previously deemed vital to pay someone to provide care. That children with serious illnesses and disabilities will have their entitlement to National Insurance contributions removed. An entitlement previously supported by politicians of all parties as sending a crucial message of the inherent value of life. That people with serious illnesses such as Multiple Sclerosis, early onset Alzheimers or cancer will, after 12 months, no longer be entitled to the financial support they spent their working lives paying National Insurance for if their partner earns more than £7500 per year.

I could tell you of how this was sold to the British public. A people with 'it's just not cricket' hardwired into our DNA. Of how carefully, deliberately, knowingly successive governments moved from all agreeing that it was inhuman to demonise the sick or disabled to carefully, deliberately, knowingly, drip feeding a complicit media into a propoganda exercise stunning in its success, to label these very same people as unworthy of empathy, compassion or support. Of how calculated this rebranding exercise was to ensure the public believed the empty promises of 'always supporting the most vulnerable' because, after all, these people are mostly faking fraudsters anyway. Doesn't it say so in the papers, on the news, even on the BBC?

I could try and explain to you that this isn't about eliminating fraud, that this will affect you or your family when inevitably accident, sickness or ageing moves you from being 'not yet disabled' to 'one of us'. I could try, but that's the nightmare of 4am no-one wants to remember when they awake. I could tell you that understanding, that empathy, that sense of life altering devastation is an insight that will only come to you when it's too late.

I can, with pride, tell you of a demonised community who have found strength in each other. I can tell you of how inspiring it is to feel the love and support of these people, and the awesome sense of privilege in witnessing the broken come together. I can tell you of the values we all grew up with, principles our ancestors fought for, our playground guilt as we were chastisted for hitting the bespectacled child.
I could tell you of how bewildered we have been to witness a British government act in a manner more befitting China. I could tell you how each deliberate lie, each serpent tongued statement and guarantee of consultation rankled and oozed. I could tell you that something fundamental in us was mortally wounded when finally we produced cold, hard evidence to prove the government were saying one thing and doing quite the other, to then witness the government's nose grow proportionately only to it's falsehoods.

I could tell you that actually, this is not about the money. That the financial cuts will be detrimental to lives, but that the message the government have sent to the British people, that the weakest, the frailest, the most vulnerable are no longer worthy of collective support will be rejected once that same public understand that message.

I could tell you all of that, but over the next few years you will discover this for yourselves. So all I will tell you is this;

Something fundamentally British died yesterday. If you thought it was already dead, think again.

A Premium Life

2012-01-27T11:00:00.002Z

There's one cut that I've heard almost nothing about. I mean literally only 2 tweets and one blog comment. There's been nothing about it in either the mainstream press or on leftie/disability blogs.

At the moment there's an Income Support top-up called the Severe Disability Premium (SDP). It's often confused with Severe Disablement Allowance because of the similar sounding names despite being very different things.

The amount of money the law says you need to live on each week depends on your circumstances. If you're considered "severely disabled" for the purposes of benefits it's regarded that you need £151.65 a week to live on.

As someone that gets the middle or high rate care component of DLA and as someone who lives alone I'm considered "severely disabled" for such purposes. My Incapacity Benefit, including age-related premiums, is only £108.05 a week. This leaves me with a £43.60 shortfall between the amount of money the law says I need to live on and the amount of money I get. This is where the SDP comes in: I get an Income Support payment of £43.60 to bridge that gap.

The Welfare Reform Bill is scrapping the SDP. Entirely. Not replacing it with something different and stricter like the DLA to PIP changeover: It's just going.

The cost of living is going up, not down. So why do I suddenly need £43 a week less to live on?

I know that to a Tory £43 a week is a drop in the ocean. To a Tory it's maybe the cost of dinner if they eat somewhere cheap. But to me it's almost a third of my week's income. To me it's the difference between being able to visit my father or not. To me it's a grocery shop.

Crossbencher Baroness Meacher put forward amendment 21A on the second day of the report stage in the Lords which would have preserved an SDP-esque payment after the WRB had gone through. It didn't even go to a vote: Freud pointed out to her that letting severely disabled people retain their current income level would cost more than the amount the bill budgets for, so she withdrew it (it's not "cost-neutral").

It's not only people in similar circumstances to my own that will be affected, during the discussion Baroness Grey-Thompson brought up the fact that this will have a huge impact on young carers. People love to don a Red Nose to raise money to send young people assisting a parent 10 Pin Bowling once a fortnight, but where's the outcry over the fact that the government is stripping away financial support from parents which will make the young person's life harder?

All in this together? How about we knock 33% off the MPs' wages instead of severely disabled peoples' incomes. It'd be a much more sizeable saving than the mere £43 a week that makes such a huge difference to someone like me.

Rod Liddle is an Arse

2012-01-26T21:31:00.000Z

Something weird and kinda wonderful happened today: A right-wing tabloid published some vile disablist propaganda, and the internet gave a crap.

There's nothing wonderful about vile disablist propaganda, obviously. But we've been seeing it for a couple of years now and usually there's no backlash against it. When Melanie Phillips writes a hideously homophobic piece or when Liz Jones writes a bizarre article about semen theft; Twitter gets on its moral high-horse (rightly, of course). But when the Daily Mail claims that only 1 in 14 IB claimants is genuine, or when The Sun state that in 3 years time one in every 17 people will be claiming DLA as if this is some kind of outrage (and without qualifying that, actually, one in every 5 people have some kind of impairment) no-one usually bats an eyelid at the press abuse of disabled people. In fact, people who would like to consider themselves as "decent" start moaning about all the fakers and scroungers because the official fraud figures of around 0.5% are hidden away on the Society pages of The Guardian rather than splashed across the front of The Sun.

This week we've reached a turning point: People objecting to propaganda, 38 Degrees pulling their finger out, UK Uncut organising a protest against the WRB (even if they did forget to make it accessible...). Shame it's all a bit too late and this time next week the bill will be a done deal.

And in the news...

2012-01-25T19:30:00.000Z

The BBC today published a news story on their website about right-to-die campaigner Debbie Purdy, her husband, and the benefits system.

Husband of Debbie Purdy told 'quit work' for benefits.

It's a ridiculous situation, it shouldn't happen, but it does. It's the final paragraph that really irritated me:

The Department for Work and Pensions said it did not comment on individual cases but that planned reforms of the welfare system would benefit people such as Ms Purdy.

In the first half of the sentence the DWP say "we don't comment on individual cases." This is then followed in the second half of the sentence by commenting on an individual case. My cat is more consistent than the average DWP employee and she frequently demands to be petted and then bites me when I touch her.

There's also the problem that the second half of the sentence is a complete lie. Yes, the government are resolving the problem that one can sometimes be better off on benefits than in work. But they're not resolving the problem by improving benefits for families like Purdy's: They're just making everybody poorer.

Many of the benefits to be capped, including housing benefit, are available to people in work on low incomes. By cutting back on these benefits you're making remaining in work harder not easier.

The article says that Purdy gets IB and DLA. DLA is being subjected to 20% cuts and many genuinely ill people are being found fit for work in the IB to ESA moves. Right there is another possibility that these reforms might leave Purdy worse off.

Whenever there's a benefit-related news story the DWP are always given a right-to-reply in which they invariably tell a pack of lies. So why is it that when the right wing press - which unfortunately has to include BBC News these days - run a story straight from the mouths of the DWP that disabled people don't get the same right?

Finally!

2012-01-25T16:40:00.000Z

It's taken more than a year of begging but: 38 Degrees have finally decided that welfare issues are sexy enough to support. Here's the Email they sent out today:

"The Lords have told government to ditch plans that would leave people struggling financially if they became sick or disabled. Now 38 Degrees members can help make sure MPs listen." Kathy Peach, Head of Campaigns & Social Change, Scope

Dear [supporter],

In the next few days we could help stop some of the worst cuts to support for sick and disabled people. The House of Lords voted to stop some of the most unfair cuts - including support being ended after only a year for some people recovering from very serious illnesses, like cancer. [1]

The government is threatening to reverse these decisions and bring the cuts back. [2] But they can only do that if they can persuade enough MPs to do what the government tells them. If we work together, we can push our MPs to stand up for what's right and defend sick and disabled people.

Right now, many MPs could be on the verge of doing the right thing. A final, people-powered push from thousands of 38 Degrees members could convince them to back the Lords’ changes to the bill.

Click here to send an email to your MP - it only takes 2 minutes:
https://secure.38degrees.org.uk/stop-cuts-to-support

All over the country, disabled people and their families are anxiously waiting to see what will happen. The decision could be the difference between a decent life and serious poverty. Becoming sick or disabled could happen to any of us. Now, we’ve got a chance to stop MPs making a tough package of cuts even worse.

Send an email to your MP - ask them to make sure they back the Lords’ changes:
https://secure.38degrees.org.uk/stop-cuts-to-support

Time and again, 38 Degrees members have taken action to stand up for what’s fair. We’ve challenged the government when they’ve turned a blind eye to tax dodgers. We made it clear that we won’t put up with NHS plans that mean people who pay more get better care. And we’ve been telling MPs to protect Legal Aid for people challenging decisions about their benefits.

Even with the changes the Lords have made, there are big worries about what these plans mean for disabled people. But if MPs don’t back the Lords’ changes, it could end up being even worse. Our voices will be joining hundreds of other groups, including Scope and Sense, who want MPs to protect these improvements. [3]

Together, we can persuade MPs to vote the right way on cuts to support for sick and disabled people:
https://secure.38degrees.org.uk/stop-cuts-to-support

Thanks for being involved,

Hannah, Cian, Becky, Johnny, David, Marie and the 38 Degrees team

NOTES
[1] http://www.telegraph.co.uk/health/healthnews/9009079/Boost-for-cancer-patients-as-reforms-that-would-cut-support-defeated.html
http://www.newstatesman.com/blogs/the-staggers/2012/01/welfare-disabled-government
[2] http://www.bbc.co.uk/news/uk-politics-16523649
[3] Read more about some of the other groups campaigning here:
http://thehardesthit.wordpress.com/
http://www.scope.org.uk/
http://www.sense.org.uk/
http://diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html

A cynical person might speculate that they're only jumping on board now that disabled people have made headlines with the Spartacus Report and they're hoping to dash in and claim a victory. But whatever their motivation it's great to have them on board, and here's hoping it will result in them offering more support for disability issues in the future. So please support this campaign so they realise that, actually, disability issues are a popular choice for them to engage in.

♫...Here in my car I feel safest of all...♫

2012-01-23T11:00:00.012Z

On Thursday I posed a question that's been bothering me:

Seriously: Why are car companies not lobbying the government over the number of people losing Motability eligibility? #DLA #wrb
— Lisa Egan (@lisybabe) January 19, 2012

I got a couple of replies:

@lisybabe perhaps they don't know about how PIP is going to reduce numbers on eligible Enahnced Mobility #DLA #WRB
— M Thomson Fibromite (@Fibromitesunite) January 19, 2012

@lisybabe Because, I assume, they don't realise how bad it might be.
— Robin (@queerpup) January 19, 2012

So then I asked:

Next question then: How do we get car companies lobbying the government over the number of people losing Motability eligibility? #DLA #wrb
— Lisa Egan (@lisybabe) January 19, 2012

And got these replies:

@lisybabe Do they even know it is happening?
— Tentacle Sixteen (@latentexistence) January 19, 2012

@lisybabe first step would be getting a breakdown of payments from motability to car companies - find out the biggest likely losers?
— dog in a sink (@doginasink) January 19, 2012

@lisybabe Start writing to them. Point out that you are a Motability customer, and under Govt changes you will lose that, as will X000 other
— Robin (@queerpup) January 19, 2012

@lisybabe Someone at Motability must have thought about this. Perhaps worth contacting them.
— Tentacle Sixteen (@latentexistence) January 19, 2012

@lisybabeThe car dealers are going to be quite pissed off when they realise exactly how much (cont) tl.gd/fe2b7u
— Carole(@robomam) January 19, 2012

The government only care about business and profits, not people. They're not listening to the human case for not taking benefits, so I think we need to try another tack: The business case. As I understand it; Motability was effectively the only thing that stopped the car industry from caving in.

I have no contacts within the car industry, I know nothing about business lobbying. I'm worse than useless at motivating people to do stuff. I have zero ideas about how we get the car business to speak up. All I do know is that while the government won't listen to disabled people, they will listen to the concerns of their big business buddies. So I'm throwing this idea out there as a possible avenue for a plan of attack we haven't exploited yet.

Just a form - some benefit myths

2012-01-19T18:53:00.004Z

Here are three myths that have been annoying me recently, the first two repeated constantly by government ministers.

Myth: DLA can be claimed just by filling in a form.

Fact: Some people might only fill in a form to claim DLA, but decisions makers demand strong evidence to award the benefit. That evidence might come from the claimant's GP, or consultant, or other specialist in their disability. It might come from an occupational therapist or social worker. Many people send supporting evidence with their claim form, but if they don't the DWP will write to medical professionals and ask for it. If nothing is available, the DWP will send the claimant to a medical assessment - and they might well do that anyway. So the claimant might just fill in a form, but the decision needs a lot more evidence than that. Renewals may be treated differently.

Myth: DLA is awarded for life.

Fact: DLA is awarded for life ONLY if the disability is for life. Some cases are obvious. Missing limbs, progressive diseases. They don't get better. They get worse. There is no point in repeatedly assessing people with such disabilities apart from to see if they have got worse, and in that case a simple letter asking the patient if they have got worse would suffice to determine who to reassess. People who have variable conditions or illnesses that might improve get awarded DLA for a limited time after which they have to reapply. In my own case I have been awarded DLA for two years, and more recently for five years. Not for life.

Myth: People on benefits get free cars.

Fact: People who are unable to walk or virtually unable to walk get the higher rate mobility component of DLA. This is worth about £50 per week. They can spend it to improve their lives however they wish. Many people use the money to buy a wheelchair or a car. There is a scheme called Motability which is run by a charity, NOT the government, and people who receive high rate mobility can choose to lease a car or a wheelchair through them, paid for out of their own DLA.

The Motability scheme (remember, paid for by people who use it) purchases new cars and leases them to its customers. Most customers pay the entire £50 per week of their mobility allowance to the Motability scheme for three years to lease the car. That is £7,800 in total. At the end of the lease the car is sold. If the payments and the sale price together are not expected to match the purchase price, the customer pays the difference in advance. So it is perfectly possible to have a high end car, but unless it has a high resale price, the customer could be paying hundreds or thousands of pounds extra for that lease. And they don't get to keep it.

This article is taken from the authors own blog at latentexistence.me.uk.

Guest post: Modelling disability

2012-01-19T18:36:00.001Z

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.

PIP and passport benefits - who are the losers?

2012-01-18T14:27:00.004Z

Now that the transfer from DLA to PIP is pretty much a done deal, with tweaks likely at committee stage but otherwise leaving up to half a million of us out in the cold with a loss of vital benefits.

It's not rocket science to see that many of those who will lose out are going to have to make stark choices about food or heating, not buying essential equipment or important extras not available on prescription, or having to forgo the motability car they were saving for.

But there are other, unforeseen, side effects of this hateful, unwanted legislation. People who are removed from DLA and fail to make the transfer to PIP because they won't clock up enough points on the tick-box assessment won't just lose the money - they will also lose their eligibility for passport benefits.

Passport benefits are extra benefits you can only access if you are already receiving DLA. The most well known ones are the Disabled Rail Card and the concessionary bus pass issued by local authorities.

For some people who are too disabled to use public transport (but not, apparently, disabled enough to qualify for PIP), the loss of access to concessionary transport may be irrelevant.

But it will be a huge blow to wheelchair users who use accessible buses and trains, as well as those with limited mobility on foot who need access to public transport. People with epilepsy will also lose out heavily because they are the main group among disabled people who are not medically fit to drive. Many people with far more disabling conditions can still drive themselves in adapted vehicles and can go pretty much anywhere they please. People with uncontrolled epilepsy are completely dependent on public transport and taxis.

I had a good look at the PIP case studies yesterday, particularly studying the one about a woman with epilepsy. Looking at the points allocation, I'm fairly sure I won't qualify for PIP even though I have a lifetime award for DLA. I get DLA because preparing and cooking a meal unaided is very risky for me (I once almost burnt down my former partner's house because of this - it was a miracle the house hadn't gone up completely in flames by the time he got home), likewise going out unsupervised is also risky because of the possibility of having a seizure while crossing the road.

These are the risks people with epilepsy face daily if their seizures aren't controlled fully by medication and this is why they qualify for DLA (not all people with epilepsy qualify) and why, through receipt of DLA, we qualify for travel concessions.

However, concessionary bus passes in England and Wales are issued by local authorities and it's quite literally a postcode lottery, as LAs can set their own criteria for eligibility. Most require proof that applicants receive DLA, such as a copy of the award letter. For disabled people living in those local authority areas, the loss of the bus pass will be a bitter blow. It will certainly severely limit my ability to get around as much as I'd like to and I live in an urban area with a very frequent bus service passing my home. In rural areas, where they may be only one or two services a day, disabled people will suffer severe isolation.

Likewise, eligibility criteria for the Disabled Rail Card, which gives a third off rail travel for the holder and a travel companion, vary depending on the type of disability but again most categories require proof of receipt of DLA.

Loss of access to the trains and buses (and also the Tube, trams and local area trains on the bus pass in London and Manchester) will seriously hinder disabled people's ability to get around - to go to work, to socialise, even to get to the shops - and participate fully in society.

And of course, loss of disability benefits means people will have no spare cash to pay for expensive taxis instead. Before I moved house, I worked out I was spending most of my monthly DLA on taxis because it was too dangerous to walk home from the bus stop in the evenings in my neighbourhood unless I was willing to take a one-mile detour.

For many people loss of access to cheap or free travel could be even worse than the loss of the cash benefit itself.

Maria Miller has promised that we won't lose out, but can we trust her claim that the government is working with local authorities and National Rail? I for oneam not holding my breath...

Can't walk more than 50 metres? Under PIP I'm not disabled enough

2012-01-18T13:31:00.001Z

Today, Maria Miller insisted: "I want to reassure disabled people that if you need support you will continue to get it under PIP". Well having looked at the criteria for higher mobility component of the new PIP, I can categorically state that isn't true. I currently qualify for higher rate mobility under DLA but I won't under PIP. Under the new rules for PIP if a disabled person CANNOT walk more than 50 metres but doesn't need a wheelchair then they will no longer be entitled to higher rate mobility, which in short means access to a car through the motability scheme.

Please re-read that sentence and then think through the callousness of that statement and what that means to disabled claimants, like me.It means my world would be reduced to my home, and a stumble to the end of my road at best. My world, which has already been turned upside down by my worsening health, would diminish so much I'd have to question whether there is any point fighting to stay off the lung transplant list anymore.

Lord Freud said he was "personally committed to making Personal Independence Payment an effective, efficient benefit that targets support where it can help those facing the largest challenges in leading an independent life". Yet he was saying this already knowing what draft proposals for PIP were and that they effectively meant that independence would be taken away, that we would return to a time where disabled people are confined to their own homes.

My concerns for the scrapping of DLA were centered around the health assessments that all claimants would be expected to face. The disabled community know that similar health assessments run by Atos to qualify for ESA are fraught with errors. Currently 40% of decisions that people are 'fit to work' are overturned at appeal.

But how wrong was I. It isn't the health assessment I should have been worried about but the thresholds set by the Government over what constitutes 'disability'. I can barely walk down the road my lungs are now so ruined and scarred by Cystic Fibrosis. My heart beat at rest is 120, I daren't find out what it is when I try to move. I'm always out of breath even when sitting down not moving, when I walk I can get so out of breath that I think perhaps I should call an ambulance so scared am I that I won't be able to calm my breathing down. This is my private business though, I don't wish to burden other people with these thoughts, I am coping with my ill health and I have the mental strength to do so, but I only ask for the help that I need. Why should I be forced to write this, effectively begging the Government to rethink their callousness?

Last night when I read the thresholds for qualifying for higher rate mobility I was distraught, angry, scared for the future. I've been married less than one year, I have hopes for the future, even though I know that future won't be as long as everyone else's, I'm not ready to be stuck in my flat, hidden away from society. I feel unwanted by the Government, a burden, a problem, someone they can't be bothered with anymore, someone they don't wish to be outside contributing and integrating with society. Today is a very bad day for me.

Models of Disability

2012-01-17T19:58:00.000Z

As it has come up in the Welfare Reform Bill debate, and people are asking, here is a quick starter on models of disability.

The Medical Model of Disability

This is the classical view of disability, disabled people are broken and need to be fixed. Most of society and a lot of doctors still stick to this model.

The Social Model of Disability

This is a model created by disabled people themselves, and is very popular with disabled people. It says that the problems we face largely result from the failure of society to adapt to our needs and treat us as equals. We aren’t broken, we don’t need fixing, we’re just people like anyone else. Adapting to our needs can mean everything from replacing steps with a ramp, to acknowledging that mental illness does not make people an axe-murderer and that it is not better to be dead than use a wheelchair, to recognising that someone may need a different pattern of work to accommodate their disability. It really just comes down to treating disabled people as equals,

The Bio-Psycho-Social Model of Disability

The Bio-Psycho-Social Model is a perversion of the Social Model, intended to allow organisations such as large insurers and governments to limit support to people with long term disabilities. It pretends to adopt the Social Model, but then claims that because it acknowledges the need for ramps and so forth, any remaining disability is solely due to the disabled person failing to work hard enough at adapting to their disability, and that therefore they don’t deserve support. So I’ll just wish all my dodgy connective tissue to start working properly, my DNA to magically rewrite itself and ignore the fact that, even through Class 1 opiates, it frequently feels like I have burns across significant parts of my body.

The Bio-Psycho-Social Model of Disability was created by academics at the University of Cardiff sponsored by Unum, an American insurance multi-national that was branded ‘an outlaw company’ and subject to huge class action losses for running ‘disability denial factories’. Guess which American insurance multi-national advises the Department of Work and Pensions on disability benefit policy.

To Their Lordships on #SpartacusReport

2012-01-16T20:18:00.000Z

Lord Freud has today sent a letter to the Lords claiming that the Spartacus Report is not representative of the views of disabled people and that the DWP do indeed research the attitudes of disabled people. Sue Marsh and Kaliya Franklin have already written a response on behalf of the Spartacus Report team, available here, but I thought that I would tackle Freud's assertion from another angle, and look at the actual quality of that supposed DWP research. This is pulled together from a piece I wrote last year, and structured as a letter to the Lords, if you want to personalize it and send it off to any of the Lords in advance of tomorrow's vote, then please feel free:

Dear Lord/Lady <>,

Lord Freud wrote to you on Monday 16th January in relation to the Welfare Reform Bill, challenging the assertions of the Spartacus Report, which exposed the weaknesses and distortions in the government case to justify terminating Disability Living Allowance and replace it with Personal Independence Payments, slashing the budget by 20 to 25% along the way. As a disabled person I feel compelled to write and register my opposition to the assertions made by Lord Freud.

Lord Freud's assertions can essentially be reduced to three points, an insistence that the consultation over the changes to DLA was adequate, that the Spartacus Report analysis is selective, and a claim that the DWP has indeed researched the opinions of disabled people. Sue Marsh and Kaliya Franklin have already responded to Lord Freud's letter on behalf of the Spartacus Report team, pointing out that while government standards call for a 12 week consultation period, the Welfare Reform Bill consultation lasted 10 weeks, over a Christmas period. Other disabled people have reported that disability accessible material did not become available until nearly a month into the review period and in some cases an utter failure by DWP to provide accessible formats at all. The Spartacus Report is based on all material that was made available to the team via their Freedom Of Information request and is in no way selective. As the information provided was the group responses, including those of large disability charities, it therefore represents the views of far more disabled people than the 10% of responses Lord Freud has alleged to you that it represents. Equally, as has been shown over the past year of campaigning, the views of individual disabled people are overwhelmingly opposed to the changes to DLA, so the claim by Lord Freud that the individual responses not seen by the Spartacus Report team are overwhelmingly in favour of his proposals is received by the disability community with surprise, and a large pinch of salt.

In the end, the conflict of opinions is balanced on who holds the most accurate assessment of the opinion of disabled people: Lord Freud and DWP, or a team of disabled people who have been working on engaging with the disabled community for the past year and are held in high regard by all disabled people who have dealt with them. An examination of the quality of DWP research may throw some light on the matter,

Last August the DWP released a research paper 'Attitudes to health and work amongst the working-age population' on the public's perception of work as 'good for us'. David Gillon, a disabled blogger and campaigner writing for the disability website 'Where's the Benefit', set out to analyse the paper for inherent bias and the following section summarizes his findings looking at just two of the questions within the survey:

"Problems start even before we get to the questions, the executive summary explicitly references boosting support for Dame Carol Black's report that being out of work is bad for you as part of the survey's aims.

Um... Which part of Anthropology 101 and the danger of predetermining your findings did the author miss? Anthropological/Sociological survey design is science in a minefield; just the difference between one word and another of similar meaning can completely change the answers that are given. I therefore want to look at the two most important questions asked by the survey in some depth:

The first asks “Doing paid work can affect physical or mental health both positively and negatively. Taking everything into account, do you think that paid work is generally good or bad for physical or mental health?” This is so wide a question as to be almost meaningless. If it had been asked in conjuction with “do you think that paid work is _always_ good for physical or mental health?” then we might have had a useful comparison for understanding how the public actually view long-term health issues and whether they understand that disability really can interfere with the ability to work. But it doesn't ask that, and we have to ask why that might be. And disturbingly, buried in the data tables, three appendices after the final conclusions, is the innocuous statement “‘Don’t know’ responses to questions were removed for this analysis.”

A large part of probing people's understanding is recognising whether they have a good enough grasp on the subject to validate their opinion. How many people understand what that negatively might represent? My own spinal condition means that working left me feeling like I had a second degree burn over most of my lower body, frequently in so much pain that I could barely string two thoughts together. What proportion of the survey population considered the possibility of negative effects on that level when answering the question? And if they didn't consider it, then doesn't that specifically mean we have to throw out any conclusions based on the question, particularly any attempt to use the results in relation to disability and long-term illness?

With the second question we progress from bad to worse. The author sets out to compare attitudes to short and long term conditions, but her two scenarios are back pain that is particularly sore and depression making you feel particularly down. Back pain and depression, the two disabilities which everyone is convinced they understand, and almost no one does. I have already described what my experience of back pain feels like, is sore really an adequate descriptor for the possible extent of disability we are discussing here? And down? Where understanding is bad for back pain, it is far, far worse for depression. In fact the report itself acknowledges this limitation, but again buries it in the appendices.

There are more questions, but almost all face similar questions of applicability and balance. The conclusions state: “The findings are broadly positive and show that the health benefits of work are widely recognised among the working-age population.” That something is believed is not the same as it being positive. Much of the population once believed that the world was flat, that was a workable approximation if you never got more than five miles from the place you were born, but not exactly one we would now call positive. We now have the subtlety of understanding that tells us that the world can be considered flat over short distances, but over longer ones we must recognise that it is round. Similarly, the population may believe work is good for you, but disability benefit design requires a subtler distinction that work is good for most people, but for a significant number of people with disabilities, is actually bad for them. Only that subtler understanding may genuinely be labelled positive, and that is not what the survey has measured.

There appears to have been no independent review of the questions from outside of government, most particularly from Disabled People's Organistions or disability specialists in academia, and yet, as I have hopefully demonstrated, it is all too easy to raise major questions over the entire structure of the survey. The author may genuinely not have recognised the weakness of her questions, but that excuses her, not the findings of her report and raises the question of whether the DWP has any understanding of the scientific concept of independent peer review and why it is an absolute necessity?”

Lord Freud has told you that the DWP has conducted research into the views of disabled people, disabled people tell you his conclusions do not accurately reflect their beliefs, and an analysis of DWP research reveals troubling questions of balance. The choice of who to believe is yours, all I can do is tell you that I, and every disabled person I know, is genuinely scared of the consequences for us if you allow Lord Freud’s proposals to proceed.

Yours

Guest post: Lords vote tomorrow, Jan 17th

2012-01-16T16:39:00.001Z

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.

The Big Guns...

2012-01-16T16:11:00.000Z

Clearly the government are worried enough about tomorrow's DLA vote to call their buddy Rupert to get him to spin some propaganda.

This article is in today's Sun. It's almost all bollocks, of course.

ONE in every 17 people in Britain will be on disability benefits in three years' time, shock figures show.

What's wrong with that? Given that almost one in 5 people have some kind of impairment I'd say that's pretty good. Yes I know that with the DLA criteria being very specific a lot of disabled people aren't eligible. But still, if nearly 1 in 5 are disabled and only 1 in 17 are getting DLA; that would suggest that there are probably some people not getting it who should be.

The number of claimants will soar by 1,000 every WEEK to 3.5million by 2015 unless there is urgent reform.

And how many people become eligible every week? Children who were born with conditions like cerebral palsy or osteogenesis imperfecta reaching the minimum age. People developing cancer. People falling off roofs and breaking their backs. People losing their leg in a motorbike crash. People at the upper end of the the "under 65" age limit developing arthritis or Wet AMD. Disabled people die more often than non-disabled people, but the numbers are increasing due to more people joining our team than leaving it. I can easily believe there are 1000 new disabled people a week.

That's six per cent of the entire population getting Disability Living Allowance — meant for those with problems so severe they need care or help walking.

It's really so hard for Graeme Wilson to comprehend that with around 18% of the population being disabled, that one third of those people will meet the DLA criteria?

Already the number on DLA has TREBLED from 1.1million at its launch in 1992.

There are several reasons for this. Mainly medical advances. There are many medical conditions that, 20 years ago, were a death sentence. HIV, many cancers and a most muscle-wasting conditions claimed a lot more lives in 1992 than they do today. But just because people with these conditions are living longer doesn't mean they're cured; they're just pootling along, still impaired, for much longer. A decline in the death rate of disabled people will result in a higher number of claimants because the people becoming impaired isn't matched by the number of impaired people dying.

There is also an element of increased social tolerance towards disability. Yes there are still people that would rather be housebound than apply for DLA which would allow them to get out just because they're embarrassed to admit to being disabled. But for the most part, removing some of our culture's shaming of impairment has made many more people "come out" about having an impairment so they're more inclined to want to claim the DLA that will allow them to partake in life than stay at home feeling embarrassed about not living up to our society's ideals.

It now costs the taxpayer an eye-watering £12.6billion a year — the same as the entire budget for the Department for Transport.

But what about how much DLA saves on: NHS bills, social care bills, care home costs. And then there's the amount of DLA that gets put back into the economy because of people spending it on a Motability car (and the petrol to run it), on ready meals and takeaways when they can't cook, on adaptive equipment...

(And then there's the fact that if the transport budget was bigger we might have a slightly more functional train network...)

Ministers will spell out plans in the House of Lords tomorrow to bring in a new system to cut the number of 16 to 64-year-olds on the allowance from 2.2million to 1.7million.

I don't see how the Sun can think that taking DLA from half a million genuinely disabled people like me is a source of pride. But it's not like News International are known for their morality.

Changes won't hit disabled children and pensioners.

Well, they will hit disabled children. You see, disabled children have this unfortunate habit of growing up into disabled adults. The only disabled pensioners that get DLA in the first place are the ones who became impaired before the age of 65 (over 65s have to apply for Attendance Allowance instead). The under 65s who get shafted by the DLA to PIP change will, eventually, become pensioners just like those disabled children will become disabled adults.

Under current rules, thousands can get DLA without seeing a doctor and by simply filling out a form.

Bollocks.

There is also no system for checking that existing claimants are still entitled to the cash.

Minister for Disabled People Maria Miller plans to replace DLA with PIP — Personal Independence Payment.

Claimants will have a face-to-face assessment before getting cash and regular check-ups.

Tackled this one last night But in summary: There's such a thing as an incurable condition.

Ministers say MORE disabled people will actually get the highest payments under the new system.

Even if this was true, would it justify so gleefully removing all support from half a million disabled people?

Mrs Miller said: "With DLA there are hundreds of millions of pounds of overpayments. The vast majority of people get it for life. Under PIP, support will be focused on those who need it most."

Again, as I explained last night: It's £220 million lost to overpayments. But of that, only £60 million is lost to fraud (and failing to report a change in circumstances if you've gotten better would count as fraud). The rest is lost to error. And if the DWP are making decisions more often by calling people in for more frequent reviews then you're increasing the opportunities for them to make mistakes.

The Good, the Bad and the unnecessarily expensive

2012-01-16T01:01:00.000Z

A new Comment is Free piece by former Tory MP Paul Goodman appeared online this evening, in which he tried to justify taking money from disabled people and giving it to a company like Atos instead.

He starts out pretending that he might actually live up to his surname and feigning concern for his old constituents. In paragraph number 5 he even uses some actual facts:

The problem with DLA isn't that it traps disabled people on benefits – its purpose is to support the care and mobility needs of disabled people, whether they work or not. Nor is the key issue fraud – which is proportionately tiny: a mere 0.5%.

You can tell he's no longer in office, can't you? If a current MP told the truth about benefits so brazenly Cameron would probably have him bent over his lap, bullwhip in hand, faster than one can say "calm down dear".

The article was clearly an attempt at something of a con. Obviously his thought process was "if you start with the facts people will think you're an honest writer. So then when you slip some bullcrap in 2 thirds of the way through, they'll have built the perception that you're an honest kinda guy and won't bother checking any more."

That's when it goes to shit.

But there is a real problem, and that is error. More than 70% of the current DLA caseload has an indefinite award. There is no effective means of ensuring these payments remain correct. Ministers claim there are hundreds of millions of pounds of overpayments.

You know what, I'm gonna take this one sentence at a time.

But there is a real problem, and that is error.

This is actually pretty true. The fraud rate for DLA is, as he has already pointed out, 0.5%. The rate of customer error is 0.6% and the rate of DWP error is 0.8% (see table on page 12 of this DWP report), so it is the DWP doing the bulk of the ballsing up.

More than 70% of the current DLA caseload has an indefinite award.

This could possibly be true too. Haven't got the figures to hand, it's gone midnight and I want to go to bed at some point tonight so I'll just give him the benefit of the doubt. Next!

There is no effective means of ensuring these payments remain correct.

Here's where he tried to resort to a bit of semantic trickery. You see; if an award was made correctly at the time it was awarded, it's not error. If the recipient's circumstances change and they fail to notify the DWP then that's fraud. He is trying to imply that the fraud rate is greater than it is by trying to paint it as appearing in the "error" column.

Ministers claim there are hundreds of millions of pounds of overpayments.

If you go back to the document I linked to already you'll see that, actually, it's 2.2 hundreds of millions of pounds. The DLA spend is £12bn meaning the overall overpayment rate is 1.9%

He claims that regular reviews would stop people from getting overpaid if they get better. Apparently no-one told him that an incurable condition is for life, not just for Christmas. Do you think he knows many people with cerebral palsy who got miraculously cured? I wonder if his social circle is full of war veterans who lost limbs which then grew back? I know he sat on the opposite side of the house to them, but he must have crossed paths with them sometimes: Do you think he asks David Blunkett and Gordon Brown if their eyesight is getting better? And as it's something I have I'd be very curious to meet someone with magically vanishing osteogenesis imperfecta. One can only assume that Goodman believes that Lourdes actually works.

While the absence of regular reviews might result in a few people getting overpaid, it ultimately works out to the benefit of the taxpayer: You see, most people become more impaired over time; rather than less. But where progression is gradual people don't often notice it quite so keenly. And then there are those who did notice they'd gotten worse but are too scared to call the DWP in case an overzealous Atos assessor comes and takes all their DLA despite them being eligible for an even higher rate.

Today @spoonydoc tweeted the following (and she's proper clever, she wrote the Spartacus Report):

DLA fraud:0.5% at £60mill PIP reassessments £300-500mill over 3 yrs. Cost saving or ideology?

So not only would the government find themselves shelling out more on people that had become more impaired but wouldn't have reported it, they'll also be haemorrhaging money to pay for these new reviews. Mr Badman says "but ducking decisions simply because constituents won't like them is scarcely a noble motive." I concur: But I also think that wanting to stump up more money for no other reason than to persecute disabled people is a rather overpriced way of proving that he is an odious little man.

Ministers getting ahead of themselves

2012-01-15T00:59:00.001Z

The DWP has released a ministerial statement from Chris Grayling. Here's the important bit:

The Minister of State, Department for Work and Pensions (Chris Grayling): The Department for Work and Pensions has obtained approval for an advance, prior to Royal Assent, from the Contingency Fund of £1,000,000. The funding will allow for the development of the IT changes required to introduce new benefit fraud and claimant error sanctions.

A tougher fraud and error regime was set out in the “Tackling fraud and error in the benefit and tax credit systems” strategy published in October 2010 and changes to sanctions and penalties are included in the Welfare Reform Bill. They provide for the introduction of a Civil Penalty for claimant error and strengthen sanctions for benefit fraudsters. To enable their introduction changes to the Departments’ IT systems will be required. The contingency advance will enable the IT provider to begin work in January 2012 giving them sufficient lead in time to commence changes in 2012.

Did you see what I saw? The DWP are getting their IT provider to start re-writing their computer systems so that they can fine people who make mistakes on their benefit claim forms. In order to do that, Chris Grayling has asked for and received one million pounds to pay for it.

Apart from my immediate revulsion at them penalising people for making mistakes on a very complex form at a time when they are vulnerable, and actually spending that quantity of money to enable them to do so, what makes me the most outraged is that they are spending this money when this bill hasn't even become law! The welfare reform bill is controversial enough that it has every chance of being sent back to be re-written from scratch and it certainly hasn't received royal assent. This is actually a trivial example of this behaviour compared to what else they have done though. The DWP has already spent eighteen million pounds out of two billion pounds on starting work on the computer system to run Universal Credit.

The Secretary of State for Work and Pensions (Mr Iain Duncan Smith): The Department for Work and Pensions has obtained approval for an advance from the Contingencies Fund of £18 million to allow for the development of IT for universal credit before Royal Assent. This amount is part of the proposed investment in universal credit of £2 billion agreed at the time of the spending review.

Apparently the DWP has already awarded contracts to Accenture and IBM worth £500m and £525m respectively.

Spending such massive sums of money before the welfare reform bill has even become law is a huge assumption by the department of work and pensions that the bill will pass into law. Perhaps it is common practice for them to start implementing other legislation before the end of the process, and I am unsure what I think of that, but I am sure that this case is too much too soon.

There is something that the DWP has started implementing around the DWP that has me more furious than even the money. The DWP recently sent a letter to every person who claims Contribution-based ESA and is in the Work Related Activity Group. In that letter they warned that the government wants to place a time limit on their benefit and that this could happen in the spring of 2012.

This letter no doubt cause a huge amount of fear and worry for nearly fifty thousand people, warning them of something that might not happen. In this case it might be unfair to blame the DWP for sending warning letters, since we would complain if they did not give any warning. The real fault lies with the government ministers who wrote the legislation in such a way that this benefit would be removed from some people as soon as the bill became law instead of after an appropriate period. I do not think that a bill with such an impact as this should start to be implemented before it has passed the vote. As it is, the house of Lords has amended the bill so that the time limit will be no less than two years and so thousands of people have been put under huge stress about losing their income without reason.

This all comes on top of the finding that the welfare reform bill was written and presented to parliament before the consultation on DLA reform had even finished. Government has got the whole process wrong. The correct order is consult, write legislation, debate, vote, implement law. Not the way that our backwards government does it.

Government filthy tricks subvert parliamentary process

2012-01-12T16:59:00.002Z

Disability campaigners went to bed smiling last night after an apparent victory when the government suffered a huge defeat over key policies of the Welfare Reform Bill. Three amendments were passed that would change the new time limit on contribution-based ESA from one year to a minimum of two years, remove the limit altogether for cancer patients, and would ensure that disabled children with no chance to make national insurance contributions would still be able to receive ESA in their adult life.

But Lord Freud did not accept his crushing defeat so easily. Although the debate on the welfare reform bill finished earlier that day, it resumed again around 8.30pm and Freud introduced a vote on amendment 45a that would render the earlier amendments irrelevant.

Earlier in the day Lord Patel's amendment 45 had removed clause 52 from the bill, which related to children with no national insurance contributions. Amendment 45A rendered amendment 45 useless by re-inserting the content of clause 52 and thus removing future ESA from disabled children. Since amendment 45 had been voted on and passed by the full house, it is against normal procedure to vote on an amendment that contradicts it. Lord McKenzie furiously tried to oppose the amendment but many of those in opposition to the bill had gone home already and so the amendment was passed by 132 votes to 49. It is just speculation but I wonder if Conservative peers were briefed to stay behind. Of the amendment McKenzie said:

"This amendment was in the same group as the amendment on which the Government were defeated but runs contrary to the decision that the House made previously. The assumption is that this matter will not be pressed. Otherwise, the Government give us no alternative but to force a vote on it."

After his first sneaky win Freud attempted to overturn his other two previous defeats however at this point peers were getting very angry with him. Baroness Hollis said:

"I am sure that the noble Lord, Lord Freud, does not wish to appear to be subverting the view of the entire House, which was expressed in the full knowledge that the amendment which we voted on was devised—I devised it—as a paving amendment to a substantive one, so that we could debate it in good time. Most of the population of the House has gone home, believing in good faith that the previous vote has established the principle—as it has. However, the noble Lord is trying to renege on that by forcing a vote despite the late-night keeping of the roster. That would be quite improper and quite unprecedented, and I strongly suggest that he think again."

Lord Bassam said

"My Lords, this is somewhat unprecedented"

At this point it appears that Lord Freud backed down and did not attempt any further amendments.

This behaviour by Lord Freud and the government is astonishing. It cannot be interpreted in any way other than that the government tried to subvert the will of parliament. The language of Hollis and Bassam is important here. Their phrases "quite improper and quite unprecedented" and "somewhat unprecedented" are strong language when it comes to parliament and translate to something more like "what the hell are you doing".

This morning Chris Grayling said to Radio 4 that the government will reverse the amendments to the bill when the welfare reform bill returns to the House of Commons. Grayling does not live in the real world on these matters. He talks about children inheriting money and still receiving benefits. This is confusing, since I think very few people outside of the circles that Chris Grayling moves in will inherit that much money, and in any case, this bill doesn't take benefits away from children who inherit money, it takes it away from ALL of them. Current income related benefits already ask the question about savings and these benefits are not given to people with a few thousand in the bank. Baroness Meacher said on the same programme "The British public do not accept that banks screw up and very severely disabled people pay the bill."

If anyone had previously thought that the government were simply misguided as to what their policy would do they should revise their opinion. This government is corrupt.

Thank you to Karen Sumpter for helping me get my insomnia-addled brain around all of this before noon.

Many thanks to Mason Dixon for uncovering all of this

Live discussion of Welfare reform bill [The Guardian]

Are welfare cuts 'over the line'? - Radio 4 Today [Radio 4]

Welfare Reform Bill Amendments On Disabled People's ESA Income Will Be Overturned, Pledges Chris Grayling [Huffington Post]

This article was first posted on the authors own blog.

ESA amendments success in Lords

2012-01-12T15:29:00.005Z

Yesterday the Welfare Reform Bill (WRB) was debated in the House of Lords. Specifically three amendments that relate to Employment and Support Allowance (ESA).

These amendments were to keep the automatic entitlement to ESA for young disabled people. In order to qualify for the contribution based ESA a person must have made a certain level of NI contributions in the two years before the claim. Previously people such as myself who had never been able to work were given an exemption from this requirement if their disability started before age 20. A kind of levelling of the playing field for those of us who've never had the chance to earn and make NI contributions. If I hadn't had that automatic entitlement to Incapacity Benefit (one of the benefits ESA is replacing) I wouldn't have been able to leave home and go to university. My parents would still be my carers and my mum wouldn't be running her own business.

The government had intended to remove this aspect under the WRB. The amendment called for it to be kept.It was believed that this would be a "too close to call" vote but the Government were defeated with 260 votes for the amendment and 216 against.

The second and third amendments related to the plans to limit entitlement to contribution based ESA to just one year. Some claimants would then be able to go on to claim income based ESA if this time limit did come in in the WRB. But those who had a partner who was working would lose out entirely even if their income is as little as £16K a year. This is likely to lead to increased poverty and knock on affects such as worsening health. Campaigner Sue Marsh has shared how if she lost her ESA the only way they could cope would be if her husband gave up his job to become her carer.

So the second amendment called for the time limit to be increased to two years. This was passed with 234 voting for the amendment and 186 against.

The third amendment called for cancer patients to be exempted from ESA time. In this vote 222 lords voted for the amendment and 166 voting against. This meant an unprecedented third defeat in a row for the government and a much needed boost for campaigners after the work that had gone into promoting The Spartacus Report etc. We haven't won and we can't rest yet but we have achieved something.

Unfortunately however later that evening after most of the Lords had left Lord Freud proposed another amendment to take out the entitlement to ESA for young people. This was passed 132 for, 49 against. At the point this happened the WRB debate had ended. It was restarted for this. As Steven Sumpter explains this is against usual parliamentary procedure and I for one would like to know about the legality of what happened.

The Guardian and The BBC have good coverage of the debates although neither of them cover the sneaky fourth amendment of Lord Freud. The results of the votes are also available.

A Topsy-Turvy World

2012-01-10T23:32:00.000Z

Just a few days after it was revealed that Boris Johnson disagrees with the DLA reforms, Ed Miliband has today reinforced the fact that he is to the right of some of the people that sit in the benches opposite him.

In his speech today at the Oxo Tower - the speech which was supposed to be offering a "new direction" for Labour - he, once again, starting banging on about us "irresponsible" types at "the bottom of society".

Government also has a particular responsibility when times are tough to ensure that rewards go to those who work hard and do the right thing.

That is why we have to take on irresponsibility wherever we find it.

At the top and at the bottom of society.

[...]

We are determined to reform our welfare system too, so that it rewards those who do the right thing.

That’s why I’ve said that those on the waiting list for council accommodation should move up that list if they are contributing to their communities, being good neighbours, and seeking work.

Now, I'm sure his defenders will claim "but he wasn't talking about disabled welfare claimants, just the other ones." Really? The non-disabled ones who already face JobSeekers Allowance sanctions if they turn down, or don't look for, work?

"Those who do the right thing." There's a "right" way to be ill in order to claim ESA? How does that work? Am I supposed to look and act like I've just rolled out of a Children in Need appeal in order to claim DLA/PIP? We all know I'm far too loud and sarcastic to pull that one off. Or is that how they plan to assess for the benefit: Screw taking our limitations into account, just judge us out of 10 on a cute-o-meter?

And as for seeking work to get a council property: What about those of us that can't work and are more likely to need council housing for related reasons? "Well, you're cute enough for ESA but you'll just have to be cute on the streets. It's OK, you're adorable enough for people to throw their loose change in your cup of tea."

We've known for a while the Ed is just a Tory in a red tie (so hardly a "new direction". It would've been more New Directiony if he'd burst into songs from Glee). But for him to reiterate that in the same week that BoJo became a welfare hero just makes your head spin.

DLA reform and the Spartacus Report

2012-01-10T20:57:00.002Z

This article was originally posted to FlashSays on 9 January 2012

Today on Twitter you will see many disabled people and charities saying “I support the #SpartacusReport”. So what is this report and what does it mean?

The Spartacus Report is a piece of research, released today, entitled “Responsible Reform”. It looks at responses to a government consultation about replacing Disability Living Allowance. The report was funded and written by disabled people, and we feel it belongs to us.

Disability Living Allowance is an essential payment, made to people with disabling conditions to compensate them for the additional costs of mobility, and/or care. It is paid whether or not the recipient is able to work, and in many cases makes the difference between being able to leave the house – and go to work – or being stuck at home. For more information on how essential DLA is to people, see my previous articles The real difference made by DLA and DLA – the gateway benefit.

In December 2010 the government opened a consultation on replacing DLA with the Personal Independence Payment (PIP). They had already said that 20% of DLA payments had to be cut, although the government’s own figures accepts that less than 1% of claims are fraudulent. So where would these cuts come from?

A response was published by Iain Duncan Smith, secretary of state for work and pensions, in April 2011. This document claimed to outline the responses of the consultation – from over 5000 individuals and 500 organisations – and the government’s reply to it. However, it glossed over the overwhelming opposition to the proposal of PIP.

Something had to be done. Sue Marsh (“suey2y”) and other disability campaigners joined forces. They came up with the “Spartacus report”. The Responsible Reform report gives the truth of the responses, having obtained copies of the organisations’ responses via a Freedom of Information request.

It shows that
• 92% of respondents opposed the proposal to change from 3 different levels of the Care component, to 2 levels
• 87% of respondents opposed the stopping of automatic entitlement to DLA
• 98% opposed changing the qualifying period from having the disabling condition for 3 months, to having it for 6 months before claiming
• 90% opposed the introduction of new face to face assessments
• 92% opposed change to the review system
• 88% said that aids that a person uses should not be considered when assessing them
• 88% opposed a new change-of-circumstance system involving sanctions
• 94% oppose the introduction of compulsory advice and support
• 64% said that one-off costs should be funded by DLA – it is not clear what this question actually involves
• 100% opposed the removal of DLA mobility component for residents of care homes, and the government have since rescinded this
• 99% oppose the removal or streamlining of passporting (i.e. using DLA as a gateway benefit to other services)
• 54% support the sharing of information between departments

In section after section, the conclusion is “The Government fails to respond to the concerns and suggestions of disabled people”.

It is clear that disabled people don’t want DLA to be overhauled or replaced with PIP, not because it isn’t working, but precisely because it is. The government needs to find the money to sustain DLA payments at their current rates, otherwise disabled people will be the ones who pay the price, by being stuck at home unable to afford transport costs, or lost without essential aids, unable to pay for the prepared food they need because they are unable to cook, or unable to fund the care they require. Please do read The real difference made by DLA in order to understand exactly what disabled people stand to lose. It’s more than just independence and dignity.

So what can you do about this? Read the report: Shortened Report - Responsible Reform and Shortened Press Release. If you’re on twitter, show your support using the #SpartacusReport hashtag. Contact your MP saying something like “This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response.” You can contact your MP using the Write to them website.

Even if you are lucky enough not to be disabled yourself or have any disabled relatives, remember that disability can strike anyone. It is just one car crash, or stroke, or fall, away. One in two people will be disabled at some point in their lifetime. You too may find yourself dependent on disability benefits. Can you afford to ignore this report?

What's wrong with time-limiting Contributory ESA?

2012-01-10T10:04:00.002Z

Another summarising primer on these issues for people who aren't necessarily aware of what's going on with UK disability benefits. If you know all about this already, click here for what we need to do about it today.

There are a few reasons why ESA has not become a national scandal, and one of those is that it sounds complicated. But it is vitally important, if you live in the UK it effects you and I am to try to keep this simple, so please bear with me.

Employment Support Allowance is replacing all the old incapacity benefits. It is awarded to people who are considered unable to work due to illness, injury or disability. There are various different levels of benefit, depending on one's level of impairment and National Insurance contributions.

The most serious issue about ESA in the Welfare Reform bill is that for most people on the benefit, there will be a time-limit of one year. These are people who

(a) are considered unable to work but not considered incapable of work-related activity (people in the "Work Group"). Most people on ESA fall into this category, and it includes people with all manner of severe, chronic and even life-threatening conditions.

(b) have paid enough National Insurance to be put on the "Contributory" rate. So all of these people have either worked and paid taxes for many years or else became disabled at a very young age. Most people who become incapacitated for work do so in middle-age, so most people on ESA, as with the old Incapacity Benefit, had worked for most of their lives up until that point.

After a year, all a person's benefit will be means-tested. This means, if they have a working partner or any savings, then they will not have any income of their own. Those disabled people affected by this change were informed last April, before any parliamentary votes on the matter, that they would lose their benefit after one year. This is going to start effecting people's lives in three months time.

There are four very serious problems with this proposal

1. Hardship

Wealthier people, whose partners have well-paid jobs are unlikely to experience real hardship. Single people without savings will not become much poorer. However, the Disability Alliance calculates that on average, a person on this benefit will lose £50 per week. Many people will lose closer to £100.

A partner's income begins to effect benefits at £7500 a year - that's about a twenty-four hour working week at minimum wage. That's still a rather poor household, who cannot afford to lose a penny.

Benefits for people out of work due to ill health have always been higher than unemployment benefit because

(a) Disabled people have very limited opportunities to improve their situation, which is likely to be longer-term or lifelong - the government's own statistic is that 94% of the ESA "Work" group will not be in work by the end of their first year.
(b) Disabled life is more expensive. We have fewer opportunities to live frugally, such as turning down the thermostat, washing ourselves, our clothes and bed linen less often, cooking from scratch, selling the car etc.. Meanwhile, partner's of disabled people often can't afford to take on extra hours or a second job, even if they are not an official "carer".

Often, people dismiss arguments about hardship on the grounds that poor people get “their rent paid” and all sorts of other goodies. First off, if you don't qualify for a means-tested benefit, you don't automatically qualify for Local Housing Allowance, Council Tax Benefit, Free Prescriptions and so on. Not all poor people rent - they may have a nearly-paid mortgage at the point the main breadwinner gets sick. And these days, social housing is extremely hard come by and Local Housing Allowance isn't stretching to cover many private rents, especially not accessible accommodation. When the cuts kick in, there will be a shortfall of £150 a month between the cheapest place I could physically live in my area and the amount of Local Housing Allowance I would be eligible for.

2. Hopelessness

Becoming incapacitated for work involves many losses and a loss of income, together with a more frugal lifestyle is inevitable. Nobody asks that those unable to work should be paid anything like what a person could earn in work.

However, some disabled people have savings or money they've inherited. People affected by the time-limit will face the prospect of having to live off this money, which either they or someone else had worked hard for, resisting all the temptations they might have spent it on.

There has always been some irony in the disincentives to save money for people who might end up on means-tested benefits, but for disabled people, who crucially, have no other means of improving their situation, this seems particularly unfair. Especially, when the three most common scenarios for a disabled person with savings would be either

(a) They worked very hard for many years and lived very frugally until they became disabled or
(b) Because of their care needs, they were unable to move out their parents' home, so had low living expenses and chose not to squander their low incomes or
(c) Someone else, feeling that the disabled person's future looked bleak, gave or left them a lump sum towards their future security and independence.

3. Pressure on Sick People.

There's no condition in the world, physical, sensory, mental or intellectual, which might benefit from a ticking clock. In fact, I believe the presence of a time limit could be deadly dangerous in two ways:

(a) An increased risk of suicide. When my physical health has been so bad that I have felt like giving up, I have often found deadlines useful. I have thought, “If it is still like this next month, I will kill myself and it'll all be over and done with.” I have experienced depression at times, but usually such deals have been made on the grounds of being thoroughly fed up. Friends with chronic mental illness have talked about doing the same thing in order to put off that terminal decision, whilst leaving the option open for later. However, I also know people who set a date and then proceeded to make a serious attempt on their lives. And this is when the deadline merely signified, “It's gone on too long now.” rather than, “It's gone on too long and I am about to lose all my income."

Last January, Aliquant wrote this post about how, feeling cornered by the benefits system, suicide seemed quite rational. It's a powerful post because Ali was so articulate; she simply couldn't cope with the risk of more homelessness, further hardship or having to jump through any more hoops. Soon after, 5 Quid for Life was set up, a charity to help people like Ali survive when things go wrong. Since then, the benefits situation has been implicated in at least ten suicides.

(b) A disincentive to self-management. Looking after your health, when your health is poor, is jolly hard work. Taking unpleasant medication, getting the right amount of exercise, preparing and eating the right food, resting and sleeping when you need to, visiting the appropriate healthcare workers, getting new complications and injuries treated and resisting naughty behaviours that will set you back, can feel like a full-time occupation. If you know that after a year, you're going to lose all income, unless your health significantly deteriorates, then you've got another major disincentive to look after yourself. I don't believe for a minute that anyone would choose to make themselves more ill, to suffer more and to deal with more health-related rigarmorale, even to shorten one's life expectancy. But a system is being created where being a good patient, hard as that is, could actually cost you money.

I actually find it very distressing when people with far more energy than me fail to look after their health, although looking after is subjective and it is absolutely none of my business anyway. It's probably natural to worry about things that have happened to me happening to other people. However, as some disabled people involved in anti-cuts activism work themselves into the ground and expend twice as much energy in a week than I have in any given year, I am able to reassure myself that, as long as they stay alive, they'll probably wind up too sick to be effected by the time-limit. This situation is all kinds of wrong. There shouldn't be any advantage to getting sicker.

4. Damage Caused to Relationships

Money can't buy you love and poverty doesn't destroy it, but relationships can become a lot tougher when when one partner has literally no income and crucially, no means of bringing in money if they want to. I see three effects of this:

(a) The time-limit interferes with the future relationships of single disabled people. Lisa has written about how the combination of poverty and disability dramatically reduces one's romantic chances, and the prospect of complete financial dependence will make this worse. Means-tested benefits force claimants to either restrict themselves to very casual and discreet relationships or else to place themselves in complete financial dependence on a partner the moment they begin living together – a moment which is rarely well-defined.

(b) The time-limit threatens to undermine existing relationships. Sue has described her fears of becoming a burden on her husband. As Shana Pezaro described, desertion is not an uncommon experience in the face of chronic illness, especially among heterosexual women, and the prospect of total financial dependence will only add to this problem. Some families, especially those with children, may even find that they would be financially better off if they occupied two different households.

(c) The time-limit makes disabled men and women, who are already more likely to experience domestic abuse, even more vulnerable. Disabled people are already twice as likely to experience domestic violence. If you have no income at all, then it becomes easy for an abusive partner to completely deny you access to money, to complain about or restrict your expenditure, whether on food or phone calls, bus fare or medicines. It becomes easy for an abuser to tell you what a burden you are, and how you owe them or deserve to be mistreated, when you are both financially and practically dependent on them.

Unemployed single parents of small children have long had this problematic status, where benefit rules prevent them from having romantic relationships which progress out in the open and at their own natural pace and where the prospect of complete financial dependence can make a person feel as if they are less valuable. This is one of the major reasons that make such families particularly vulnerable to dysfunctional and abusive relationships.

The government's motives for this are deeply cynical.

Years back, when ESA was first discussed by the then Labour Government, the disability blogosphere and messageboards were awash with anxiety about sick people being pressured into work that they just couldn't get. I wrote a post on BBC Ouch! explaining that logically, we had nothing to fear. If Employment Support Allowance was to have a "Work Group", the government simply had to get these people into work. If vast numbers of us were placed in this Work Group, who didn't have a hope of getting a job, we would become bad statistics.

The Conservative Government came up with a way round this, which is to make these people disappear. Anyone on this band of ESA with savings or a working partner will simply disappear after twelve months. They will not add to the unemployment statistics because they have been declared unfit for work. They will not be claiming any benefit at all.

Here is the link I gave you at the top: This is what we need to do now.

#SpartacusReport Day 2

2012-01-10T10:03:00.004Z

Yesterday was absolutely wonderful.

For the first time, we broke through and really found our voice. We trended No.1 on Twitter and kept trending at 2 throughout the day. The support from celebrities and journalists and other bloggers was humbling.

Today, we have a chance to really explain our issues, but despite our desperation and fear we MUST remember that our issues are new to most people. We must trust that the report has it's own strength.

It is backed by Disability Alliance, representing over 380 charities. Scope, Mind, RNIB, Sense, National Autistic Society, ME Action, Papworth Trust and many, many more endorse our report and share its concerns.

Politicans are supporting us. Lords are supporting us. We must give them every chance to hear our evidence and act on it.

The report raises some very serious issues and it is those issues we must explain.

Today, we ask anyone who read and was shocked by the #spartacusreport to wear this twibbon http://twibbon.com/join/spartacusreport and stand with the sick and disabled people of the UK have fought so very hard for this one chance to be heard. We only have a few more days. Lords return tomorrow and the issues we have raised for so long will face votes. If we work together, no matter how exhausted we are, no matter how frightened, we can say we did all we could to make our arguments eloquently, reasonably and most importantly - based on evidence. Evidence that has been painfully lacking in this debate so far.

Can we show today that we are an electorate? That we can be seen, that we can be heard. Every twibbon is a "vote" for the #spartacusreport

If you are sick and disabled wear the twibbon. If you realise that one day, at any moment, you too could face illness or disability and that our fight is your fight, please wear the
twibbon. If you are concerned at the lack of rigour and openness of our government, please wear the twibbon. If you want us to be heard, wear the twibbon.

Keep tweeting, keep sharing and trust that if we work together, we can be heard. Sick and Disabled people can speak for themselves and for the first time, the #spartacusreport allows us to do that. Take this opportunity, take this platform and use it wisely.

I am Spartacus, and I will keep trying everything I can to protect our futures.

Edited by Lisa to add: Kaliya's video...

Transcript below jump taken from http://benefitscroungingscum.blogspot.com/2012/01/message-from-kaliya-and-sue.html

[Kaliya's voice is still very hoarse]

Yesterday we launched the report 'Responsible Reform' known online as the Spartacus Report.

It's been produced entirely by very sick and disabled people and the authors and coordinators of the report have reached the limit of what we can do now.

Sue Marsh's husband has put his foot down and will be taking her to hospital this afternooon. If I don't stop, I'll be following her there.

We're asking you to put your faith in the quality of the research in the Responsible Reform report.

It speaks for itself and does the job for us. So please, look to the evidence...

[catches her breath]

...and try to carry on until we can come back

[ends]

Writers Val McDermid & Kate Long support need consult disabled ppl #spartacusreport

2012-01-09T15:06:00.003Z

How we treat our vulnerable citizens is a measure of a civilised society. The way to do that is not to make high-handed decisions on their behalf but to consult directly with them about their needs and how those needs can be met. It's surely not too much to ask of a government that constantly tells us we're all in this together.

Val McDermid, best selling crime writer

We are not talking here about providing “luxuries”, or catering to a “lifestyle choice”. People with disabilities are simply asking for their essential needs to be met, a right most non-disabled folk take for granted. Frankly it appals me that this issue is even up for debate. What has happened to our society?"

Kate Long, author

Julie Hesmondhalgh (Hayley, Coronation Street) on #spartacusreport

2012-01-09T13:39:00.002Z

This thorough and rigorous report based on proper consultation with the people who will be, in many cases, shockingly affected by the government's proposed changes to DLA and the introduction of PIP, should be right at the heart of any welfare reform. The government's proposals are rash, short-sighted, inhumane and ultimately expensive. The new system is already causing much stress and anxiety to so many people who are frankly dealing with enough.

Julie Hesmondhalgh, actress, Coronation Street

#spartacusreport supported across political spectrum, Christine Hamilton's views

2012-01-09T13:10:00.002Z

Most of us are lucky enough to take the basic functions of mind and body for granted, give or take the creaking of age. But, equally, many of us know someone who is not so fortunate, either within the family or as a friend, or even a friend of a friend.

To enable the most vulnerable people in our society to reach their full potential, we, as a community, must give them the support they need. Changes will always need to be made to adapt to different circumstances, but we must never lose sight of the fact that those who will be affected by any change (or their immediate carers) must be consulted at every stage.

Christine Hamilton

Boris Johnson quote from #spartacusreport

2012-01-09T12:58:00.002Z

The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.

Who's backing #spartacusreport issues? The doctors...

2012-01-09T12:02:00.002Z

The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources.

Clive Peedell, on behalf of NHS Consultants’ Association

It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population.

Clare Gerada, Chair of Royal College of GPs

Ally McErlaine, guitarist, Texas on #spartacusreport

2012-01-09T11:49:00.002Z

I am all for supporting the disabled in society, they are THE most deserving of financial support, having spent some time in a wheelchair myself after my aneurysm 2 years ago I do understand how difficult this is to live with. If we are to be civilised then look after the disabled and old folks too.

Ally McErlaine, guitarist, Texas

Time Limiting ESA / Clause 51 Amendment

2012-01-08T23:41:00.001Z

At the moment the Welfare Reform Bill proposes to limit Contributory ESA (cESA) to one year.

This means that if you become too ill to work (for example, if you develop cancer) and you have a partner that earns more the £7,500pa you will not be entitled to any income-replacement benefit. Could the 2 of you really cope on so little? Especially if one of you has such a costly condition?

Lords Patel and McKenzie have put forward the following amendment:

Page 36, line 34, leave out “365 days” and insert “a prescribed number of days which must be
at least 730”

The vote on the amendment is on this Wednesday, 11th January 2012.

We need to lobby Lords before Wednesday. So far the votes have been close.

The Labour peers are planning to vote for the amendment. It's safe to say that the Tories will vote against. What's important is lobbying the Lib Dems and the Crossbench peers. There's a list of all the Peers that user Twitter here (not organised by party, sorry. But if anyone's got the time to create Twitter lists of the Lib Dem and/or crossbench Peers do let us know!)and there's a list of the Email addresses of Lib Dem peers here.

If you can't convince Lib Dem peers to support the amendment, then the next best thing is convincing them to abstain.

There's further info about the amendment in this pdf from the Disability Benefits Consortium that @kmachin dug up.

What's Wrong with Personal Independence Payments?

2012-01-08T12:19:00.002Z

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be a basic primer for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20% in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

The most significant changes are:

Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.

The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc). Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.

DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance. Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment. If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes. Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to

1. A major increase in unemployment among disabled people.

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll. Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.

2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to

Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly.

Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled.

People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.

3. A major increase in the social segregation of disabled people.

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people. It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.

First They Ignore You. Then They Laugh At You. Then They Fight You. Then We Win.

2012-01-07T10:55:00.002Z

Some much needed positive news....

As most of you know Sue Marsh has been co-ordinating a report researched, authored and funded by sick and disabled people which is released formally on monday.

As happens with every government welfare report, mysteriously, somehow, details leaked out to the media yesterday and so the coverage has already started. It turns out that Boris Johnson's submission to the DLA reform consultation which closed in February 2011 was the smoking gun we needed and the government hoped no-one would ever find. The Mayor's submission stood out from the other consultation responses, not because it was supportive of our claims (almost all the submissions were) but because it was incredibly thoughtful, well written and researched. Some people are concerned that this may be to do with forthcoming mayoral elections. Whilst we understand the concern, we do not believe that is the case as the Mayor's submission was completed in February 2011 along with all the other submissions. It would be very helpful if we could all let Boris Johnson know how much we appreciate his carefully considered and supportive statement over the weekend.

We desperately need to keep up the momentum over the weekend to ensure this becomes an even bigger story.

We all need to pull together to make this happen. If everyone shares the news on their facebook, twitter, google+, blog, email list, friends, family etc we can keep the focus on the report.

AllBigIdeas is collating a list of the news articles here and so far we've had coverage in;

The Guardian, The Telegraph, The Mirror and The Mail!! Yes, you read that correctly. No you're not dreaming. The Daily Mail have actually covered a welfare story, from a welfare campaigners perspective and had to include the fact that the fraud rate for DLA is only 0.5%. Left Foot Forward have always led the way amongst the political blogs with their support for sick and disabled people's campaign against the Welfare Reform Bill and have gone above and beyond the call of duty to help us. They would never ask us for anything in return, but one way we can all thank them for their support is to ensure their articles are widely publicised.

So please, share these stories everywhere, with everyone you know. Leave your opinion in the comment threads, email the papers, contact your local media, tell everyone and anyone. Keep watch here, on Sue's blog and The Broken of Britain and Where's The Benefit for us letting you know the latest developments and most of all take a moment to step back and think.

Finally we are breaking through. We can be ignored no longer. We have truth and justice on our side. The next few weeks will be the fight of our lives, but no-one is better prepared for that than us. We are people who face and overcome challenges in our everyday lives bigger than many ever have to face in a lifetime. We are used to dealing with confusing bureaucracy, lack of proper support and having to find our own solutions. Above all we know how to endure, that however dark the night, tomorrow will be another day and eventually we find another way.

If you are scared, remember you are not alone. We have come together to show the true power of our community and that we will not be ignored. If you think you won't be affected by these cuts, remember those who will. If you think it'll never happen to you, remember anyone's life can and does change in an instant. We fight this battle not just for ourselves, but for you, your family and loved ones to make sure that in the darkest times of your life the protection you need and have given to us will be there for you.

With love from Kaliya and Sue.

"Alone We Whisper. Together We Shout"

Open Comment to Liam Byrne

2012-01-02T22:34:00.001Z

I just posted this in response to Liam Byrne's article in the Guardian.

"And what do you propose Liam? When you disappear off into your think tanks and focus groups?

For over a year, you have avoided meeting with me. You promised, but you haven't discussed your plans with sick and disabled people.

You talk of "unearned support" Liam, but this is the Guardian! Here, on these comment threads, we all know the details of ESA, DLA, contributory time limiting and independent living funds very well - almost certainly much, much better than you do Liam. We know about the hundreds of thousands terrified about what happens to those who CANNOT earn support. Until recently, we believed you gave it freely.

You have the audacity to attack an erosion of ESA?(time limiting) When it was your government who introduced this terrible failure? Your government who wrote the descriptors making it simply impossible for many conditions to qualify? "like employment and support allowance that working people have actually paid in for."

Then, you dare to criticise the appeals system for the failure of ESA? When you have ignored me and Kaliya Franklin and all others who have been trying to warn you for years? When we warned you repeatedly? when we tried everything, some risking their lives to engage with you? "current chaos in the assessment of those on disability benefits, with spiralling appeal times and poor back-to-work support, deeply troubling."

You let Ed loose in the Daily Mail then think you can throw us a bone with a few tag on lines about ESA and disability? We already know this is a pattern! Give the scroungers a good kicking then say something nice and fluffy about sick and disabled people in the Guardian.

NOT GOOD ENOUGH.

I strongly recommend you stop dreaming up ways in which the welfare state can be auctioned off to the highest private bidder - even planning the very systems in partnership with those very same businesses and insurers.

I suggest you :

Listen to the suggestions and alternatives of disabled people.
Look at our ideas and policy suggestions
Stop designing policy based on a complete disregard for the evidence
IMMEDIATELY stop reinforcing the scrounger narrative - it makes a Labour Party look utterly ridiculous and confirms dangerous stereotypes.

We will win the public Liam. I promise you. By 2015, we will have made this the "NHS 1997" issue.

So stop casting around for spurious, tough-talk soundbites, that conveniently stuff a few billion more in private pockets and get a real strategy on disability.

I suggest you do it very quickly indeed. Those prepared to apologise for these failures may retain some credibility.

The arrogant will simply be exposed as those who oversaw the biggest abuse of sickness and disability rights and protections since the welfare state was introduced."

Oh but it's an honour, your Majesty.

2012-01-01T16:45:00.000Z

The New Year Honours List 2012 makes for some depressing reading. There's not just one, not even two, but twenty DWP employees getting an award.

I'm sure some of them are decent people. Some might even be good at their job. I once spoke to a helpful guy in the DLA office: His name was Graham. The fact that I can still remember his name about 10 years later gives some indication as to the sparseness of DWP employees that can tell the difference between their arse and their elbow.

However these people are just doing their job. Those of us fighting against welfare reform are doing so without recognition, without reward, and at great cost to our physical and mental health. The pay cheque the DWP employees get each month is their reward for their work.

At a time when DWP employees are screwing disabled people so hard that it's resulting in numerous suicides their being rewarded makes a mockery of the whole system. OK, I'm a republican so in general think the system's a bit off. But there are occasions where people get rewarded for genuine outstanding contributions to society; and rewarding DWP employees undermines their honour.

Here's the list of DWP employees:

CBE

Malcolm Whitehouse. Formerly Deputy chief Information Officer and Group Applications director, Department for Work and Pensions. (Chester, Cheshire)

OBE

Mrs Susan Harding. Formerly Programme manager, Change Programme, Department for Work and Pensions. (West Bridgford, Nottinghamshire)

Roger Ernest Pugh. Team Leader, Stakeholder Team, Communications, Department for Work and Pensions. (Hull, East Riding of Yorkshire)

Arthur John Row. Deputy Pension Centre manager, International Pension Centre, Pension, Disability and Carers Service, Department for Work and Pensions. (Blyth, Northumberland)

MBE

Derek John Alldritt. Formerly Senior Executive Officer, Child Maintenance and Enforcement Commission, Department for Work and Pensions. (Kingswinford, West Midlands)

Mrs Margaret Bates. Formerly Senior Executive Officer, Jobcentre Plus, Department for Work and Pensions. (Atherstone, Warwickshire)

Garry Chambers. Head of Business Management, Commercial Directorate, Department for Work and Pensions. (Sheffield, South Yorkshire)

Mrs Phyllis Close. Executive Officer, Department for Work and Pensions. (Thornton-Cleveleys, Lancashire)

Ms Marika Fawcett. Executive Officer, Private Office, Department for Work and Pensions. (Berkshire)

Ms Andrea Haynes. Executive Officer, Jobcentre Plus, Department for Work and Pensions. (London, SE1)

Mrs Sheila Hinds. Formerly Executive Officer, Pension, Disability And Carers Service, Department for Work and Pensions. (Nuneaton, Warwickshire)

Mrs Bernadette Holgate. Higher Executive Officer, Debt Management, Department for Work and Pensions. (Stockport, Greater Manchester)

Mrs Jacqueline Howell. Executive Officer, Jobcentre Plus, Department for Work and Pensions. (Lincolnshire)

Mrs Joan Little. Executive Officer, Complaints and Appeals Directorate, Child Maintenance and Enforcement Commission, Department for Work and Pensions. (Houghton le Spring, Tyne and Wear)

Mrs Sarah McKiernan. Finance director's Office manager, Jobcentre Plus, Department for Work and Pensions. (London, E15)

Alexander Nairn. Executive Officer, Pension, Disability and Carers Service, Department for Work and Pensions. (Dundee)

David Orrell. Senior Executive Officer, Pension, Disability and Carers Service, Department for Work and Pensions. (Preston, Lancashire)

Mrs Antonina Robinson. Executive Officer, Jobcentre Plus, Department for Work and Pensions. (Birmingham, West Midlands)

Mrs Karen Mary Robson. Executive Officer, Jobcentre Plus, Department for Work and Pensions. (Hull, East Riding of Yorkshire)

Paul Taylor. Front Line Service manager, Corporate IT, Department for Work and Pensions. (Lytham St Annes, Lancashire)

Things to do this Christmas: Please act on and share this post!

2011-12-19T11:00:00.002Z

There are so many things that need doing this festive season in the fight against the welfare reform bill and the closure of the ILF I thought I'd collate all the actions in one place. If there's anything I've missed out, please, please post it in the comments.

The most important thing to do is to sign Pat's Petition to get the Welfare Reform Bill paused for reflection. Activists manage to get the NHS bill paused to buy themselves more time to present evidence of the harm it would do: We need to do the same for the WRB. The petition needs 100,000 signatures and so far it's only had 7,935. We're a long way off but it can be done if people sign and share; in the summer petitions around punishing rioters reached the 100,000 mark in a day or 2. But it requires people putting in the effort and giving a crap. Please, please, sign and share this.

Other government e-petitions that need signing while you're on the e-petitions page:

Someone has started a petition to make it a criminal offence to maliciously report someone for benefit fraud. With 96% of calls to the benefit fraud hotline being malicious in nature, falsely accusing someone of benefit fraud is a major form of hate.
The other relevant e-petition is to save the Independent Living Fund. In a guest post for us last year, Martyn Sibley explained the importance of ILF funding. On a related note; DPAC are collecting signatures opposed to the ILF closure on a campaigning letter to be circulated next year.

The Welfare Reform Bill is currently at the report stage in the Lords. Votes on amendments like DLA and contributory ESA will be held in January. So far the votes have been really close with the amendment on the frequency of Universal Credit payments being defeated by only 3 votes and the amendment to not halve disabled children's benefits losing by only 2 votes. The government has suffered one defeat so far in the under-occupancy amendment. In that vote there was even one Tory peer who voted against.

This all shows that we can make a difference at this stage if we put pressure on the peers. We mainly need to target the Lib Dem and crossbench peers, but Lord Newton of Braintree has proved that even Tories can be persuaded to vote against these barbaric cuts which will have devastating outcomes for disabled people.

Some of the info in this template letter is now outdated as it was drafted back in September. But the list of contacts for Lords is useful for getting in touch and sharing your concerns. Tell them that you're worried about the effect arbitrarily slashing 20% from the DLA budget will have, tell them that limiting contributory ESA to one year is ludicrous as many - possibly even most - serious ongoing illnesses don't clear up within 365 days.

There's also a list of the peers that use Twitter. Tweet at them with your concerns, send them links to articles and blog posts that you feel express your worries best. As with writing EMails or letters; it's best to target your energies at Lib Dem and crossbench peers, but it can't hurt to send your concerns to all peers; Lord Newton of Braintree having proved Tories can be persuaded to vote against these brutal cuts.

Some members of the House are either depressingly ill-informed or simply liars. Lord Wolfson claimed on Question Time 2 weeks ago that disability benefits have the highest fraud rates. This is desperately untrue. One of our readers, Joss, has written to Wolfson pointing out his statement lacking in factual basis. I would urge you to do the same; not just to Wolfson, but to any Peer you happen to catch spouting inaccuracies. It's possible they are simply ill-informed rather than malicious so it's important we make sure they are informed before they go to vote.

Other petitions apart from ones on the government's own page:

The Lords have already voted to allow disabled children's benefits to be cut as part of the bill, despite the fact that 4 in ten disabled children already live in poverty before that cut comes in. Every Disabled Child Matters have set up this e-action to Email David Cameron (who once had a disabled child himself, of course...)
Scope have set up this action to try and save legal aid for benefits appeals. 14,000 people every year are vindicated when their DLA rejection is overturned; Legal Aid is a lifeline.

There are many campaign groups out there that have had tremendous success this year but have done little (if anything) to engage with these welfare issues. We need to get their support.

38 Degrees have had so many successes this year like getting the forestry sell-off cancelled and getting the NHS bill paused. We really need their help but they're reluctant. They say they only carry out campaigns their members ask for so tell them loudly and clearly that you want them to campaign against welfare reform! Blogger Chrissy sent them this excellent Email and I'd suggest you do the same. It also occurs to me as someone with a bit of a background in the voluntary sector that if an organisation receives a restricted donation earmarked for a specific cause they have to either spend it as the donor requests, or return the money. With bodies like 38 Degrees funding their campaigns through asking for member donations, I don't see why one can't send them a restricted donation earmarked to only be spent on fighting the welfare reform bill. Not as underhand and manipulative as it might sound; charities get restricted funding every day, and returning unspent restricted donations is not uncommon either. They need to know people are willing to pay for an anti-WRB campaign, so give them the message loud and clear!

If you are, or you know people who are, in the UK Uncut inner circle then please beg them to do something. Occupations ditto. OccupyLSX were asked by WtB to support Hardest Hit rally in London in October. They didn't. Please, please try to change this.

And finally, get this to-do list out there. Tweet it, post it on Facebook and Google+, link to it from your blog, and Email it to all your friends. Ask left-leaning slebs or those who've shown interest in disability issues to retweet it. And not just celebs, of course: Ask anyone who can get the list of actions shared on to a greater audience. But most importantly: Do the actions too! So many people these days will retweet or share a link to a petition without actually signing.

We've only got until January to stop this list from exploding exponentially in 2 years when the proposed WRB would come into effect. Don't let this happen. Please do something to stop it.

DLA? Denied

2011-12-18T19:49:00.004Z

This weekend has seen much justifiable outrage at the fact that disability rights activist Sue Marsh has been turned down for DLA.

But many of the comments I've seen seem to think this is an isolated incident of just one genuine claimant getting their application rejected. In fact, according to the table on page 14 of this DWP report from March 2011, in the 2009/10 year 36,000 people appealed their decision and 14,000 people had the decision overturned.

That's 14,000 vindicated Sues per year.

And then there are those who decide not to appeal because they don't have the strength to fight, because they don't have sufficient self-confidence or because struggling on in poverty seems easier than dealing with the bureaucracy. According to the Minister for Disabled People (*cough*) Maria Miller on 6 Sep 2010; records are not available of unclaimed DLA. but it's worth reading the stats for other unclaimed benefits on page 2 of this DWP report. The rate of underpaid other benefits varies from 0.3% to 2.1%.

It's from 2004 so quite outdated, and only looks at unclaimed DLA/AA by people with one condition: Cancer. But this report by Macmillan suggested that at 2004 benefit rates that more than £126.5 million goes unclaimed in a six month period. And that's only people with cancer, and doesn't take any other "disabling" condition into consideration.

Sue's story seems to have shocked people because she put a human face to the real problems faced when claiming benefits. A human face that isn't a Daily Mail-ised version of a disabled person. To help people understand how widespread this problem is I'd really like to hear from more people with similar experiences.

If you've similarly been turned down for DLA despite being a genuine claimant in the 18 months since the coalition came to power, please post your story in the comments of this post. Thanks.

Huge thanks to @queerpup for unearthing statistics for me today. My Google Fu has decided to go on Christmas holidays a few days early.

Press Release: Welfare Campaigners to Hold Xmas Party Outside Atos HQ

2011-12-14T18:36:00.000Z

From Benefit Claimants Fight Back:

Friday 16th December – 2pm
Triton Square, London NW1

Disabled people, benefit claimants and supporters will be holding a Real Victorian Party and Picnic in Triton Square, home of disability assessment company Atos, this Friday 16th December from 2pm.

The event is part of a month of action targetting Atos and the government over the brutal benefit cuts and Work Capability Assessment regime currently in place for sick and disabled claimants. As well as speeches in which people will speak of their experiences at the hands of Atos, a minutes silence will be held for all of those who have died as a consequence of Atos assessments.

Several claimants have tragically committed suicide due to the stress of the assessment process whilst thousands of others are now caught up in lengthy and distressing appeals. Some people judged fit for work have died of their illness whilst awaiting an appeal against Atos' decisions. People with terminal illnesses, severe mental health conditions and debilitating conditions have all been judged fit for work by Atos' scant assessment regime which ignores the opinions of GPs and specialist consultants in favour of a brief computer based interview.

It was announced last week that even patients undergoing chemotherapy will be expected to attend assessments at which they may be judged 'fit for work' by Atos. This could lead to cancer patients being referred to mandatory work activity, 30 hours a week unpaid work, just to keep the meagre levels of benefit available on Job Seekers Allowance.

Events will also be taking place outside Atos offices in Glasgow and Edinburgh on the same day, whilst a rolling mass phone complaint to Atos is also being held in the run up to Christmas.

For full details of all events please visit: http://benefitclaimantsfightback.wordpress.com

ENDS

This event is part of a month of festive action against Atos and the benefits cuts which has also seen a protest against Atos' position as IT Partner for the Paralypic Games outside the Paralympic Goalball Test Event, a demonstration called by Boycott Workfare outside a lecture at the LSE given by Iain Duncan Smith and a Downing Street protest about soaring unemployment held by the Right To Work Campaign.

To join the Rolling Festive Phone In to Atos contact +44 (0)20 7830 4444 or +44 (0)800 783 3040 (Freephone) and make a complaint about the companies treatment of sick and disabled people. For more details visit: http://benefitclaimantsfightback.wordpress.com/2011/12/08/a-rolling-festive-phone-in-to-atos-healthcare/

Around 40% of appeals against Atos' decisions are successful, rising to 70% when people have representation. A recent investigation found that the benefits appeal system is already on the brink of collapse. Recent figures suggest that Atos have only carried out 56,000 assessments against a target of 11,000 assessments a week from April 2011: http://www.ersa.org.uk/hub/details/571

This form of disability assessment is shortly to be extended to around 3 million claimants on Disability Living Allowance.

Now it's Real. First Cancer Patients, Now Government slash benefits for Disabled Children

2011-12-13T14:10:00.002Z

Last night, the House of Lords failed to support an amendment put down by Tanni Grey-Thompson, the most successful paralympian of all time, to protect the benefits of disabled children once Universal Credit is introduced.

You can read more here http://www.family-action.org.uk/section.aspx?id=14225 but effectively, under universal credit, all but the most profoundly disabled children will only get half as much support. Child Tax Credit additions for disabled children will fall from £52.21 per week to £25.95 per week - a loss of £1366 per year, or £20,000 over the course of a childhood.

You might wonder what possible argument a government who promised to "protect the most vulnerable" could possibly make for this change. I myself was fascinated to see how on earth they had justified throwing disabled children to the wolves.

Ready? OK, if they didn't betray disabled children, it would just have to be disabled adults. After all, disabled children have parents to look after them. What's more, if they didn't cut money used to buy wheelchairs and incontinence pads for disabled children, they wouldn't be able to afford to address the hideous failures of ESA (Employment and Support Allowance or sickness benefit) and ensure that all those who qualify for long term support, get it.

Could there be a more disgusting example of divide and conquer? Each man for himself. The image of a Victorian gent throwing a handful of pennies on the floor and leaving the cripples to fight it out amongst themselves comes to mind.

And remember, this is no longer theory.

I've been writing about these issues for 18 months now, sadly my blogs have often contained doom and gloom predictions of horrors to come. Well last night they started to come in a first blaze of in-glory. The Welfare Reform Bill is now at Report Stage in the Lords. These votes will almost certainly decide what becomes law and what doesn't. For disabled children, now it's too late.

Shame on us.

There is one more session before Xmas. Then 4 sessions after Xmas, then the final no-going-back vote to pass the bill. There is still time to lobby peers. There is still time to stop the time limiting of ESA. http://diaryofabenefitscrounger.blogspot.com/2011/12/time-limiting-esa-template-letter-to.html There is still time to oppose PiP and abolishing Disability Allowance. http://onemonthbeforeheartbreak.blogspot.com/ There is still time to fight Clause 52 http://www.guardian.co.uk/commentisfree/2011/dec/08/conservative-compassion-disabled-sick and housing benefit changes that will leave thousands of sick and disabled people at risk of homelessness.

In a week where the government suggested all cancer patients undergoing chemotherapy ought to be assessed to see if they can work or not, I can only wonder where this will all lead. I can only hope history is no guide the future

If I can find any tiny silver lining, it is that we only lost by 2 votes. That is the closest vote I have seen so far.

2 votes. 2 Lords. 2 letters, 2 emails, 2 tweets.

There is still all to play for, but sadly disabled children just fought the last stage of their fight. And lost.

#HardestHit Jedi Mind-Tricks

2011-12-10T20:30:00.000Z

This is a guest post by Lisa Ellwood. You can find her website at thecreativecrip.com.

Morale within the disabled community has seemingly hit a new low, no thanks to the ideological war being waged by the millionaire cabinet at Westminster and their sockpuppets in the media. Desperate times call for desperate measures in making our voices heard. However, these are also the moments when it is necessary to detach our emotions from much-needed outcomes and scrupulously examine so-called helping hands.

I was broadly aware of The Hardest Hit campaign, seemingly in support of disabled people against the genocidal ideology driving the Welfare Reform Bill. Being an avid social media user, I first head of it via Twitter. My understanding was that a number of large charities were behind this effort and initially I felt that the campaign could give us incentive to carry on with the fight, knowing that we had powerful, high-profile entities behind us. We needed to find a "middle way", I rationalised, of bridging the gap between our need to raise awareness about the dangers of on-going welfare reform and the efforts of the charities who would deem to represent us.

The disabled community was split on the issue. Being a relatively new-ish crip, I took on board the justifiable ire of fellow campaigners towards the so-called "poverty pimps". These large charities are reliant on government funds to stay afloat, certainly more than they seem willing to admit to. As such, their bottom line will be driven by the dictates of their bank balance more than the ethics of what is right and fair for disabled people. Despite all this, I took a leap of faith and decided to support the campaign in spite of nagging doubts. My past work with The Broken of Britain aside, I set up Crip Island in Second Life and my own take on Occupy Second Life as a means for creative virtual participation outside of Twitter and Facebook for those unable to take to the streets and protest.

Little did I know.

The Hardest Hit website makes some valid points in a bid to help, but all signposts lead back to the big charities who profit from government workfare schemes. Like private entities such as A4E and ATOS, these charities will profit from our misery as they pander to the disablist anti-benefits ideology being enshrined in law. These smoke-and-mirror Jedi mind-tricks were understood early on by DPAC, who withdrew their initial support in April of this year prior to the first march.

"we were concerned about working with the major disability charities because unlike Tom Shakespeare for example we do not believe these major charities have completely broken with their past practices or have acknowledged their role in disabled people’s social oppression..."

Marches are one thing, but now many disabled people and Carers have signed the Hardest Hit Christmas Card for the Coalition - without looking very carefully at what they are agreeing to. The campaign wants "a fair benefits system" for Christmas, but their idea of what is fair is anything but.

"Please make the New Year something disabled people can look forward to by:
Not bringing in an arbitrary time-limit on Employment and Support Allowance for those who’ve paid into the system and still need support."

As tweeter @BubbleJet observed: "Are #hardesthit using 'those who've paid into the system' rhetoric? Am I not being hit? Do I deserve to be?" What about those who were disabled from birth, those disabled early on in their youth or those who worked but not long enough for their efforts to account for much in the minds of politicos who have never had to account for much in their own privileged lives?

The language in this petition is divisive and pits those who were fortunate to be employed against those who weren't. Agreeing to it is akin signing your own death warrant -- and those of others who are disabled through no fault of their own. There can be no doubting that disabled people are "the hardest hit" by welfare reforms past and present -- and it's time grass-roots campaigners and organisations not reliant on government patronage own it.

Related articles
What's your Christmas message to the Government? (lass.org.uk)
DPOs boycott charities’ ‘independent’ review of mobility needs (dpac.uk.net)
U-turn on mobility payments is just the start (guardian.co.uk)
Protests highlight severity of benefit cuts for disabled people (guardian.co.uk)
Hardest Hit Campaign Rally Bradford (n1ck1ee.wordpress.com)
For disabled people on the Hardest Hit march, protest is personal | Frances Ryan (guardian.co.uk)
Why disabled people are annoyed (bbc.co.uk)
Hardest Hit March, Bristol, 22nd October 2011(wurzelmeone.wordpress.com)
Disability groups fear further benefit cuts after miscalculation (guardian.co.uk)
Pause welfare reform to listen to the Hardest Hit (burdzeyeview.wordpress.com)

[The image is a photograph of a poster reading "Hard times hit parade". It was taken by Roland Tanglao and is used under a Creative Commons Licence]

Crimestoppers

2011-12-10T11:00:00.005Z

This week Crimestoppers launched a new campaign to "fight benefit fraud". They say this is in response to benefit fraud being deemed the third "most worried about" type of crime in a poll they ran this year. (Hat tip to @Debbiegeorge65 for pointing out the link.)

This is despite the fact that there is already channel for reporting benefit fraud. And despite the fact that 96% of calls to the National Benefit Fraud Hotline are malicious or timewasting. David wrote a bit about what it was like to be falsely accused of fraud back in January.

It's worth reading the official fraud stats on page 12 of this latest report to compare fraud to error and also to see how much is actually lost to fraud. But here are the fraud rates:

Income Support: 2.4%
JobSeeker's Allowance: 4.1%
Pension Credit: 2.3%
Housing Benefit: 1.3%
Incapacity Benefit: 0.3%
Disability Living Allowance: 0.5%
Retirement Pension: 0.0%
Carer's Allowance: 3.9%

The benefit with the highest rate of fraud is JSA at 4.1%. Certainly a far cry from the lies in the Daily Mail that 94% of IB claimants are fakers.

But it's because of these lies that the voters in the Crimestoppers poll would think that benefit fraud is so prevalent. And these lies go totally unchallenged in the mainstream press. This week on Question Time judge Constance Briscoe claimed there were vast swathes of fakers out there, but when asked how many she, unsurprisingly, didn't know. Next boss Lord Wolfson then claimed that JSA wasn't the benefit with the fraud problem, but disability benefits. The same disability benefits whose fraud figures I've italicised so you can clearly see just how low those fraud rates are. No-one corrected him. (Mehdi Hasan has written a blog post correcting some flawed statements from the episode, but not the disability benefits one.)

According to those same DWP figures, the overall cost to the country of benefit fraud is £1.2bn. About a fifth of tax avoided by just one company: Vodafone. It's certainly a far cry from the £35bn to £70bn avoided in tax in total. So why aren't Crimestoppers campaigning against tax issues rather than pouring fuel on to the already raging fires of hate?

It's worth noting that while researching for this post I Googled "tax fraud facts," the top (non-sponsored) result isn't actually anything to do with tax fraud: It's the HMRC page about tax credit fraud. Which says everything you need to know about how our society prioritises those wildly differing amounts of cash lost to fraud on the basis of the perceived social status of those committing the crimes.

Time Limiting ESA - We MUST stop it!

2011-12-09T17:28:00.000Z

It seems that the Conservatives are simply not willing to give an inch on Time Limiting ESA.

Just to be clear, this means that if you have worked and paid national insurance contributions you will face an assessment. If that assessment finds that you are indeed unwell, but may be able to do some work at some point, you will only qualify for support for a year.

At the end of that year, no matter how ill you remain, if you have a partner who earns just £7,500 or more, or limited savings, you will lose all ESA. All of it.

Those with long term, serious illnesses, mental health conditions and learning disabilities are likely to be the worst affected. Sickness benefits as we know them will become a thing of the past. Just 6% of new claimants will qualify for long term support, the rest will have just one year.

I have written about time limiting extensively here (click for article)

The government accept that 94% will not have found work at the end of that year. They accept that they will not have recovered. They simply say "We can't afford it" http://www.publications.parliament.uk/pa/cm201012/cmselect/cmworpen/1015/101502.htm

The only way we can now stop the government from going ahead with this most horrifying of policies is for Lib Dem Lords to vote against it.

Earlier this year, Lib Dem grasroots members voted for a motion and amendment at their conference opposing an arbitrary time limit for ESA. The vote was overwhelmingly in favour.

Here is the amendment in full :

After C. (line 25), insert:
D. That vulnerable cases like this, where a welfare recipient’s income is threatened ,should qualify
for free legal representation.

Delete 2 (line 35) and insert:

2. Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can
claim contributory ESA.

In 3. (line 36), after ‘representation’ insert: ‘and expert advice, and for Government to reconsider
the exclusion of welfare benefits casework such as this from the scope of legal aid.

After 3. (line 36), add:
4. A presumption that ESA claimants with serious and uncontrollable life-threatening conditions
should be allocated to the support group rather than the work related activity group.

5 A review of ATOS performance in delivering the Medical Services Agreement contract with
DWP in respect of the quality of medical assessments.

6. Effective contract compliance for contractors carrying out ESA eligibility assessments to avoid
poor performance, and a presumption that in future ESA eligibility will be carried out by the
public sector or non-profit organisations.

Once this vote was carried, opposing the time limiting of ESA became Liberal Democrat policy.

Today, I'm asking all of you - Liberal Democrat or not - to write to a Lib Dem peer and beg them to oppose the one year time limit. Here is a list of Lib Dem peers http://www.libdems.org.uk/peers.aspx

Simply click on a letter at random, pick one and write to them. Beg them. Explain it to them. Feel free to send them my articles. Remind them about their conference pledge.

They're our only hope. If they support the Conservatives on this, despite the wishes of their members, 700,000 people will be affected. People with Parkinson's, Bowel Disease, MS, Cancer, Heart Failure, Kidney Failure, Lung disease, Schizophrenia, Bi-Polar and any other condition you can think of.

Please, write today. Then write again. Pick another peer and then another and keep writing until after Xmas.

Very early in the New Year, Lords will vote on this issue for the final time. It is only this vote now that stands between time limiting ESA becoming policy.

Please, if you've ever sent one of my letters, every RTd an article because I asked, every written to your MP, every written a blog post or an article, please, do this. Keep doing it until the day of the vote. Tell everyone and ask them to write too.

The welfare reform bill is almost law now. We don't have very many opportunities to make a difference. Let's make a difference over this.

**Feel free to re-post, share, RT and generally make sure that everyone knows, thanks.

The following articles may help:

http://diaryofabenefitscrounger.blogspot.com/2011/03/today-im-launching-my-new-campaign.html

http://diaryofabenefitscrounger.blogspot.com/2011/09/funds-already-in-place-to-go-ahead-with.html

http://diaryofabenefitscrounger.blogspot.com/2011/05/why-labour-still-have-it-wrong-on-esa.html

http://diaryofabenefitscrounger.blogspot.com/2011/03/welfare-reform-that-must-not-go-ahead.html

You're frightening me

2011-12-04T19:59:00.000Z

It started with a blog post, where David Gillon challenged 38 degrees about why, despite a disability benefit cuts campaign receiving lots of votes, it never reached the 'call to action' stage.

Then there was an article (now amended) which described an athlete's move from Paralympic to Olympic competition as a "move up".

I then read in Jezebel about a sex worker who is awesome because she works with disabled clients, which apparently makes her intriguing.

And I started to wonder, what do you think of us? Of me? In these three stages, the mainstream, and the left-wing, tell me that I am inferior, and I am other. So very, very other.

Then Lisa Egan wrote a post (trigger warning) about suicide, and her despair at the lack of support from even campaigning organisations, and I still, somehow, didn't cry.

Then, finally, the article that did make me cry, in which I learned that 2/3 of people avoid disabled people because they don't know how to act around us. In addition,

A third of those questioned demonstrated hardened negative attitudes towards the disabled. Reasons cited for this ranged from disabled people being seen as a burden on society (38%), ill feeling around the perceived extra support given to disabled people (28%), and the personal worries and sensitivities which rise to the fore during a recession (79%).

It went on,

Some 60% of Britons admit to staring at disabled people because they are different, with more than half of people (51%) admitting they feel uncomfortable when they meet a disabled person for the first time, with more men (54%) admitting to being uncomfortable compared to women (50%).

At a time when cuts are actually killing disabled people, we are also experiencing more negative attitudes, perceptions of being a burden, an additional cost, especially during a recession. How very inconsiderate of us to not wait to attain crippled status until the economy is fixed.

If you're questioning whether this is a feminist issue, then the point is being missed. I am a woman who 38% of people polled consider to be a burden. I am a woman who 2/3 of people polled admit to avoiding for reasons of prejudice. I am a woman who 50% of women polled admitted to being uncomfortable to meet. I am a woman who is witnessing her friends become more and more afraid to leave the house, for fear of government- and Daily Mail-inspired abuse in the street. I've experienced it myself.

There are so many issues at the moment which are putting us all into a state of crisis. This is one of many: people are starting to frighten me. Is the person I'm talking to one of the 38%? Or the 50% Or the 65%?

Given that women are the hardest hit by spending cuts, and disabled people are the hardest hit by spending cuts, disabled women are being overlooked, avoided, resented, marginalised and othered. It takes non-disabled people, at this stage, to make some of the changes that need to happen.

This post is cross-posted from The F-Word, so it was originally written for a feminist audience, from a feminist perspective. I don't underestimate, or mean to downplay, the impact of cuts on men. However, in the context in which this was written, I was focused on women. Also posted at incurable hippie blog.

[The image is a photograph of handmade print next to one of the stencils. They read "FEAR MORE HOPE LESS". The photograph and artwork are by Ben Murphy and are used under a Creative Commons Licence]

Not OK

2011-12-03T22:11:00.005Z

Suicide and depression have been in the news a lot this week. First footballer Stan Collymore talked openly about his depression. This was followed a day later by news of the suicide of Wales football manager Gary Speed. Then that delightful chap Jeremy Clarkson "joked" on The One Show that trains shouldn't stop for jumpers.

Warning of possible triggers in discussion below the jump:

Suicide is a subject that, sadly, comes up on WtB a lot. We've talked about several cases of people who've killed themselves after losing their benefits; from Paul Reekie who was the first case we heard about, up to the most recent case we know of: the Mullins'. A few weeks ago Patrick Butler collated a list of all the benefit-related suicides known thus far.

We've had posts discussing the risks and we've seen other posts around the internet in which people talk about the impact of welfare reform on them. We get so many comments from people talking about their plans to kill themselves if/when they lose their benefits that we've had to put contact details for the Samaritans on the sidebar of our page.

I don't often talk about my mental health because people just don't want to hear it. I know first hand all about how people just avoid you when you talk about how much you're hurting.

I've had depression on and off my whole life. More specifically I have reactive depression: When the going gets tough; my ability to feel anything other than darkness and emptiness gets going. Sure I've thought about suicide, I thought about it a lot in my mid-teens when my life was a fucking mess. But it was never more than an abstract thought because I was always so convinced that life would get better. Though death crossed my mind a lot I was quite certain that life had to get better than it was and I wanted to still be around to enjoy the good things I believed would come.

Before I got prescribed a small amount of morphine for the really bad pain days I would every few months have a day where I was in so much pain that thoughts of suicide would rush my brain. I couldn't help but think that if I killed myself the pain would stop. But I knew that it was just that day and in a couple of days time things would be fine again. And now I do have access to painkillers that actually work which is why I've only had pain-induced thoughts of death a couple of times in the last 2.5 years. Like I said, there's the thought of it getting better to keep me going.

In my many bouts of depression since my mid-teens the same thought has always stayed with me: That it would get better eventually. It had to. But since May, thanks to the Welfare Reform Bill, I've not been seeing the light at the end of the tunnel. For 6 months I've been feeling something I've never felt chasing my heels before: A deadline after which things will never get better.

I'd obviously been campaigning against welfare reform for a year when May's news came out. I've always had a compulsion to try and make the world a better place; I couldn't sit back and let the government shit all over disabled people. But I believed in my head that I would be OK in the end. Typically it's people with invisible conditions that get hit hardest by things like benefit assessments and my impairment is very visible; all I have to do is roll up my sleeves and trouser legs to show off my deformed limbs. I was prepared to have to fight to save my benefits; I was expecting that I might have to appeal ESA decisions before things got right but I believed eventually it would turn out OK. Yes, it would be a stressful path but I expected I'd reach the end of the path eventually. I was mainly campaigning to protect other people because I was so convinced I was safe.

On May the 18th - I remember the date because it was the day after my birthday so I was already having a really fucking lousy week - I read the draft proposals for PIP; the replacement for DLA. Those proposals contain something I never saw coming: From the end of 2013 I will no longer be eligible for the benefit. At all. Like I said, I was perhaps expecting a fight during the reassessment process but the idea that the goal posts would be moved quite so far had never occurred to me. I was mentally plunged into a big black hole and I've been here ever since.

Quite simply without my DLA I will not have a car so I will not be able to go shopping. Without the benefit I will not be able to afford online deliveries as an alternative to shopping myself. I will not be able to bring my medication home from the pharmacy. With not being able to get food or medication I can't see how I can possibly last long.

Because of my physical health problems my quality of life is already low. Since I had to quit work due to illness I've been unable to afford a proper social life: I don't go see comedy or live bands any more. Benefit claimants are not rolling in cash like the Daily Mail would have you believe. When you constantly have to cancel social engagements because you're so frequently ill your friends drift away from you very quickly. My only social interaction these days is online: Facebook and Twitter are more valuable to me than most non-disabled people can comprehend; it's the only chance I get to engage with others. With even less money I will have to sacrifice my broadband connection and with it my entire social life will be lost. I will be completely isolated from everyone.

My whole life I've been a film/TV geek. As a child I spent a lot of time in bed with broken bones. I would watch videos and I basically became a human Carry On film encyclopaedia. Shit book though it was I identified so much with that aspect of Willow's character in Jodi Picoult's Handle with Care, the retaining and constantly spewing out knowledge because while other kids are out being active you just read and watch. In recent years TV has become my only solace from how awful life is. My measure of a good TV show is if it can make you forget for an hour how shit your life is. I immerse myself in the fantasy worlds of the LVPD crime lab, the NYPD 12th Precinct, the Caltech physics department and the Tardis. If I go a few days without that bit of escapism I become noticeably more unhappy because I'm constantly forced to think about all the shitness in the real world. It's one of the few things that makes life bearable and I can't see what could keep me sane without being able to afford cable TV, broadband allowing me to access iPlayer, the occasional box set or even the electricity to turn my telly on. I don't have grand dreams any more, I just want a bit of escapism from the pain and sadness. The government don't even want me to have something so simple. Just the thought of having to give up my telly addict ways has made me cry harder than any of the preceding paragraphs thus far. Switching on the telly is something that most people take totally for granted; they flop in front of The X Factor or watch QI on the occasional Friday night when they happen to be home without giving it a second thought.

Like I said, my quality of life is already low. There's this cultural assumption that being ill or impaired is innately miserable. It's not. If I had enough money for a minimum standard of living my life could be OK. I could afford to go see comedy or bands. I could afford the occasional holiday. I calculated back in February that in 2010 I was living on £67 a week less than the Joseph Rowntree Foundation recommend for a minimum standard of living.

The other day I was having a conversation with a Tory who accused me of using "strong language" when I pointed out that welfare reform is forcing disabled people to commit suicide. He felt there's no forcing going on. I had to explain that one needs money to live in this world, if you deny people money they have no way of carrying on. I'm not saying it's a bad thing we need money - I'm not actually anti-capitalist (though I do think the current system needs majorly tweaking) - but it's a fact. If we can't exist without money and we have no money we either have a choice of a prolonged decline or checking out quickly.

The Welfare Reform Bill is only one Lords reading short of Royal Assent. Then that's it, all hope is lost and I have that deadline of 2013 when my life will actually become unliveable. I don't want to die; I may not have grand dreams any more but there are simple things I still want to do in life: I want to learn to sing, I want to go to Comic Con. Things I can't afford to do even now. Like I said earlier, I've got a feeling of this ominous deadline when I lose my DLA in 2013. All those times in the past when I was low and I knew it would get better seem like a distant memory. It's almost impossible for me to even visualise 2014; I look into the future and instead of seeing hope I just see darkness.

The current feeling of sadness is compounded by the fact that it doesn't need to be this way. People could have fought against the Welfare Reform Bill but they chose not to. I've always been acutely aware of how much society hates me because I'm disabled; the disablist-motivated abuse when I was in primary school made sure I had it drummed into me for life that I am a second-class citizen. I had thought things were getting better in recent years with things like the Disability Discrimination Act, but clearly I was a gullible fool.

This year has seen a cornucopia of anti-cuts activity, but most of it has been geared towards saving libraries and trees. I don't see it as a zero sum game, I've campaigned about issues other than the WRB. But apparently the mainstream left does see it that way: The anti-cuts movement chose to fight to save libraries rather than lives. There's nothing quite like that knowledge to really make you feel despised.

Earlier this year I had a brief exchange with someone about discrimination who replied "I think people do care, though it may not always feel like it." In other words, I'm paranoid and imagining it that no-one's fighting for me. There are some very effective campaign organisations out there like 38 Degrees and UK Uncut, but we haven't been able to convince them to get on board. I had a (surprisingly late, I guess I really am a closet optimist) realisation this week of the utter futility of trying to fight the bill when we can't even convince campaign groups to campaign.

I presume this post won't get read much; monitoring the hits that come to WtB I've observed that posts going up on a Saturday night get little, if any, traffic. In the unlikely event that it does I'm sure I'm going to get rightwingers accusing me of behaving like a petulant child; I've seen it before. I've seen other people talk about how we need money to live so without it we can't go on, and the response is an accusation of emotional blackmail: People accuse the author saying "give me what I want or I'll kill myself." People who don't seem to grasp the concept of how in our society one needs money for food. It's not emotional blackmail; it's the basic stuff kids learn in primary school about how one needs £1 to buy a loaf of bread.

For those of you that know me in real life; please don't worry. In a minute I'm going to sit and watch Supernatural and transport myself into an escapist world of vampires and demons. I may be feeling low but I'm not feeling immediately suicidal. Just because I can't see past the end of 2013 doesn't mean I'm planning on checking out any time soon. I do still want to realise as many of those little bucket list dreams as possible. I'm not planning on harming myself in any way, shape or form right now. I can promise with almost absolute certainty that I'll be OK until my DLA goes away.

I'm not in need of the Samaritans or anything like that, though this current low has got me pondering one question: We advertise for people to call The Samaritans for a listening ear, we encourage people to call welfare advice lines to make sure they're getting all they're entitled to. But where do we point people when they simply do not have the cash to go on and they're not entitled to any more money because that entitlement has been removed? It's a serious question we need to find an answer to quite quickly if our society doesn't want to see that list of suicides increase exponentially.

People with depression often talk about a black dog. Ordinarily I find the idea of a night that just won't end to be a more appropriate metaphor for depression but at this particular moment I think the dog is more apt. It's like I have inside my head a little black toy dog - the kind of pet Paris Hilton would carry in her handbag - haunting my thoughts. The real threat isn't that teeny black dog, it's too small to be properly harmful, it's just a bit yappy and annoying. However with the Welfare Reform Bill the government have unleashed a huge black wolf that's threatening to destroy me in 2 years time when DLA ends. It's so big it's completely obscuring the light at the end of the tunnel. The government still have the power to kill the wolf, but with people not demanding they do so it's unlikely the govt will.

Edit 3am Monday: Thank you so much for all the kindness everyone has shown to me today. I think I've spent as much of today crying out of sentimentality as I did yesterday out of sadness.

But I beg of you, please don't just read, be horrified and pass on. Please do something. Please pile on the pressure to campaigners like UK Uncut and 38 Degrees. Please, please, please just do something. The country "did" when it came to the forestry sell-off and got it stopped. Like I said earlier; it's so crushing to know that activists could've put a stop to this but they just couldn't be bothered to do anything because we're not as trendy as trees.

It occurs to me as someone with a bit of a background in the voluntary sector that if an organisation receives a restricted donation earmarked for a specific cause they have to either spend it as the donor requests, or return the money. With bodies like 38 Degrees funding their campaigns through asking for member donations, I don't see why one can't send them a restricted donation earmarked to only be spent on fighting the welfare reform bill. Not as underhand and manipulative as it might sound; charities get restricted funding every day, and returning unspent restricted donations is not uncommon either.

If you are, or you know people who are, in the UK Uncut inner circle then please beg them to do something. Occupations ditto. OccupyLSX were asked to support Hardest Hit rally in London in October. They didn't. Please, please try to change this.

The other practical thing you can do is sign Pat's Petition to try and get the bill paused for "reflection" in order to buy us a bit more time to campaign. This post has had more than 1,000 hits on Sunday but the petition has only gotten a couple more signatures. It needs 100,000 to get a debate in the commons. At this rate not only will the bill be passed by the time it's got 100,000 names, but DLA will be on its last legs too.

A final thing you can do is write to your MP. If they're a Tory (probably the case for Lib Dems as well) you'll just get back a letter full of lies about how they're protecting the "most vulnerable". Removing DLA mobility from manual wheelchair users and handily leaving out any kind of criteria for people who need supervision for safety is not protecting vulnerable people. But it might work if you've got an oppositional MP just because it gives them something to oppose (though Ed Miliband has expressed his support for cutting DLA).

Really, proper final thing you can do: Write to a Lord. Pick a Lord, pick any Lord. Pick several. Write to them, beg them to see what they're doing. The Lords is where the bill is right now and there's only one reading left. There's a list of Lords and their contacts here: http://wheresthebenefit.blogspot.com/2011/09/template-letter-to-lords-re-welfare.html

Once again, thanks for you kindness. I'm feeling a lot less worthless than yesterday.

Some good news... For a change

2011-11-29T21:41:00.001Z

There had been questions about whether or not the government would actually increase benefits in April 2012 in line with September's 5.2% inflation.

Fortunately in today's Autumn Statement Osborne announced that working age benefits will be going up by 5.2% after all. This will include the disability component of Tax Credits, but not other Tax Credits.

The other bit of good news is that The Times is reporting today that the government is set to abandon it's plan to confiscate the mobility component of DLA from those resident in care homes. This must be a huge relief to residents who had been facing the prospect of effectively being sentenced to a life of never going out again. Though Sue Marsh speculates that the idea was only ever a tactic to make the government appear sympathetic by giving one concession.

You Couldn't Make it Up...

2011-11-24T15:31:00.001Z

We already knew that the Welfare Reform Bill was making some creative interpretations of standard parliamentary behaviour - such as putting a controversial bill into Grand Committee, but the nuance I found out about a couple of hours ago had me picking my jaw up from where it had hit the floor.

I was already aware that Clause 102 of the WRB was going to introduce measures to allow DWP to recover overpayments made through its own errors, which may seem obvious and reasonable, but is more of a problem than most people will realise. The problem is that errors in payments may go on for a period of years before errors are noticed (a friend of mine had underpayments stretching back a significant number of years before DWP admitted there was an error), and by the time the error is realised we may be talking about a very substantial amount of money, particularly for someone living far below the poverty line on benefits. Equally that overpayment will have led people completely innocently into expenditure that they wouldn't have made if they had been budgeting for the amount DWP should have been paying them. They may not have been entitled to the money, but in a very real sense they will be the ones punished for the DWP's error.

Lord Freud insists that the DWP will be understanding about repayment rates, but frankly their reputation for being understanding about anything isn't good. As I say, I knew about this provision, but what had my jaw bouncing off the carpet was learning that it is going to be retroactive, an ex post facto law is the technical term. Why is it going to be retroactive? Because DWP have been forcing people to pay back overpayments for a while now, and have just realised it might not actually have been legal.

Now a normal person would expect the reaction to be a bunch of red faces, and then a quiet apology and re-payment of the sums involved to people who have bullied into repayments they couldn't afford and weren't legally obliged to make. But that isn't how DWP-think works. If DWP has broken the law, then the best way to react isn't to make amends, it is to change the law retroactively so that what they did is now legal, even if it wasn't at the time they did it, and that is what clause 102 of the Welfare Reform Bill does. Many countries (such as the US, and Iran) outlaw ex post facto laws, and the UK is theoretically forbidden from ex post facto criminal law by the European Convention on Human Rights, but there's no exclusion from passing ex post facto civil law, and apparently we have something of a tradition of it. I think that's something that will shock people, I know that it is something that has shocked me, and isn't it reasonable that we should expect government to obey the laws of the land as they stood at that time, not gerrymander the law to retroactively legalise their illegal cockups?

Sick? No you're not!

2011-11-19T09:20:00.002Z

This news item is worrying. Scary, in fact. GPs should 'not sign off long-term sick' [BBC] I've quoted most of it here, with my responses.

People should be signed off for long-term sickness by an independent assessment service and not GPs, a government-backed review says.

Strange. The government trusts GPs to run the NHS but not to decide who is too sick to work. Yet they trust Atos and Group 4 who have a proven record of ignoring evidence and making wrong decisions. I wonder which company the government will outsource this "independent" assessment service to?

The review also suggests tax breaks for firms which employ people who suffer from long-term conditions.

This, I actually like.

It is estimated the changes would send 20% of those off sick back to work.

This is blatantly a move in favour of employers and against employees. Tories always side with people with money. Perhaps the government should instead ask why so many people are sick.

A Department for Work and Pensions spokesman said: "The government is committed to supporting more people with health conditions to work."

Supporting? They mean forcing. Whether it's what people need for their health or not.

Around 300,000 people a year are absent from work due to long-term sickness.

Perhaps there is some problem other than people pretending to be sick. Perhaps being forced to do too much work for too little pay is the problem. Perhaps employers should pay more and stop sacking people and then forcing other employees to do the work of more than one person.

The review also calls for a new government backed job-brokering service, to find work for people cannot stay in their current job because of their condition.

Great idea. But don't force it on people that shouldn't be working at all.

A survey suggested 77% of GPs had admitted they signed people off sick for reasons other than their physical health, the report authors told the BBC.

What, like MENTAL HEALTH? This is an absurd, biased statement that ignores a huge part of health care.

The government asked Professor Carol Black and the former head of the British Chambers of Commerce David Frost to consider radical changes to deal with the human and financial cost of sickness absence in the workplace.

Ah. "Deal with". Because it must not really be sickness.

If the recommendations are accepted people who are signed off sick would also be put on to Job Seekers' Allowance, instead of Employment Support Allowance, for a period of three months.
They would receive less money and have to prove they were looking for work.

This is outrageous. In fact, it's evil. When someone has been signed off sick the last thing they need is to be forced to look for work. Being made to visit the job centre every fortnight can be very difficult and highly damaging to what little health remains. Looking for a more suitable job means being forced to leave the job you are in and abandon hope of going back which can be crushing. Even if there are jobs which a sick person could manage to fit around their problems, most employers would hire a healthy person, which means endless applications and rejections which cause stress, which in turn aggravates both mental and physical health problems. Sometimes a GP will sign a person off work because they need rest, both physical and mental, in order to recover from their illness.

The government's new policy to deal with the costs of sickness in the workplace appears to be to pretend that people aren't sick at all.

---Update---

As is pointed out by Paul Cotterill at Liberal Conspiracy, Atos founded the Commercial Occupational Health Providers Association (COHPA) which has seats on Dame Carol Black’s select committee for occupational health and the Council for Work and Health. COHPA boasts

COHPA has been active politically in trying to represent the interests of commercial OH providers to Dame Carol Black, Government and key bodies in the industry.

It seems likely that Atos will be well placed to bid to assess people for time off work.

Charley Says 'Why We Need A Welfare State' 1948

2011-11-17T15:26:00.000Z

A public information film from 1948 explaining why the welfare state is important:

Sometimes surreal, but basically brilliant. The auto-transcribed subtitles aren't that much worse than the subtitles on live telly like the news. Though I'm sure the state was handing out "maternity grants" rather than "maternity bras."

Via Benefit Scrounging Scum.

Disabled people occupy the UK / Occupy Sheffield access info

2011-11-14T00:23:00.001Z

While I hadn't been able to join an occupation on a Sunday, I went to my local occupation this afternoon and spent an hour or so there drinking tea and putting the world to right. What follows is not an in-depth access survey, but is rather the impression I got, based on the information I was told or observed.

The Sheffield Occupation is in front of the Cathedral, so trams and buses stop nearby. It is on a flat courtyard and while there are some steps to access it from some directions, there are sloped alternatives alongside them.

The Occupy Sheffield has one portaloo, which is not accessible. The local Quaker Meeting House is offering the occupiers use of their toilets, and they do have wheelchair accessible toilets on each floor (with lift access to each floor). Once they close from 9pm - 9am, use of the portaloo begins, excluding many disabled people from using it.

The closest Changing Places toilets to the site are at Sheffield Town Hall and at Ponds Forge Sports Centre.

They have generators for electricity, but try to only use these at night. They also have gas heat, which is basic. If you need electrical power for any of your equipment, this could be problematic at the Occupy Sheffield camp. If you have a need to keep warm that would go beyond wrapping up really well, then again it may be an inaccessible protest for you in that respect too.

There is a good supply of food and hot drinks. I was the only visibly disabled person at the camp when I was there, but talked to a man who was a mental health service user. Another disabled person had clearly been at the camp at some point too. This photo is of a piece of paper taped to the main tent, which reads "I am one of the few disabled people who has a job. I am mad about what our society has become. I am the 99%".

The photo at the top of the post is of the main tent. It has a large banner on it, reading "Occupy Sheffield", and another fabric banner reading We Heart NHS. It was taken by me.

WtB Podcast - 3. #myDLA

2011-11-13T11:15:00.004Z

Transcript:

On Friday November the 11th several of the right wing newspapers were running dubious stories about DLA; varying from slightly massaging the facts to suit their agenda to out and out bollocks.

In response writer Lucy Glennon asked people on Twitter to use the hashtag #myDLA to tell their stories about claiming DLA and how they spend it. Inspired by this I asked WtB readers to submit short audio files with their DLA stories. This is what people had to say:

Person 1: I get DLA as I am bedbound with ME. My DLA review was
refused on paperwork and then it was stopped completely when I had a
medical because apparently, I don't look disabled. It was reinstated
at the highest rates after my MP became involved. The whole thing took
18 months to get sorted out and it shouldn't take an MP's involvement
to get the basic rate of support in this country. Daily Mail articles
are just full of lies and hate and I just don't understand why? What
did we do wrong? We've done nothing wrong, it's just so pointless.

Person 2: I have an invisable illness. It took me two years, a medical
assessment, two appeals and a tribunal to get my DLA. It was highly
damaging to my health. Because my illness is also variable, I let my
DLA lapse when my health improved for a while and now I've relapsed, I
have to go through it all again.

Person 3: My DLA is how I buy equipment. It pays for the electricity
that keeps my ventilator powered. It pays for the electricity that
keeps my feeding equipment powered. It pays for my electric
wheelchair, without which I would be completely unable to mobilise and
it pays for other smaller things like incontinence pads or special
cutlery, plates - all the things you can't really get from the NHS.
Really, without my Disability Living Allowance, I wouldn't be able to
survive and I would die without my ventilator.

Martyn: Hello, my name is Martyn Sibley. I'm 28 years old. I've been
disabled since birth due to a genetic condition called Spinal Muscular
Atrophy. I just wanted to take a little moment to share with you
#myDLA, the way I use Disability Living Allowance. Due to my
disability, I qualify for both the higher rate of care and the higher
rate of mobility component of the benefit. Obviously the overall point
of the benefit is that it recognises the additional costs that result
from being disabled, living in a society that exists at the moment.
The care part of my component enables me to employ full time care
assistants to enable me with getting out of bed, general personal
care, domestic chores and also getting out of the house and socially
being active in the community. The mobility part of my DLA is also
enabling me to drive my adaptive car, without which I would find it
very very difficult if not impossible to get anywhere beyond the
distance in a wheelchair. And because I have that adaptive vehicle, I
am able to drive myself out for work, which means I am contributing to
the economy, and also I'm able to get out and about and spend the
money I have earnt, back into the shops and cinemas and bars, again,

putting back into our economy too. So I hope that illustrates the
picture that DLA enables me to live a very full and independent life.
And if you want to look at it from a very economical perspective as
some of the right wing press seem to want to do today, I am actually
far more valuable to our society and our economy when I am able to be
out there, living a great life, working and spending my hard-earned
money. Thank you very much.

Person 4: Without my DLA, I wouldn't have personal assistants. I would
be stuck inside all of the time. I wouldn't be able to eat. I wouldn't
be able to get out of bed. I wouldn't be able to move around my house,
go to the toilet or enpty my catheter bag. Without my DLA I would be
moved to a nursing home. I'm 25 years old and that would be the end of
my life.

Jack: Hello, my name is Jack and my DLA supplies us with a reliable
car and helps us towards essential costs such as energy, special diet
foods, medication and travel to appointments and many many more
things. Without my DLA I would be less independent and not more. This
would force me to be more reliant upon my partner and the social care
system. It took me six weeks of all my useful hours to fill out the
application form. That is 36 hours and resulted in a form including
evidence that was hundreds of pages long. I would hardly call that a
simple form.

Louise: My name's Louise and I'm a working claimant for Disability
Living Allowance. I receive middle rate care and lower rate mobility.
I have epilepsy which means I don't have a driving license any more
and haven't done for the last 15 years because my seizures are
uncontrolled. I use the mobility allowance mainly for taxis because I
am a working journalist, I am out and about a lot and sometimes it's
quite difficult for me to get around. Sometimes journeys would take
for example an hour, and hour and a half whereas by car they might
only take 20 minutes as I am reliant on public transport so that's
where the money goes on taxis. For the care allowance, which I get the
middle rate I use that to buy in meals for after I've had seizures and
I'm not well enough to get out of bed and cook for myself, or
sometimes I'm just too tired from the medication and just don't want
to make the effort, so on those days I will do something like order a
takeway over the internet and have it delivered.
I also occasionally use my DLA for things like buying in the
assistance of a cleaner for the days when I'm too tired and too ill
tobe able to do things like vacuuming my home. For me it is an
absolute lifeline. I really wouldn't be able to manage without because
of the things I am able to do with that extra money. I don't earn a
lot of money for my work. But the DLA helps me with all those extra
costs and if I was to stop receiving it under the proposed changes, I
would probably have to stop work, that would mean I would be thrown
back completely onto benefits whereas while I'm working and receiving
DLA which enables me to keep working, I'm actually paying back into
the pot, I'm paying my taxes and my National Insurance. For the state
that's actually a lot cheaper than taking away my DLA and stopping me

from working.

Person 2: My DLA form was so overwhelmingly
long and difficult that I had to get a charity to fill it in for me.

Eleanor: Hi, my name's Eleanor. I use my DLA to help me with
transport, to get train tickets. I also use my DLA to get support for
doing housework that I can't do, to get some shopping. I also use my
DLA to help to adapt my flat so I can negotiate my everyday living.
And I use my DLA to help me buy equipment.

Pippa: Hi, my name's Pippa, also known as Incurable Hippie. I'm one of
the bloggers with Where's the Benefit? I get DLA for my mental health
problems. The difference it makes to me is massive. I can get very
extreme anxiety which will stop me from going anywhere or doing
anything and I use my DLA for things like taxis or my telephone bill
to help me get support, taxis to appointments for instance. Another
thing it's very helpful for is that sometimes when I'm unwell I'm not
safe to use things like sharp knives and heat sources and I can use my
DLA to spend the extra money on things like ready meals which make it
a lot easier to be able to eat. Without my DLA I would be a lot more
isolated, I would have less contact with my friends, which is a very
important part of me staying as well as I can, I would miss
appointments, which are also clearly important in helping me stay
well. And I would overall become a lot iller, which would of course
cost the government a lot more in treating me, perhaps in hospital or
certainly more intensive treatment. So not only does DLA help me, it
also helps the government save money, because it reduces the risk of
me getting so ill that I would need a lot more expensive care.

Lisa: You can read all the My DLA tweets Lucy collated at http://storify.com/LucyTweeting/mydla

There’ll be another episode of the WtB podcast… Eventually. In the meantime you can find our blog at wheresthebenefit.blogspot.com, you can ‘like’ us on facebook by going to www.facebook.com/wheresthebenefit. You can follow us on twitter @wheresbenefit (there’s a character limit on twitter usernames and we didn’t have room for the “the”. So we’re just @wheresbenefit) or if you’ve got anything you want to ask us, or you’d like to pitch us a guest post for our blog then you can Email us at wheresthebenefit *at* gmail *dot* com

Thanks for listening!

Disabled people occupy the UK / Occupy LSX access info

2011-11-11T20:55:00.000Z

It's that time of the week when I remind you about joining occupations on Sunday.

I'm afraid that living in London I've only been able to scout out access info for Occupy LSX. Perhaps if you visit one of the other occupations you could post access details in the comments below?

If you're worried about getting cold and needing to get inside and warm up: The occupation is simply surrounded by cafés. There's all your big chains (Starbucks, Costa, Pret, Paul, etc) within sight of the tents. Tents are actually erected outside Starbucks, Paul and Tea, you can get from the occupation into these outlets within 10 paces.

Accessible toilets: There's an accessible toilet in Tea (I noticed it through the window as I was pushing past, I didn't go inside and scope out the interior of the cubicle). There's also an accessible toilet in One New Change (which is apparently open 24 hours). I wouldn't be surprised if other cafés also contained accessible toilets but they were the only 2 I found. The Costa across the street has a toilet, but not an accessible one; it's in the basement with no lift. Might be useful to know for anyone that can do stairs but is likely to need the toilet urgently. There are Portaloos on site but I didn't see an accessible one. According to the Changing Places website, the nearest Changing Places toilet is at the Tate Modern 0.45miles away.

I also understand the people who want to camp at the occupation for a night can ask in the Welcome Tent and be allocated an available tent. I can't see why someone with fatigue issues couldn't get allocated a tent for one hour if needed.

Hope to see you on Sunday.

DLA: just a form filling exercise? If only it was that easy!

2011-11-11T20:33:00.004Z

In the early hours of this morning, this is the appalling story with which the Daily Mail were leading. “Disabled benefit? Just fill in a form”.

They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”

The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.

How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.

Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn't it? Detailed, isn't it? Daunting, isn't it?

As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.

Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on "just" the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment - GP, specialist consultant, main carer and so on - plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as "just a form" but it’s hardly as if I got my DLA based purely on my own testimony.”

The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?

Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!

And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin - he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can't accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I've nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.

If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.

Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.

Well, Daily Mail? What’s so unreasonable about that?

It is hard enough to get a DLA award as it is. Please, don't say we've got it easy.

Call for #myDLA podcast submissions

2011-11-11T14:54:00.004Z

You may remember that 6 months ago (wow, it's been a long time!) we briefly had a WtB podcast (can be found in iTunes here or on Feedburner here). It floundered because most of us have been too ill to run with it.

Today there are a couple of DLA hate stories in the right wing press. Tweeters have started using the hashtag #myDLA to share in a sentence or two how important their DLA is an how they use it.

I think it would be awesome of we could do an audio version of this; especially as - of course - not everyone uses Twitter but might want to tell their story.

How to submit:

Record your submission as an audio file. You can use your laptop's built in mic, the "voice notes" function on your iPhone, or your digital dictaphone if you have one.

Ideally we'd only want your submission to be a sentence or 2 long. The shorter they are the more we'll be able to cram in. You don't have to speak in perfect Queen's English, it doesn't matter if you say "erm". You can mention your name or you can be anonymous; it's totally your call.

You can talk about your trials claiming DLA to counter stories about people filling in a form. You can talk about what you spend it on. Anything that conveys how important it is to you.

Once you've recorded your brief submission then Email it to wheresthebenefit *at* gmail *dot* com. I'll try and put it together ASAP.

I can't promise that all submissions will be included; it will depend on how many I get. I'll reiterate the point from above: The shorter the submissions are the more I'll be able to squeeze in.

Thanks all for your contributions. The end result can be found here.

Not In My Name.

2011-11-09T21:34:00.001Z

Yesterday I wrote about why Workfare is exploitative and unfair, especially for disabled people. Today I want to talk about something insidious and disturbing within the plans for rolling this system out, and this is the details of who stands to benefit.

Firstly, there are big companies who have signed up, unsurprisingly, to get people to work for them without a need to pay them, such as Poundland, Matalan, Tesco and Primark.

Secondly, there are public sector organisations who want to benefit from unpaid labour, such as the local councils of Barnsley, Blackpool, Bromley, Chester, Dudley, East Riding, Gateshead, Greenwich, Hartlepool, Islington, Kensington, Medway, Neath Port Talbot, Newham, North Lanarkshire, Northumberland, Portsmouth, Renfrewshire, Stoke-on-Trent; numerous further education colleges; and several NHS trusts.

And thirdly, and perhaps most disappointingly, is the depressingly large number of charities and third sector organisations who are seeking to benefit from people being forced to work without pay, at threat of loss of their benefits.

Just some of the organisations who the DWP state will be involved in delivering the Work Programme, are:

Action for Blind People
Autism West Midlands
Disability Information Bureau
Disability Works*
Enable
Hammersmith and Fulham MIND
Leonard Cheshire Disability
Papworth Trust
Remploy
RNIB
Rochdale and District MIND
Royal Mencap Society
Royal National College for the Blind
Scottish Association for Mental Health
Shaw Trust
The Mind Consortium (Hull and East Yorkshire MIND)
Warrington Disability Partnership

These are the organisations from the list that stood out to me as disability organisations. Organisations ostensibly to represent and fight for the rights of disabled people.

Last year I wrote about Disability Works, a "collaboration of national third sector disability organisations including Leonard Cheshire, Mencap, Scope, Mind, Action for Blind People, United Response, Pure Innovations, Advance UK and Pluss". I argued in May that the Hardest Hit organisers could not represent me or fight for my rights when they also stood to benefit from the proposed changes in welfare reform.

Now Disability Works are amongst all of the above voluntary sector disability organisations who are seeking to benefit from workfare. Along with all the other charities above, and with all the problems Workfare will cause for disabled and non-disabled people, we simply cannot trust these organisations to have our best interests at heart. They, along with Primark and Tesco, aim to profit from labour which is unpaid, unfair, and is carried out against a threat of a loss of benefits.

These big disability charities do not represent me, they do not have my interests in mind, and they do not speak for me.

Not in my name.

Cuts Kill. Again.

2011-11-08T19:13:00.000Z

In the video above you hear the story of a couple and their fight of being caught up in a system where they could not get any benefits because the woman's learning disabilities were undiagnosed. Unable to get either JSA or disability benefits, they lived in one room, and walked 12 miles once a week to get free food from a food bank.

“The job centre decided Helen couldn’t sign on as she was incapable of employment, as she has no literacy and numeracy skills. However the incapacity people wouldn’t recognise her disabilities until she has been properly diagnosed, which led to month after month of seeing specialists, we’re in a catch 22 situation.

“We’re living hand to mouth.”

It has been reported today that the couple in the video above have been found dead in an apparent suicide pact. How many more people will die from these cuts before the government acts?

Workfare: Exploitative and cruel, especially for disabled people

2011-11-08T17:34:00.000Z

Some disabled people are completely fit for work, but cannot find any, so claim Jobseekers' Allowance. This is particularly an issue because disabled people face many barriers to work, including inaccessible workplaces, employer prejudice and employers being ignorant of, or refusing to adhere to the Equalities Act in relation to reasonable accommodations.

Increasingly, however, disabled people who are not fit for work are finding themselves claiming Jobseekers' Allowance, when they are reassessed and fail to meet the limited criteria for ESA. The result of this is that more and more people are signing on, but also unable to work, for health reasons.

The Guardian has published a press release from the DWP, which states,

People who have been unemployed for more than two years and haven't secured sustainable employment could be referred onto compulsory community work placements under plans being considered by the government.

Under the proposals people who have been supported intensively through the Work Programme for two years yet have still not entered sustainable employment, may have to do community work or ultimately they could lose their benefit entitlement.

Ministers believe a minority of jobseekers struggle to engage with the system fully, are unable to hold down a job and therefore require a greater level of support.

The government is to test compulsory community work coupled with more intensive support through Jobcentre Plus in four key areas ahead of rolling out the scheme
nationwide in 2013.

This is fundamentally unfair. We are in a position as a country where unemployment rates are rising, and job opportunities are shrinking. If someone has failed to get a job in 2 years, it is most likely to be due to circumstances outside their control, and to then force them into unpaid labour, against the threat of losing their pittance of an income from JSA, is exploitative.

For disabled people, even moreso. People who are disabled but genuinely fit for work will still require adaptations, accommodations, and accessibility. These people are less likely to have found a job in 2 years because of the reasons I explained above. And will the people who are happy to take unpaid labour also be happy to accommodate people with complex needs and requirements?

And those who have been found fit for work but are, in fact, not at all fit for work, will be in the most trouble. All of the above, on top of not being well enough to do it. Will their regular sickness absences or inability to be reliable cause them to lose their benefit entitlement? I would imagine so, according to what the press release says.

Workfare is exploitative and unfair to everybody who is forced to do it. For disabled people it has added layers of unfairness, which have the potential to leave, yet again, the most vulnerable abandoned without financial support.

Cross-posted at incurable hippie blog. Thanks to @m_s_collins for prompting me to write this.

[The image is a black and white photograph taken at a protest in New Zealand against a Workfare programme. There are numerous people with placards saying, "The rich get rich at the expense of the poor" and "Real jobs not workfare". It was taken by SocialistWorkerNZ and is used under a Creative Commons Licence]

Guest post: BBC bashes benefit claimants two weeks running

2011-11-08T17:16:00.000Z

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.

Panorama - The Price of Hate

2011-11-03T22:14:00.000Z

Dear Panorama Team,

As a disabled benefit claimant who sails, I'm wondering whether Panorama will be making a programme on the number of disabled people who will suffer hate attacks as a result of tonight's programme? Personally I'm into double figures with hate attacks from complete strangers who only need to see my crutches to know I'm a fraud and a scrounger and a fake. No need even to know if I'm claiming any benefit - disabled, guilty as charged.

I'm now scared to leave the house tomorrow, isn't that a proud addition to Panorama's legacy!

DavidG

(Sent to Panorama's email address 22:00 3-11-11)

Threat to legal aid for disability benefit appeals

2011-10-31T14:27:00.004Z

The BBC carrys a worrying story today.

“Warning over legal aid cuts for disabled people” the article leads. “Ministers are being urged not to restrict legal aid for disabled people wanting to challenge benefit decisions”.

News comes of yet another way that government is looking to save money – this time on a £2bn legal aid bill which it claims is “unaffordable” – money needed by disabled people to get legal assistance when benefit claims go against them.

This action is being questioned by a group of 23 charities including Scope, Mind, Mencap, RNIB and Leonard Cheshire.

A spokeswoman for the Ministry of Justice told the BBC that the review of legal aid meant that it would be “targeted at the most serious cases”.

I would argue that ANY situation where you could potentially lose your benefits is a “most serious case”. Indeed, given the comments on this blog and my own (FlashSays) it can at times be life and death.

Comments on my blog include Roger, who wrote “Since this all began [cuts to benefits for disabled people] I have began to feel totally paranoid and at times have given thought to killing myself mainly due to the daily pain I endure but also due to the uncaring way this government is treating us.”

James Gilbert simply said: “If my benefits are cut I don’t know what I would do”

You only have to read one article - Suicide is part of the disability debate – to know how important it is for disabled people to receive benefits. As well as keeping them alive (funding a roof over their heads, food, heat and light) it also validates that person. “Yes, we know you are disabled. We believe you.”

The nature of disability can be such that it makes it hard to complete benefit application forms. People can have memory problems or find it hard to concentrate. They may have physical problems with writing or typing, or they may not be able to construct clear sentences. I know that when I am struggling with pain I find it harder to think, and this affects my ability to write coherently – it is clear to see when I review letters I’ve written, I can easily tell which were done on a “good pain day” and which on a “bad pain day”. But some people don’t get good days, only bad ones – and yet through this they are expected to complete long booklets explaining why they are entitled to benefits.

Disabled people should of course be supported to appeal when a benefit decision goes against them. It’s already been proven that less than 0.5% of Disability Living Allowance applications are fraudulent, for example – these are the government’s own figures. Therefore, when claimants find a decision goes against them, and come forward asking for help to appeal, they are almost certainly going to be genuine, people who really do need help. Likewise with Employment and Support Allowance.

Commenters on my own blog and this one have said that the whole application process (including the fear of perhaps having to appeal) is so stressful that they have decided not to apply and to try to live in poverty without the benefit they are entitled to. Surely people should be given legal assistance to appeal, and feel supported by the government, rather than being forced to live in poverty because they feel beaten by the system?

It is critical that legal aid is available for those who need to challenge benefit decisions. A third of disabled people aged 25 to retirement live in a low-income household – and twice as many disabled people live in poverty compared to those who are able bodied. Without legal support when benefit decisions go against them, this shocking figure is surely set to grow.

Paul Reekie and Christelle Pardo have already killed themselves when their benefits were cut. How many will follow?

Providing this legal aid really could be a matter of life or death.

Amendment to keep Legal Aid for welfare cases - Today

2011-10-31T13:56:00.001Z

Legal help with welfare benefit appeals would be retained under Liberal Democrat amendment to the Legal Aid Bill.

Campaigners urge last minute emails to MPs

A Liberal Democrat amendment to the Legal Aid, Sentencing, and Punishment of Offenders Bill, which is being debated at Report Stage this Monday 31st October, would see legal help for people appealing or reviewing benefit decisions retained. Under current government plans all welfare benefits advice will be cut from legal aid, along with many other areas of law including much of employment, debt and housing advice. Charities like Citizens Advice, Law Centres, and advice agencies use legal aid to fund much of their work in this area.

Part of a motion on welfare reform passed at Liberal Democrat conference called on government to "reconsider the exclusion of welfare benefits casework such as this from the scope of legal aid." A group of Liberal Democrat backbenchers have put down the amendment, including Tom Brake MP, Co-Chair of the Home Affairs Parliamentary Party Committee. The other signatories are Stephen Lloyd MP, David Ward MP, and Mike Crockart MP.

Help with appeals is vitally important, particularly at a time when the benefits system is being radically changed. The introduction of Employment and Support Allowance has been beset with bad decision making - 40% of those appealing were successful. Yet in terms of the number of people affected, this will be dwarfed by the estimated 18 million people who will be caught up in the move to Universal Credit.

Campaign group Justice for All is urging people to email their MP urgently to ask them to speak during the debate and vote in favour of the motion. You can do this via their website at www.justice-for-all.org.uk

Justice for All have also produced a pair of videos, highlighting why help with appeals is so important. They feature three women who have had help from local advice agencies in appealing wrong decisions. They are available to embed here http://www.youtube.com/user/justice4allcampaign

The amendment is number 149, the full text is available here http://www.publications.parliament.uk/pa/bills/cbill/2010-2012/0235/amend/pbc2352610a.3619-3625.html

Disabled people occupy the UK

2011-10-28T15:20:00.004+01:00

It's a simple fact that a lot of disabled people can't camp out at the various occupations around the UK. Fatigue, sensitivity to cold, the access issues presented by camping or just having too many hospital appointments to go to make occupying impossible.

Disabled New Yorkers have started going down to Occupy Wall Street on Sunday afternoons at midday for a few hours. https://www.facebook.com/event.php?eid=126877490750232 - a few hours on a Sunday is a very different proposition to camping full time.

Many non-disabled activists simply don't know or care how shafted disabled people are by issues like the welfare reform bill. Last week Where's the Benefit asked OccupyLSX for some solidarity and for them to support the Hardest Hit protests; they didn't.

So taking inspiration from New Yorkers I think we should join our local occupations for a couple of hours every Sunday afternoon. We need to go down to the occupations and tell them about the issues affecting us. We need to make sure the occupiers understand what we're facing and to get them to support us. Tell the crowd about the welfare reform bill and how you'll be affected. Tell them about how cuts to Access to Work mean that when your current equipment breaks (because wheelchairs, etc, don't last forever) that you might have to give up work. Tell them about how cuts to care packages will limit your independence. Hand out flyers for Where's the Benefit, DPAC, Broken of Britain, Black Triangle, CarerWatch or any of the other grassroots groups you feel do well at disseminating info about our issues.

Disabled people are around 18% of the population. The occupations claim to represent the 99% that didn't break the economy, but unless we participate the occupations are only really representing 81%.

The occupations in London have been the most newsworthy, but there are others around the country:

Norwich: http://www.occupynorwich.co.uk/

Nottingham: https://twitter.com/#!/OccupyNotts

London: http://occupylsx.org/

Bristol: http://occupybristoluk.org/

Birmingham: http://www.occupybirmingham.co.uk/

Sheffield: https://occupysheffield.org/

Glasgow: http://www.occupyglasgow.org/

Belfast: http://occupybelfast.blogspot.com/

Cardiff: (in planning stages) https://www.facebook.com/occupycardiff

Edinburgh: http://occupyedinburgh.org/

Manchester: http://www.occupymanchester.org/

Newcastle: http://occupynewcastle.org/

Like New Yorkers we will aim to participate for as long as the occupations are ongoing. And like New York we'll meet at midday on Sundays EXCEPT this weekend when we'll be following on from the DPAC conference in London by going down to the London occupation on Saturday 29th at 4:30pm instead of Sunday. Standard Sunday excursions will commence the following week.

Facebook event. The Twitter hashtag will be #DPoccupyUK

Vigil Against Hate Crime: Friday 28th October

2011-10-27T17:35:00.001+01:00

The vigil will take place in Trafalgar Square tomorrow evening from 7:30pm to 9pm, with a 2 minute silence in memory of victims at 8pm.

The vigil was founded by 17-24-30 in 2009 following the homophobic murder of Ian Baynham in the square. Since then it has widened to remember/support victims of all hate crime; including disablist hate. Speakers this year include Beverley Smith from the Disability Hate Crime Network.

Disablist hate crime is on the up due in no small part to the rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them, making this vigil so relevant for us.

For more info see http://hatecrimevigils.wordpress.com/ or the Facebook event page.

The Hardest Hit Protest, Leeds

2011-10-27T11:21:00.001+01:00

Last Saturday thousands of ill and disabled people, their carers and supporters took to the streets in cities across the UK to protest against the cuts that are unfairly targeting them. This unprecedented event was The Hardest Hit October Action.

It takes a lot to make the disabled community take to the streets, mainly because its so difficult for us. If you had eavesdropped my twitter feed last week you would have seen my conversations and musings dominated by The Hardest Hit as we all shared protest survival strategies. We knew there would be a price to pay in our health for attending but as one of my friends put it, "protesting will hurt me but not protesting will hurt me more".

For every one of us attending an event there were hundreds who were unable to go because they were too ill or disabled, too poor, too busy caring for someone or just couldn't use our inaccessible public transport. They sent messages of support, they were with us in spirit.

I'm not an activist or a disability campaigner, I'm just an ordinary person struggling with some pretty serious mental health problems. I am, like most other ill and disabled people, one of the hardest hit by the cuts.
I travelled to Leeds to join the Hardest Hit protest because this Government wants to stop my benefits, remove my services, call me a scrounger and force me from my home. For many of us this protest is personal, we're not just fighting for fairness - we're fighting for survival.

Over two hundred of us gathered in the sun in Leeds. We marched along The Headrow bringing the city centre to a standstill. Shoppers stood and watched as we marched with our wheelchairs, our Assistance Dogs, our mobility scooters, our carers, our children, our friends and our banners. Speeches were made by disability activists, charity sector workers, trade union members, NUS members, a local MP and ordinary people facing huge challenges. The message from all of them and the people listening was clear - these cuts are unfair, we are afraid and we are angry.

There is a 'perfect storm' facing ill and disabled people. We are already struggling to survive from day to day. Our NHS services are being cut and the voluntary sector agencies who would offer us support are losing their funding. The benefits of those of us who cannot work are being cut or removed and those of us who do work are losing the practical and financial support necessary to make working possible. The additional cuts proposed in the Welfare Reform Bill will leave us and our carers more impoverished, isolated and vulnerable. On top of this, ill and disabled people are being labelled as scroungers and benefit cheats, vilefied by the media and treated with suspicion by the public. Disability hate crime is increasing, people are facing abuse and harassment on a daily basis and many are afraid to leave their homes.

This Government has promised to support disabled people who are in genuine need - but only if THEY can define 'support', 'disabled', 'genuine' and 'need'. This is a cynical disability denying ploy to remove support from the people who need it. This Government is merely transferring funds from ill and disabled people and carers to private companies making millions from 'welfare reform'.

One of the most disturbing things is how badly informed most people still are about this. The public still think that disability benefits are a 'lifestyle choice' and believe we are all driving around in BMWs. Sadly many disabled people and their carers are still unaware of quite how badly the cuts will affect them. The media is not listening to the disabled community, some of the Hardest Hit events attracted over a thousand protesters but there was barely any BBC television or radio coverage. The future for society's most vulnerable is bleak. We are 'all in it together' its just that some of us are deeper in it than others.

Attending the protest left me with mixed feelings. I was proud to stand in solidarity with the hundreds on the streets of Leeds, the thousands in cities across the UK and the tens of thousands who were there in spirit.

But I was also sad and angry that this country should need an event like The Hardest Hit at all.

Guest post by Vanessa Teal

The Hardest Hit Protests - Saturday October 22nd 2011

2011-10-18T08:51:00.002+01:00

Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives. The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium (DBC) and the UK Disabled People’s Council, brings together individuals and organisations to send a clear message to the Government: stop these cuts. You can find our key messages in this document. Key messages on the Hardest Hit

Take action this October

Following our protest in May, when an estimated 8,000 people marched on Parliament, further events are taking place across the UK this month. These events are designed to raise awareness amongst the general public, the media and politicians of our key messages. Click here to find your nearest event.

Regardless of whether or not you are able to attend one of the events taking place on October 22, 2011, there are still lots of ways you can get involved to support this campaign. We need your help to really make an impact. It won’t take much time out of your day, but it will make a massive difference to the success of our campaign.

You can:
1. Write to your MP and invite them to attend their local event. We want as many MPs to know what’s about the campaign as possible.
2. Lobby your MP in the week leading up to the event by attending a constituency surgery or writing to your MP, you can help make sure that they are aware of our campaign and the arguments against welfare reform.
3. Write to the editor of your local newspaper. By doing this, you are helping us advertise the events and making sure that as many people as possible know they are happening.
4. Send a Press Release to your local paper, not only will you be sharing your concerns about Government cuts but making sure that as many people as possible know the event is happening.
5. Be a case study. Your story is the most important. Tell decision makers and the media why you support this campaign and help us show the human face of welfare reform.

Events taking place on October 22

Key messages on the Hardest Hit

Take action against companies profiting from workfare! Oct 19th

2011-10-13T14:01:00.000+01:00

Via Boycott Workfare:

1pm, Wed 19th October 2011 outside the annual Welfare to Work
Conference at the Business Design Centre, Upper Street, Islington, N1
0HQ

This year’s Welfare to Work Conference will bring together
politicians and private companies making millions from the welfare to
work industry. The agenda reads like a who’s who of welfare abolition.

We’re not fooled by “Welfare to Work”: It means people forced to do
unpaid work for multi-million pound companies such as Asda and
Poundland. People risk losing the meagre £67 a week Jobseeker’s
Allowance if they do not work for such companies without pay.

Conference speakers will include James Purnell, who introduced the
idea of workfare under Labour, and the Tory peer Lord Freud, multi
millionaire ex-banker and self styled ‘welfare expert’. This is a
convention for those promoting the idea of an unpaid workforce, whilst
making millions from it.

Join us as we make sure the conference doesn’t go as smoothly as planned!

http://www.boycottworkfare.org/

http://www.facebook.com/event.php?eid=257927247582905&ref=ts

Scottish Welfare Reform Bill Debate

2011-10-06T11:18:00.001+01:00

This is a guest post by Michael S. Collins, about the Scottish Welfare Reform Bill debate. He wrote this yesterday evening, after the debate had taken place.

So today, the Scottish parliament stood on what had been called potentially their finest hour. If in doubt, start posts with hyperbole. Nevertheless, it was an important moment, as Holyrood got ready to debate the infamous Welfare Reform Bill, proposals which have divided people, even from the same party.

Before the debate, there was a statement on the fuel poverty allowance, followed by queries from several MSPs including Patrick Harvie. The most interesting news to stem from that was the idea that the heating bill scheme was to be extended to that long misused service to society, carers. The feeling seemed to be, on the whole, we aim to keep our promises in this area, even if 'them down South' try to slash our budget.

Deputy SNP leader, and regular sight in Govan, Nicola Sturgeon opened the Welfare debate with as clear a statement on government policy as we shall hear for some time. "We want a welfare system which is fair to all." She followed up with an attack on a system which allowed genuine claimants to be found "capable of work". It was her conclusion that "We must recognise some people are unable to work and must be able to life comfortably on benefits." The Big Society was on the other channel, but Call Me Dave politics this was not.

Jackie Baillie opened the debate for the Labour party, who were mostly to agree with the SNP policies with a few tweaks. "Attacks on the welfare state is nothing less than an excuse to cut." She said, before turning to former Scottish Tory leader David McLetchie. In a pre-emptive strike, she warned him not to bring up the "13 years of Labour misrule" agenda once more, before throwing a dig in at the nearly entire missing Liberal Democrats: "Beveridge would be ashamed to see the Liberals cosy up to this".

Alongside Patrick Harvie's earlier assertions that he planned to argue against the WRB, so far the score suggested it was SNP / Labour / Green for, Tory against, and Lib Dems unaccounted for.

We now handed the debate over to Mary Scanlon of the Scottish Tories, one of that famous breed of formidable Sexagenarian / Septuagenarian Conservative women which populate parts of Scottish politics. At this point we got a lot of Labour mentions. Labour's legacy. Thirteen years. Unelected Prime Minister (though, the evidence that polling for Labour in 2005 rose after the "Vote Blair Get Brown" campaign suggests the general public didn't really disagree with that idea at the time). You know the jist. A lack of "the mess we inherited" in all but name. "39% claimants gave up claims as they didn't need it anymore." Other such familiar claims were made.

Liam McArthur of the Lib Dems, and the only Liberal Democrat available, had the floor now. "I do not accept the Welfare Reform Bill means the dismantling of the welfare state and benefits system" he started. Then he went into the usual Liberal defence of the Conservative policies. Nothing new to report there.

Bob Doris took the floor.

"We must speak out against the Bill, which is unfit for purpose, even if we can't prevent it."

"A savage attack on the most vulnerable groups in our society. [WRB] is cutting cash at any price. It is not a price worth paying."

A female MSP rose to speak next. The tag team of the washing machine and the sound problems on Holyrood.tv meant I never caught who it was, so anyone who knows, please let me know.

"Welfare state is a sign of compassion" she said, expressing that "Social ails" stemmed from the events of the 1980s. "We need safeguards for those who play by the rules and need nothing more than help from the state at their time of need."

Mark McDonald, SNP, was next to refute the claims that the SNP were sensibility and nae sense, as he noted that he had met "many voluntary groups and charities" who "have made sensible ideas for reform that wouldn't hurt the vulnerable."

"60% of genuine claimants rejected, being overturned on appeal suggests something wrong with the system."

"If it is your mistake, you'll be punished. If it is the UK governments mistake, you'll be punished."

He followed this remark up with a reference that 'Sir Humphrey Appleby' would be proud of this system, endearing himself to Nigel Hawthorne's legion of fans and politicos alike. His parting dig - "Now is the time and the hour for the Liberals to show their 'civilising' impact on the Tories" - was given with expert timing. McDonald is a new SNP MSP, elected in May during the landslide, who famously showed up at his count in jeans and T-shirt, so utterly unconvinced he was of his own victory. Here he made an impassioned speech.

Margaret Burgess, SNP, was swiftly to steal the show, however.

Key points?

The [WRB] "will have long term detrimental effect to Scotland."
"I worked as an advisor. People want to work, not wanting to work is untrue, they are not getting the help they deserve."
"20% less will get help even if they need it. That is wrong."
The circle of ESA/JSA/ESA/bad decisions "badly effects mental health of the most vulnerable."

She spoke with the full authority of years of experience, and with the full passion of someone who had first hand seen the hopelessness and victimization of the vulnerable in the name of society.

For fear this is turning into the SNP propaganda society, up next was Siobhan McMahon, a young Labour MSP of whom I was unaware of. It is hard to argue that her opening gambit was not one of the most strongest in the debate. "I have (a form of) cerebal palsy. It is surprising how easy it is to forget how you can't do normal things." She added: "I am better off than many others though, and it is for them I am passionately opposed to the [WRB]." McMahon showed an effective and well honed use of the orators mantel, noting of those who screamed about 'unnecessary benefits' that "Benefits cheats in this suspicious society invade their dreams like so many sprites and goblins." A brilliant use of rhetoric. The SNP may have held the floor and had the most condemnations of the ConDemNation (sorry, couldn't resist), but this was the most flowery and brilliant Footian quote of the day. Siobhan McMahon went on to warn that Scotland will "suffer disproportional by this reform, due to our high level of disabled people", and that, as an example against those who say looking harder for work is the solution to all our welfare woes, "Only 12% of people with aspergers in this country are in employment."

Annabelle Ewing, SNP and Winnie's daughter, was up next. She had "Concerns about devolved areas - housing benefits, carers etc - to be adversely effected by this [WRB]." She said there was "New assessment tests" but "little optimism the flaws of the Work Capability tests will be learned." She reiterated that she was "infuriated that disabled and sick are 'made to feel like second class citizens'".

Kezia Dugdale (Labour) took charge next. Her key points:

"If the Tory government is about the bigger picture, why does the [WRB] gain from broken marriages?"
"One of the most abhorrent aspects of bill is changes to child maintenance proposals ie Lone parents needing to pay their own."
"Child care costs, contrary to popular belief, does not pay to work."

Christine McKelvie (SNP) was up to reiterate the SNP policy that "UK benefits system is needlessly complex", and "doesn't ensure people better off in work". We need to " treat systems not causes." She was damning of the Tories: "Instead of lifting poverty, the Tories plan to plunge more poor families into it."

Our sole Lib Dem summed up. Liam McArthur (Lib): "No one can identify what welfare reform would look like in independent Scotland. Still need to reduce budget."

David McLetchie finished for the Conservatives, stating that "Responsibility should be at the heart of our benefits system. Tinkering the edges of broken system wont work.". He was also, sadly, the only man to bring immigration as a sniping point. I may be rather cruel as I suggested that his whole debate could be summed up as "I agree with the SNP, but...". Given he was odds to stress both his support of certain sections of the policy but also his full support of the Tory reform, it wasn't unfair though. Players of David McLetchie Bingo - "Labour inheritance", "SNP record", "problems of independence" - would have had a happy day at the office though.

Drew Smith, the rather nervous Labour MSP, summed up for his side: "We see merit in simplifying system for those who can't..." He then talked up Universal Credit. He seemed genuinely terrified of Mary Scanlon, staring a hole through him constantly and trying to interject.

Alex Neil, the Secretary for Capital Investment, summed up for the SNP. He blamed everyone - the Labour, Tory and Lib Dem parties - for slashing capital spending. He pointed out the sole Lib Dem in the Chamber, and stressed that "No one is opposed to welfare reform. Purpose in reform isn't to do down vulnerable society, it is to make a fairer society." He also got in a less than subtle dig at the Labour party: "When Labour are in government, they introduce Tory policies. When they are opposition, they oppose the policies they introduced".

All the amendments went to division (ie, no clear decision) in the Chamber, so were voted on. The amendments of Mary Scanlon and Liam McArthur for the Tory and Lib Dems were rejected, and the combined SNP/Labour/Green alliance saw through Nicola Sturgeon and Jackie Baillie's amendments, to be proposed for the Welfare Reform Bill. That being, that matters which effect Scottish people should be ratified by the Scottish parliament before coming into effect.

It was nice to see Labour and the SNP unite on a principle. This didn't stop them digging at each other in much a Tom and Jerry style, but like Tom and Jerry, they united when someone else threatened them. In this, it was the WRB.

So was it Holyrood's finest moment? Rome wasn't built in a day and it will be hard to tell for some time if it was the making of anything but futile gestures.

It was, however, a delight to see some genuine factual, passioned but mostly good spirited debate on a matter which effects so many people, not just in Scotland, but in the UK today.

Bns Jane Campbell wants our views on PIP

2011-10-05T14:32:00.000+01:00

Here is a copy of a mesage we just received from Baroness Campbell. I'm too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :

"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality.

The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people.

It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.

It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance.

We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)

I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.

1st Committee Session Of Welfare Reform Bill Today - Ppl Needed To Attend URGENT!

2011-10-04T09:15:00.002+01:00

Are you based in or around London and interested in the impacts of the Welfare Reform Bill on all our lives? If so please try to attend the first committee session today in the Houses of Parliament. It is open to the public so just turn up, go through the security checks and make your way to Committee Room 4A. The room is larger than normal, chosen to allow access and there is also an overspill room with live feed link should it be needed.

We understand that this is short notice and a big ask, but the more people who can attend, even if only for a short period of time, the better. We need to show the government that they cannot quietly slip this destructive bill through without disabled people, sick people and carers speaking out about what they are doing to us.

Conservatives: Protecting the vulnerable? #cpc11

2011-10-02T14:42:00.000+01:00

When I contacted my Conservative MP a year ago to express my concern about government policy towards sick and disabled people, he told me that "I see something different, I see the vulnerable protected."

I still can't see that.

Conservatives,

Your ministers and special advisers constantly give incorrect information to the press and in speeches. You give misleading statistics to the press, and you leak it in advance to press that are sympathetic to conservative policies. That leads to headlines that seriously harm those reliant on benefits. Your language is itself harmful. You talk of benefit cheats, and scroungers, and the benefit lifestyle, and yet you ignore your own official statistics which show how tiny the levels of fraud really are. You ignore the massive damage done to the vast majority of claimants by your portrayal of those forced to rely on benefits and your constant references to deserving and undeserving; genuine and fake. Rhetoric from conservatives and the press has led to an increase in hate crimes such as stoning of people in wheelchairs and verbal abuse against those who need to use crutches or walking sticks. That has directly led to many disabled people being terrified of leaving the house.

You legislate on the assumption that with mobility aids, disabled people are on an equal footing with everyone else when moving around. They aren't. Shops have steps in their doorways. Pavements lack dropped kerbs, leaving those who are on wheels or cannot manage a change in level to make extended detours. Cars and vans are routinely parked blocking ramps and dropped kerbs. Bus drivers refuse to lower their bus to allow wheelchair users on, or pretend not to see them. Trains and buses allow only one wheelchair on the whole vehicle. Those who need an electric wheelchair for use outdoors are denied one because they have no need to use one at home. Others wait months or even years to be supplied with one.

You continue the broken system of assessing people that was introduced by Labour. The concept of the Work Capability Assessment is broken in itself as the impact of most health problems cannot be assessed in 45 minutes by a health care professional who has no knowledge of the problems that the patient has. Atos continue to recommend that people go in the Work Related Activity Group and attend Work Focused Interviews at the Job Centre when they will be seriously harmed even by attending the Job Centre, IF they manage to do so, and never mind the fact that there are no available jobs that are suitable for them and competition for the unsuitable jobs is more than five to one and up against healthy people.

You are time-limiting contribution-based ESA with no regard for the actual length of time that a person will be sick for. The prospect of losing that income causes stress and seriously damages the mental and physical health of many of those people, leading to even longer recovery times.

You are introducing Personal Independence Payments to replace DLA, but apart from assessing people more often which is highly damaging to the health of those who are permanently sick or disabled, you are reducing the budget by 20%. The costs of being sick or disabled have NOT gone down by 20%!

Conservative cuts to council budgets have come directly out of budgets for personal care. People who can barely get out of bed have been left to shop and cook for themselves; others have been given incontinence pads and told to soil themselves rather than receive help to get to the toilet, and this despite having full control over their bowels but simply being unable to walk. Forcing people to lie in bed for hours in their own faeces and urine is now conservative policy.

You reassured me that the vulnerable would be protected. You were wrong. You are attacking the vulnerable. You are abandoning those in need. Your policies leave people more sick, more disabled, blamed for needing your help. You should be ashamed.

Two Legs Better

2011-09-29T23:23:00.000+01:00

Orwell's Animal Farm is an allegory about the corruptive influences of power under Stalinism, but sitting here tonight I find myself applying that same allegory to Labour.

Yesterday, at the Labour Party Conference, Ed Miliband held a Q&A session and was challenged by disability activist Kaliya Franklin (aka @BendyGirl, author of Benefit Scrounging Scum ) over his attitudes to disability. Charged by Kaliya that he was "reinforcing the destructive rhetoric" of the ConDems towards disabled benefit recipients, particularly through the disabled man he lambasted earlier this year as just as irresponsible as any banker because he hadn't been able to find work, attitudes repeated in his keynote speech on Tuesday, Miliband responded: "The problem is I met his next-door neighbours … and they didn't actually refer to him, but they said: 'Our problem is we are working incredibly hard and we are worried we are paying for people who can't work.'" And as far as Ed is concerned, that justifies condemning that man, and all disabled benefit recipients by extension. No thought that much of the impact of disability is invisible, no thought that the neighbours might just possibly be disablist, just he's disabled, they're angry, and they have more votes.

As Orwell had it as things went wrong for the lesser animals, 'Four Legs Good, But Two Legs Better'.

Now the interesting part of this from my personal perspective is that earlier this year I was interviewed by BBC South East about my experience of disability hate crime. One of the points that I made, and one that was backed on air by the disability charity Scope and other experts, was that the rise in hate crime results at least in part from government propaganda intended to confirm non-disabled people in their impression that disabled benefit recipients are all frauds and slackers. The Conservatives trotted out Mark Reckless, MP for Rochester and Chatham, to defend themselves. How did he do that? By saying that if people thought those around them were receiving disability benefits without deserving them, then they were fully entitled to be angry. No thought that much disability is invisible, no thought that the neighbours might just possibly be disablist, just he's disabled, they're angry, and they have more votes.

Two politicians, one a hardline Conservative, one the leader of the Labour Party, both making exactly the same argument to justify their attitude that criticism of disabled benefit recipients by those who know nothing about them is perfectly justified.

The creatures outside looked from pig to man, and from man to pig, and from pig to man again; but already it was impossible to say which was which.

17 Cities to Take Action Against Atos and Government's Welfare Policy Tomorrow

2011-09-29T16:51:00.000+01:00

Press Release from Benefit Claimants Fight Back

Towns and cities around the UK will see protests tomorrow (30th September) against Atos, the IT Company responsible for carrying out the con-dem government's Work Capability Assessment. As part of a National Day of Action Against Atos, organised by disability, claimant and anti-cuts activists, people will be gathering outside Atos' offices in Edinburgh, Leeds, Manchester, Nottingham, Brighton, Chatham, Cheshire, Birmingham, Glasgow, Hasting, Norwich, Oxford, Bristol, Chester, Plymouth, Sheffield and York.

In London a demonstration is being held outside the BMJ Careers Fair where Atos will be exhibiting in an attempt to recruit doctors to work on their Disability Assessment teams. Thousands of people have been denied or stripped of vital benefit because of decisions made based on Atos' assessment procedure which involves a short interview and a computer based test. Many people have had conditions worsened, either by being forced into the workplace, having much needed money withdrawn or the stress of the assessment process, which has been described as relentless. Sadly some have taken their own lives after hearing of Atos and the DWP's decisions to remove their benefits. Even people with cancer and other terminal illnesses have been deemed 'fit for work'. The government has pledged that this form of testing will be extended to all disability and health related benefits.

This week over one hundred groups and individuals signed a letter to the BMJ and the RCN urging them to stop allowing Atos to recruit at their events and in their publications: http://benefitclaimantsfightback.wordpress.com/open-letter-on-atos-healthcare-to-the-bmj-and-rcn/

An online protest will see companies and organisations which do business with Atos contacted and informed of this company's 'callous and cruel' treatment of disabled and sick people.

Supporters of Disabled People Against Cuts have said that "As long as ATOS continues to treat disabled claimants little better than animals they will continue to protest against them and seek means to discredit them."

ENDS

Ed Doesn’t Get It

2011-09-27T21:41:00.000+01:00

We had already had a hint of where Ed Miliband stands on welfare support for disabled people in his ‘I met a man’ speech, where he compared us to the bankers. There was the leader of the Labour Party telling the nation, when rates of disability hate crime are already rising, when tabloids vilify us daily, that disabled people who are unfit to work are just as irresponsible as the bankers who brought on the crash in pursuit of their huge bonuses. Nice. Well today he made his speech to the Labour Party Conference, and it’s more of the same.

We won’t be able to reverse many of the cuts this Government is making.

Cuts like the axing of the Independent Living Fund, the plans to time-limit ESA and leave 400,000 disabled people who aren’t fit for work without income from next April, and the scheme to cut one in five recipients of DLA under the guise of ‘simplifying’ it. Labour is letting the ConDems do their dirty work, and Ed is setting the stage to say he can’t reverse the cuts, when what he means is he won’t reverse them. I vilify the ConDems for cowardice when they blame Labour for all their economic woes, it’s only fair I do the same to Ed when he tries to pass off his policies as forced on him by the ConDems.

The something for nothing of celebrity culture.

The take what you can of the gangs.

And in parts of some of our communities, a life on benefits.

You know what your values are.

But they are not the values being rewarded in our benefits system.

We must never excuse people who cheat the welfare system.

The reason I talk about this is not because I don’t believe in a welfare state but because I do.

We can never protect and renew it if people believe it’s just not fair.

If it’s too easy not to work.

And there are people taking something for nothing.

I don’t know what he thought he was saying here, other than that it might go down well with the Little Englanders who read the Daily Mail, but look at what this section is saying about people dependent on welfare; it compares us to Z-list celebs, gangsters and rioters, and it says that people on benefits aren’t like right-thinking people, that we have different values, that we are ultimately all cheats. No doubt he’ll protest that wasn’t at all what he meant, but it is precisely what will be understood by huge swathes of our society, and the acceptance of disabled people who depend on the benefit system because they are too disabled to work will spiral ever lower.

And if at the same time people who have paid into the system all their lives find the safety net full of holes.

At last, something that sounds like he might have a clue, but the damage is already done, and there’s more to come.

We need a new bargain.

Based on Britain’s values.

Which sounds fine, but there are immense problems with Britain’s values, we see that in the newspapers that brand us cheats and fraudsters on a daily basis, because they know that goes down well with their readership, we know that from the hate crime statistics, from the people who abuse us on the street for daring to be disabled. Britain’s values around disability stink, they stink at every level of society, from the Ministers who see us as a soft target, to the MPs who think we should be pleased to work for a pittance, to the police who too often dismiss the idea that disability hate crime exists, to the judges who inevitably reward our abusers with the lightest of sentences, to the media which demonises us because it sells papers and we aren’t strong enough to fight back, and the people on the high street who elect those MPs and Ministers and buy those papers and tut-tut about how they’re all at it, you know. We need a party with the courage to ignore Britain’s values when those values are morally and ethically wrong, and to drag us kicking and screaming into the 21^st Century, with the moral courage to condemn bigotry in all of its forms, not pander to it because there might be a vote or two to be had.

That is why I say all major government contracts will go to firms who commit to training the next generation with decent apprenticeships.

And none will go to those who don’t.

Sounds good, but what about the 70%+ of employers who openly state they wouldn’t employ a disabled person, in clear contempt of the law? Do they just get the wink to continue?

And we must challenge irresponsible, predatory practices wherever we find them.

Unfortunately I don’t think he meant ATOS assessment centres.

The wealth of our nation is built by the hands not just of the elite few but every man and woman who goes out and does a day’s work.

So what does that make those of us too sick or disabled to work? Parasites?

But the truth is that the problem in some of our schools is not just investment.

It’s also about values.

Of bright children held back when aspirations are low.

Or when closed circles at the top of society shut them out.

He might almost be talking about the way disabled people are excluded, but he isn’t.

VAT went up.

He called it a tough decision.

Tax credits were cut.

He said they couldn’t be afforded.

Help paying for childcare was hit.

He said it was the only thing he could do.

Even when he’s talking about Cameron hitting those who can’t afford it, ILF and ESA and DLA are beneath his notice.

Only David Cameron could believe that you make ordinary families work harder by making them poorer and you make the rich work harder by making them richer.

It’s wrong.

It’s the wrong priority.

It’s based on the wrong values.

How dare they say we’re all in it together.

So we need a new bargain at the top of society, and in our benefits system too.

So it rewards the right people with the right values.

Again he links people in receipt of benefits with those taking immoral advantage of the opportunities provided by their wealth. Repetition makes it clear it is an intentional strategy to demonize us by association, and the only reason can be that it will go down well with the knee-jerk contempt of the Daily Mail readers.

We have to face the truth.

Even after reforms of recent years, we still have a system where reward for work is not high enough.

Where benefits are too easy to come by for those who don’t deserve them and too low for those who do.

Again the underlying message is that if you can successfully claim benefits then you must be playing the system, and that work is the gold standard by which all else must be judged. But there are many hundreds of thousands of disabled people who can’t work through no fault of their own, and a message that only through work can you be valued is unfit for any Labour leader, or for that matter for anyone who claims to believe in even the vaguest concepts of equality.

So if what you want is a welfare system that works for working people then I’m prepared to take the tough decisions to make that a reality.

Except when it would come to saying that ATOS should be sacked and admitting that ESA is a failed, if not farcical, attempt to embrace the ultra-right-wing, American, definition of disability as a form of social deviance that should be punished, not supported and which has caused untold damage to millions of disabled people through the stress and fear it engenders.

Take social housing.

When we have a housing shortage, choices have to be made.

Do we treat the person who contributes to their community the same as the person who doesn’t?

My answer is no.

Our first duty should be to help the person who shows responsibility.

There it is again, the idea that if you don’t get out there and find work, contribute actively to society then you’re irresponsible. Precisely the same line he used to condemn disabled people as no different to bankers in the ‘I met a man’ speech. But what about those of us who can’t contribute to our communities, who are so disabled we can barely access them? When I spend most of my life flat on my back, because I can’t bear to sit or stand, then what exactly does Ed think I can do for my community? How does someone with severe mental illness contribute? Or severe ME, or any of hundreds of other disabilities? How do we compete in his little scheme as equals? And if we can’t compete, then is that scheme not just not fit for purpose, but is it something that scars and diminishes the Labour Party just by being something they would even consider?

David Cameron likes to talk tough on welfare, but do you know who the big losers are from his changes?

Time and again it’s those who work hard, who try to get on.

It’s the cancer patients who have worked all their lives but now lose their support

Ed’s keen on cancer patients, guaranteed vote-winner, almost as good as a little girl in a wheelchair with a puppy, but he’s less keen on the rest of us who are too disabled to work, we aren’t such good headline fodder, we aren't so photogenic, many of us have disabilities that the Daily Mail readers don’t believe in. And he’s not so keen on giving you the full picture either. Cameron wants time-limiting of ESA at 12 months, Ed wants it at 24. We don’t have Ed’s luxury of being able to ignore our personal realities, we know that a disability is for life, not just for Christmas, but Ed doesn’t want to acknowledge that, because then people might start wondering if cutting 700,000 disabled people who aren’t fit for work adrift without any welfare support after 2 years is really a policy Labour should be advocating.

It’s the couple who have put money aside and saved, but now lose their tax credits

And it is the single mum working as a dinner lady who loses help with her childcare.

But apparently it’s not the disabled person who will be forced to sacrifice their savings and their pension just to survive when ESA is time-limited, nor the disabled person who will be forced out of work because DLA will no longer admit that needing a wheelchair is a serious mobility impairment.

And while those who do the right thing are hit hard, the demands on those who don’t work aren’t tough enough.

He’ll swear this isn’t aimed at disabled people, but is that the message the Daily Mail readers will take away?

I believe in a benefits system with values.

And I believe in the value of work.

All through the speech the emphasis is that not working is somehow socially deviant, there is no simply no room in Ed’s mindset to acknowledge that hundreds of thousands of disabled people are unable to work, that it will take massive societal change to get any significant percentage of them into work, and that many of them will never be able to work, but that they must still be valued equally for society to have any claim to be equal and fair. It seems that James Purnell and the pernicious disability-denial message of Unum Provident and their Cardiff ‘think tank’ are still defining Labour’s welfare policy, and that is something that should scare us all.

The full speech can be read online here.

Terminally ill people told to go back to work

2011-09-21T17:27:00.001+01:00

Not content with the current cuts to benefits, the Department of Work and Pensions has been sending worrying letters about the Welfare Reform Bill, which has yet to be passed.

Terminally ill people claiming Employment and Support Allowance have received letters telling them that as of April 2012, ESA will only be paid for a year to those in the Work-Related Activity group. However, this change is retrospective so people currently receiving ESA could lose it when the new rule comes in.

Understandably this news has been met with shock by disability groups. Neil Coyle of Disability Alliance told the Guardian: "The impact of cutting support will be devastating for people already told they only have a limited time left to live. Many will have worked for years and will feel they deserve a little support in return until they pass away.”

It is reported that the cost of sending these notification letters is £2.7m.

A DWP spokesman said “The process of working may be helpful in giving [terminally ill people] a sense of being useful and prolonging their lives.” But in a economic climate where it’s hard enough for an able-bodied person to find work, the challenge of finding work for someone with a life-limiting condition may be a step too far.