Friday, 27 January 2012

A Premium Life

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.

Update 15/11/13: DavidG has just pointed me to this article from October last year. It states the number of people that will be affected by the cuts to Disability Premiums: 230,000. I've also become aware today of this 32 page report by the CAB (also from October 2012) into the withdrawl of the Severe Disability Premium.

Thursday, 26 January 2012

Rod Liddle is an Arse

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.

Wednesday, 25 January 2012

And in the news...

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?


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:

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:

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:

Thanks for being involved,

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

[3] Read more about some of the other groups campaigning here:

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.

Monday, 23 January 2012

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

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

I got a couple of replies:

So then I asked:

And got these replies:

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.

Thursday, 19 January 2012

Just a form - some benefit myths

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

Guest post: Modelling disability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, 18 January 2012

PIP and passport benefits - who are the losers?

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

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.

Tuesday, 17 January 2012

Models of Disability

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.

Monday, 16 January 2012

To Their Lordships on #SpartacusReport

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. 



Guest post: Lords vote tomorrow, Jan 17th

This is a guest post from Hossylass

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

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

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

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

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

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

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

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

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

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

Lets do it again this week.

Many thanks again.

The Big Guns...

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.


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

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.

Sunday, 15 January 2012

Ministers getting ahead of themselves

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.

Thursday, 12 January 2012

Government filthy tricks subvert parliamentary process

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

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.

Tuesday, 10 January 2012

A Topsy-Turvy World

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

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?

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

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 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