The Paralympic Prayer

Dear Starter, and those on a podium

Hallowed be thy games

Paralympics come,

They will be run

On the flat as they are in Stoke Mandeville

Give us this day our DLA

And forgive those that deny our existence

As they fail to forgive us for not getting better

For ours is the wheelchair, the hospital trolley

For ever and ever

Amen.

ESA50, Stage Two of the Journey to Hysteria.

Guest Blog by Hossylass

Having badly handled stage one through being thoroughly dismayed by the “telephone advice” available from JC and the DWP;

http://benefitscroungingscum.blogspot.co.uk/2012/07/atos-dwp-jc-unholy-triumvirate-guest.html

I started what felt like the most dangerous period of my life.

I first sat on a pony aged about 18 months, and after that life was pretty much a mine field. Attracted to the ridiculous, and having as much awareness of danger as a puppy, I have been drowned, run over (quite a bit), mugged, attacked, concussed and landed on my head at speed far too often for it to be a coincidence.

However it was pretty much all my own doing, which is exactly what my ESA 50 ended up as – a dangerous activity that could end in a disaster all of my own making.

This meant I had absolutely no-one to share my sense of ridiculous with. And there were moments. Dozens of them.

Starting from the top, I had the weird feeling that my National insurance number was not my own, so tried to fill in a different one.  I should have left it at that – I clearly can’t even write a series of letters and numbers correctly. My brain said one thing and my hand refused to do its bidding. Total refusal. Naughty hand. Naughty hand responded in the negative and like a sulky child refused to participate further. I asked the other hand, but got the impression that after 45 years of being the unacknowledged spare, it was fucked if it was going to help out now.   Suddenly I knew how left hand felt – I shouldn’t have asked after 45 years of treating it as a lesser being.

So onto the questions.  Can you mobilise 50 metres. Well no, not really. Not at all. I could get lucky, or I could dislocate 50 times in 50 metres, and it’s more likely to be the second.

(Damn you ex-dominant leg, why can’t you behave as well as ex-non-dominant leg? And Oy ex-non-dominant leg, stop getting your own back and following ex-dominants behavioural traits).

Then the next question stumped me by asking could I walk 200 metres. Eh? Do I have to answer this? Obviously not, as I had stated that I couldn’t reliably walk 50 metres… but this is Atos and the DWP, so dutifully I ticked no, resisting the temptation to say that no miracles had taken place in the miniscule time frame between completing the first bit and the second bit.

Who knows, maybe it happens for some people…

So onto question 2. This made me wonder what sort of workplace the writer of this masterpiece worked in. Can you transfer and can you sit/stand or alternate for an hour?   

At this point I had visions of an office of latter day jack-in-the-boxes doing some sort of musical chairs crossed with comedy seats that gave people electric shocks, launching them into the stratosphere when the music stopped, and whilst airborne someone else transferring sneakily onto their vacant chair.

Well there wasn’t an option of “after 5 minutes of sitting can you assume a simian position, knuckles below knee level and collapse onto the floor at the first attempted footfall”. 

Disappointing, but I have to remember that these questions are not aimed at any one person. Well not anyone that occupies my universe.

Memory fails me where we went next, but my personal favourite is “Can you lift one or more arms…” Can someone tell me how many arms we are assumed to have?

Now I know it’s not of this planet – I have really entered a twilight zone. I was tempted to send off a freedom of information request asking just how many people have more than two arms. 

Tell me it’s not just me, tell me that secretly everyone else has “more” arms.  Trust me, I am not being pedantic, this question freaked me out. The temptation to write “I cannot lift any of my arms” was quite overwhelming. For about two days.

It occurred to me that the question was aimed at upper limb amputees, who may have various "arms", and could lift a veritable boxful above their heads – I shall watch closely at the Paralympics to see if multiple arm raising is a recognised sporting discipline.

It then got worse. It then tried to ask me two conflicting questions in one. 

So can I lift 500mls of liquid; possibly but what’s the catch? Well it’s also a pint apparently, which it clearly bloody isn’t. A pint is over 11% heavier. It is, in liquid terms, probably the obese big brother of the 0.5 litre. 

Now considering how hysterical the DWP get if anyone makes a mistake, and remember folks that in future a mistake could cost you £50, I am annoyed. I suppose though I am now entitled to the same 11% margin of error… so I could say that I am a purple galosher all the time, when actually I could be perfectly normal 11% of the time and only a galosher 89% of the time.

And one quick question, can anyone hold a book and turn the pages using only one hand? Or are we talking at the pulpit here, with a King Jim bible lay flat out and begging for a sticky finger to sweep across its sensuous pages. Seeing as people read books in a variety of places, and very rarely are these places such that no support of the book is needed, is this entire question just a way of saying “’Ere, got any office skills? Button pushing and scribble and all that?”

Anyhow, moving swiftly on… The next question is about communicating and the following one about shitting yourself. As the DWP talk shit I am surprised they managed to separate these two criteria.

And again with the next question maybe a little self-examination is needed by the criteria writers. Ask the DWP to do a simple task, or even two, and then sit back and wait…

So take consolation when the next ESA50 drops through your door, that although its life or death, although it is the most important thing you will ever do as a cripple, although it intends to break your balls and make you weep, it is actually a badly written piece of shite, and anything you write at all on that form will only increase its credibility and its worth.

And good luck.

P.S.

I don’t think that Atos or the DWP will gain much insight from my form, apart from the fact that I am a mardy arsed, foaming at the mouth cripple with a persecution complex, but maybe that and a note from my GP could just be enough to exclude me from games. Fingers crossed eh?

Clubbed to death……. By a Paralympian (By @hossylass)

Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.

Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.

I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.

I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.

So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.

It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.

But like the majority of disabled people, I got a disability that isn’t.

It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.

ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.

And it ain’t Paralympian.

ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.

But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.

ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.

And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.

We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.

And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.

Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there.  A quantifiable scale.

ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.

“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.

We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.

Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.

I can sense the clubs descending already.

Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.

Knowledge Is Power - So What Do The DWP Have To Hide?

The world of welfare is a murky one. Balanced, detailed and accurate information can be particularly difficult to find, which is why it was such a pleasure to see a video produced by the Ministry of Justice about appealing against a Work Capability Assessment decision. The information provided was clear, practical and empathetic, it's one of the best pieces of information about appeals that I've ever seen.

So you'd think given repeat assurances from Chris Grayling and Iain Duncan Smith that the genuinely vulnerable have nothing to fear from this process and their confidence, despite the recent BMA vote to call for the immediate end of the WCA, would mean that Ministers and the DWP would welcome any clear, sensible information on these processes.

Not so. The infomercial was removed after less than a week, eventually reappearing after a three month gap, only to disappear again as it became the most popular video the Ministry of Justice have ever made. In an email, the Minister for Work and Pensions complained that the video explained claimants are twice as likely to win their appeal if they appear in person, and that the DWP rarely send a representative to the appeal.

Another difficult to penetrate area is that of welfare to work programmes and the work providers, an industry widely understood to have been beset by fraud many years before the current deluge of allegations began. The company most widely associated with these issues is A4E, run by Emma Harrison who took £8.6 million in dividends from her private funded by the public company. That might be fair enough if A4E had a stunning success rate in helping people into full time, sustainable, fairly paying jobs. But they don't. And to be fair to A4E...neither does anyone else involved in the industry. It really is scraping the barrel when the best you can find to say about a company is that they're just as bad as all the other companies in their sector.

Over the past few weeks I've noticed something on twitter, initially because it seemed like a clever example of a private company turning to social media to improve their brand image, but then increasingly, and a bit grudgingly it turned into respect for the way this individual was behaving. Jonty Olliff Cooper is one of the directors at A4E and he has been using his personal twitter account to answer people's questions, a fair proportion of which are hostile. At first I just noticed that Jonty's responses were always calm, and polite, but as time went on I realised he was also genuinely attempting to engage, to pass on information and vitally to explore the information sent to him.

It's all very odd. No-one explains about welfare in detail, not the DWP, and certainly not the private contractors associated with it. So, it's fascinating, that all of a sudden whilst the DWP are still attempting to conceal accurate information published by the Ministry of Justice, the private providers are starting to try and shine some light into the murk. It would make a cynical person wonder just what the DWP might have to hide?

And then it all got a bit curiouser and curiouser as Alice would say. I noticed this new 'claimants' section on the website of Atos Healthcare. As I read through each section I found myself thinking 'actually this is quite good information'...which is a very disturbing feeling for a welfare warrior to have about the feared and loathed Atos Healthcare. It explains what to expect before, during and after your assessment, and crucially, who is responsible for what. It points out that if you are unable to attend for a WCA assessment the DWP only permit this to be rearranged once, and if you ask for a second then the DWP issue a form. Odd really, you'd think the DWP being a government department covering sick, disabled people and carers as part of their remit would understand that sick, disabled people and those who care for them can have frequent medical emergencies, so why would they not build into the system an ability to cope with that scenario?

It's was interesting to see that although Chris Grayling has repeatedly insisted everyone will have a face to face assessment as part of the WCA process, that this is clearly untrue, Atos describe this as 'an early check to indicate the person does not need to be invited for face to face assessment. Wherever this confirmation comes from it will hopefully be of some reassurance to claimants, because it's been the most vulnerable, particularly those with mental health conditions who have been most terrified of the prospect of the repeated and regular face to face assessments Ministers have insisted will be the case.

For me though, the most fascinating section was 'In Partnership with the DWP'. This clearly lays out the responsibilities of Atos Healthcare, The DWP and HM Government, explaining that Atos are responsible for recruitment, training, collecting evidence, booking and carrying out assessments etc, all in accordance with the criteria laid out by DWP. DWP are responsible for (emphasis mine);

• Designing and developing the format and criteria for assessments
• Reviewing all evidence presented by an individual, including but not limited to the report from Atos Healthcare, and making a decision on an individual’s entitlement to benefit
• Setting delivery targets and metrics for Atos Healthcare quality and service
• Monitoring service delivery against contractual requirements
• Authorising medical protocols used in clinical applications

So it seems that finally some light is being shone into the dark details of welfare, from the most surprising of sources, the private contractors themselves. I'd highly recommend people read through all the information on the Atos site, partly because it's a clear explanation of how the process works and what to expect, but also because it clarifies departmental responsibilities. It really should make anyone genuinely interested in who is responsible for the Work Capability Assessment process ask why the DWP are not only the last to come forward with open information, but why, when the other parts of the sector are starting to try to do just that, the DWP are still trying to actively conceal such information?

Flipping A Coin - By Hossylass

Out today is a report that will inflame and upset the motor industry.  In these difficult times they stand to lose in excess of 50,000 car sales a year.

This is not the only loss though – the loss of jobs will also be significant, and it will be a tiny pebble that causes ripples throughout a huge and diverse industry.

So what is the cause of these job losses and sales losses? Surprisingly the answer is the Welfare Reform Bill.

Under the new WRB some 280,000 people will lose the very allowance that pays towards a suitable  and adapted vehicle, that allows them to mobilise, to work, to get treatments and to have some life outside of four walls. Without these vehicles the recipients of the allowance would be housebound and unemployable.

Some would say that there is an alternative, such as public transport.

However, a few days ago Transport for All and DPAC invited MP’s to join them on public transport in London, to test this theory.

Now public transport in London is the flagship of accessible transport. Nowhere else has as many accessible buses, tubes, trains or taxis, but Londoners will assure you that the situation is dire.

If there is a limited chance of using public transport in London, then the chances of finding it in a remote area of the UK are even smaller – many places don’t even have a bus every day, let alone an accessible bus. Without these buses the recipients of the allowance will be housebound and unemployable.

Two sides of the same coin.

Of course there is the Government response of Access to Work, and the vast amount of money that will become available for taxis. Except it probably won’t be available.  Access to Work is a postcode lottery – extracting help from them is almost impossible in some regions.

For someone in a rural area to get to their nearest post office of five miles away, they would firstly have to persuade a taxi company to come from the nearest town, some 10 miles away, to take them to the post office. Total round trip for the taxi 30 miles for a 10 mile fare…

Even given the London centricity of the thinking, it won’t work in London. Its stands no chance of working across the country.

Again it has fallen onto the shoulders of the disabled community to do the job of the Government and investigate the cumulative financial and social impacts of the WRB – congratulations to both ventures for undertaking this.

PRESS RELEASE

Embargo: 25 June 2012

New report warns car industry to lose out under welfare reform plans

A new report has highlighted the dangers to the UK’s economy following an analysis of the impact of welfare reform on the motor industry.

‘Reversing from Recovery’, published by the WeareSpartacus campaign group, analyses figures supplied by the Department for Work and Pensions and Motability, the organisation that supplies lease cars to disabled people claiming Disability Living Allowance. The report focusses on some of the impacts of the government’s plans to reform Disability Living Allowance (DLA), and its proposal to remove 280,000 disabled people from claiming the higher mobility rate of DLA, which currently qualifies them to lease a car under the Motability scheme.

The analysis estimates that, under DLA’s replacement benefit, Personal Independence Payments (PIP), there will be a 27% reduction in the number of working age disabled people, and a 17% reduction in the number of disabled people overall, qualifying for the Motability scheme.

Motability’s publication ‘Economic and social impact of the Motability Car Scheme’ (2010) identified the scheme’s contribution to the economy through employment generation and tax receipts. The new report shows that welfare reform plans will lead to a domino effect including the loss of:

·         3,583 jobs (from 21,080 jobs to 17,497 jobs in Motability-related industries)

·         £342 million contribution to GDP (from around £2 billion to £1.67 billion)

·         £79 million in tax receipts

·         Up to £324 million contribution to GDP from disabled people’s ability to undertake paid work.

Jane Young, an independent disability consultant who co-authored the report, said:

“It’s not just disabled people who will lose out under the Government’s welfare reform plans. Changing from DLA to PIP means fewer people qualifying for Motability cars to the tune of about 31,000 fewer vehicles a year. Less demand means fewer jobs for the car manufacturing industry, a lower contribution to GDP and the exchequer, and a knock on effect on the availability of cars in the second hand market, which also contributes to the economy.”

The report also raises concerns about future investment in the UK by car manufacturers, given the demand for new cars is going to drop as the government phases in its plans.

Rob Parsons, an Open University lecturer who also contributed to the report, added:

“We must remember, of course, that part of this picture is the impact of these changes on disabled people themselves.  85% of Motability car users say the car has a positive impact on their ability to access health services, whilst more than 1 in 3 of those able to work say it maintains or improves their ability to undertake paid employment. 7% of customers’ families say it enables a family member to gain or keep a job.

“We’ll see disabled people less independent, less likely to be able to get or keep a job and more likely to close businesses or give up self-employment. Having welfare reform plans which interfere with employment prospects is nonsensical. The Government should think again.”

The report is calling on the Government to give further consideration to the wider consequences of disability benefits reform, including consulting more widely, before finalising the regulations under the Welfare Reform Act.

For more information or to obtain a copy of ‘Reversing from Recovery’, the full report or summary version, contact:

Jane Young:  jane.young@wearespartacus.org.uk;  07775 892344, or

Bethan Morris:  beth.morris@wearespartacus.org.uk   

Notes for editors:

• ‘Reversing from Recovery’, both the full report and the summary version, will be available to download fromhttp://wearespartacus.org.uk after publication (25 June 2012)
• Disability Living Allowance (DLA) is a benefit that helps individuals meet the additional costs that come from living with a disability and is payable to people in work as well as out of work
• Details of the Government’s proposals for PIP, including projections of the number of people expected to be eligible for the enhanced mobility rate, can be found in the DWP consultation document, ‘Personal Independence Payment: Assessment thresholds and consultation’ (January 2012), available at http://www.dwp.gov.uk/consultations/2012/pip.shtml
• The Motability publication, ‘Economic and social impact of the Motability Car Scheme’ (2010), is available for download athttp://www.motability.co.uk/documents/PDFs/OEReport.pdf
• The WeareSpartacus campaign group is an internet-based group of disabled and sick people from around the UK which campaigns for welfare benefits and social care services that enable disabled and sick people to live independently and with dignity.