Wrong Wrong Wrong

Far better and more politically astute bloggers will write (and have already written) about the silliness in government arguments surrounding reform of the DLA (Disability Living Allowance) benefit.  However, having woken up to yet another repetition of the silliness, I thought I better write down why the arguments are wrong, even if reform is important.

There are several points I'd like to answer in this BBC article  as briefly and clearly as I can (thereby proving why I could never have a career in politics)

"Mr Duncan Smith said the number of people claiming it had risen by 30% in recent years."

In recent years: don't you just love when a statistic is varified like that?  What are recent years?  Ask a ten year old and ask an eighty year old and the difference will be very great indeed.  And so, I will qualify my next statistic.  Between 1994 and 2011 there was a 34% increase in the number of cars on the road.  Now obviously we're all aware of this (apart from the ten year olds) and it's no big shock.  But if you say it about people who live lives which are often unseen by many, who you're insinuating are taking money unfairly, it's a shocking thing.  Mr Duncan Smith might further qualify by saying...

"It's been rising well ahead of any other gauge you might make about illness, sickness, disability or for that matter, general trends in society."

...but I don't believe him.  I mean, the general trend is less than the increase in cars on the road.  There are more people surviving dangerous illness and injury.  There is better care for people with mental health problems (even if it's still woeful).  Disabled children are kept alive longer.  And, of course, of the 34% increase in cars, there are now plenty made in such a way that you're less likely to die in an accident.  And how many of those 34% collide with pedestrians?  Nice soft bouncy bonnets can only do so much.

To suggest that there's something sinister in the increased numbers of DLA claimants is just weird.  I mean, between 2009 and 2011 there was a 100% increase in Prime Ministers who claimed DLA for a child.

So what does Mr Duncan Smith claim is the reason for the increase?

"A lot of that is down to the way the benefit was structured so that it was very loosely defined..."

If something is loosely defined to begin with, why would the number of successful applicants suddenly increase later on?  The only thing I can imagine is that 1.) he's suggesting that people have somehow worked out loopholes that allow them the benefit, or that 2.) we've developed disabilities in such a way as to fit the criteria, tricksy little things that we are.  This is so silly and strange I really can't work out how to argue against it other than saying it's wrong.

"Second thing was that in the assessment, lots of people weren't actually seen. They didn't get a health check or anything like that."

This really annoys me.  Every single flipping form I've filled in, I've had to go through paper-work / google in order to find out my GP surgery address.  I have to do this so that the people in the benefits office can contact my GP and ask if I'm lying.  Surely, rather than go to the cost (and it's cost we're arguing against) of sending someone to assess me (and let's not even get on to whether that person's qualified or even rewarded for failing you) it'd make more sense to trust a qualified doctor who knows at least a little about my life?

Also, there are some conditions which are quite 'obvious'.  If one of the 34% extra cars were to have had the exhaust fall off and you rang up the garage to tell them and they said 'yes, well, you're hardly qualified to say if the exhaust has fallen off and whether this actually necessitates a repair...' you'd be pretty upset.

Of course, condition is not impairment and we should remember this before we get too angry - there is a reason the form goes beyond diagnosis.  MS is a good example of a condition which can be highly variable.  But surely the need for greater face-to-face assessment is minimal if we remember that all forms sent back should have doctors details.

"Third problem was lifetime awards. Something like 70% had lifetime awards, [which] meant that once they got it you never looked at them again. They were just allowed to fester."

I love the use of the word 'fester'.  The gorgeous writer of Diary of a Goldfish, creator of all things magical and light of my life, has a pregnant sister.  Very soon this will make me an uncle.  Yes - I too could be Uncle Fester.

DLA is about not letting people fester.  It's about giving them the ability to pay for the expensive needs of their disability and so allow them to live as normal and equal a life as possible (allowing them to, say, pay for someone to take them out rather than just festering at home...).

Do I really have to point out the major weakness to this?  Do I really?  Does anyone fail to see the really really really silly really really really wrong wrong wrong thing here?

Disability can result from conditions and injuries which are permanent.

At school I had a friend called Nigel.  He had a condition which has, by now, killed him.  There was no way he would recover.  No way his care requirements would get less.  To burden his family with reapplying for benefits for a condition which eventually killed their son would be cruel.

There are people with mental impairments which will never go away and they will always need help.  There are degenerative nerve conditions, bone and joint problems, mental conditions, cancers and tumours and lions and tigers and bears.  There are so many awful things which DO NOT GO AWAY.

If another one of those 34% extra cars were to have its engine blow up in such a way that the entire front end was mangled beyond repair and, every few years you had to contact the DVLA to confirm it was still un-drivable, you'd get pretty fed-up.  And then, if you thought about the time and money it takes to administer that check, you'd be horrified.

So that's it really.  Most people agree that Disability Benefits need to be reformed.  There's wasted time and money in administration, disabled people are put in positions of fear and dependence, and it's all talked about as if it's a charity rather than a part of NATIONAL INSURANCE.  Those things should change.

Which brings me to my final point.  If one of those 34% extra cars was damaged by an accident and you'd paid your insurance premiums, would you be happy if someone then started droaning on about the high number of insurance claims and how much this was costing them, and how they were going to cut the number of people to whom they pay out?

ESA Transfer Podcast

A podcast for those faced with applying/reapplying for ESA benefit.  There are all manner of scary things going on, so we thought that a bit of information might help combat that a fraction.  Hope it helps someone.



Link to the MP3 for download

Transcript:


Form filling is one of the most destructive parts of life as a disabled person. In order to fill in a form properly, you have to look at your life and pour your heart out onto paper, listing all the ways you don't measure up, only for that to be judged by an annonymous force of terror (who probably wears black and cackles all the time). I'm recording this to share my experiences and hopefully to de-mystify the process.  Deborah, also known as the Goldfish, helped me with all the stages of my transfer to ESA from Incapacity Benefit, and it is she who has come up with what we think are the four most useful points to pass on to other people. She's cleverer than I, so I'm going along with it all. OK, so starting at the beginning.

The first point is that we were ready for an epic saga with dark nights and long battles.  Frankly, I thought ESA would turn into a bureaucratic version of the Lord of the Rings. People are being turned down all the time.  When you see this, and people being placed in the Work Group when that's inappropriate, it's hard not to imagine yourself in that position.  This is made worse when the condition from which you suffer is one which is invisible or subjective or both.  I have ME and this causes me extreme chronic pain, fatigue, neurological symptoms etc.  Aside from looking a wreck, there are no tests that can be done to prove or disprove this.  And, indeed, there are people with ME who have different, less severe symptoms and whom recover from it in a relatively short space of time.  There are many conditions which put people in the same boat.

Meanwhile, because of the particular luxury yacht in which we sail, we are often people who live quietly at home and who only deal with the medical profession when something new or interesting occurs.  I saw a pediatrician for many years, but since I turned eighteen, I've had very little to do with doctors at all.  As such, I don't have the backup of a team of specialist doctors who understand every aspect of my health, my lifestyle or my abilities (or lack thereof).

So you can see why I was in a bit of a state. But I can tell you now that I was very lucky.  I have been placed in the Support Group, and I didn't even have an interview.  This was the very best case scenario, and I couldn't have dreamed of it happening.  So that's a positive point that others facing this transition should take comfort in; I may be more ill than many people on incapacity benefits, but from past experience and the experiences of others, Deborah and I considered me vulnerable to being turned down and messed about with. Yet none of my fears were realised.

You'd think, then, having been put in the support group without interview, that all the communication I had with ATOS would have been stress free and easy.  Alas this was not the case and given that lots of people are worried about the transition, you should be warned about this.

The first telephone communication I had (to change the phone number on which they'd contact me) was very easy and pleasant.  The second phone call (to check I knew what was going to happen) was likewise pleasant.  However, it was at this point that I raised the issue of face to face assessment.  I knew I'd not be able to travel to the assessment venue and so wanted to arrange for a home visit where I could be at my best and have others present to support me (something which I'd had previously).  I was told that this would be no problem and that I should just write on my form that this would be necessary and they'd take it from there. So the form came and we took our time.  It was posted off and seemed to take an age to get any response.  I began to worry in case it had not got to them.  Deborah even phoned to ask if they'd recieved it, but they couldn't tell us anything other than it might take a while.  Finally I heard back from them, but this came in the form of a phone call to arrange a face to face interview despite my having specifically said that this wasn't possible in my form.  "Oh, no problem," says the ATOS chap on the phone "You just have to make an appointment for the interview anyway and get your GP to fax a letter in the next few weeks to say you won't be able to make it.  Then we can set about making the arrangements for a home visit." As you can imagine, this was rather a shock. It was impossible to arrange an phone appointment with my GP in time, so I had to send a letter asking the doctor to write a letter to ATOS and then fax it to them. Given that my GP only works a few days each week, I had to do this straight away in order for there to be any hope she could do it. I simply wasn't well enough to write a letter that day, so Deborah had to rattle one off there and then, a feat which cost her the rest of the day.

Of course, the implication was that if I couldn't get my GP to write this letter, I would lose the benefit for failing to attend the interview.

My next communication from ATOS was a confirmation of my appointment at the interview venue.  It even included a helpful print off of the public transport journey to the venue (90 minutes including 35 minutes of walking).  That didn't help stress levels. The final communication came, however, in the form of a phone call to say that they had recieved a letter from my GP (which I presumed to be the confirmation that I wasn't able to attend the interview, but which turned out to be the original confirmation that the information I provided with my ESA form was correct and that I had ME and was in as decrepit a state as I'd declared).  Because of this, they'd decided to move me straight into the Support Group and that was that.

What's the point of this saga?  Well, whatever position you're in, you're likely to recieve communications which suggest that no one believes you're ill.  To be given a route with 35 minutes walk when I'd written in my form that I couldn't walk more than 20 yards?  To seemingly ignore my request for a home visit?  It seemed a personal attack.  In reality, though, it's just a terribly designed system that treats people as guilty at a base level.

My final two points are advise with the actual form filling. Firstly, the form isn't helpful.  Impairments are broken down into either physical and sensory or intellectual and emotional.  There is no real place for the problems surrounding fatigue, cognative dysfunction etc.  It is up to you, therefore, to work those issues into the answers you provide in the text boxes.  We took a long time formulating answers, and did the whole thing on the computer (finally printing the answers and sticking them in, in a process not disimmilar to a primary school project book.  If only we'd been able to use glitter...).  Anyway, the point is that we had to be careful to write out these detailed answers so people can understand how damaging these symptoms are and how they render work impossible.  We believe that fatigue and cognative dysfunction is a major incapacitating factor for almost everyone with a chronic condition, be that physical, mental or both.  So it's extremely important you not let it get lost out in a form which seems not to have a section for it.

Secondly, the law is very clear that in order to be able to do something, whatever that something may be (walk up stairs, use a telephone, discuss an issue with a stranger, etc), you need to be able to do it "reliably, repeatedly and safely".  Can you answer the phone and talk to a stranger?  Maybe you can.  Can you answer the phone and talk to a stranger several times over, as you might have to if you were working as, say, a receptionist or someone working on a call centre?  Well, that's a very different proposition.  The form does not even hint at the importance of "reliably, repeatedly and safely" at any point.  That means that you have to make it obvious in your answers.  I can make a phone call.  However, I have to be very careful when I do.  I have to set aside energy.  I have to limit the time on the phone (or else get a headache and neck/shoulder/arm pain) and if it goes on too long I'm likely to not make much sense.  I cannot make several phone calls in any given day, or even any given week. If I had to make a phone call this afternoon, or any afternoon when I've used the day's energy on something else, it could not be done.

You must explain always thinking 'if I were in a job, in what way would this symptom be an issue'.  Spell it out and be brave.

So if you are, or will soon be, dealing with the ESA quest, remember to keep your sword sharp and your shield high.  And if possible, keep hope in your heart.  I wish I'd tried harder to heed that advice, but luckily I had Deborah to keep me safe and hopeful.  But I'm not sharing her.

Ely Shopmobility

The other day we went to see Ely Cathedral. A blog post and photos will soon follow charting this, but I thought first I would put up what will hopefully be a useful resource for anyone thinking of using Ely Shopmobility.

I'd never used the Shopmobility service before. For anyone who doesn't know, Shopmobility are a charity who give disabled people access to mobility equipment (wheelchairs/scooters) in town centres throughout the UK free of charge. You do have to register with them to use this service, and so on my first visit I had to take with me a piece of ID confirming my address (in case I decided to, you know, ram-raid a bank or some such).

The staff (who were actually staff members working in the local museum) were extremely kind and helpful and are a credit to the museum and Shopmobility both.

Be warned - Ely Shopmobility is only available on Thursdays, Fridays and Saturdays (top tip - Thursday is market day, so for a quiet day out, aim to go on a Friday) 10.30 - 13.00 and 14.00 - 16.00 and you must pre-book a slot.

Link to Shopmobility Ely site.

The most difficult thing about it, though, was working out where to park. Shopmobility are, as I said, based in the local museum. The museum, however, has been built in the old Bishop's Gaol and sadly, when building the gaol in the 13th century, they didn't think much about where to park the odd hatchback or two (hunchbacks, however, they were totally comfortable with).

So Shopmobility parking is based in the East Cambridgeshire District Council carpark off Nutholt Lane. We had a bit of difficulty finding this, driving past it at least twice. So, here is a Google Maps Street View link to the entrance to the car park.

View Larger Map

The only other problem is then getting to the Museum, but what we didn't originally realise was that they've got a button set up to summon a staff-member! I'll put an image below highlighting the post and button (no.1) and the designated Shopmobility parking spaces (no.2).

So there you go - hopefully this will encourage you to try out the service. It worked extremely well - the machines were in good condition and were to be serviced soon regardless.

And if you need a reason to try Ely Shopmobility out, check back soon for some photos of Ely Cathedral.

One Month Before Heartbreak: Judgement Day

Cross-posted at Diary of a Goldfish

The musings of a pair of rather tired disability benefit claimants communicating via IM trying to raise awareness and support in light of the government consultation into DLA reform. Read if you dare...

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Goldfish: A few months ago, I mentioned to my new GP that my DLA was up for renewal. He warned me that if I got turned down, I shouldn't take it personally - he knew many people who were being refused now, despite having very severe impairments. I know not to take it personally, of course, and yet the current system, political rhetoric, media coverage and the tone of proposed reforms are such that anything we have to do with disability benefits feels very very personal.

Stephen: And indeed it is personal. As much as it'd be nice to live in a communists utopia, we need money to live and as such are reliant upon national insurance to pay out for our survival. But not only that, we, the disabled, are made to jump through hoops to determine whether or not we're capable of work. Which is especially galling when the hoop jumping can be as difficult or impossible as work.

Goldfish: "The disabled"? You're proposing to put this on my blog, honey.

Stephen: You know me - I call a spade a shovel. Dear reader, please forgive my horrendous grasp of correct terminology. I care about you all deeply, even though I'm insulting you at the same time.

Goldfish: Anyway.

Stephen: Anyway.

Goldfish: I think another thing which makes it so personal is the fact that politicians talk about the workshy and other variations on the undeserving poor, the media take that a step further and render most of us scroungers or cheats, but then people around us use the same language - worse language even than "the disabled". They talk about welfare cuts as a universally good thing because of the scroungers, because of the so-called disabled. And if they notice your discomfort, they insist that they don't mean people like you.

What they don't realise is that almost all claimants are people like you, and me. And we're not magically protected from the effect of cuts just because they happen to consider us worthy of protection.

Stephen: Okay okay not so subtle point taken. People who might not be quite so able but who are still dashingly handsome and/or ravishingly beautiful are, indeed, clumped together. I mean, the DLA form itself is only really relative just so long as you stick to a certain set of disabilities. If you're outside of those pre-defined multiple choice answers then you have to write a huge amount to try to explain why you don't fit in and yet why you still need this money.

Goldfish: And I imagine most people are outside those boxes; most disabled people aren't full-time wheelchair users, don't experience total blindness or deafness etc..

Stephen: Do you think that the forms mirror public perception? The good disabled person who's deserving of the money that they so generously donate from their children's piggy banks is the one who answers all those questions by ticking the top most box (and who, sadly, but also thankfully, might not live too long and so not be a long term financial drain)?

Goldfish: In fairness, I don't think the public feels very generous towards those who tick the top box of the mental health questions.

Stephen: True...as we saw recently in the aftermath of the Giffords shooting. The stance of Sheriff Dupnik was that the world was a safer place with the mentally ill locked up rather than integrated into the community. So our ideal disabled victim (because surely they are a victim - of a random virus, a terrible car accident [just so long as they didn't cause it] or, if possible, falling from a height whilst trying to save a poor little girl and her kitten from a tree house fire) is a full time wheelchair user, possibly also blind, very grateful and entirely sane. Is that even possible?

I'm not sure I'd be that sane after all that bad luck.

Goldfish: *rolls eyes

Stephen: What?

Goldfish: I will have to apologise to any heroic blind wheelchair-users who pass by my blog now.

In any case, we were talking about this issue of how difficult it is not to take this stuff personally. You've been trying to sort out your exam conditions for your final university exams.

(Do you like the subtlety there? - I should work on daytime TV.)

Stephen: Indeed. I'm studying for a BA in Classics via distance learning. Because of the setup, it's 100% exam graded. As you can imagine, that means that come exam time there's a considerable amount of pressure. Indeed, for the last few months I've been hell to live with, isn't that right, Darling?

Goldfish: Hades, sweetheart - I thought it was Hades?

Stephen: I've failed already. Anyway, because I'm a person who might not be quite so able but who is still dashingly handsome and/or ravishingly beautiful (or a PWmnbqsAbwisDH/RB to those in the know) I need some help when it comes to exam time. I get to take my exam locally, for example, rather than having to travel to London. And I am able to use a computer keyboard rather than handwrite. And in order to qualify for these I have to get a doctor's letter explaining that I'm a PWmnbqsAbwisDH/RB and so should be allowed these things. In my first year the system was so poorly set up that I wasn't aware as to whether I was going to get the special arrangements or not until two days before the exam.

So although I got the help I needed to make my chances as fair as the next wannabe classicist, I had a considerable amount of extra stress that none of the other candidates did.

Goldfish: (Incidentally, dear reader, he has not been at all difficult, only has occasional flashes of self doubt, such as "I've failed already." What this man doesn't know about the motivations of Ajax when he set upon his "wooly captives" is not worth knowing. )

(That's the lesser Ajax, by the way. Or is it the greater one?)

Stephen: (Greater)

Goldfish: (Okay)

Stephen: (You know when I said could you take the exam for me..?)

Goldfish: Anyway

You were trying to make sure the exam conditions were sorted for this May, love. And like any large institution, the wheels were turning very slowly...

Stephen: Yes. I had been told that there would be no need to reapply, but things have changed and now I have to get a new doctor's letter. Of course, getting an appointment with the GP isn't that easy and I've got that booked for just over a week away. The expectation was that I should be able to get a letter posted off to them instantly, so straight away I wasn't conforming with the idea of what I should be doing.

Then there was the issue of a local exam centre. If you're one of the idealised disabled, the process of getting to London *shouldn't* be a problem. But for me it's impossible.

But the problem is...the people in the special needs department haven't specifically questioned these things. They just mentioned them (in, I think it's fair to say, a rather clumsy way. Even more clumsy than my terminology. Yeah, I know, I didn't think it was possible either). The problem is that I feel under pressure to conform to ideas of what I should be capable of doing. I feel that I am being judged. And, well, I *am* being judged. Someone has to look at my medical evidence and say whether what I'm asking is appropriate. But that's a horrible position to be in. Especially when I am actually paying for the privilege of taking the degree!

By the way, dear reader, Deborah's just popped to the loo. So we're alone now. We can talk about whatever we want! Have you seen the new Mercedes SLK? What do you think of the front end redesign? I'm afraid it's a bit too clunky to me. that sort of front heaviness works on the SLS, but then that's an entirely different vehicle...

Goldfish: Sweetheart, I think you are getting distracted.

Stephen: Er...yes, maybe.

Goldfish: When you got that e-mail from the Special Needs people, you said that you felt that they were suspicious of you?

Stephen: Yes. Well, just the act of asking again. When you're living with something, especially a disability, it leaves you very sensitive to any mention of it. Or it does me. Being told that they would collect the information so that they could make the 'right decision' upset me. What is the right decision? Is it right for me? For the university? For the world in general?

And what's right got to do with it?

If the world were right I'd not have to be dealing with extra process to get to a point of equality.

Goldfish: And I tried to reassure you that they probably weren't suspicious of you, just clumsy and uncreative in the way big institutions often are. But this is how we're made to feel. Like every need, however simple, has to be justified.

And this is the case in many areas. Lilwatchgirl is going through this with Access to Work, you've got this with your exam conditions, but I think it all comes down to the way that we talk about disability in society.

And so much of that is to do with politics, and so long as disabled people are a political scapegoat, so long as money-saving measures are so often focussed on us and how expensive we are, then people are going to think that it is the natural order of things that we have to justify our existence in that society.