Disability Benefit Cuts – A Ramble

I’m having a lot of brain fog issues at the moment, so this may not make much sense and may contain errors. Please correct me if you spot any- I’m not looking stuff up as I’m typing this.

In the UK currently there are lots of cuts to disability benefits occurring. Most of them aren’t being branded as cuts of course- they’re branded as “improvements” to reduce the amount of benefit fraud and help disabled people back into work.

There are problems with this. The two main disability benefits are Incapacity Benefit (currently being replaced by Employment Support Allowance – ESA) and Disability Living Allowance – DLA (which is planned to be replaced with Personal Independence Payments – PIP). Despite all the media saying that there’s massive amounts of fraud with these benefits, the fraud rate for Incapacity Benefit is 0.3% and the fraud rate for DLA is 0.5%. These are the lowest levels of fraud for any state benefit, including the state pension (which is based off age, so I would have thought it would have been harder to claimย fraudulently).

For the last couple of years, you haven’t been able to make a new claim for Incapacity Benefit (the out of work sickness benefit). You have to claim ESA instead. ESA is a lot harder to get on purpose. I’ve never actually claimed Incapacity Benefit (I get Income Support for incapacity reasons instead, as I didn’t have enough national insurance contributions and they messed up with the young person’s rule years ago, but never mind :p) but I think you filled in the form, submitted sick notes from the doctor while the DWP assessed you by getting information from the form and doctors, you’d get a medical with a doctor if there was any confusion or they needed any information, and then if you were classed as too sick to work, you’d be on Incapacity Benefit for a while without having to submit sick notes, and depending on why you were on it you would be reassessed periodically to see if there’s any change. That could all be wrong though, as I’ve never done it and I can’t be bothered to look it up right now.

For me, I had to submit sick notes for a bit, but when I claimed DLA and received the higher care rate (DLA is for care and mobility needs due to long term illness or disability, and is not an out of work benefit- you can get it whether your working or not) which meant I needed care frequently during the day and night, I was automatically considered too ill to work and no longer had to submit sick notes and didn’t have to worry about having medicals and stuff. I think this applied to Incapacity Benefit and Income Support for incapacity reasons.

Quick note about Income Support- that’s what you get if you’re poor, not working and not able to work for some reason (being too ill, being a carer, being a parent of a small child). As you can guess from the name, it’s based on making sure you have enough income (as the letters say, how much the law says you need to live on), so some people would get a bit of Income Support on top of Incapacity Benefit, especially if they live alone, also get some DLA (which means you get extra money on your Income Support as well, though it gets complicated so will not discuss them here) or if they live with a partner who doesn’t work, or earns tiny amounts in part time work. If you can work but aren’t because you’re unemployed, you get Job Seekers Allowance instead, which is the same rate as Income Support but requires you to be looking for work.

ESA is a bit different. You send in your doctor’s sick notes as normal at the start (though they’re now called fit notes), fill in a form from hell (all disability benefit forms are forms from hell- with one exception being the 4 page DLA renewal form that I’ve had once but most people never see). They contact your doctors and stuff, then call you in for a medical with ATOS. The medical person may be a doctor, but might be a nurse or another health professional instead. They’ve probably had no experience with whatever it is that’s making you too ill to work (especially if it’s mental health issues) and will probably show no interest in knowing either. The medical is a tick box thingie on the computer, with lots of questions like “can you touch your toes” and “can you raise your arms above your head” (even if you’re claiming for mental health reasons). They tick boxes, then send the report to the decision maker at the DWP, who is meant to take everything into consideration (the form, your GPs and specialist reports, and the ATOS medical) but who is more likely to agree with whatever the ATOS medical person said and ignore everything else (you know, the stuff from you and people who actually know you and your illness/disability).

There’s three rates for ESA. There’s the assessment rate, which is the same as Job Seekers Allowance (and for the more observant of you, the same as the base rate of Income Support, but that’s not really relevant as you can get ESA and Job Seekers even if not completely poor based on your national insurance contributions- they call that contributions based, funnily enough). You’re on that while being assessed (no way!). Then when you’ve been all assessed, there’s the Work Related Activity Group – WRAG rate, which is a bit more, though the politicians who set the rates would still struggle. You’re meant to be put in this group if you’re not well enough to work right now, but you should be able to work in the future with a bit of help and support, so you have to attend interviews with this goal every few weeks (but you don’t have to actively seek work as you do on Job Seekers). If you’re considered too ill or disabled to work at all (there is some criteria for this, such as not being able to walk or self propel a wheelchair 50 metres) then you get put in the support group, which is even more money (though still not enough for those pesky politicians to live off) and means you don’t have to do the interviews.

Unlike the current system, there’s no automatic exemption from reassessment if you’re on higher care DLA. Pretty much everyone (it may be everyone, but I can’t remember right now) will be reassessed again after a period of time, which may be as short as a few months (brain is saying 3 or 6, but I’m not sure which). Even if you’re so disabled that you get put in the support group and get high care DLA, you may have to go through the whole lot again after a few months.

To make things worse, lots and lots of people are assessed incorrectly. They either fail to qualify for the WRAG rate so are expected to go job hunting, or they put in the WRAG when they should be in the Support Group. As this is not on, they appeal. And win- 40% if doing so by themselves, 70% if they get help. There’s currently a massive backlog of appeals, they’ve had to bring in extra judges to process them, and if you need to appeal you’ll probably have to wait a year. While you’re appealing, if you’ve been denied ESA at all you’re allowed to claim the assessment rate (which isn’t much- about ยฃ67 a week, and less if you’re under 25). If you’re lucky enough to be put in the WRAG instead of the support group, you get a bit of extra money (though not as much as if you were in the support group) but you’ll have to do those interviews while you’re waiting for your appeal to go through, even if you’re bed bound.

Of course this is all really stressful. Even while there were lots of problems with ESA (especially the tick box medical) and all the charities and even the politicians could see it wasn’t working properly for new claimants, the government in all their wisdom have now started moving everyone who was on Incapacity Benefit over to ESA. And people who got Incapacity Benefit without issue for years (because they qualified, not because they were scrounging- remember the 0.3% fraud rate?) are being thrown off ESA and expected to go on Job Seekers and look for a job. So of course they’re appealing as well, which is making everything worse. Oh, and those of us on Income Support for incapacity reasons are also going to be moved over to ESA by 2013. I can’t see that improving the situation.

So that’s ESA. It’s failing, and the government aren’t fixing it. At least they’re acknowledging there are problems though, while saying we’re all scroungers. I guess that’s something…

DLA next. As I said earlier, it’s for those with a long term illness or disability that means you have extra care or mobility needs. It’s not an out of work benefit, as you can get it while you’re working (and indeed, it helps some people with disabilities to be able to work, by helping with extra costs). Children can get it as well, and if you’re already getting it when you turn 65, you’re allowed to keep claiming it (if you become disabled after you turn 65 though, it’s Attendance Allowance for you, which is different and not as good, but I’m not going into that further here).

There are two components to DLA- care and mobility. The care component has three rates- low if you just need a bit of extra help during the day, or (if over 16) you can’t cook a proper meal for yourself because of your disability (bunging something in the microwave does not count as proper cooking). Middle you get if you have frequent care needs during the day or night, and high if you have frequent care needs during both the day and night. There are two rates for the mobility component- lower if you need someone with you when you’re out and about, and higher if you’re unable, or virtually unable to walk.

Getting DLA is not easy, and the system isn’t perfect. There’s the form from hell (over 40 pages) then all the evidence and stuff, then you might need to have a medical with an ATOS doctor (I think it’s always a doctor for DLA, but I may be wrong). Unlike ESA though, the medical actually goes through what your disability is, and how it affects you and what your care and mobility needs are. I’ve only had to do it once (lucky me!) but the doctor was nice, listened to me, understood when I couldn’t do certain tasks, and let me ask questions and make some clarifications at the end. I’m hoping that’s the normal experience, but I suspect I probably just got lucky.

If you’re very lucky (like me), you get DLA first time. More likely though, you’ll either get declined or they’ll put you on a lower rate than you’re entitled to. This is because the decision makers have a tendency to completely ignore everything you wrote and all your evidence, and send you a nice letter with reasons that appear to be written about someone else. When I asked for them to relook at my claim for a change in circumstances (I became unable to walk) that happened. Anyway, when your unsuccessful, you appeal. It appears that more and more people are being declined DLA, including people who have claimed it successfully in the past and have not gotten any better (or have got worse). I can’t remember how many DLA appeals are successful, but I think it’s a lot lower than for ESA as more claims are accurate to begin with (though that’s becoming less of the case now).

Okay, so DLA isn’t perfect, but once you’ve got it it’s not too bad. You may get it indefinitely if you’ve got something that won’t get better (this means they can look at your claim again, but may not for a long time), or you’ll get it for a certain period of time before needing to reapply. For me, I got it for one year the first time, two years the second time and three years the third time (I then asked for a reconsideration due to change in circumstances a year into the third claim, because I became unable to walk so was entitled to higher rate DLA, having previously got lower rate). My DLA is due for renewal in January 2013, and though I’m hoping not to need it (or at least not need it at as high a rate, as with the current rules I’ll always be entitled to some due to autism) I’ve accepted a probably will, but may have it declined.

Despite its problems, DLA works really well. You know when you’re going to be reapplying. Having DLA works as a passport to other things, such as extra Income Support, Carer’s Allowance if you have an unpaid carer (for middle or higher care), a blue badge and a free bus pass if you get higher mobility, and lots of things that require proof of disability accept a DLA letter. I also really like the 4 page renewal form I got last time, as being able to tick that nothing had changed, sign it, send it back and then getting it renewed for 3 years was really painless. The government could probably improve the form, but at least you know with it you’ve probably gone through everything. The three different rates of care are also good, as it acknowledges the extra costs that come up if you’re mostly independent, but may need some help for part of the day, say for cooking a meal.

The government wants to scrap this mostly working benefit and replace it with PIP. They claim this is to improve it, but they’ve also said they want to save 20% off the costs of DLA with it. They’re doing this by tightening up the criteria for it, so that lots of disabled people who are getting DLA now won’t be entitled to it. They’re removing the lower rate of care, and lots of things that DLA accounted for will be ignored in it. And it sucks. I’ve looked at the criteria and if I’m still as ill when it’s implemented I should get the higher rates still, but I suspect that I will have to fight for it and other people with less obvious disability will be declined it, even if they should be entitled to help. The transistion is meant to take place in 2013.

I’m upset. So are lots of other disabled people, who are far more eloquent than me. The government and the press are bringing in these changes by hounding us in the media and saying we’re all scroungers and we should all be working. My friends, some of whom are just as disabled as I am, are being denied the benefits they need to live. And with all these changes, it’s only going to get worse.

Exploring the Darkmoon Faire

Danni in Transmogrified gear.
Danni in Transmogrified gear.

I’m still improving physically. Sitting in my computer chair is no longer a problem, and I can manage it for several hours without getting any worse. The only problem is movement makes me very ill, so if I try and go in my wheelchair to the bathroom I start feeling really dizzy and sick. As the bathroom is quite a distance away by wheelchair thanks to how big our rooms are, I’m using the commode for now. This also has the advantage of me being able to use it when I want without asking, as I can transfer by myself again ๐Ÿ˜€ (Johan says emptying it isn’t any more difficult than pushing me into the bathroom, so he doesn’t mind).

Cognitively I’m not doing too brilliant. There’s been a slight improvement, but writing emails is beyond me, as is understanding Facebook. I am however managing to play quite a bit of World of Warcraft, and since I’ve not been on for ages I have lots to catch up with.ย This week the Darkmoon Faire is on, and they’ve changed it since the last time I was there (the changes were in place last month, but I was too ill to see it then). It now has its own island, lots of games and quests, and I’ve been having a lot of fun with it ๐Ÿ™‚ My favourite game is the ring toss, as I never need more than one token for that ๐Ÿ˜› Also available there are replicas of some of the sets no longer available, including the Devout set I want for Danni, my priest. I’ve managed to get enough prize tickets for the robe, and have done some transmogrification of other items to match it while waiting to get the other items in the set. I may keep the witch’s hat though, as I like that ๐Ÿ˜›

I’ve also been doing quite a lot of heroic dungeons on Danni, as the new ones are very short and easy, and (as I said to one of my groups) it doesn’t matter that I’m now rubbish at healing because no-one dies anyway ๐Ÿ˜› I’ve also ran a bit of Raid Finder, which is interesting but requires more concentration. I am definitely a lot worse at healing than I used to be, and was normally one of the bottom healers, but it was fun and no-one yelled at me, which was good.

Since I’m now able to sit up and do more, I’m going to start making lists of things I want to do. I have television programmes I want to catch up on, lots of things in World of Warcraft I want to do, and films I want to watch. I also have blog posts I want to write, but my concentration isn’t there for them. I’ve got a couple of them in draft form that I’ve started, so I may have a look after this to see if I can finish one of them. I’ve also still got two emails to write, so maybe they should come first. I phoned Sammie on Monday and that went well, so I’m hoping to phone her every weekend to see how she is and things. I’m going to buy a stereoย Bluetoothย headset for this as I’m finding it hard to hear her a lot of the time and being able to hear with both ears may make it easier.

I’m not sure how I’d describe my M.E. right now. It’s nowhere near as severe as it was, but I’m still housebound and mostly stuck in one room, especially since moving makes me feel so ill. I only manage to get on my computer as it’s very close to the bottom of my bed, and I can go straight from the bed onto my computer chair. Once I’m in my computer chair I’m reluctant to get out of it again as the moving between chair and bed also makes me very dizzy and nauseous, though it eases off quickly once I’ve stopped moving. I’m able to eat okay, and even manage a spoon sometimes ๐Ÿ˜€ Being able to sit up though (even in my reclining computer chair) is brilliant, and playing games online (both World of Warcraft and The Sims Social) is a brilliant distraction from the pain and how ill I feel.

I’m also very happy at the moment. Some of this is being really grateful for what I’m able to do now, and for any improvement. Me being happy is also helping Johan’s mood, which is great. I still have the occasional meltdown, but that’s mostly due to sensory overload and is over quickly. Most of my penguins are now sitting on the sofa, as my single bed isn’t big enough for them all and I can see them from my bed there. Tomorrow bidding opens again for more council houses, and we should get somewhere soon. Our urgent priority is for two bedroom bungalows or ground floor flats, with step-free access and a level access shower. We’re not too fussy on where we move to so long as there are decent bus links, but ideally I want to be along Durham Road or close to there because it’ll be so easy to get to Gateshead and there are normally a lot of shops and facilities. The two bungalows I bidded on over Christmas were both in Birtley, which would be awesome (I also bidded on a three bedroom house in Blaydon, but we won’t get that even though it’s adapted- it was the most suitable of the other choices though).

Somehow this outpouring of thoughts has gotten very long. How come I can type really long blog posts in not very long (about 15 minutes on this one) but not short emails or blog posts on important subjects? I don’t know ๐Ÿ˜›

2011 In Review

I did this last year, and enjoyed it so will repeat it for this year.

1. What did you do in 2011 that youโ€™d never done before?
Had an entire year as an adult without depression ๐Ÿ™‚ Also, got an A in an AS Level exam ๐Ÿ˜›

2. Did you keep your New Yearโ€™s Resolutions, and will you make more for next year?
I mostly kept to them, and have made more (see previous post).

3. Did anyone close to you give birth?
Not that I know of.

4. Did anyone close to you die?
No.

5. What countries did you visit?
I stayed in England this year.

6. What would you like to have in 2012 that you lacked in 2011?
My health would be nice…

7. What dates from 2011 will remain etched upon your memory, and why?
26th December. I made a phone call to Sammie for her birthday and didn’t panic!

8. What was your biggest achievement of the year?
Probably improving my phone phobia, though passing my exams was cool too ๐Ÿ˜›

9. What was your biggest failure?
My body. It decided that it wasn’t already annoying me enough and made things a lot harder.

10. Did you suffer illness or injury?
My M.E. got a lot worse, resulting in me being completely bedbound at times, and mostly bedbound for about half the year. Also lost the ability to walk completely, so when I could get out of bed I had to use the wheelchair. I also had some teeth taken out under a general anaesthetic, with one of them having been bothering me since 2010.

11. What was the best thing someone bought you?
Sammie bought me a World’s Greatest Mummy cup. She also made me a penguin. (I do appreciate the penguins other people have given me this year, but Sammie wins. Sorry.)

12. Whose behaviour merited celebration?
Johanโ€™s, for looking after me, and my friends on Twitter and AYME for being so nice, kind and understanding (that includes all of you with depression).

13. Whose behaviour made you appalled and/or depressed?
Most of the Tory and Lib Dem government.

14. Where did most of your money go?
Bills and disability equipment.

15. What did you get really, really, really excited about?
PENGUINS!!!!!! ๐Ÿ˜€

16. What songs will always remind of 2011?
Forever Yours by Alex Day.

17. Compared to this time last year, are you:
a) happier or sadder?
Happier.
b) fatter or skinnier?
Skinnier. I keep losing weight. I’m happy with it, and want it to stay the same now, but I don’t seem to have much control over it.
c) richer or poorer?
Richer

18. What do you wish youโ€™d done more of?
Probably blogging.

19. What do you wish youโ€™d done less of?
Pushing myself too hard.

20. How do you plan to spend Christmas?
I spent Christmas in bed, being waited on by Johan and watched Doctor Who. Happiness.

21. Did you fall in love in 2011?
Nope, but I made some new friends who I love ๐Ÿ™‚

22. How many one night stands?
Since I haven’t been able to get out without Johan all year, I’d wouldn’t have been able to even if I wanted to (which I don’t, as I have Johan).

23. What was your favourite TV programme?
Doctor Who!

24. Do you hate anyone now that you didnโ€™t hate this time last year?
Still don’t hate anyone. Dislike the government.

25. What was the best book you read?
Either Sapphire Battersby or the Hunger Games series.

26. What was your greatest musical discovery?
Alex Day and Chameleon Circuit.

27. What did you want and get?
Penguins! An A in my AS Computing. I also got the new television I wanted last year ๐Ÿ˜›

28. What did you want and not get?
My health to improve. Instead it got worse (I am not happy with you, body).

29. What was your favourite film of this year?
Harry Potter and the Deathly Hallows Part 2.

30. What did you do on your birthday?
Received a big DLA back payment, so bought a television ๐Ÿ˜› I also ate Doctor Who cake. The day before I’d gone to Flamingo Land with Johan and college so got to go on the rides and see the penguins, which was awesome.

31. What one thing would have made your year immeasurably more satisfying?
My health being better, though to be fair the year was very satisfying anyway ๐Ÿ™‚

32. How would you describe your personal fashion concept in 2011?
Purple and pyjamas.

33. What kept you sane?
Chocolate, penguins and Twitter ๐Ÿ™‚

34. Which celebrity/public figure did you fancy the most?
Summer Glau (still).

35. What political issue stirred you the most?
The government making things even harder for poor, ill and disabled people. Stupid idiots.

36. Who do you miss?
Sammie, as I’ve not been well enough to see her this year, though I am in contact with her.

37. Who was the best new person you met?
All my new friends on Twitter and at AYME ๐Ÿ˜€

38. What was the best thing you ate?
I’m not sure. At times just being able to eat was amazing ๐Ÿ˜›

39. Tell us a valuable life lesson you learned in 2011?
It’s a really good idea to listen to your body if you’re ill, otherwise it may rebel against you.

40. Quote a song lyric that sums up your year:
I can’t think of a song lyric ๐Ÿ™ Giving up after about half an hour of trying to think of one.

Happy New Year!

Danni sitting in bed, drinking from a wine glass with a straw.
Danni sitting in bed, drinking from a wine glass with a straw.

So it is now 2012. A year where lots will probably happen, but I only know a little of it. London is hosting the Olympics, we’ll probably move house. Johan will find out if he’s on the autistic spectrum or not.

Last year I made some resolutions. Here they are:

  1. Be kind to myself.
  2. Be more aware of my limitations, and stop overdoing it so much.
  3. If something is medically wrong, seek help sooner, rather than 6 months down the line.

I think I did well keeping these over the year. I was much kinder to myself, with the result that I’m much happier than I was a year ago. My anxiety levels have dropped a lot, and this has meant I’ve been able to work on some of those pesky phobias. The second one took a while to get used to, and I still slipped up (especially trying to go back to college for a second year) but overall I’m much better at being aware of my limitations and sticking to them. As for the last one, I did seek help when I needed to a few times. Luckily I’ve had no major new symptoms in the last year, they’ve just been a lot more severe. When I did get something new (chest pain) I sought help immediately and it was sorted quickly. The only problem with it is now I can’t see doctors by leaving the flat without breaking number 2 ๐Ÿ˜›

For this year, I’m making very simple resolutions.

  1. Try and get better.
    By this I mean do whatever is in my power to improve, such as resting enough and listening to my body. The improvements I’ve seen in the last few days mean I’ve got a head start on this one ๐Ÿ™‚
  2. If I can’t get better, try not to get worse.
    Since I can’t control M.E (as much as I want to), I’m not going to be upset if I don’t improve. I will however try and prevent relapses and things.
  3. If I can’t do either, try and stay happy.
    I may not be able to prevent myself getting worse, but I do have some control over my emotions so I’ll try and remain happy anyway ๐Ÿ™‚

To keep this year’s resolutions, I’ll have to keep last years. I’m happy with that ๐Ÿ™‚

Improvement

I’m still nocturnal, so when I say day I mean the period of time I was awake (starting around 7pm last night).

I have just had the best day physically for about 3 months. My pain was well managed with painkillers. I managed to eat with a spoon, only dropping it occasionally and the hand spasms being short lived. I sat in my computer chair for two periods, both of several hours. This I was able to do as I didn’t feel worse for being in it- normally within a few minutes of sitting up I start getting very dizzy, more nauseous and generally feel more ill, but today it just didn’t happen. I probably spent far too long sitting up because of this, but I still feel okay now. I even forgot temporarily that I couldn’t walk, so fell over in the attempt ๐Ÿ˜›

I’m not sure why I’ve had such a good day, but I suspect that it may just be that I’ve been listening closely to my body the last few weeks. I’ve had no external commitments, so I’ve been sleeping when I want, eating pretty much when I want and not pushed myself to do anything that may make things worse. I’ve also let Johan do more for me, and have tried hard not to feel too guilty about it.

This may be a one off. I may have really overdone it today and end up relapsing again. I hope not. M.E is often an unpredictable illness, and since we don’t know the cause we can’t be entirely certain what makes it worse or better (though over-exertion will normally make things worse). Up until now, my general trend has been downwards, gradually getting worse with occasional relapses that are much worse, but which I normally recover from (though not always back to where I was before). That has been the case since I first got M.E over 2 years ago. Some of that has been caused by me being too stubborn and overdoing it, especially with college. Since I quit college in October, it was hospital and medical appointments (including ones to see the CFS clinic and my specialist) that made me overdo it. The only period of relative stability was during the summer holidays this year when I didn’t have college and didn’t leave the flat (and I was doing much better then than I am now). As soon as I started going to appointments and then went back to college, I declined rapidly and ended up nearly completely bedbound (only able to get out of bed for very short periods of time-no more than 10 minutes without getting payback).

I am hoping that today’s improvement is a sign of things starting to get better. I still have a long way to go, as even today I’ve had to have Johan do a lot for me. Cognitively I’m still not even back to where I was pre-relapse, and I feel stupid and very confused most of the time. I will take anything I can get though.