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 claim 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 £67 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.
I also do some of the stuff that people are less understanding about, such as having something in my mouth a lot of the time (sucking on things reduces my anxiety and helps me concentrate), humming and random singing, making noises with hands and fingers, wrapping myself tightly in my quilt, piling pillows on top of myself. I also ignore “age appropriateness” when at home, so can go from discussing politics or science or other “grown up” topics to talking in very simplified language about wanting penguins or jelly within seconds. I also play with my wooden blocks, and can spend hours just looking at my colour changing lights or sparkly things. One of the things I want is a sensory room or area with soft flooring and nice lighting and reflective sparkly things where I can spend time just to be myself and not have to worry about things like bills or food shopping or anything else that is difficult for my brain. I was originally going to use the space behind the top of the stairs in our flat (maisonette), but since I can’t walk or manage stairs now and we’ll be moving, it’s been put on hold until we move so I can figure it out when there.
Giving up after about half an hour of trying to think of one.
