Tuesday 12 October 2010

The damaging effects of how people perceive disability benefits

I've been thinking about the widespread perception that getting disability benefits is easy - and the damage this causes.

First, some background. I don't know how many people believe what they read in papers like The Sun, whose "shop a scrounger" campaign complains about people who "claim to be sick when they are perfectly capable of work", or the Daily Mail, which is happy to conclude that anyone who fails the work capability assessment is a scrounger.

But read the comments on any article covering disability issues, such as this one on Guardian Comment is Free, and you realise very quickly that two very wrong, and very common, viewpoints persist among the general public.

1. People believe that it's really easy to get disability benefits. Hence comments like this one: "So we should just accept a total stranger's word that they're disabled enough?" The writer receives DLA, which is not easy to access and has the lowest fraud rate of any benefit. It's not their word, but that of the DWP, which has assessed their eligibility.

2. People believe that assessments and tests - such as the Work Capability Assessment (WCA) for Employment and Support Allowance (ESA) - are fair. They think the few cases that make the news are anomalous and most people get treated just fine. Hence comments like this one: "No-one begrudges disabled people the help they need. If the new work capability assessment wrongly reduces the benefits of the genuinely disabled, that is very regrettable. But it will identify people who are not genuinely disabled who should not be allowed to hide behind those that are."

Anyone with any knowledge of the Work Capability Assessment will know it is very difficult for a lot of genuinely disabled people to pass. But the people who believe these assessments are fair no doubt also believe they are made on the basis of all the evidence available, from an informed viewpoint - rather than being a box-ticking exercise.

Yet we hear about people being assessed by doctors with completely different specialisms - or in some cases by nurses or midwives, who aren't qualified to assess them. And we hear about, say, the case of the person whose assessment said they could move their arms when in fact the only movement was from uncontrolled tremors. Or the man dying of a progressive brain tumour forced to make a four-hour round trip to an ATOS assessment. Try telling that to anyone with no experience of disability and they'll suppose it's made up, or tell you a story about their friend's aunt's dog's cousin who was once signed off sick when they weren't really ill.

Similarly, people assume that Disability Living Allowance (DLA) is not refused to those who need it. To take one example of many, Where's The Benefit's Louise Bolotin wrote this piece for the Observer a while ago when the DWP said she was more in need of her DLA than before - but decided to stop it anyway, meaning she had to go through the stress of an appeal.

When people hear about these supposedly far-fetched cases, they assume they're rare or made-up. They assume the system is fair and that the people who are in genuine need can access the help they need.

And because people think it's too easy to get disability benefits, they think it's fine to make the tests tougher and insist on reassessing DLA claimants in an attempt to cut the caseload because, hey, it's what's fair for the taxpayer, supposedly. Except that wasting taxpayers' money on needless extra assessments and appeals doesn't benefit anyone. Except possibly some lawyers.

And people think that the genuinely disabled have nothing to fear. So again, they think it's fine to make disability benefits harder to access, because they think anyone who does qualify will be able to get through whatever assessment is in place because, again, it's supposedly fair. And as long as the government keeps implying such benefits are handed out like sweets, nothing is going to change. People will keep on thinking, well, it's only right that they're properly checked out.

The government's constant attacks on disabled people are not fair. Like the constant propaganda about how we are scroungers who waste taxpayers' money, and the decision to impose arbitrary cuts on caseloads for disability benefits.

And the result of all this is that people who become disabled and genuinely need to make a claim for benefits such as ESA or DLA get the shock of their lives when they realise how hard it will be.

If you are one of society's more vulnerable members, you will have to fight for everything and wade through reams and reams of red tape. That is the experience that many of us have. And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing.

But so long as the myth persists that it's simple and easy to apply for disability benefits, people will believe that anyone who says it's not is making a fuss over nothing, or sticking up for so-called scroungers - and when people become eligible for these benefits and try to apply, they will continue to be absolutely gobsmacked when they find out how difficult it is.

What kind of a welfare system expects some of the most vulnerable people in society, including people with permanent disabilities, long-term health conditions and terminal illnesses, to master acres of bureaucracy? And what kind of a government claims that is fair? None of these questions are new - but we need to keep asking them.


  1. I am reading your blog from the USA as a recipient of Social Security Disability. The government here is threatening to take away my benefits even though I receive them due to brain damage from a brain aneurysm. This is a terrifying time for me and my daughter. People think that there is no way they will take your benefits. I know that it could happen far too easily. If it does, I am left to fight to get them back or try to find work I can do that will support us.

  2. Great post.

    I think it is partly psychological. People are in denial about how difficult it is because the idea that a car accident or encroachment of cancer or a traumatising event could overnight remove their ability to work, and *then* they could find themselves without any support, leading them to lose their means, their homes and possibly their relationships too, in short, everything, is just too scary for them to handle.

    It is mainly misinformation on the part of the Government and media, in cahoots as usual, but that's one reason I can think of as to why people seem so desperate to believe this rubbish.

    I have a lifetimes experience of dealing with mental health problems, in myself and my family and few friends, so I know it pays to be sensitive. But this drives me to say something I don't come out with very often... TOUGH. I don't give a toss, people, if you don't like the thought of possibly perhaps being abandoned by society hypothetically sometime in the future. People are suffering *now*. People are dying *now*. My patience with this nonsense is exhausted.

    It is, as is so rightly pointed out here, such a waste of taxpayers' money. And yet so many don't seem so concerned about that. All I can think is that it is as much cripple-kicking as anything, the same mentality that causes bystanders to laugh along with the playground bully out of sheer relief that, this time, they're not on the receiving end.

  3. Great piece of writing, and yes there are so many that don't get what they need. Personally my claim for DLA has been going on for nearly a year but the Government still say I have no mobility problems. Try telling people that I am not entitled to any help when I am going round Tescos in my wheelchair and you see the looks of amazement on their faces.

    The truth is that it is almost impossible to get DLA unless you are bedridden 100% of the time or at least that is my view of the system.

    PS wish me luck with my tribunal which should be early next year

  4. "None of these questions are new - but we need to keep asking them." We certainly do. DLA for my autistic child is due to be reviewed next year and I am already scared how much more information will be needed. These forms already contained about 30 pages...

  5. Certainly the staff who work for DWP, specifically PCS members, know how bad the system as and the mistreatment of the disabled. Great post - you have all of my support.

    PCS Rep, South Yorkshire

  6. Jails are full of the mentally ill because governments, rather than face the difficulties involved in actually addressing their problems and finding solutions, finds it easier to brand them as criminals and jail them. Similarly it's a lot easier to brand the disabled as scroungers and ignore their very real needs than it is to accept their problems and address them in any meaningful way. So long as we keep on electing incompetent, dishonest and self-serving governments, expect the situation to get worse, not better.

  7. Thank you, Anonymous PCS Rep. I feel sorry for the decent people working for the DWP and JobCentre (mainly to be found in Incapacity Benefit in my experience). I certainly felt sorry for the poor woman I spoke to last year who had to tell me there was no way of fast-tracking appeals for those in mental crisis when I told her I'd be dead by the end of the week. (Luckily I got my decision revision in the post a couple of days later or I wouldn't be here now.) She sounded really upset. I'm not surprised.

  8. I think it is sad that we still have to prove to the world that we are disabled, for those of us with obvious illnesses it is easy. Missing a body part? Check, got that box next... For the rest of us they make us do tests, see dozens of doctors and play their games.

    We do it because we have no real choice, the system has failed us, and if we don't play along it will continue to fail us.

    I'm also from the U.S. I'm lucky that my illness was cause/occurred while on active military service, but even then I still had to play the game of 20 questions every time I met a new doctor.

    My heart breaks every time I hear of a disabled person who has had their benefits threatened or challenged.

    It almost makes me want to go around yelling, you're healthy? PROVE IT! lift this 100 kg box! drag this box 60 meters and then come running back and tell me how many marbles were in the box.

    While going through this process to validate my need for disability, I met so many people who had also gone through a long and lengthy process to get to the point they were at.

    It's pretty much not worth the effort, I would much rather be healthy and get a much higher paying job than be stuck with the limitations imposted upon me by my disability...

  9. 'And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing.'

    That...pretty much sums me up nicely. I'm attempting to live on £343 a month right now as that's all I've managed to weasel out of the system. (low-rate care on DLA and the rest as housing benefit)

    I have Ehlers-Danlos Syndrome. I dislocate joints just by rolling over in bed. I cannot take care of myself, let alone work. I've been out of work for two years, and *should* have stopped long before that but my fear of the benefits system stopped me...and ended up causing permanent damage to my overworked joints.

    I have applied for ESA a total of three times now, had claims lost in the system, had them ignored for months at a time, managed to get a single medical assessment which I failed because all they did was ask me to move limbs in certain directions, which, when you have extra-flexible joints, really isn't a problem. I got my GP to contact them and complain and they awarded me ESA...for a total of two weeks, when they then informed me that I'd failed to send in medical certificates and would have to start the claim up from scratch.

    I've tried to get my DLA reassessed as higher but all that managed to do was get my payments stopped for a time. I can't live on what I'm getting at the moment but I can't afford to risk losing even that measly amount for the time it takes to reassess and appeal.

    I have spent the last two years crying every single day, struggling with money, not eating properly if at all, huddled in blankets in a freezing unheated house that's an absolute pigsty because I can't do any housework and can't afford to pay someone else to, and am so deep in debt just from paying bills as my housing benefit has a £265/month shortfall on rent that I don't think I'll ever be able to claw my way out of it.

    Just the thought of trying to deal with any more bureaucracy is enough to make me burst into tears now. I can't deal with it. But I can't afford to not deal with it.

  10. 'And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing"

    This is wha happened to me the first time I tried to claim.
    They refused me because they said I was still a student despite a letter from the uni saying I had suspended and was therefore no longer eligible to council tax. I was trying to appeal when I had a serious relapse and could barely even get out of bed.
    I couldn't cope with anything, even eating half the time, let alone dealing with all their bureaucracy.
    By the time I was well enough to start coping, they had closed my claim and wouldn't do anything about it.
    And on top of that, the woman on the other end of the phone had the nerve to assume that I was claiming because of stress when I told her I hadn't been well enough to cope with anything.

  11. Not that there is anything wrong with claiming because of stress! (Not to undermine what you have been through - just that stress can be debilitating and take years to recover from.)

  12. I worked in welfare rights advice for years and it wasn't uncommon for people new to claiming being utterly astounded about how little they were going to get and/or the hoops they would have to jump through. You got double points if you were also given the "I bet I'd get double that if I was... *insert your preferred minority group here*..." malarkey.

    It's sickening the way governments (the last one was just as bad) utilise sympathetic media to plant benefit fraud horror stories. Certain news networks do run with them with an obscene enthusiasm of course especially if there's an asylum seeker involved.

    On the other hand, if a family rich enough to afford two houses gets investigated for manipulating school admissions for their children that's presented as being the height of 'big brother state' yet it's routine for the DWP to use surveillance against social security claimants if they're being investigated.

  13. FNGN, I know exactly how you feel. I, too, have Ehlers-Danlos syndrome (hypermobility type) along with secondary fibromyalgia and bipolar disorder.

    I am lucky enough that the last time I was reassessed, just last January, I was finally granted higher-rate mobility and lowest-rate care indefinitely. My doctors all say I have the care needs for middle-rate, but I cannot put myself through the DLA process again before I'm pushed to - the whole thing makes me nothing short of suicidal every time. I'm 24, and I look healthy, but I have to get someone to come in and help me shower because I can't wash my own hair or manage other things without great difficulty - my shoulders dislocate every time I try. I have just been allowed onto the social services' reablement program, but after 6 weeks I will need to start paying for that, and since my DLA is nearly all spoken for, I do not know how I'll manage that...

  14. Thanks everyone for your comments - and I'm sorry to hear how true this has rung for some people. Good luck to those going through appeals and applications.

    Anonymous PCS rep, I would be very interested to correspond with you more privately (and absolutely off the record, I should add, seeing as I'm a journalist). Would you consider emailing me on annewollenberg@gmail.com? I'll explain why if/when I hear from you - which I hope I do.

  15. I am in one of the pilot areas. Received the warning letter yesterday. They will phone me before sending the ESA form. I'm not waiting until then. Already made a start on clearing the flat so they can't send the bailiffs in when housing benefit is inevitably withdrawn. Will email notice to housing association tomorrow night and be gone within the month. So much to do. Hope I'll be able to pay removals firm before benefits are cut off. Gone to the protection of my family. Pity those who have nowhere to go but oblivion, although that option is still open to me.

  16. Excellent post. I'm dreadiing my re assment for incapacity or ESA which I know is comming in the next year or so. I LOOK fine and my problems are mostly depression with M.E (oh joy not one but two illnessess that are hard to assess via a tick box, I've been refused for things like travel passes before as I'm not 'disabled in the way required by the scheme'). I've been off DLA for ages as my last application failed and I didn't have the time and energy to apply again or appeal as I was in Uni and the forms etc is pretty much a full time job.
    I dread being shoved off ESA and then refused jobseekers as I won't be available for work 40 hours per week (I'm barely coping with the odd bit of volunteer work I do atm as I suffered a mini burn out after my final year of uni). I am lucky I am able to live with my parents, there is no way I could afford to live if I wasn't being subsidised by them, though at 26 shouldn't I be able to live independently and not have to rely on the kindess of my parents? (who are now both retired and not exaclty rolling in it).
    But yup according to so many people I'm 'living it up' scrounging all becuase on some days I might look 'fine'. Sometimes it actually drives me to tears.

  17. This is a huge problem in the US. It's incredibly difficult to get approved for disability benefits, yet the myth persists that many people who get approved are malingerers. How that's possible I can't possibly imagine considering how difficult the application process can be. I am an attorney and I was intimidated.

  18. My dad has MS, he struggles on a daily basis enen something as simple as having a shower tires him out. to the outside world he looks fine all he has is a limp to them they dont know that the limp is because he cant feel his leg, thet dont see all the other things he struggles with. hes had ms since he was 17, up until 19 years ago he worked since he was 12 at one point he was working 80 hours a week until he got made redundent and the jobcentre said there were no jobs for him because he was unfit for work. it realy oins me that some people think that people who cant work are scroungers my dad would do anything to be able to work and i have to see people who are moaning about those on dla etc saying they get all this money and free cars and that disabled people dont deserve it yet those speaking this rubbish are working the minimum they can so they can get their tax credits. sorry for the rant it may not make sence or be relevant at all.

  19. so sad to read all the stories. I hear the UK paperwork and everything is brutal. US is, I think, not tons better. It's been a difficult process for me. I should hear in a few weeks whether I was approved by the judge at the hearing. If not I worry whether the appeals will be of any use. Many of my sister's doctors have not been helpful so she really doesn't have many useful chart notes (she is sick, too) - I worry more about her because she isn't able to change insurances to find better doctors without Medicare (pre-existing condition, bah); I ended up with a better insurance than her somehow. Our parents are subsidising us also. But it would be nice to get some financial help because their financial condition is deteriorating and their own retirement funds are at risk.

    It's well-known that there is not much Medicare/Medicaid fraud on the patient side in the US. The fraud which exists is corporate (e.g. clinics which submit bills for non-existant patients - sometimes the clinics themselves are non-existant... also any product which advertises on TV that you can get 'at little or no cost to you' because Medicare pays for it, it's likely that specific product is being reimbursed at a substantially higher rate than cost, unlike everything else which is typically reimbursed substantially lower than cost). I haven't read studies about UK and neighbors specifically but I assume there isn't much incidence of patient fraud there, either. I think that was said in the original article.