Tuesday, 26 November 2013

Benefit claimant =/= scrounger

There seems to be a constant campaign to showcase the tiny minority of cases of disability benefit fraud to give the general public the impression that most of the money for disability benefits is spent on undeserving scroungers.

The able bodied often forget the importance of having a safety net to look after the sick and disabled during their time of need and some instead see the money as a drain on resources, funding golfing membership or exotic holidays for wealthy people fiddling the system.

The reality is so different from what the government and media seem all too keen to portray.

Disability benefits such as DLA, or it's replacement PIP, are to enable disabled people to live with an adequate quality of life. They aim to pay for the difference in cost of living with a disability. They often enable people to *stay in work*. Yes, it's not true that disabled people just sit at home collecting hand-outs. I'd be surprised if there are many people out there with any sort of disability/health condition, forced to be at home through ill health who wouldn't work if they could, because working helps maintain a sense of identity and you feel more 'useful'; both of which can be more challenging as an ill/disabled person. Obviously, there are some disabled people able to work but unable to get a job- often because ill people aren't employers' first choice, for fairly obvious reasons, but people with disabilities can be a real asset.

Disability benefits have very low levels of fraud, it just makes a good story, it would seem, when someone has managed to fraudulently claim. The process is long and you are reviewed either by an independent healthcare professional (along with evidence from your healthcare team) or rarely on evidence from your own healthcare team alone if this clearly demonstrates the level of benefit to which you are entitled.

People don't claim disability benefits for fun, it's an arduous (and potentially upsetting) process. They claim them because they are entitled to them and they help to maintain or improve their quality of life. Disability benefits don't cure the person's disability or make them feel better, but they can relieve the financial pressure that can be an added stress of living with ill health/disability.

I think sometimes healthy, able-bodied people forget that this is relevant to each and every one of them. Just because you've got this far without a disability doesn't mean you won't ever be disabled. When I was healthy at the age of 17 I would never have dreamt I would be using a mobility scooter every time I leave the house at the age of 21, it would have seemed completely impossible, but these things happen. No-one is immune to disability. I think it's important that people remember that this could be directly relevant to them or a family member or a friend in years to come; this is an important system to look after the most vulnerable members of society.

Part of the reason DLA is being replaced by PIP is to reduce the number of people receiving the benefit. Do I agree that scarce resources need to be focused on those most in need? Of course I do. But do I see a problem with suggesting in any way that the change is to reduce fraudulent claims? Yes, because the amount the budget is being cut by (20%) greatly exceeds figures showing levels of fraudulent claims (less than 0.5%). If they're taking benefits away only from people with very 'mild' disabilities who could cope without the benefit, then I wouldn't *necessarily* have a problem with that on principle, but I very much doubt that is the case. Withdrawing benefits from people who are reliant on them could be catastrophic. There have been multiple cases of people committing suicide after having disability benefits wrongly withdrawn- this isn't a trivial matter.

Some people will probably have been on higher rate mobility DLA for years, and will be using the motability scheme, which allows them to be independent and have freedom through provision of a car or electric wheelchair/scooter in return for their allowance; some of these people may be refused enhanced rate mobility PIP and could end up without the transport on which they rely, particularly if they require adaptations. Hopefully this won't affect too many people and motability are thankfully offering support in the transition period, but that's not going to be much of a comfort to those who are affected, who may well have to go through lengthy, stressful appeals processes that may worsen their condition if they have a chronic illness.

I'm looking into disability benefits for the first time, and I was actually reticent to mention this on my blog, because I don't want to be judged for making an application. But then I realised that the idea that I would be judged for attempting to claim benefits to which I am entitled is ludicrous. That doesn't mean it won't happen, but I just think it's important to speak out about the real role of these benefits. They're not to line the pockets of lazy people, they're to give disabled people a helping hand to help them to remain part of society and to live without being solely reliant on the good-will of others which can be degrading and unreliable. I have initiated a claim for PIP because my ability to walk is now severely limited, and there will be days I cannot use my mobility scooter over winter because of safety, so I need the benefit to allow me to remain mobile during winter, so that I don't end up housebound and missing parts of my university course. It's to help me to maintain my independence. Filling in the 40 page PIP form was difficult, it's not something I ever imagined I would be doing at 21 years of age, but I am now relaxing in the knowledge that I have been completely honest about my abilities/difficulties on the form, so it's just a case of waiting to hear back, probably with an assessment appointment.

I used to see DLA as though the government was paying you compensation for being disabled, which I found frankly offensive, but then over time it became clear to me that not having your legs as a form of transport actually causes significant expense. I had to buy a mobility scooter (getting appropriate mobility equipment on the NHS would have been an incredibly lengthy and almost certainly impossible process), which was far from cheap, and I feel I have no choice but to regularly use taxis, because I feel too vulnerable to be out alone on my scooter if I don't know exactly where I'm going. Taxis are also sometimes necessary to save energy on bad days, because a lot of disabled people are also ill. I'm also starting to struggle to look after myself so you start noticing possible future expenses and thinking about things that might help. Many ill and/or disabled people require help with multiple tasks; there can be a need for help with eating or washing or dressing or communication or finances etc, or a combination of multiple things. People may need to buy aids to help them be independent with these things, or may need to buy things to avoid the need for certain tasks, or may have to pay to receive help from others. All these things cost money. People with illnesses are often not able to take on additional work to pay for the additional expenses. Some are reliant entirely on benefits and rely on these disability benefits to pay for these additional expenses. Just because someone is disabled, it doesn't mean they deserve a lesser quality of life. Give them enough money to be able to let them make their own decisions about how they live life and work around the barriers to independent living that their disability creates- they deserve autonomy.

It concerns me that there's such encouragement to report suspected 'benefits cheats' because it puts claimants at risk of being wrongly accused, which must be incredibly stressful. Clearly if someone is obviously misusing the system it's a good thing to report them and get the benefits withdrawn, ensuring the money is available to go to the right people, but people can be quick to jump to the wrong conclusions. A lot of illnesses and disabilities are invisible and variable. Someone very unwell can look completely well, particularly on a good day when they are out the house (which they probably are if you're seeing them). You might see them walking around doing things looking completely healthy, but you can't see their pain and other symptoms, you don't know whether they later have payback symptoms and collapse exhausted afterwards and you don't know whether they had to rest in advance to be that well. A healthy able-bodied person's understanding of the system on which people are judged is also probably limited, so just because somebody is able to do specific things, it doesn't mean they're able to physically do or cope with doing (mental illness causes disability too) the tasks on which they are judged. I'm not saying don't report people abusing the system, I'm just encouraging people reading this to think twice about the 'evidence' they have that someone is lying before accusing them.

The current welfare reforms are not in the interests of disabled people, and ill and disabled people are frankly bearing more than their fair share of budget cuts. Many of them are not well enough to voice their concerns but people's health could be at risk. It will put more stress on charities and there will be more demand for other government-funded resources. That's why I have signed the WOW Petition (War On Welfare) at wowpetition.com and would encourage all my readers to do so too (if you're in the UK and reading before 12/12/13!). It will take literally 2 minutes of your time to fill in the form and click on the link in an email sent to you, but would mean so much to a huge community of vulnerable people. We need the government to realise that the country cares about the sick and disabled, which will hopefully make them rethink some of their current policies.

Thank you for reading, and I sincerely hope if you're currently well enough that all this seems slightly irrelevant to you that it stays that way, and I hope that if you're directly affected things work out ok for you :)


  1. I wish more people would read something like this i have cfs/m.e. Im 22 never thought I'd have to claim I thought I'd be starting my career. it can and does happen when you least expect it. I'm judged all the time because of such stupid thing because I can go to the shops one day I can work. I'm fit and I'm healthy apparently and I'm wrong for claiming but they don't see the other side. to feel so judged from the systems that are there to support you when it's not your fault nobody asks for this. it's even worse when its your friends. I'm scared for my future the last thing people with illness need is to be scared of how they are going to survive without the stability of money. I am made to feel like a horrible person spending money I havnt worked for but I didn't choose this I would swap cfs for work anyday so glad you said all this you really hit the nail on the head

    1. So sorry for the slow reply! Thanks for your comment and I'm SO sorry you're going through this! You shouldn't feel bad- nobody would choose to swap and suffer from CFS (certainly if they knew what it was like!!!) and we'd love to be well enough to work! Gentle hugs!

  2. Sorry for the extra extra late reply, I'm in a much happier place now lol and I've come to terms with the fact some people will never understand haha just grinds my gears when judgement gets passed to people on benefits. It makes me giggle people seem to think we're rolling in money, I wish! :)

  3. I found your blog today and really like it your talking my language!. I too get more annoyed with the media and how they portray people on benefits. It's not fair!. But I totally agree with you on the fact that if people saw how people needed benefits like us ( I am a migraine sufferer and have migraine with aura) they'd think twice. It is harder to claim and I find it harder to ber taken seriously thanks for thee post Jess

  4. So very depressed. Went for PIP assessment Monday. It was awful. Asked if I had qualifications from school??? Yes but don't remember, can't even remember all the questions she asked. Wish I was dead and wish I hadn't gone.

    1. I'm so sorry to hear you had such a horrendous experience 😔 I truly hope you get the result you deserve so that you don't have to fight the system again for a while.. Don't let the system put you off getting the help you need.. It really is so stressful, distressing and demoralising, but hang on in there- hopefully you'll get the award you deserve and it will be really helpful..
      Take care 💕 Jess x