Benefits and concessions for acquired disability

Following life-changing injuries people’s financial circumstances can change. Some people we interviewed were financially secure because they had private health insurance or compensation payments for their injuries (see ‘Insurance and compensation when injuryed in an accident‘). But for others who were unable to return to work and living on benefits, a reduced income meant they never felt financially secure. Some related this to the cost of living in London.

For Kenneth nothing is secure anymore and focusing on the problems you have in order to claim…

Age at interview 52

Gender Male

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I don’t think anything’s secure any more. I think, you know, we’re in unchartered waters so to speak. Anything could happen.

And do you just get DLA or are there any other types of benefits, like employment support or housing benefit? Any of those apply to you?

No it’s just the DLA really. Disability Living Allowance. I’ll check for you.

Okay.

Yes, DLA. I’m never quite sure. They keep changing the names of things as well. I must admit, you know, it’s all a bit dreary having to focus on all that stuff all the time.
Well you know, and having to sort of prove to people that you’re not that well, or you’ve had problems or you’ve got issues or whatever. You sort of could do without that – hardly cheerful stuff. You just know that every time you go to one of those things it’s going to bleak-ish. it’s not going to be pleasant. No, you know, things are changing so fast, that well you just have to accept that. You know, we’re all in this together. So well, I suppose we are.

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Some people claimed benefits, including Disability Living Allowance (DLA, now being replaced by the Personal Independence Payment PIP), Employment and Support Allowance (ESA), Housing Benefit and Carer’s Allowance. Some received Direct Payments which enabled them to buy in support and care, while others had council organised care. Grants are also available to make adaptations in the home (although these are often means tested), and people are entitled to wheelchair vouchers, which go towards the costs of new wheelchairs. People could also be entitled to a reduction in Council Tax, Blue Badges to allow them to park in disabled bays and other transport concessions, such as Freedom Passes and taxi card schemes, which give free or reduced price travel across London.
DLA/PIP are not means tested benefits and are awarded at different levels depending on the impact of injury on people’s lives. The nationwide roll-out of PIP is due to be completed by 2018 and applies to those aged 16-64. Currently, the mobility component of DLA can be used to lease or buy cars (with adaptations if necessary) through Motability and these cars are exempt from VAT and car tax. In London this also means exemption from the congestion charge. The Motability Scheme will work with PIP in the same way as it does DLA (for more information see our ‘practical matters resources‘).

The mobility component of Rob’s DLA pays for his car and his partner drives him around.

Age at interview 24

Gender Male

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Yeah, I’m on mobility benefits. So at the moment my car is paid for on the Motability scheme. So I don’t get mobility benefits anymore, which was like a certain amount of money that I was given to get around for transport, sort of like for cabs and train fares and all stuff like that. And I don’t get that any more. What they’ve done instead is they’ve given me a car and basically Em can use that and drive me about and, and do the stuff I need, basically to get me about and yeah, it’s so much easier. And you get, you get like a new car for three years. And they take care of the insurance, and they take care of like the tax and, oh what else and basically paying for the running of the car. All I’ve got to pay for basically petrol and yeah, it’s so handy. It just gives me my freedom again. Really, really handy for getting about.

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ESA (formerly Incapacity Benefit) provides financial support for disabled people who can prove they are unable to work. Access to Work is another employment-related benefit, which supports people to work in their current jobs by providing equipment or support staff.

Bryan has a support worker through Access to Work.

Age at interview 36

Gender Male

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It happens through access to work. It happens through the Department of Employment. I get a support worker for fifteen hours a week to help me with the visual aspect of my job. So to help me post letters, format documents, get me from A to B if I’m going to external meetings. it’s essentially to help me with anything I need assistance with because of my visual impairment. And now a little bit because of my hearing impairment, although I don’t tend to use my support workers for that so much. But I will sometimes sort of say to them, Can we just go into this corner that’s a bit quieter, just to talk about something because I’m having difficulty concentrating That’s the other thing, I would say my concentration spans is really, really poor and I think that’s partly because of the two head injuries, you know.

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Armed Forces Independence Payment – AFIP is an alternative benefit to PIP for service personnel and veterans who have been seriously injured during military service since April 2005. AFIP was introduced on the 8th April 2013 and none of the people we interviewed had received this benefit.

Claiming benefits

People were often unsure whether they were eligible to claim benefits after injury. They also did not know what benefits were available. This uncertainty was worrying because people were unable to return to work and some had financial commitments, like mortgages. Jack described feeling reluctant to class himself as disabled but, at the same time, felt he wasn’t getting the benefits he was entitled to. Other people also described wanting to work but currently being unable to. As Daniel said, ‘I don’t like just sitting there and getting money for nothing. I can’t wait to go back to work and do my stuff’.

She says it is difficult to know what benefits her husband is entitled to after his traumatic…

Gender Female

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And how do you find out what benefits exist. Who tells you that?

Nobody. You have to find that out for yourself. Because they’re not very forthcoming in telling you exactly what benefits you are allowed, you know. Some people have been paying like full rent and didn’t realise they could go to the Council Offices and ask somebody there and get a rent rebate, you know. Some people are just…Unless you actually go yourself and ask, what am I entitled to? Am I entitled to Council Tax benefit? Am I entitled to a rent rebate? Things like that. Unless you ask yourself nobody comes forward with the information definitely, yeah.

And so how do you go about finding what you’re eligible for?

Basically you have to go there. You have to ask them yourself. You have to literally say to them, What am I eligible for? And literally, you know, you have to, you have to say to them, Am I eligible for rent rebate? Am I eligible for this? Are there any other benefits that I can get? So yeah.

So, you sort of have to be informed before you go to get information?

Yeah. Exactly so

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Information about benefits usually came from staff in rehabilitation hospitals, charities and from talking to other people who had experienced a life-changing injury. Other survivors were an important source of information and younger people seemed to be more informed about benefits than older people. People got help applying for benefits from family, advocates, staff or volunteers in rehabilitation hospitals, council specialist advisors and charities. Help is also available from the Citizens Advice Bureau.

Nick found out about benefits from a volunteer at the limb fitting centre who helped him to fill…

Age at interview 68

Gender Male

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How did you find out you were eligible in the first place for that?

That’s a good question, Anne-Marie. I had no idea about this. I honestly didn’t. I’ve never ever claimed anything in my life, honestly ever. Ever. Apart from my pension, I get a State Pension. And I was sitting in the hall of the limb fitting centre and this woman came up to me with a whole bunch of forms and she said, I’ve come to help you claim your benefit And I said, Have you And she said, Yeah So that was it. Otherwise, I probably wouldn’t have found out about it. This was about two months after the operation. But it was the first I knew about it, it really was.

And so how did you go about applying for it?

Well she filled this form in for me. She said she’d fill in the form; I just signed the form at the end of it. Sent it in and the next thing I knew I was getting £47 a week. And then I filled in another form about a year ago, where you had to tell them what your progress is and I probably should have been more pessimistic about myself, which is probably why they stopped it, but anyway.

What kind of things did they ask you about?

I haven’t got the form here, but it says in big letters, You must be honest about any changes to your condition. When it first happened I was in a wheelchair. I couldn’t do anything, honestly, I really couldn’t. Could I cook for myself? No. So they ask you, Can you cook? Can you clean? Can you go shopping? Can you make a bed?’ Well all those things I know I put yes to. Yes, I know can do all these things. Whereas previously the woman had probably put, No, you can’t do these things. So the lady who filled this form in, I later learned she was a volunteer and I have also later learnt that she has now given that up, so I don’t know what people do now. Well I’m not sure, is it the hospital’s job to tell you about your benefits? Not really, I wouldn’t have thought. I don’t know whose job it is.

It seems to be people don’t know that they’re entitled to anything and what they are entitled to.

I didn’t know. Having said that, I mean I just didn’t know but I must say as time went on I’d be talking to people in the gym and there’s a thing called the people’s transport lounge where you sit around for hours after gym waiting for an ambulance to bring us home. And it began to dawn on me everybody else was pretty well alert to benefits actually. I mean there’s much more alertness of benefits than we think. People like me at my age probably it’s a matter of pride. I don’t want any help. I’ve never had benefits. But I think there’s a much more sensible attitude amongst younger people. They are more aware that they may be entitled to claim something. So I think there’s more awareness out there. I really do actually.

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The DLA application process was not easy. People said the claim forms were long and included complicated questions. Some questions seemed to be repeated, but worded in different ways, which made Jack think the forms are ‘designed to catch you out’. Aiden said it was like having to ‘jump through hoops’. Jack also felt that listing all the things he couldn’t do was quite an ordeal. Focusing on the negatives was depressing and people described feeling frustrated by the process and angry that they needed to provide so much detail. At the time of interviews no one we interviewed was yet claiming the Personal Independence Payment PIP but many were aware of the changes.

Bill applied for benefits when he was in hospital, but didn’t get them until after his discharge…

Age at interview 57

Gender Male

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And so what are you eligible for and how did you go about getting them?

Bill:At the time of my accident I was entitled to incapacity benefit and DLA. DLA, Disability Living Allowance. It was quite easy to get whilst in the hospital. Although you’re not entitled to it in the hospital, but you can apply for it and then when you go out, you then get paid it. But the way that it works or it did then, is that they stop, they only give you it say for a year, and actually they stopped it after. Because they send out these packs again, and you have to apply for it again.

So you apply for it, bearing in mind this is a legal process, so be careful you’ve got evidence of everything and that means doctors letters and your medical notes and whatever. You’ve got evidence of what you are saying. They won’t just give it to you but you’ve got to prove that you’re needing it. And as long as you do it in a thoughtful manner, and open manner, then you’ll get it because they’ve got a legal obligation to give it to you as long as you’ve proven your case. And where most people fall down on, on these applications is that they don’t understand it’s a legal process, and they don’t understand that they have to provide sufficient evidence to obtain it. So if they don’t do that they’re not going to get it.

Catherine:You can go to the Citizens Advice Bureau and get some help for that. The Carers Centre.

Bill:Yes, but they’re only as good as the person that’s doing it for you. You know, just think through the process. If you have to write down something, be able to prove it, and that might just be, you know, a letter from your wife. It might be a doctor’s letter. It might be someone else that you know to confirm what you’re saying. But prove it, in written form and always keep copies of everything. Of course the DLA’s now changing to PIP Personal Independence Plans. I’m not really sure how that’s all going to work. That’s a different aspect of benefits now.

What I would say is, is be careful that you don’t underestimate the potential of your psychological and mental problems. Because a lot of people don’t want to mention it. And you know, to my mind, mental illness is at the same place that racism and disability discrimination was twenty or thirty years ago. Right. Mental illness is something that is real and why shouldn’t you talk about it and just be open about it.

Catherine:It can be more debilitating than physical.

Bill:The mental, the mental trauma is, it’s a significant part of disability. Very significant. And it doesn’t help that the side effects of the drugs as well. So just be careful how you evidence things I would say to people.

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People have to be assessed for benefits now because the system has been taken advantage of.

Age at interview 44

Gender Male

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How do you feel about the fact that you know, you would be reassessed?

I think it’st’s obvious having, you know, looked at things over the years and years, the system has ended up in this position it’s in now, because unfortunately people took advantage of it, and, you know, so there’s always been this, you know, to be able to claim any sort of sick pay as such you have to have your doctor’s certificates and your hospital certificates and, you know, whatever. But because unfortunately people have taken advantage and have been caught taking advantage, you know, just sending in a sick note every now and then, now under the present system isn’t just okay, you have to, you know, go and see them and say, Look, this is the situation. This is my physical ability at the moment You know, andit’s the thing I was having a talk to the woman on the phone the other say about, Well I’ve got a certificate from a hospital consultant saying I should not work. Why have I got to come for an assessment And she was saying well it’s just a procedure of the system that you have to, you know, one of their independent physical assessors has to see you, assess you, discuss what you can and can’t do and then they make their report back to the Department of Work and Pensions of is it still suitable for, you know, what benefits this, that particular person should be receiving, or is it, you know, is appropriate for them to be receiving.

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When their difficulties were permanent, people were sometimes awarded DLA without a reassessment date. Others were reassessed at different times to see if they were still eligible. People who recovered from serious injury gradually had their benefits reduced on reassessment, as they regained the ability to do some tasks again. They described feeling pleased to regain some independence. It is possible to appeal against a decision about benefits.

Louise thinks she can be reassessed any time. Her first application for DLA was unsuccessful, but…

Age at interview 31

Gender Female

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And did you have any assessments or anything like that?

Yeah, I had an assessment which I failed. I think they fail everyone. I don’t think it really matters like how disabled you are or whatever; they just don’t want to give anyone benefits. But you appeal and while you appeal you still get benefits and then they do the reassessment and then once they do the reassessment they agreed straight away that I should have been getting benefits.

And what was the reason for failing you?

I was only like three marks off what I needed. They ticked that I had full mobility in my legs and knees, which I clearly didn’t have, and I still don’t now, so
Yes, and so do you still get that benefit now, the DLA?

Yes.

And do they re-assess you from time-time?

Yes.

And how often does that happen?

I think whenever they want to. I think so. I don’t know. I mean it’s the first time I’ve been on it.

Right. So you haven’t yet been assessed or you haven’t yet been reassessed until you started to receive payment from them?

I’ve had two. I failed the first one and then they did it again. And then I’m probably due another one.

How does that feel for you? That you are going to be constantly reassessed on this benefit.

Oh I don’t really mind. I mean they have to do these sorts of things. don’t they? it’s just that, I don’t know, I feel bad for people that are having a lot of trouble with it because you have to really like, I don’t know, it’s difficult. I don’t think the system is very good, but there’s obviously a lack of funds so they have to really be tight about it. But it doesn’t seem to be that fair. I mean I was failed on things I clearly couldn’t do like bending my knees and stuff. I couldn’t get down, couldn’t crouch down, couldn’t bend down.

And in the assessment what did it actually involve?

Not a lot really. I mean they sort of ask you to pick a few things up. Sit down. Talk about this, that, show them my burns, show them some paperwork. Yeah, they ask for you to do very simple things.

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Jack has had two applications for DLA rejected but is determined to fight for it this time.

Gender Male

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I feel cheated because I’m not getting the benefits I think I deserve, but reluctant to class myself as disabled. I don’t know. It’s weird. It’s in my grey area at the moment I feel. I’ve applied twice and rejected twice. I’m going to apply a third time, but I’m going to appeal it and fight for it this time. I didn’t really fight for it. It’s such an ordeal applying for that. It’s quite traumatic listing everything you can’t do. It’s not something I want to do. I don’t like doing it, so I didn’t – well I did twice and I got rejected twice. In the first year after the accident I got given a blue badge by my council. I didn’t get the Disability Living Allowance, but my council gave me a blue badge because you can apply for one with the council as well. Otherwise you get one automatically being on higher rate. So I got one then in September 2011 I had to reapply for that. I’d applied for DLA – didn’t get it. Then my blue badge came up for expiration, so I had to reapply again and didn’t get that either. So as it stands the only thing I have is the disabled freedom pass – a bus pass and train pass, that’s it. So I’m going to fight for that like as of 1st September I won’t be working full-time so I’ll have more time to deal with that. I didn’t really have the time. Then I didn’t go through the ordeal of doing that so I’ll have more mental strength to do it now and the time to do it, so I’ll deal with that starting next week.

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Some people felt that DLA was primarily there for people with physical impairments and was difficult for people with brain injury to get. After brain injury it can be hard for people to recognise what they find difficult. This could be because of the effects of injury, but also because people want to be better again and focus less on their limitations and more on what they can do. But it is important that when filling in benefit claim forms people think about things they can’t do.

Barrie thinks DLA focuses more on physical ability rather than other problems caused by brain…

Age at interview 53

Gender Male

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Right so in terms of the whole process of finding what benefits you are eligible to receive and applying for them, was there anything with that was difficult for you to do?

I think over, with this DLA, I didn’t actually apply for DLA, but you tend to over, I don’t know, I think overcompensate, is probably not the word, is it? You tend to like over-emphasise what you think you can do, you think you know
Okay.

You know, what I mean. I can do this. I can do that you know, you’re over-stressing the things you think you can do rather than the reality of what you can and cannot do. So you sort of you’re not answering the questions that they want, they want to actually how they want to be answered basically. Does that make sense?

You think because you want to focus on what you can do, but they want you to focus on the negatives?

You’re overly positive. It more focuses on the positives.

Yeah.

Whether they’re true or not. You’re more focused on the positive.

Ok. And do you think it should have been you that was responsible for getting those things and answering those questions?

Not really. I think a lot of the stuff come from the psychologist on the [specialist team working in physical and neuro disability], because she said, you tend to like – not me – but the general thing is that you are trying to sort, I can do this, I can do that blah, blah, blah. She said, In a way you’re better to get advocates to do it for you I thin, you know.

Okay.

To actually tell you how to apply for it. You’re actually I think, they want you, they want you to apply in a certain way. But you tend to apply in the way you think’s okay which might well be completely wrong. Do you know what I mean?

Yes. And they of course want to know what your problems are?

That’s it yes.

Are they interested in knowing what you can do in a way? Is it all sort of negative focused?

Well the Incapacity Benefit was fine. Because basically you’ve got, I’ve read enough medical record saying, you’re not doing this just for a scam. it’s actually true. I’ve got loads of GP’s sick notes, blah, blah for whatever is for. You’ve got depression, you’ve got brain injury, blah, blah, blah, blah. That was all fine. The one that was difficult was DLA because that is just structured more for say someone like my Mum who was nearly 90 and what actually mobility was, what this was, and no sort of recognition at all of injury you might have from a brain injury or anything like that. None at all. So you couldn’t really relate to it. It just a seemed to be a bit of an alien thing to me.

Is it maybe more focused on physical disability?

It is. That’s what it seemed to me. To me it seemed to be more physical. It seemed to me more based on like what a carer would know about what the person would need, rather than
The person.

The person itself would know.

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Simon wants brain injury to be recognised as profound as any other disability. He didn’t know…

Age at interview 46

Gender Male

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I didn’t know that I might even be entitled to some help some State benefit help. I didn’t know I was entitled to DLA, for instancewhich would have been helpful in the early years. But it’s all relative, and when you think what I’ve been getting paid it’s probably much more than any other head injured people have ever had, so I’m not going to complain about it. I just donate it to the country. But in those early years my GP could have told me that I’m entitled to DLA. My sister told me that I was entitled to the highest rate. When I was in the wheelchair, I should have been getting the highest rate for mobility and for, for care apparently which would have beenIt would have meant about six or seven thousand pounds tax free benefit each year. For those years for about seven years, which I didn’t get, I didn’t even know about.

Well because, like most people, I think disabled people are people that are in wheelchairs and people that are blind or have got some other sensory impairment. I know now that I have, I do have, I have a mental disability and it is as profound as any other disability. And it should be recognised. That’s why I claimed the DLA. it’s not that I need the extra £15 a week as such. Really it’s not. it’s immaterial.

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It can be difficult for people to manage their finances after a life-changing injury, especially after a brain injury which can cause problems with planning and understanding.

After his brain injury, Brian found it difficult to manage his money. He was initially helped by…

Age at interview 50

Gender Male

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And apart from the compensation, do you get any other financial benefits?

Oh I get my, I get my Incapacity, my DLA and all of that stuff. DLA, Incapacity, High Rate DLA, High Rate Incapacity, Income Support. And I get a care package.

Okay. Do you know how they’re organised?

Oh that’s done, what I’ve done is given Power of Attorney over my finances. it’s, you know, like the benefits and paying my rent. Because I used to be a bugger, a bugger, I would sort of like get me rent, get me money, and be gone.

So you thought it was as sensible option to let [Borough] control your finances?

Yeah, yeah.

And how did you go about organising that?

Oh well actually I was, my Dad used to manage it before that. He used to manage up until 1998 my Dad was controlling my finances then. Then I had my benefits myself then. I had control of my benefits and all that stuff. I used to be paying my bills. And my Dad’s very, very disciplined, disciplined, you know what I mean?

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Joe was living beyond his means after his brain injury. He is now living in sheltered housing for…

Age at interview 53

Gender Male

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I guess when you live in a place like this, you consider you’ve failed in life and failed miserably. SoI can just about live with this failure. Not have it talked about, you know wouldn’t wish this accident or some of the things that I have had to, or where I am presently in my life, I wouldn’t even wish it on my worst enemy. That is just basicallybut that’s just me really.

And you know that you said you came to live here because in your previous place you were living beyond your means?

Yes.

Do you think your brain injury had anything to do with you living beyond your means?

Yeah it did, because I kept thinking that I’m going to be able to take care of things, but I wasn’t able to take care of things. I was living, I was living a lie really, you know. Hm. And I thought I don’t want to live that way no more, soI was like caught between a rock and a hard place. Because if I just walked away it would be said that I made myself intentionally homeless, so I had to wait andor me to be re-housed bythe powers that be. So now I’m because I stayed there, I have to, and my benefits have been deducted to pay off the rent arrears or what have you, and like I say, you know, I really had to depend on people who knew like [name] and [name] to really steer me in the right path, make things happen. Otherwise I could have been in deeper crap.

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People expressed concern about current cuts in welfare provision and proposed changes in the future. Disability Living Allowance (DLA) is being replaced by a Personal Independence Payment (PIP). This change applies to everyone aged 16-64 including those who had been given a lifetime award of DLA. Some people were unsure and worried about how this will affect them.

The criteria for Aiden’s benefits have changed and he is worried about what he will get in the…

Age at interview 25

Gender Male

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Since I got laid off from my job I get ESA and DLA. I don’t like having to jump through hoops to get them; I have already successfully appealed a decision to stop my ESA and I am currently contesting a second decision to stop my ESA, however I’m not confident of winning another appeal as the government has changed the ESA criteria since my previous appeal meaning I no longer get awarded the “points” I was entitled to previously. I’m disillusioned with the benefits system because my condition has not changed; the government has just moved the goalposts in order to achieve their political aims. I’m scared that I will no longer be entitled to DLA next year after they change the system and reassess everybody, which will leave me on the same money as a fully able bodied person out of work (as that’s what I will count as if I lose my ESA and DLA). I have never received any careers advice specific tailored to disabled people, let alone people with an injury like mine.

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