Intimate details: claiming Disability Living Allowance

In my professional life, I have filled in countless benefit claim forms for clients. I have helped people obtain Jobseekers Allowance, Employment and Support Allowance, Community Care Grants and Crisis Loans, simply by arguing their case on paper or over the phone more eloquently that they could do themselves. I became a whizz at it, but reassured clients that the forms were indeed as hard and lengthy as they felt, and that there was an art to spelling out their circumstances so that assessors would have everything they needed to know. This morning, almost an entire a year since I last worked, I made my way to my local disability resource centre so that someone I’d never met could help me fill in a form to claim Disability Living Allowance.

I’ve claimed Child Benefit and Tax Credits, but I haven’t claimed benefits for myself since I was last unemployed in 1994. Until recently, I was only dimly aware of Disability Living Allowance’s existence. I did know that it was something that you could claim whilst in work, because I knew a couple of colleagues who were in receipt of DLA. In general, though, I pretty much viewed it as something which only those with physical disabilities would be entitled to, and so up to the point at which I realised that my sick pay was about to run out, I did not look into the matter any more deeply. I was surprised when I discovered how many of my mental health service user friends receive DLA, and have been touched by the information and advice they have given me about how they had explained their various conditions on the form.

DLA is not well-publicised. Many people have never heard of it, while many more incorrectly assume that it’s a means tested benefit. And the claiming of it goes against all our social conditioning to play down our suffering. “Oh, you know, I’m really not too bad,” we say. “Mustn’t grumble, could be worse, can’t complain.” It also goes against any kind of positive thinking, all the counting of blessings and looking on bright sides and focusing on what we as sick and disabled people have going for us, rather than what we can’t do. You know, that stuff we do in order that we don’t slide away into a morass of grief and despair.

This morning, I had to spell out to my form filler all the ways in which my condition disables me. Making the appointment was a good call; I couldn’t have tackled that form alone. Despite all the forms I have filled in for others, I needed the help of the centre worker to coax from me how just bad things can be and calmly summarise them so that they fit neatly in a free text box. Because you see, I don’t like to talk about the things I am ashamed of about my condition. I don’t advertise the fact that I don’t wash when I’m acutely depressed. After years as a caseworker, it’s humiliating to have a panic attack because I need to make a simple phone call. It’s infantilising when my partner has to take all the meds away and dole them out to me like a nurse on a psychiatric ward, or stop me from going out by myself in case I don’t come back. Claiming requires spelling out all the little degradations that make me feel like I am no longer a functional adult, and all the ways in which my illness changes the dynamic in my relationship from equal partners, to the supervisor and the supervised, carer and cared for.

That’s the real truth behind DLA. Not hoards of fakers making up or exaggerating disabilities in order to defraud the state of money, but massive under-claiming by people who are significantly sick or disabled but take the attitude that they are undeserving of financial help, don’t know that DLA exists, don’t want to make a fuss about the impact of their disability, or are too embarrassed have to go through the intimate details in order to be judged by an unseen audience of assessors. Working out by what margin DLA is under-claimed is tricky, because estimating how many people might be eligible but may not identify as “disabled” is a minefield. However, a 2007 DWP research report suggest one method of measuring take-up of the benefit which gives figures of 3.68 million people in total who would be eligible for DLA, of whom 2.8 million of them receive the benefit and 0.88 million (24% of the eligible pool) do not. Under-claiming is known to be particularly pronounced for children and people over 65; a joint response to the Governments Welfare Reform Bill proposals by the Royal College of Psychiatrists and major mental health charities also expresses concern that people experiencing disability due to mental health are unlikely to consider themselves eligible to claim (if they are aware of DLA at all). If I am found eligible now, that means that I was actually eligible three months after becoming sick to the degree that I was incapacitated. In other words, that’s seven months when I could have claimed DLA, but didn’t think to do so because I was OK financially.

Now I have to wait 10-12 weeks to see if DLA is awarded to me. The Government’s own consultation on welfare reform states that 52% of DLA claims are disallowed (which probably explains why only 0.5% of successful claims are later found to be fraudulent), so I have to wait and see if I am in the fortunate 48%. Next week I have to claim contribution-cased Employment and Support Allowance so the start of the payments – should my claim be successful – pick up where the last vestiges of my occupational sick pay. Another day, another form. I can’t even begin to think about the Government’s proposed changes. I just don’t have the strength.


About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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29 Responses to Intimate details: claiming Disability Living Allowance

  1. mewlaw says:

    Well done Charlotte, I know personally how hard it is, after filling in the ESA medical form I was a quivering wreck. I had to fill this form out in stages with my hands starting to swell up after 5minutes of writing. However, it was the section on Mental Health that completely floored me. Having to explain my feelings of suicide and not wanting to be alive, my heart wrenching admittance that I feel I am failing as a human being, because day to day living is too difficult, having anxiety so badly that I couldn’t make simple decisions and not being able to face the simple trip to my local shop because I knew I would cry if anyone I knew spoke to me. Mental Illness is incapacitating and very difficult to explain vocally let alone on paper. So I suppose what I’m trying to say is you should be applauded for coping with the form. On a personal note, I could have done with help filling in this form, and I am still yet to receive the decision as to if the government think I am fit to work. If the decision goes the way that so many others I have heard of then I may well need some help. Other than the CAB do you have any other information you could give me to who I approach for help with the process. I think the term ” forewarned is forearmed” springs to mind.
    I hope the wretched process hasn’t left you feeling too drained and upset, although, giving intimate personal details of how badly you feel, would leave anyone who is ill , both mentally and physically a reality jolt. If this is the government’s intent then they certainly won in my case.
    Take care

  2. Hi Maria, I haven’t used them but a an advocate, particuarly one from a mental health charity so really understands the issues, might be something to try? Your local Mind Association or Rethink might be able to help, they will have handled masses of appeals and preparation for Work Capability Assessments. Thanks for your support, I did feel drained and exhausted when I came out, by this point in the evening I feel like a survivor! But hate having to think about what comes next. C x

    • mewlaw says:

      Thanks for that Charlotte. I will give my local Mind and Rethink a call, never thought about using them in that context. Never used them before, in fact. I suppose it is a denial thing with me!!

      • Charlotte says:

        Not necessarily denail, just – if you don’t need it, you don’t think of it, so sometimes when you come to need it someone has to point you in the right direction. A friend had to tell me about the disability rights centre I attended. Good luck with it! x

  3. marzillk says:

    My sister had to help to fill in the DLA form for her then-partner, after his serious head injury. She said it was extremely complex and one of the most difficult forms she had seen, and as an NHS frontline worker, she’s no stranger to complex forms. She said there was no way her head-injured partner, who was still in the very early stages of recovery from his traumatic brain injury, would have been able to fill it in without her help.

    There’s a whole other level of difficulty to claiming DLA that you discuss so eloquently in this post, and that is having to disclose such intimate, painful details of what life is like when you’re going through a bad patch. I know I would find that extraordinarily hard.

    I’m keeping my fingers crossed that you’re in the successful 48% (and surely that ratio suggests that something is a bit off – I can’t imagine that the majority of people applying for DLA are chancing their arm).

    K xxx

    • Thanks, my dear, it was a trying day and I actually had a panic attack on the way to the appointment – thankfully not too bad, but I was very dissociated, found crossing roads, etc, difficult and scary. At least I made sure to put all of this into the form! I’m not sure that half the people are trying it on, I think – and a number of DWP reports I’ve looked at today seem to indicate this – that many people who would actually be entitled fill them out in a way tat makes it impossible for assessors to award using the criteria set. So – not enough detail, not accompanied by supporting letters from clinicans, taking the “Oh, I’m mostly OK” approach rather than the, “Actually, sometimes I am severly incapacitated” route, etc etc. I’m going to post it tomorrow when Mr P has filled in his statement about the care he has to provide for me 😦 xxxxx

  4. Fi says:

    I downloaded a DLA form in Feb 2011. One year ago. Every day I say I’m going to fill it in but it’s still not done. It’s always in my thoughts and it scares the hell out of me. I don’t like asking people for help and I wouldn’t know who to ask anyway. (I live in Scotland). Christmas and New Year were cancelled for me as I had to fill in the ESA form and I was a nervous wreck when I finally finished it. It took me five hours to write a final version out. The relief I felt when I had finished was incredible but it was short-lived once I remembered this was only the first step. It had to be in for 5 Jan and I still haven’t heard anything. Every day I’m dreading the post in case I have to go to an assessment. Living this way is making me feel so much worse.

    • That’s just what I was thinking… that peversely, if I am not successful in my claim, my money worries and feeling judged “not really disabled” are likely to impact negatively on my mood and worsen my symptoms! I guess with a 10-12 week wait for results you may have a while to go yet 😦 Fingers crossed for you x

  5. Lisa Tee says:

    Thank you for sharing this. Well done for getting there and dealing with the panic attack. I wish you all the luck with the form. I filled it out on my own, acutely depressed and it took me ages with tears. Needless to say, I was very stoic so therefore was told I didn’t qualify but looking back if I’d had help doing it, I think I would have done.
    I wish you all the strength in the world against your fight with depression Purplepersusasion. I hope you emerge into the sunshine soon but if you don’t, that the darkness doesn’t swallow your light.

  6. showard76 says:

    I was turned down for the DLA as despite how well I can write about the BPD in my blogs I just cannot describe how it affects me in terms of the requirements on the form and because I am in crisis again I am not up to appealing the decision, I don’t have the strength to try and argue my case 😦

  7. Ann says:

    i can so relate. in the states we have a similar program, social security disability insurance, which is available to people who have been employed and thus have paid into the social security system (the system the gives a fixed income to people who retired). i am a social worker. i was so ashamed to be applying for SSDI and felt like my life was useless and so was I. i did manage to fill out the form myself, using all the social work/paper work skills i had to make it clear that it was “bad enough” without overstating the situation. i did go to the social security office at some point and spoke to a woman there. my feelings of shame came up and she just looked at me and said, you are entitled to this benefit, that’s what it’s there for. i was turned down the first time but accepted the second time. i was on disability for 18 mos and then slowly went back to work, volunteering, working part-time, and then full-time again, all at the same office.

    i am lucky to have basically been stabilized on medication (except when i go down the poop chute of suicidal depression and have to be hospitalized, which happened to me 2 years ago, seemingly out of the blue) and that i “only” have depression and don’t have to worry about mania.

    all this is just to say: you deserve this benefit, you wouldn’t have applied if you didn’t need it, and i hope very much that you get it. ann

  8. Charlotte says:

    Thanks for taking the time to add a comment, Ann, it helps to know that I am not the only one who has made an uncomfortable shift from “professional” to “client”. I am still employed in my own job, it’s just that it’s difficult after such a long time on sick leave to envision myself back in the role, being capable, confident, busy, etc. So good to hear you have made it back into work. The key thing with me is the magic word, “Stabilized” – it is a long and frustrating road to get to that point! Take care of yourself 🙂

  9. Ruby Tuesday says:

    I confess that I never really pondered what it must be like to sort of “switch roles” so profoundly: to go from the person who helped others wade through all of the steps involved in these kind of situations to the person who needs just that kind of assistance. I haven’t explored your blog enough yet to know where you live (I’m throwing a wild guess out of perhaps the U.K. or Canada), but I know about the disability process in the U.S., and it’s pretty awful.

    I wish you the very best, as people applying for assistance don’t generally do it on a whim, they really and truly need the help. And I want to thank you for this post particularly. Having the words of someone who knows about these processes from both sides makes you look at things in a new light.

  10. Hi,

    I’m really interested in this post. I was refused Employment & Support Allowance because I hadn’t paid enough NI contributions (can’t claim anything else, my partner earns a decent wage) and was looking up DLA after reading your blog. It seems to just be for people who need a carer or have mobility issues- so I don’t think I would be eligible with Bipolar would I? I don’t have either. Would be very grateful to hear from you. Thanks.


    • Well, Rachel, as you must know from reading my blog *I* have bipolar! And as you saw from this post I claimed DLA, and I was successful. I think you are under a lot of the same misapprehensions that I was before I took advice. Firstly, the mobility component does not just refer to physical difficulties in moving around. Anyone who struggles to access public transport due to anxiety or difficulties with timetables, or who can’t drive due to meds, has a mobility problem. In terms of the care component, obviously there is a great variation in need according to differing seriousness of symptoms even within the bipolar label. But the advice I recevied is that you have to get into the mindset of how bad you are *on your worst day*. I don’t refer to my partner as my “carer”, but when I am very unwell, that’s what he is. Here’s a list of some of the things I need him (or someone else) to do for me when I am unwell:
      – Wake me up if I am suffering hypersomnia or on very sedating meds
      – Remind me to take my meds and make sure I have the right doses
      – Remind me to eat, wash, etc either because I am so depressed it feels beyond me, or because I am too high and not interested in such boring details
      – Access the crisis team if things are unbearable
      – Deal with paperwork, finances, etc, which I find impossible on my own.
      And so forth. All these things come under the care component, and you do not have be “buying in” care to be entitled. Furthermore, DLA is not means-tested at all, because it recognises that having a disability incurs additional costs whether you are in work or not. So your partner’s earnings don’t come into it.
      What I would say is that if you were considering applying, you should definitely do what I did and go to a specialist disability support service – there’s a way of wording this forms which most of us wouldn’t have, but people in such organisations are the experts. The service I used was free, too.
      Good luck!

  11. You’re a star. Thank you so much, this was everything I needed to know and more. Thank you.

  12. Pingback: Applying for Disability Living Allowance (UK) « My Bipolar Life

  13. Pingback: Stupid, bloody DLA form!! Grrrrrr!!!! « My Bipolar Life

  14. Nicola Slade-Normanton says:

    I have sever depression and had it for quite some months now. I am on strong antidepresants, see a councillor every two week and my mood swings are outragoeus. I think about suicide all day everyday. My moods vary of aggressive, emotional, happy, sad, sucide (which leads to me actually particiapting in acts to kill myself) low, fedup, tired, not caring about anything/anyone, unsociable, scared, vulberable, lonely and lazy. I get that bad that sometimes i dont turn upto work, turn off my phone and ignore everyone and the world. I find everyday life extremely difficult and my own exisencen upsets me viciously. Even laying with my partner can make me feel sick of the thought him touching or talking to me or i just wana cuddle and cry on him. Being at works sends my moods on a rollercoaster, even a simple task like going to the shop can be difficult depending on my mood. Im finding it extremly difficult to cope with my depression and was woundering if i could claim for it? What the number is to phone and if there is any other additional help i can get. Your reply would mean the world. Thankyou.

    • Hi Nicola, I’m by no means an expert but I can tell you that Disability Living Allowance is payable for a range of disabling mental health conditions and it is an “in work” benefit, meaning you can claim it as well as having a job. The Disability Benefits Helpline is 08457 123 456,and it’s open Monday to Friday, 8am to 6pm. They can tell you more and send you a claim form, but I would *always* advise people to get specialist help (from a Citizens Advice Bureau, Local Mind Association, or a disability resource centre) in your area, as there is an art to completing the forms in order to explain to the DWP exactly how your condition affects your life. Good luck!

  15. alan says:

    hi ive sufferd depression and social phobia all my life and since had 2 suicide attempts since december now a lot bought on by relationship issues now on antidepressants start therapy soon and asking to be checked for bi polar,i just done dla claim what is the chance of gettin it awarded,i avoid going out i stay in bed i dont eat have to be reminded to eat and take meds,i dont wash or change clothes since end of jan just a complete mess and really hate life

    • Hi Alan, obviously I am no expert, but hopefully if you put all those things down on the form it will go in your favour. If for some reason you claim is unsuccessful, please don’t think it’s your fault or give up – there’s a real knack to filling in these forms, so if you ever find you need to appeal try getting someone like the Citizen’s Advice Bureau or your Local Mind Association or a disability resource centre near you to go through the form with you. Wishing you all the best x

      • alan says:

        i put claim in on 21st feb then got letter stating on 28th that they are contacting my dr for further details before a decision can be made do you know how long that would take.i ha e a new dr now its only since the overdose in dec that i was offered help from mental health,ive suffered depression and feelings of low self worth for 20yrs always affected work and have social phobia which i didnt know was a problem untill i was told in december so ive just lived with it all my life a combination of recent things and things from growing up all imploding at once such as being abused for many years by step dad,mum not loving me and choosing her husband over me,my daughter who i had custody of 11yrs left me last march,moved my whole life for a new life 200miles away for a woman i love now have 2 new baby sons but hardly see just get texts and pics,over the past yr just had a slow breakdown now every day is hard and feels empty and lifeless

  16. KEVIN says:

    I stumbled across you blog because I’m trying to help a lady friend claim DLA. She was diagnosed four years ago with bipolar. Like your self I’ve filled in a few forms over the years but as you say DLA is difficult, very difficult.

    At the moment my friend is in hospital after throwing one mighty wobbler she has just been taken off section and is now sitting there as a voluntary patient.

    My friend is reluctant to ask for help. I spent two years trying to get her to apply for DLA and it was only after the above event that she realized that she indeed need financial support.

    Tell me this if you will. When she first entered hospital she had an advocate and a social worker appointed. Does the advocate still stand now that she is a voluntary patient? Is the advocate and/or social worker a better person to help her fill in the forms? Is it part of their job description

    Thanks for any advice you are your readers can give.

    • What I would say is that in finding someone to help with benefit claims I would recommend someone with a track record of success – in other words, the *person* over the specific job role. Not sure what kind of an advocate she has – if an independent mental health advocate (IHMA) their role will probably be primarily with people under section, but other types of mental health can work with anyone. There are lots of types of people who could help with filling in the forms, yes advocates and SWs but also disability rights centre workers, Citizens’ Advice, local Mind Associations, etc etc. You should know that as of this week DLA has been phased put and replaced with Personal Independence Payments (PIP) so no-one will really be an expert in PIP yet, but I would still consider in necessary for the person to have a good track record of ESA/DLA claims and successful appeals.
      This will be especially important because your friend is reluctant to ask for help. You don’t get anything, unfortunately, for saying you are OK really, or that you don’t want to trouble anyone. The role of the helper is to draw out the very worst of the claimant’s situation. Everything needs to be filled in as if it’s the claimant’s worst day. That’s why the objective eye of a professional form filler is so important, to draw out from the claimant what is needed for the form. Good luck to you both!

  17. jenny says:

    i can not fill in my dla form is there any one in Gravesend in kent that can help me please

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