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.