Disability Living Allowance

Until you have been there, done it – there’s not a thing that will convey the horror the moment you
realise that form really does need filling in. Now.

For the uninitiated DLA is a benefit rewarded for two categories –  the mobility part and the care component. There are different levels of benefit rewarded to either of those categories depending on need. Not only is this a physically exhausting process to assess eligibility, it’s mentally taxing too. Having listened to people who have reached levels of anxiety that have made them suicidal filling in such forms I do not mention the effort it takes to wade through this task lightly. Nearly all first time applicants are turned down; often as a result of filling in forms without understanding what is required. Sadly, even the most obviously eligible people can fight towards the tribunal stage and still lose. Not only is this soul destroying, it leaves people who need that money to pay for equipment or carers, or special diets, or private medicines, or taxis, or a motability car, or a power chair lose out.

There is no actual stipulation as to how the DLA awarded is actually spent – the list above represents actual costs we have encountered and been grateful to cover with assistance. However, despite having trained as a CAB advisor twenty years ago, there was a huge chunk of time I was eligible and gave up on the process of applying. I once calculated how many thousands of pounds difference it would have made if I’d appreciated I needed to appeal as soon as I was initially turned down. Years later, and many welfare officers, tribunals and paperwork later, I am in a much stronger position to not only survive filling in the form; I’ve a few survival tips to share.

One of my dreads during the pregnancy was how was I going to be able to represent realistic care needs whilst maintaining the abilities I have as a mother. It’s a constant tight rope, and I cannot emphasis this enough; there are unfortunately circumstances in which a parent will require legal assistance to fight both sides of that tight rope, such is the difficulty in defending needs versus defending ability.

My last application was two years ago. I had a welfare rights officer do a home visit (contact local social work department and ask if this is available), and it took two days to fill in the form. At about the half way point we were discussing any difficulties with bathing and I crumbled. Having to talk about how frightening it is to get in and out the shower, or bath, because it’s both exhausting and risks me collapsing makes me cry every year I fill in the darned form. Who wants to confess it’s the most exhausting care need, and that it can require supervision and equipment and sometimes even just plain leaving it to baby wipes or a quick top and tail sitting at the sink to get clean?

The welfare rights officer called it a day, and we began again on day two. So, it’s a bit alarming to see that this year’s form is even longer than it was the last time. Not only that, they have switched sections round and there is an increasing obsession about asking how long each care task takes and how many days a week you need support with it. How long do you take to have a tinkle? What about getting to bed? How long does that take? Do you include the two hours you lay on the sofa too exhausted to get up to go to bed? Or the four attempts it took to go to sleep, so that meant a fresh hot bag, and more painkillers, and then toast, and man alive, now you need the bathroom and your head is filled with obsessing just how long it takes to get there, widdle, and back.

One of the best descriptions for filling in the form I’ve heard is to imagine there is an imaginary fairy around you all the time and what you are recording is what you would ask it to do. That means that although you managed to the bathroom and back by clinging onto walls and furniture, would it be safer and less painful to be wheeled there and back? Then the fairy would make you a fresh drink, and fetch an extra blanket and rub your back till you finally slept. It would watch over you overnight and help you drag yourself out your pit in the morning when your joints have solidified into stiffness and you wander just how many pyjama days are permissible in the week.

The coping mechanisms people use to bypass disability and look as functional as can be can dovetail into oblivion. It can be almost impossible to remember that not everyone has to constantly plan round aching muscles, and a fuzzy head, and impossible legs. Even if you have a partner whose as magic a fairy as can be, it can be difficult for them to give you the perspective required to putting on paper an accurate picture of what it actually takes to make day and night function. It takes an almost clinical coldness in sitting back and trying to see the perspective clearly. What would your life be like if you could leap back into spontaneously running for a bus, and grabbing a sandwich and neither of those tasks being either impossible or hmm, is that wheat free bread or not? Just as well my carer packed those cereal bars or its pass out time, and concrete will be kissed…

This is why I would stress first and foremost – do not fill a DLA form in yourself. You need assistance. At best either a CAB advisor or a welfare right’s officer. This year my husband is filling in the form as I think through the answers with him. That’s after many years experience, and after learning from a large number of trained people assisting me in the past. We survived the ESA form last year, and realised we had cracked how to negotiate our way round lengthy forms asking very personal questions together. It’s not a route I would recommend without seriously considering if it would be wiser to find a more experienced expert. It’s just this time we think we count as having both those qualities.

Even with him writing and me reflecting it’s been a week of work and we are barely half way done. It sadly is such a draining process that many people (realistically) fear relapses in their condition, and diving into depression as they contemplate all they cannot do and expose it to strangers in the form of a many paged novel. I can understand why many people chose not to apply or appeal purely because of how low it makes them feel. It’s frightening to focus on how much an illness has eaten into your independence, only to have the utter humiliation of a tribunal ahead that may or may not succeed.

Who wants to have a doctor visit and declare sometimes such outrageous claims regarding ability you’re left reeling? Who wants to face a panel of people diving into intimate details regarding toileting, or the panic attacks that cripple you, or the pain that stifles everything you do?

It’s like the ultimate anti-interview. In fact, it’s learning from a friend how to focus on how to fill in application forms for jobs and how to store examples ready to respond with in an interview that have crystallised my ability to sum up quickly how my mobility is affected off the top of my head.

It helps to break down each question in the form into a series of tasks. The further I can distance my emotion from describing those tasks, the more accurate a picture I can describe. It helps me to sit back and admit that that magic fairy would be pretty busy 24/7 if I wasn’t already using equipment, and paid help, and careful planning to make the most of the energy I have. It’s been interesting to see my husband’s reactions filling in forms. I’m quite blasé now about describing, well, actually there are times I need transferred from a wheelchair to a toilet and then assisted back. My husband is the one filling up with sadness as I describe the anxiety I have when I am unable to leave the house, or the times we’ve left public places because there are multiple allergens there.

The times I cry still happen, but at least I am not paralysed by grief describing my day to day in tiny sections. Believe me I really feel for you if you get this year’s form as a first time experience. Don’t let my blasé description here depress you, if you are gibbering by page two. It’s still a fricken nightmare, just one that I’ve processed so many times now I’m not overwhelmed like I used to be.

Some people advocate writing screeds and screeds. Personally I have witnessed and prefer bullet point statements. I would describe my walking like this; I am unable to walk any distance without severe discomfort and pain. I use a power chair as I am unable to self propel, however I require a carer to push me in my manual chair when I am too exhausted to use the power chair. Taken a while to get that into a bullet point, but I could recite it in my sleep now.

I do not even bother to fill in the distance I can do and the time it takes. I’ve witnessed people being driven to a straight piece of road and actually measuring distance and time with a stop watch so they can fill that part in. That gives a skewed picture of someone who may have to rest for hours after walking a totally unusable distance. If you hurt, or you need to rest, or you are at risk whilst walking – that might mean yes technically you can walk a bit, but is it useful walking? There are many situations that might mean you are eligible for the mobility component that are not immediately obvious – seriously, do not fill this in without proper advice. Also pride has to go out the window. I’ve watched too many people crawl along supermarket aisles clinging onto shelves in severe discomfort to know that it’s actually very easy to underestimate just how compromised your mobility is. Sadly, there are plenty health professionals out there who add to the confusion and will not support a person as they come to terms with how little their legs will propel.

As I am a wheelchair user, I know some of what I’ve written is too watery to be useful to those who are mobile, but only just, but don’t require a chair. I apologise to those who are reading this longing for the bullet point that sums up their situation in that department. Having had several forms of mobility problems that have fluctuated over the years you have my deepest sympathies.

If the form does not work for you, then you can sometimes adapt where you think it is appropriate. E.g if the yes/no boxes don’t work on a question, we score them out and write N/A - not applicable. Then we write a small bullet point in an appropriate space that we feel summarises with better clarity. It’s a method I’ve seen used by professionals and often avoids confusion. Today we adapted the pages regarding walking outside and requiring assistance, and converted them to convey assistance I need whilst wheeling. Also, please don’t hesitate in describing how your mental health is affected by your physical challenges and vice versa. This is not time to be stoic. Where appropriate I describe levels of anxiety, etc and the reassurance I need. That counts as assistance just as much as being made lunch or having help getting dressed.

Cynical, moi? I think a lot of the form is written by people focussed on catching folk out. And I don’t mean in a fair, ooh lets catch the cheat’s way. I mean in a asking people the same question over and over in different way’s way, till you are so exhausted you convey your best day ever by accident. The general advice is to avoid that at all costs – that you need to convey the worst day you have (on average). I’ve read people argue against this advice, but having listened to many people tell me they are sick, but not as sick as another poor bugger they know, etc, I am convinced that the majority of disabled adults minimise their needs way more than those who would be prone to exaggerate.

It turns out that although I’d hoped we’d licked this form into shape a while ago, just now has been a good time to summarise my situation. I have an infection right now and am suffering various side effects from various medications and there are complications with my pain management that are exhausting me. I’m adapting every game possible so I can play with my baby on the floor, and manage safely. My husband had to work at home for a period of time after an afternoon of complete dizziness, lack of hand co-ordination and my speech phasing in and out of recognition. I feel vile. I’m ever so grateful I have the kind of husband who walks so well with me through those weeks, and who wants to make it better, and who would love to send the blasted form into outer space, if it made any difference. It’s the time where all those carefully squirreled away meals in the freezer are fantastically useful, and I’m glad I’ve worked so hard to be prepared. Despite the gruesome task of form filling, I am also able to focus on other important matters. Our baby likes mummy lying down and playing very slow, very gentle games. He’s not once expressed concern over how many days it’s taken to get my hair washed. He’s far too caught up in chasing daddy hoovering or licking the pram wheels to even notice I’m conserving energy as much as I can.

The whole subject here is enormous – I appreciate any feedback, and other tips to pass on. And if you too are desperately trying to calculate how long your last trip to the toilet took, you are not alone. You are also entitled to hate this blasted process every single bit, and yet laugh with your child as he gives you a sneaky cuddle and sneaky dribble down your back no matter what.