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.

 

The Difference - contd

(follow on from The Difference)

The way I like to think how people are is in a kind of pie chart where the folk you meet are set up into approximately 80%, then 10%, then 5% and then another 5% again. Not too hard to picture, and very much part of trying to understand why people are the way they are.

80% of the time I meet people who are supportive, kind and generally treat disability as something that means a person may need some assistance to get on in the world. They open doors to let wheelchairs through. They listen when you say that you are on a special diet. They offer lifts. When you are sick, they visit. They talk to you like you are an adult, with equal intelligence. They understand there are laws to protect disabled people and they understand they are important. Occasionally they get flustered, because some people care so much about getting it right, they worry they haven't done enough. They're the ones who call you before a dinner party to double check what you can or cannot eat. They buy ingenious presents. They go out of their way to include you and make sure you are safe.

Up until now I also did not realise just how important it is for disabled adults to be allowed to have plenty of time interacting without the focus of attention always being on their condition. By that I do not mean they need to have that completely ignored. It can be very helpful to be open about a person's condition, or mobility needs, or equipment they use. But it can be a nightmare to realise you are the 'special' one in the room, and that sometimes the last thing you want is for people to make a fuss. Getting that balance right is very difficult. The very best people in the 80% category wrestle with this, and try to make sure there is a ramp at the restaurant and an accessible toilet, and yet remember not to make a song and dance about it when everyone is sitting around eating dinner.

My theory is that everyone deep down finds it difficult to interact to someone who uses a wheelchair, or is blind, or deaf, or etc, etc. They feel all sorts of emotions, both negative and positive, as they watch their friend negotiate a dreadful kerb, or slur their speech to mush, or sit pale with pain that will not sodding stop. There are fears: what if they don't know how to handle that particular person? What does that say about them?  They begin to imagine how awful it might be to lose a limb, or an eye, or suddenly take a fit in the middle of the street. It stirs up misgivings about how they would cope if the tables turned. Perhaps that could be them one day wittering on about benefits, and doctors, and constant pain, and that is a terrifying prospect to contemplate.

I mean, imagine. What if that bus hit you, or a virus dissolved your functions, or a stroke took half your body over? How would you cope?

How are you supposed to cope right now? Have you just patronised your friend to pieces? What kind of support are you supposed to give? What if that means they've over stepped the mark and the help they've just offered is disempowering.

It is the ability to process these emotions that I suspect makes a great deal of difference how any person approaches another person with a disability. I suspect that very often people slip way past compassion and jump whack into pity. They feel sorry for that person. Obviously, they are different, and maybe even a bit special. And as soon as pity sneaks in, then patronising is absolutely on the cards. There is no longer a common link. There is just the need to be in charge, and talk in a loud but sympathetic voice.

That leads me onto the other percentages. The 10% section are those who say daft or even hurtful things, but usually out of ignorance. They don't mean to be mean. They just don't get it. Perhaps their humour is completely off, or they park in the disabled bay without actually realising it can make a heck of a difference. Their actions are not malicious, just stupid. One of my bugbears is people using disabled toilets when they don't have to. I know that there are many folk who have hidden disability's who use such toilets, and much power to their elbow. But if you're a parent who sneaks in with their children and their are no nappies to change, then please only do this if in absolute desperation. If not, it's a terrible lesson to teach the next generation. I'm guessing actions like this fit into the 10% bracket. Not meant to harm, but certainly out of thoughtlessness.

The first 5% most certainly do harm. They often twist and bend situations too. By this I mean, they often tell lies. They lie to cover up using a parking bay, and being challenged makes no difference to their behaviour. They may be a doctor who is unwilling to prescribe painkillers, so makes a chronic pain sufferer jump through hoops to get a prescription every time (this happens way more than you might imagine, and people in agony are made to feel like addicts when they have legitimate need). They may be a medical examiner who sticks so closely to their tick box, they are unable to acknowledge that the person before them is not only too unwell to work, they're not even well enough to have a medical.

They often reside in authority. Some of them in high places, with privilege and prestige. Their actions can leave a disabled adult penniless or homeless or in fear for their lives. They block employment opportunities. Or they force people into jobs that will most likely grind what health that person has left to the ground. They hate admitting they are wrong. They approach access issues with astonishing arrogance. They have become so wrapped up in their role, they are unable to see the person before them. And I mean that literally. They have become so hardened and so blind that they can ignore the cruelty in their actions, because disabled people are more like objects to them. They talk about 'them' as if they could not possibly be linked in any way.

They might function out of pity. They most likely see themselves as being 'caring' and therefore in this interaction, they are a 'carer'. This relationship requires that not only what they do being acknowledged as being right, it also should be acknowledged with gratitude.

In terms of the transaction analysis model - they regard themselves as the parent, and anyone who is disabled as a child. They do not meet their charges with respect. They do not look them in the eye, and acknowledge the shared experiences between one another, no matter what. They leave people with inadequate care without a shrug of conscience slipping in. And woe betide you if you challenge them. They will slip and slither and wriggle away from direct confrontation. It is their role to decide what is best for you. You asked for a cup with a straw, but it would be better for you to drink straight from the cup if they hold it at the angle they have decided would be best. It does not matter that the straw method has been tried and tested and found to work efficiently. Sit up nice, and sip the darned cup. Be thankful too - wasn't it kind of them to force you to drink in a way that makes you more reliant and less independent?

The final 5% are genuinely cruel. Many of the people I've just tried to describe are bullies, but this final percentage are bullies with knobs on. I've only met a few folk like this, and that has been terrifying. They operate out of hatred. They are malicious. Sadly, I've met other disabled adults that fit this category, and that is off the scale difficult to deal with. How they cannot see they are in the same boat is beyond me. These are the people who operate from motivations I cannot guess at. In the words of my mother in law - they are perhaps just bad b*st*rds.

I would love to say with the odds stacked towards 80% of the world being so nice, that this means life is generally hassle free. It is not. Sadly, the remaining 20%, with it's various nuances, have an amazing amount of power.

When you live with chronic ill health, it is a shock to discover just how powerful that small band of folk can be. I do not say this lightly - I have been in torture thanks to that harmful 20%. I know from the friends I have who also walk similar paths, that to find that so few people can have such a negative impact is overwhelming. The remaining 80% look on in horror and anger at the injustices that occur, but unless they have really tasted it, it's impossible to explain how that feels. To feel so powerless because there can be daily battles to get even very basic human needs catered for. Even more so when the powers that be are often the worst offenders.

A friend of mine recently commented when discussing doctors that the bad ones almost take away the impact of the ones that are good, because their actions are so awful. It's been after years of sitting in the shadow of powers that be that has triggered this second blog attempt. Nobody wants to feel they have no voice or sway in the world. This wee blog is mainly for that purpose. To make a little voice a bit bigger. Coz there has been plenty stuff to strike it hard.

Quiz

This is very useful for practicing for DLA/ESA

‎1. Itching
Do you have an itch? Is it behind your ear? If so please can you define if it is
a) Itchy?
b) Moochy?
c) Tiny?
d) Totty
e) Insignificant.

‎2. Bathing
What exactly do you wash? Bits? Bits and bobs? Up and down? Left? Right? All over?
a) I prefer a car wash
b) The cat licks me all over. I like it. I pay my cat as she is my P.A.
c) Baby wipes every time.
d) I use a scraper and olive oil
e) Bird bath (am applying for accessible one, due to recent perilous situation).

‎3. Sex
Obviously sex takes energy, and in order for us to assess how on earth you conceived you need to tell us in full and frank details how you ever got it on if your legs are made of cr*p?
a) I use Satnav
b) Hoist plus Velcro
c) Velcro plus clingfilm
d) E-bay
e) 4-ply and a bit of superglue. Plus fruit.

‎4. Eating
You do eat don’t you? Everyone likes to eat. It’s what normal people do. And that’s what you are. You’re just a Normal person who is ‘DISABLED”. Well done looking so normal, when, um, you’re not.
a) Jelly babies.
b) Jelly babies on toast
c) Satnav
d) I suck the dew off lemons
e) Whatever is left on my child’s plate.

‎5. And finally. Questions I have genuinely heard asked or that other people have been asked in actual tribunal situations.
a) So if your knees are sore, then how do you kneel down to pray (in church)?
b) How did you start dating (your girlfriend?)
c) Your bowels are loose X many times per day, (Not a question. An opening statement, straight after introductions)
d) Let me just test your babinski reflex (during a medical), with this. This was the doctor’s car keys.
e) You are too sick to complete this medical. Therefore you will have another one so we can assess how sick you are. (this happened to me. It took three medicals).