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.
