I haven't
written this up on Facebook or anywhere else properly as, at the time, I
couldn't bring myself to do it without going into complete panic mode, blood
pressure hitting the roof and heart pounding in my chest so badly I debated
whether to go to A&E at least three times over the ensuing weekend. I didn't by the way as I knew what was
causing it and knew that if I calmed down a bit, the pain would stop.
I knew it
was coming, but the sheer incompetence, non-relevance, contradictions and total
lack of understanding was beyond even my belief. I'm talking, of course, about my son's change
over from DLA to PIP (Disability Living Allowance to Personal Independence
Payment for those that don't know). As I
said, I knew it was coming. His DLA ran
out when he was 16 and he would have been re-reviewed again anyway but, as PIP
was so behind, they continued paying the DLA until PIP applications had caught
up so it's now nearer his 17th birthday rather than his 16th.
Now I've
heard all the horror stories, both from national news and friends who had gone
through this before me. I knew that the
system is flawed, that it cares little about the individual and more about
saving the government money (or so it would like us to think it's saving money,
but we'll go into that later). Also I
hate the way that some are justifying people not getting PIP because they can
work; please note what PIP stands for; personal INDEPENDENCE payment, not CAN'T
GO TO WORK payment. It is supposed, as
DLA was, to be a specific payment for those that need more help and more
assistance to aid their day to day living and that would include being
independent and being able to get extra help, if needed, to get them to work,
college or whatever i.e., a specially adapted car or a bus pass that enables
them to travel with a companion, etc. It
is not a payment to replace work; it is a payment to help those that are
vulnerable, physically AND/or mentally disadvantaged to integrate back into
society as much as is humanly possible for them, which, of course, is what this
government says it wants. Hmmmmmm.
My son has
an invisible disability. He can walk, he
has no limbs missing, he's bright; in fact in certain subjects (those that
interest him) he's rather intelligent, but he does have a disability; it's
called Autism!! That, my friends, is a
mental disability. It doesn't really
show unless in extreme circumstances.
Autism, ASD, whatever you prefer to call it, is a spectrum; that means
there is a huge variety ranging from those that manage, on the whole, to
reasonably cope and those that, not being rude of anything, will sit in the
corner and rock, are non-verbal and have no comprehension of the world around
them. It's a very wide spectrum! My son is somewhere near the OK end. He has issues, some he can handle, and some
he can't. He has anxiety issues, sensory
issues, and social issues. He doesn't
really have a learning disability, although he doesn't get written English at
all; he can read, but writing is not only physically painful to him (if he has
to write more than a few sentences), but is mentally challenging. He doesn't
get the rules as English doesn't really have rules and those that it does, it
breaks; often! He's much more of a maths
kid, it's logical, it has wrong and right answers and it doesn't have any 'grey'.
Anyway, I'm
digressing; sort of.
Under the
DLA system we received middle rate care and low mobility rate. Low mobility was because he doesn't like
public transport, going to new places, requires a companion for any journey
more than about 4 mins away by walking and, even then, will have had to have done
the journey many times with a companion before he would attempt alone. He needs
familiarity. Middle rate care was due to
sensory issues with clothing, noise, light, etc, social issues like lack of eye
contact, not understanding some language (he often takes things literally
although he is now learning to recognise starkly obvious sarcasm.) He has issues with sharp objects, hot things,
loud noises, crowds, flashing lights, high ceilings, long escalators, bright
lights, routine changes, hates new places and meeting new people. Think Sheldon
from Big Bang and you're almost there without the super intelligence. May I add that he has learnt some coping mechanism
for some of them, but far from all of them and, to be honest, all of them will
never truly go away. Autism is for life
and he will always need some form of help some of the time. On top of that he suffers from migraines
which include lines across his vision, stonking headaches, blurred vision and,
sometimes, a form of tunnel vision. He
also gets depressed! The world is a
scary place for people like my son and to top it off, their condition is not
treated seriously for the most part due to that invisibility.
Anyway, back
to where I began. The PIP form came through. It wasn't that much different to the old DLA
form, but there were some changes and a distinct lack of certain questions, ie,
sensory issues didn't come into it at all.
Hmmm. Has anyone ever thought
that if you don't like certain fabrics, those fabrics can feel like they are
burning your skin; literally burning!
Well, obviously the new system hasn't!
Sensory issues like noise, fabrics, and lights are massive; they are not
something you can 'just get over'.
Imagine going into a room which has spotlights on all over the ceiling;
the light is almost blinding. Then
imagine that that room also has music on at full blast; you can't hear yourself
think, you can't hear anyone speak, people are shouting over it. The place is packed and you can't move,
you're feeling crushed. The clothes you
are wearing are rough against your skin, the button on your waistband is boring
a hole in your stomach, and your jeans are burning your legs. All you want to do is get out. People are coming up to you and shouting in
your face; you're not sure if they are angry with you or not. You get scared and still you can't find your
way out. THAT is what having Autism is
like. Going into a new place, meeting
new people, wearing clothes that others would find normal, going into a crowd,
getting on a bus. All those everyday
things we 'neuro typicals' take for granted is an extremely sensory overloaded,
stressful and anxiety filling situation.
But that isn't important apparently, that doesn't count, that isn't even
a consideration on the stupid form.
Anyway,
again, I get a member of the Kent Autistic Trust to come over and help me fill
in the form. That's another thing that
people seem to forget, us carers deal with this on a day to day basis, it's our
everyday life, it's how our life is, it doesn't change and after a while it
becomes 'normal' and we don't often remember what is 'normal' and what is
'autism' as we do it all the time, so I always get help filling in the
form. Form filled in, points roughly
checked, under new system, we should get high rate care (??) and low rate
mobility; the rates are different now. I
send it off and sit back and wait for the dreaded ATOS assessment appointment
to come through.
Weeks go
by. I asked for a PIP application in
January, it's now April! I chase. Finally get an appointment for end April in
DARTFORD, we’re in Gillingham. We’d have
to go by train, six stations and then find the place. I think not!
I telephone them, tell them my son has Autism and doesn’t like a) public
transport, b) new places and c) new people.
He’s already stressed at having to meet a new person; he’s not doing the
rest. The person on the end of the line
is lovely. He states that there is an
assessment centre right up the road (still means a bus journey or a very long,
uphill walk, but we’ll cross that one on the day) and they have 4 appointments
available within the next couple of weeks!
Why, then, did they want to send us to Dartford! Hmmmmm!
The day arrives. My son is stressed, but we’ve talked it over almost
every day since I rebooked the appointment by phone 2 weeks ago; this is what
we carers do for our charges. We talk it
over, we often have to do the route so that our charges have some prior
knowledge, we ask questions, we reassure, we deal with the building up of the
anxiety (this, in some cases, can include dealing with verbal abuse, physical
abuse, full on depression, etc). Luckily
my son hasn’t got verbally or physically abusive, but I can see he is stressed
by the lack of communication, him not even wanting to be online with friends
and him constantly saying he’s tired. He
understands that whatever I say won’t be taken into consideration even though I’ve
been delegated his official appointee (WTF).
I tell him that if he is stressed, doesn’t want to answer, doesn’t
understand the question or needs my help in any way, he can ask me.
We get the
bus, even though he hates it, he’s tired and doesn’t want to walk. We arrive, we have to wait. He’s wearing
fingerless gloves, a fleece jacket over a T-shirt, fleece trousers and his over
the shoulder bag. It’s threatening rain,
but he doesn’t really need the gloves.
We go in, he sits down. He doesn’t
remove the gloves, the bag or the jacket.
The lady introduces herself and she starts asking questions. My son does his best; in fact I’m proud of
him. He made little eye contact, fiddled
with his fingers and strap of his bag constantly and only asked me a couple of
times to help with the questions. He
follows her instructions to touch his toes, remove his gloves, put his finger
to his nose and stand up and sit down. He falters slightly with spelling ‘world’
backwards, taking several goes but getting there eventually. He counts down in 7s from 100 fine
though. When asked about travelling he
states he hates public transport, he feels claustrophobic, they smell funny, he
doesn’t like asking for tickets and only uses it if he is with someone. He says he walks to his NVQ by himself but
that is only up the road, but he doesn’t walk to trampolining lessons as they
are a bit further (NVQ is a 3 minute walk I say and trampolining is about 6
minutes). He says he gets on with his
classmates (I tell her that there are only 6 in the class so about the right
number for him to cope with and that he couldn’t deal with college numbers as
he ‘froze’ whilst on a visit there). She
then asks him “if your mum wants you to help in the kitchen with dinner, would
you peel potatoes for her?” (Loaded question I think as if he says no he would
feel he is being unhelpful). He answers
with “I would prefer to wash up as I don’t like using sharp things”. He also adds, although she didn’t ask, that
he worries about burning himself on the oven and hob (he’s obviously beginning
to understand what she’s really asking and wants her to know the situation
fully). “So you wouldn’t cook then if you were hungry?” “No”. “What would you
do if you’re hungry” “I’d get myself a snack” (I add that this would mean a
biscuit or a packet of crisps or anything that was grabbable and didn’t require
any preparing, he nods in agreement).
She then asks “if you and your mum and dad were out shopping and you got
lost what would you do?” “Panic” was his reply.
“After you had stopped panicking, what would you do?” (For starters how
does she know he would stop panicking?) “Erm, I don’t know, maybe go to the
checkout.” I turn to my son at this
point and ask him “what if we weren’t in a shop?” “I don’t know”. So I then ask “you have a mobile phone, would
you think to text me?” “No”. “Oh, he has
a mobile does he?” She pipes up. “Yes,
but he only uses it to text me when he’s on the way home.” I reply. The interview goes on like this for about an
hour. She says she’s got enough and that
he has done well. Hmmmm, what does that
mean? We leave, he frets about the bus
and we walk home. We go via Subway (his
favourite) and he’s calmed down by the time we get home. I feel ok as he answered honestly; pointing
out his worries and fears.
Two weeks
later, on a Saturday no less, I get the report back (I’ve asked for a
copy). It is blanket ‘NO’ across all
questions. It says he’s fine. It says he doesn’t have a physical disability
that would stop him doing any of the things that they have asked. No he doesn’t; it’s a MENTAL DISABILITY you
stupid cow! He doesn’t self-harm, so he can prepare food (WTF?). He can touch his toes, so he can tie shoe
laces (???? Magic shoes anyone?). As he
arrived by bus with his mother he can cope with journeys by himself (Yeah that’s
why he has a bus pass with companion on it and I gave you a copy of a doctor’s
letter stating he needed as much)! He
can count, so he can budget (Erm, I’m his appointee! He was assessed by a member of the DWP as
needing an appointee as he couldn’t budget by himself)!! He didn’t smell and looked the correct weight
for his height so he can cope with washing and bathing and dressing. (You didn’t weigh him, so how do you know! I
ensure/remind him to shower, bring down his clothes and I feed him. What did you want me to do, let him turn up
in filthy clothes, stinking and not been fed for weeks? I think Social Services might have been on my
door if I had especially as I receive Carer’s Allowance for him. He was wearing
gloves on a relative warm day and didn’t remove them until asked even though
indoors. He also didn’t remove his coat
or bag.) It goes on. I have a meltdown,
my heart is pounding, I’m swinging from anger, sheer disbelief and overwhelming
panic. From this report I know that all
monies will stop including my carers which I get because of the middle rate;
that is just over £500 per month! The
£306 he gets and the stupidly ridiculous £62 per week that I get for caring for
him even though if I put him into care it would cost thousands a week (it’s not
even a minimum wage).
I can’t realistically
get a job; I’ve tried in the past and had to give it up. No employer is going to be happy with me
ringing in saying ‘I can’t come in my son isn’t coping today’, ‘I can’t come
in, my son has a migraine and can’t see properly’. He already stated in the assessment that he
had more than half of the week not feeling 100% as she asked him how many ‘bad’
days he had. Maybe a part time job is
possible; a few hours a couple of days a week might just be possible, as long
as it’s flexible. Maybe a job from
home. Ok, breathe I tell myself. Hmmmm, I haven’t been to work for more than
10 years, I’m in my early 50s, I have a twisted pelvis which means I can’t
stand for very long or bend down that well or lift heavy things. Hmmmmm, the
options aren’t looking particularly favourable.
I look again
at the report! It’s ridiculous! The justifications don’t match the questions,
the whole thing is riddled with contradictions, things have been omitted, and
one thing is a complete lie! I burst
into tears!!
A beautiful
friend reads my status on Facebook and pops round with biscuits, cake and
flowers. Many more post supportive
replies. Some send links they have found
helpful. All I can say is thank
you!! I’m feeling numb by this point.
I have to
wait until Monday to deal with it, but I can’t deal with it as no official
decision has been made! It’s blatantly
obvious what the decision will be! Have
they contacted his GP? No! Have they contacted the hospital for his old
notes? No! Will they look at the original form; see how
different the answers are? Will they
look at the justifications on the report and see the contradictions, the
non-relevance of some of them? I highly
doubt it. What they will do is look at
the top of each page where she has stated ‘a) can do….unaided’ even though
there is an option ‘e) needs supervision and/or assistance to do……’
I’m not
asking for a lot! I’m not asking for
thousands a week. I’m not even asking
for the higher rate! I just want what we
already have. I want his needs
recognised. I want to be able to afford
his specialist clothes that I can’t buy on the high street as they don’t sell
elasticated trousers for his age. I want
to be able to afford medication as he can’t take tablets and has to have soluble
or nasal spray versions which, I might add, have to be specially ordered as the
chemist doesn’t stock them. He can’t buy
19p paracetamol; he has to have soluble tablets at over £3 a pack. He can’t have normal migraine meds as they
are tablets, so it’s prescription meds (admittedly these are currently free,
but they won’t always be). I want him to
have his private trampoline lessons as he can’t cope with group ones and can’t
attend the home ed group that he so loved and was small enough for him to
handle due to his studying. I want him
to be able to apply for his bus pass, his CEA card, his reduced fare train so
he can take someone out with him and not end up ‘locked’ in his bedroom for the
rest of his life. And, damn it, I want
to be able to afford my osteopath so I can damn well be pain free for a few
weeks at a time. Oh and now I need to pay for prescriptions for Beta Blockers
as my heart is pounding which I wouldn’t need if you’d done your damn job properly!
My son has
an invisible disability. I am invisible
full stop. I’m his carer and I don’t
matter at all as far as the government is concerned. Our health doesn’t matter. We don’t even get free prescriptions. We deal with a wide range of difficulties and
get paid pittance, saving them thousands and on top of that we have this
stupid, discriminatory, criminal, new system to have to deal with. The forms, the assessments, the interviews,
the paperwork finding, the tribunals, the waiting, the fear of losing life
dependant money. It isn’t just the
disabled who are suffering with this new system; it’s the families and carers
behind it. Personal Independence my
arse! They want them locked away behind
closed doors, hidden, pointed at if they do go out, blamed for the lack of
money this country has, blamed for the drain on the NHS, ridiculed and
ostracised.
Needless to
say that I’m not giving up. My son’s
care and his independence are more important to me. I’ll ask for a reconsideration (letter
already done with help from KAT again who also laughed at some of the
justifications and thought the relevance of some of them was stupidly
ridiculous and also got angry at most of the rest), then when they turn me down
(which they will), I’ll go to tribunal. This, of course, will mean months
without money, lots of juggling, going without osteo to pay for his
trampolining and not being able to afford prescriptions (how that’s going to
work I have no idea). Some of the bills
will just have to wait. All of it will
mean more stress! I need vodka. Oh, wait, I can’t afford it. Hrumph!
I’m
currently also attending Cognitive Behaviour Therapy in an attempt to keep me
calm so I don’t end up giving myself a heart attack. When asked if I felt like harming myself, I
replied “no, my son is too important”.
When asked if I was a danger to anyone else, I replied “only to the
stupid assessor woman as I could quite easily strangle her if I saw her, but
only after I’d punched her bloody lights out”.
“Ok, I think we need some therapy!” was their response.
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