Hey, so, I'm leaving this as late as I possibly could since.. of
course I have, executive dysfunction and all. I sort of glossed over a
lot of what I deal with in the introduction post because I didn't know
how much I should really go into or not. I'm autistic, have hEDS, use a
wheelchair full time, deal with chronic pain and chronic fatigue (as a
result of the hEDS).
My decision letter is
dated 7 March so, since 7 April is a Sunday, I reckon today is the last
day I can ask for the mandatory reconsideration. CAB told me that I can
do it by a phone call, though I only see reference to writing in about
it on the decision letter. CAB told me they just don't like to publicise
the easier way, but I just thought I'd try and get some confirmation or
something... plus some advice about what specifically to say.
I'm
also not sure exactly what to say. WESTMARC prescribed me a wheelchair
(Quickie Argon2 and Frog Legs suspension) and I told PIP about it when
that happened. Had an assessment about 6 months later... got my decision
letter on 21 March (so it took two weeks to arrive.. giving me only two
weeks to get over my executive dysfunction instead of the month you're
really meant to have).
This time I went into
the assessment having crammed a bunch of advice from benefitsandwork
such as about quantifying everything (like I realised the very small
amount of walking I can do is less than 1% of a day, and their internal
documents say to take anything as 50% or more as a need). I was highly
comforted by reading (also in their internal document) that anyone using
a wheelchair full time (and I use mine 99% of the time) is meant to
automatically get 12 points mobility. I also argued that I need an aid
(the chair) to do all the daily living tasks, since I genuinely can now
do them with the chair where I couldn't before.
But
they gave me 10 points mobility (they claim I can move around more than
20 metres.. I never stood up once in the appointment). They also didn't
give me anything for planning and following a journey, even though I
made it clear I can only follow directions but not plan them.
They also gave me 9 points for daily living (admittedly up from the 7 it was 2 years ago).
They
gave me no points for managing my medication even though I use a daucet
box and I know that's meant to give you points. Additionally, I made it
clear that I need reminders or else I don't stay on top of it – when my
phone broke and I couldn't afford a new one I kept missing my meds for
weeks on end. I also made it clear how I need prompting to take my pain
meds, I cannot just go "I am in pain, ergo I should have pain meds", I
sit there for hours until a friend asks me if I've had pain meds.
They said I can communicate unaided even though I had to use multiple communication aids in the appointment.
They
also completely ignored how my eating disorders make it so I cannot
feed myself reliably or on time. I regularly waste food and spend
multiple hours trying to work myself up to it. I know the nurse in the
actual appointment wrote all that. But the decisionmaker decided it
didn't count. I dunno. I need constant prompting about that, which I
know you are meant to get points for. But they didn't give me those
points.
They did admittedly believe me that I need to use the wheelchair and grab rails and so forth for the bathroom activities.
They
awarded me no points for budgeting even though I cannot do any of that
myself. I even get too anxious to check my bank balance without heavy
prompting and nagging about it. I just coast through and try to avoid
buying anything.
And lastly, they gave me no points for
socialising, even though my autism diagnosis specifically mentions the
difficulties I have with that, and I repeatedly stressed my anxiety and
stress about how people behave unexpectedly around me (a trans woman who
is obviously not straight from the way I dress, plus all of the
wheelchair things). I stressed how I will stay indoors for weeks at a
time purely out of anxiety for how people would act in public,
especially since I've started getting people shouting random things at
me on the street even more often since getting the wheelchair.
So
they ended up coming back with only giving me standard rate mobility,
instead of the high rate everything online indicated I should get for
using the wheelchair. They also didn't increase me to high rate daily
living, despite my calculations saying I should easily have qualified
for having to use an aid for all the activities (not just the chair, but
also things like long-handled spoons to reach from the position the
chair puts me in), and needing heavy prompting/nagging for the things
the wheelchair doesn't directly impact. I had already decided way before
even having the assessment that they were likely to try and screw me
around and that I would do whatever it took to get what I deserve.. but
I'm still surprisingly upset by the fact that they've decided I don't
really need the chair? I don't know.
I've seen
(by forum lurking) that other people say to just.. have a good idea of
what arguments you're making with regard to the mandatory
reconsideration, and so forth. Given my past experience with them, they
almost certainly did not contact my physiotherapist or the wheelchair
clinic.. so I reckon my path is just to say that I do in fact need to
use the wheelchair and that they've been negligent with their judgments?
So I suppose what I'm really looking for is just encouragement or
warning if I'm going exactly the wrong direction... of course I'm not
giving yous much time at all to do so, I have been planning to make this
post for weeks but... Executive dysfunction, as mentioned. It usually
takes me weeks and weeks to get around to anything. Took me weeks just
to actually open the decision letter (actually only did so just before
writing this – though I knew what the award was even before the letter
actually arrived, because a friend phoned them to ask on my behalf). And
so on, and so forth.
I feel like this is
getting pretty meandering so. I'll leave it for now. Obviously feel free
to ask me further clarifications, or anything like that. And thanks
very much in advance, too.