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Mandatory Reconsideration Advice

roboticfelidroboticfelid Member Posts: 8 Listener
edited April 2019 in PIP, DLA and AA
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.

Replies

  • roboticfelidroboticfelid Member Posts: 8 Listener
    edited April 2019
    So I've been on hold for 45 minutes now. I hope I get an answer before they close in 40 minutes.I looked closer at the decision notes (instead of just the broad strokes) and it doesn't even mention my wheelchair or my chronic pain at all! They say I can stand and then move using an aid for less than 50 metres. Apparently this is based on showing "some muscle power in your lower limbs when crossing your legs"? Even though on their internal notes I saw the 50% rule stating that if someone has to use a wheelchair for more than 50% of the time, they should get 12 points. And I use my wheelchair for 99% of my moving around. Even the 1% of the time I can walk a little bit it's no more than 5 metres, and it's very slow and painful indeed. So I use my wheelchair because it's not painful.
    It doesn't mention my chronic pain at all, or my inflammation and dislocation caused by my EDS, it just says "you demonstrated adequate grip and range of movement when handling your coat and papers". It says I "didn't appear anxious" even though I repeatedly said I was anxious, and people with autism are notoriously hard to read the facial expressions of.
    It says I showed "adequate eye contact" even though I never made eye contact once!
    It also bizarrely says that I "demonstrated adequate upper limb power", when.. I never said I didn't have that! Once again, the issue is inflammation, pain, bruising, cramps, dislocation of my joints. My muscles work fine. I use a manual wheelchair full-time, I never ever said that I lacked upper body strength! One kind of has to have a rather large amount of upper body strength to handle Glasgow's hills in a manual wheelchair, in fact....
    It's just full of these irrelevant observations of what parts of my body do work, while ignoring all the ways I actually said it doesn't work. Even though the assessor even decided to not ask me to do any "movements" when I subluxed/dislocated my shoulder attempting to do the first one! I wonder what her report actually says about that incident. I just don't see how we can go from the assessor, in person, accepting that my joints are the problem and cause injuries and deciding the risk of injury is too high if she asks me to show certain movements.... to a report saying that I have "adequate upper body strength" (and implying that therefore everything is fine).
    There seems to be no reference at all to any of the 50% rule things which I read about when doing my research, such as how I often cannot change my clothes more than once every week or two, meaning only 7-14% of the time can I actually change my clothes. They accepted that I need to use aids to do so, but have neglected the part about how 86-93% of the time I cannot do it at all! Same about eating unaided, I do not need special aids to eat when I am able to, but I frequently go 48-72 hours without eating, so what should be 3 meals a day is 1 meal every 2-3 days, or only eating 11% of the time – once again seemingly in contradiction to the 50% rule.
    It says I can express verbal information unaided, even though I made it clear I can only speak for about an hour a day (which is only 4% of a day), and I repeatedly went nonverbal and had to write my answers down instead in the appointment. I used a communication aid right there! How is that expressing verbal information unaided? And again, where is the 50% rule there??
    The letter also berates me for apparently not informing them of changes to my needs soon enough, even though I did so within a few days of being prescribed my wheelchair. I had been using a second-hand wheelchair for 9 months prior to that, but I knew that if I just showed up in a wheelchair and said I decided I needed it with no other input, they would simply say I didn't actually need it. So I waited until I had actually been prescribed one. I do not see how this is at all failing to notify them within one month.
    Honestly I am mostly just baffled by the fact they didn't mention my wheelchair at all. They just said I can stand and walk with an aid. Which isn't even true, I can only stand, for very short periods, usually only for transferring in and out of the chair. I can't walk 99% of the time, which is well over the threshold for the 50% rule. I'm also baffled that they didn't mention my chronic pain or the risk of injury EDS presents, since after my prior assessment they kept quibbling over whether the diagnosis really means I have issues ("we look at how your condition actually affects you, not just diagnoses", when my very first assessment had said "you may well have these issues, but there's no diagnosis to support it"). With this one they just conveniently ignored it altogether in the decision. It's baffling.
    I wish I didn't get so stressed out by this... this gaslighting. Honestly, that's what it is. They also kept saying irrelevant things like "your fingers showed adequate grip" when I never claimed I couldn't grip things – I said I get inflammation in my knuckles and cramp in my muscles and have to keep taking breaks, which is exactly what the assessor saw when I was using the Boogie Board, I had to keep stopping to massage my hands and wrists and elbows and shouluders. Ugh, I hate this. And of course I know nothing is going to come from the MR anyway, I just have to go through this humiliation to get to the actual tribunal. Who, judging by what everyone has said on here in the past, will almost certainly just take one look at me arriving in my wheelchair and my doctors' letters and judge that I do in fact need to use the chair to move around and cannot walk safely, promptly, in a reasonable time and whenever I need to. I can't do any of those four! Before I got the chair I frequently collapsed and had partial dislocation injuries, and was trapped on sofas and beds anyway.
    Now they close in 30 minutes... and I'm still on hold. Ugh. My heart rate's racing at 130 BPM. Why do the DWP make us go through this dehumanising process :( I can't listen to Vivaldi anymore without getting triggered because of these wait times. Normally I have friends who can help me by being on hold for me and then handing the phone over when they answer, but I've not had any such luck in the last couple weeks... so I just have to have a sustained panic attack while I wait for someone who doesn't even want to be there to take my call and listen to my reasons I think the decision is wrong.
  • roboticfelidroboticfelid Member Posts: 8 Listener
    20 minutes until they close now.... gulp. I really hate my executive dysfunction. I've been meaning to do this phone call since the start of this week. It took me all day just to feed myself once on Monday, then I slept all through Tuesday, woke up very late on Wednesday, tried to do this call on Thursday but couldn't bring myself to open the mail (which is required to do the MR, since I have to know what I'm challenging).... and now I'm here. I often end up sleeping for 24 hours or more, which really makes these 2 weeks of ability to react more like 1 week, functionally, in terms of time available to consciousness. And the disordered sleep also makes me awake completely outside of their opening times half the time too. Even non-disabled people who work for orgs meant to help people through this process will tell me "they give you a whole month", even though the letter doesn't arrive for two weeks after it gets posted, and even if I did actually have that "whole month", it's actually far less time for lots of disabled people than it is for everyone else. Hell, I often take a month to open up things I had to order on Amazon for the house. People just do not understand how long it can take us to do things, and consequently how  damn patient we have to learn to be. :(

  • roboticfelidroboticfelid Member Posts: 8 Listener
    edited April 2019
    I've finally been answered! After only an hour on hold
  • roboticfelidroboticfelid Member Posts: 8 Listener
    I pretty much read out all the kinds of objections I had written down here. The lady on the phone apparently ran out of space in the box on her computer and had to cut down on the details. It's very frustrating that they don't even give enough space for all the ways they overlooked and minimised difficulties. She started saying things like "is that all?" and "and the other thing?" even when we were only half way through.
    I had noticed that the DWP never contacts my doctors about anything and she made it clear on the phone to me that that is in fact policy. Which is extra frustrating because all my clinics have policies that they have to be contacted by the DWP first before they release any personal information. Like at the psych clinics, at the wheelchair clinic, and so forth, I had asked if I could have any sort of letter outlining why specifically they've prescribed me what they have, rather than just my ability to show that the wheelchair clinic did call me in for a collection and fitting appointment. And they said they would have to be contacted by the DWP first. This is apparently quite old policy, so I can only imagine it dates back to DLA, when they did contact clinics. The lady on the phone said that they explicitly don't contact anybody anymore to save money, and that it's up to me to provide all the relevant info that I can. And I have provided proof of all that I can, but that is still very wide-strokes with me having to point out the inferences and cross-references of my capabilities and so forth. Which is very exhausting and frustrating. If only they actually contacted doctors, or if the clinics had just let me have their assessment of my needs for my records.
    As I had expected, she sounded overall very bored and frustrated at having to take down such details, and apparently frustrated at the artificial limitations on the DWP's database as well. My heart rate still stayed above 120 the entire time I was on the phone, and it ended up taking me about 30 minutes to actually communicate all of my issues to her. I'm almost certainly going to be nonverbal for the next few days because of this. Damn it.
    I get the suspicion from the tone of her voice that she didn't believe me about my reasons for going nonverbal and so forth either. There apparently wasn't enough room to go into how the intersection of my conditions mean I regularly misinterpret people's moods and insinuations either, though I did make that clear in the original assessment for sure. And I had made sure the assessor wrote it down. (Of course, there's no way of knowing what she removed in her final-draft process after I had gone..)
    I kept bringing up how things were being omitted or overlooked, and irrelevancies brought up (such as having upper body strength, when I never said I lacked it) to kind of sidestep the whole issue, but I have no idea how she really wrote it down.
    Ugh I hate this. At least it's over and done with anyway.
    I suppose it doesn't really matter how accurately she conveyed my issues with the final decision if I'm expecting the MR to uphold it and have to go to tribunal anyway. My experience with tribunals in the past has been that it felt a lot less interrogatory (ironic since it's.. yk, a tribunal) and much less nitpicky than the DWP's own procedures anyway.
    And I know that a tribunal will hear me say that I gave all of the hard copies of information that I could, but a lot was withheld by the clinics pending contact from officials, and go through me joining the dots and so forth, with much less "well but we can only decide based on the evidence you provide us" type covering-themselves the DWP do. Like, the only paperwork I have for WESTMARC is that I had a general appointment, followed by a specialist assessment appointment, and then a pickup/fitting appointment; coupled with the fact that I have a very expensive manual wheelchair (as mentioned at first, the Quickie Argon2) and that they don't just give these wheelchairs to anybody for anything. It would be so much easier if I had a piece of paper from them saying that I cannot walk because of the chronic pain caused by my EDS and that's specifically why they gave me a wheelchair. But from what I hear of tribunals and my experience with one in the past (which was only decided against me because they said they had to judge how I was 6 months prior, rather than in the tribunal itself) they seem to be more receptive to getting the dots joined together in that way. I can only hope so anyway.
    Because I was really hoping I'd be able to qualify for Motability out of all this. I use up all of my stamina just going to and from a train station, I can never actually do anything fun right now. I have to keep a close eye on my ""steps"" on a Fitbit (which is also how I know my heart rate) to put an upper cap on my activity, lest I become unable to even get out of bed or move slowly around my flat in the chair if I do too much. But if I qualified for Motability I'd be able to use up that stamina.. around IKEA, or in a cinema, or going to a park, or any other such things. Instead of just trying to glean some small enjoyment from flowerbeds on the way to the train station or bus stop.
    But as it is, since they only gave me 10 points in mobility, that's out of reach. I'm honestly not too fussed by not being given the higher rate daily living – even though I and my doctors and the limited support I've been able to get from orgs such as CAB about this all agree I should qualify for higher daily living too –, it's really the higher rate mobility I want recognition about. Though of course I'm going to fight for everything I believe I should qualify for.
  • roboticfelidroboticfelid Member Posts: 8 Listener
    It's just so frustrating when you say plainly and clearly, "I'm autistic and can become nonverbal and need to use aids to communicate in writing when that happens. This happened during the appointment multiple times" and it's just like. "Okay so... why exactly are you saying you lose the ability to talk?". She said she had access to all of my files, so.. surely this was covered in the assessment notes? I saw that she had written down about all this when I was there, so unless she deleted it all the next day, I don't understand what the difficulty understanding us. It makes me feel like a fraud just because they have people not actually properly trained handling this stuff. It makes me question whether I really do lose the ability to talk, even though I know I do really. This is why it feels so much like gaslighting to me.
  • bracabraca Posts: 85 Member
    @roboticfelid there are a few members on the forum who are affiliated to the assessment providers IAS/Capita and will be able to explain more in detail why you did not meet the descriptors for PIP, All I can advise going by my own case is keep sending evidence relevant to your condition at time of F2F but in reality prepare yourself for the long haul of attending Appeal court were you will be given a fair hearing. my own opinion along with most other disability advice forums is that the whole system is flawed and not fit for purpose.
  • bracabraca Posts: 85 Member
    @roboticfelid I used to work as a Baker before ill health took over...can you please explain to myself what a FITBIT is and does it help as evidence when applying for PIP Benefit ? I did notice in your posts that you mentioned wheelchairs and having to navigate hills and this should help you get award as I myself live near to the Lake District and take part in local walks on some of the smaller hills and use my walking sticks for weight bearing but a bit concerned about my car as use my PIP payments to fund this and I really do struggle after walks and have to have baths and massage for few days after before recovery but not to same level as normal person as cant cope with most daily activities and not able to walk to local shops...any advice would be welcome...
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger

    I have reported your posts as a breach of forum T&Cs. I will leave it to the moderators as to any course of action 
    Be all you can be, make  every day count. Namaste
  • bracabraca Posts: 85 Member
    Well done @CockneyRebel without making excuses you and others have not taken into account my mental health and anger issues and are having counselling for, my next meeting is Tuesday and I shall discuss what has taken place on this forum with my councillor.
    Anyway what about roboticfelid and his/her MR problems that hopefully they have phoned DWP to registrar complaint.

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    @braca It is positive that you are having counselling for your anger issues, here on the community we have guidelines to keep it safe and supportive, you can have a read through them here. If we feel a member is breaking these guidelines then we can remove those posts. 

    Scope
    Senior online community officer
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