UC, studying and work

MariaJ83

Hello,
I have been assessed as limited capability for work 1.5 ago and its ending soon. Last September I started full time undergraduate studies. I have 2 children and disabled husband. I have PIP awarded before I started studies. I applied for maintenance loan so recieve deducted UC but I receive it plus they pay for my childcare costs. So far I have been left in peace but I received recently a message I must attend meeting in job centre regarding looking for work. Shouldn't that even happen? I do not have time or mental and physical capability to work. I mean my life is very difficult as it is with autism, two kids and suicidal husband. I am myself suicidal now after receiving this message. Why they require any work from me if clearly there's no way I can do any. Is this right or a mistake on their behalf? Is there a guidance on official govt website that can prove I am write and they are wrong and should leave me alone? I dont want to go through another work capability assessment, it was a hell for me. I dont have time or mental capability to do it due to all things I alredy have on my plate. Please help! Im desperate...

Albus_Scope

Hi there @MariaJ83 and welcome to the community.

Can I just confirm you're getting LCW (limited capability to work) and not LCWRA (limited capability for work related activities)  as the two are different.  If you're in the LCW group, you will still sometimes be expected to go into the job centre for interviews, whilst with LCWRA you wouldn't.  Please note this wont mean they're wanting to reassess you, it's just a standard job centre chat to see how you're getting on. 

Can I also ask, do you have people there to support you? Or a GP to talk to about everything you have on your plate? 

MariaJ83

Thank you for your reply @Albus_Scope
I have LCW. The reason for a visit is "attend your work Focused interview in a job centre. This is to check what you've done to increase your chances of getting work or earning more. We'll agree the next steps and talk about any other support you may need." For me any social contact is source of stress and this one is just paralysing. I've been to that sort year and half ago and trying to explain what is happening with me, face to face, with someone who is not aware how to interact with distressed autistic person, was just traumatizing. I cant speak then, I shake, cry and just babble nonsense sentences. I avoid face to face human interaction at all cost. Going to university where I meet likeminded people and helpful kind tutors is already a lot to me. In job centre people aren't likeminded, kind or helpful. This has been always a terrible experience to me that needed week or months to recover from. I cannot allow myself to fall apart because I got children to care for, husband who is even in worse mental (and physical) state than me. This course (fine art) was my therapy, my future, my saviour. I am already struggling to balance uni and family life plus my own autism. I contacted you, my DSA support person (not sure what it is called, lady is from Clear Links if that says anything to you) but shes off on Sunday, and of course GP is closed today. So I havent had any help yet. Since I found out about this meeting (last night) I cant function. I already stuggle with executive functions due to autism and now I'm spiriling down in axiety, fixated they will force me to work meaning the only thing that keeps me afloat (studies) is taken away from me. If that happens I will not be able to cope. I tried suicide 1.5 year ago because of my mental state and going to college, then uni started healing me, I found my way, my salvation. Now i feel threatened that I will lose it all and eventually will end up in that horrible state of mind where I was 1.5 ago and orphan my children, or worse, because my daughter is suicidal too. There is too much at stake for me here. Life of 3 people depend on me being on these studies. And now they want to take it away... 😰😭😟

Albus_Scope

Please try not to panic too much, easier said than done I know.  I suffer from the same issues with face to face things (diagnosed with autism/possible adhd a year ago) and it'll take me a week to sleep things off, so I really do empathise.  Would a phone interview be ok for you?  I'm just trying to think of some solutions for you.  On your UC work journal, you should have the option of adding reasonable adjustments under the "Accessibility needs" so you could add in there "Phone appointments only, due to issues with social interaction (autism)" or similar,  then leave a note for your work coach asking if it could be via phone and explain why? 

The work focused interviews sound a lot more sinister than they really are.  They're basically there to help people work out what they want to do and ways to apply for jobs.  They won't be forcing you to apply for anything.
It's also worth asking if you can get a mandatory reconsideration over your LCW, as it sounds like you should be in the LCWRA group, which would mean they wouldn't ask you in for appointments. 

I understand you're hyper-focusing on this right now, are you able to do anything to try and snap your brain out, with a hobby or something similar? Maybe some painting perhaps?  I know how tough that can be though. 

MariaJ83

At this very moment I am with my 3 yo. This is kind of keeping me in 55% on the ground, I am there, he is drawing my attention, giving me toys to play etc. But 45% of my brain does the disintegration of my existence in the background of my head. So I am not at the verge of total disaster. Somewhere in my mind i keep telling myself I have to calm and normal for my kids. Your words of advice helped very much and I will do as you said although after such a long time from my assessment for work capability I dont think I have a right to mandatory reconsideration. If I am not mistaken the window was definitely less than a year, which has already passed for me. But i definitely will ask for phone appointment. Is there a possibility someone else can talk in my name? For example that lady from clear links? She is my DSA mental health support and knows well my situation and what mental difficulties I experience.
Ps: I thought you can be only either ASD or ADHD? Can you please explain how I can get diagnosis for ADHD because I see typical symptoms in myself but I always thought this just comes from "messy" mental state, anxiety, tiredness and brain fog and so on. For example, I come to toilet to pee, see unwashed mug my daughter left there, take it down to kitchen, see my sons toys on the floor, pick them up, not even noticing I forgot about mug i still hold in one hand or that i still want a wee, on the way to son's room see mail that just popped through a door, open it, bank stuff, must login, go to phone to login and end up 3h later finding out Ive done none job, made more mess, still hold a mug and toys in hands, and now I am close to wetting myself plus I haven't eaten yet today at all and Im exhausted. This is typical for adhd, isnt it? Or am I just autistic? I really never had anyone thoroughly checking me against possible mental disabilities. I diagnosed myself for autism by looking at what autistic people post about themselves on instagram. Then went to gp and said I think I'm ASD and she reffered me. Now I see exactly the same with posts about ADHD. Do I do the same way through GP? Just tell them I think I'm ADHD can i have a referral?
Sorry for so many questions. I am just so "not knowing anything" person. I am deeply appreciating all your help. Thank you so much!

Albus_Scope

I'm glad my words have helped a bit @MariaJ83, I've also popped you an email.

You can ask for someone to speak on your behalf if you have trouble speaking on the phone too, that's allowed, but you will need to leave a note for your UC work coach to get this arranged. 

As for ASD and ADHD, they can be had at the same time and often referred to as "AuDHD" which is what they think I have, but I am having to wait for the ADHD assessment still.  It sounds fairly typical ADHD behaviour in my opinion, but I'm not a doctor of course.  
  The road to diagnosis will always start with speaking to your GP and asking to be put forward for an assessment, though with current wait times, I'd recommend looking into Right To Choose, as this can knock years off the waiting time. 

And please, there's no need to apologise, asking questions is how we learn.  

poppy123456

LCW has no end date, it's ongoing until a new decision says otherwise. When you have LCW sometimes they will ask you to attend appointments at your local JOb centre, this will be for the work related activities. Although you're not expected to look for work while you have LCW. You can ask for a resonable adjustment for the appointment to be by telephone.

Please may i ask if your partner is claiming a disability benefit theirself such as PIP daily living or DLA mid/high rate care?

MariaJ83

@poppy123456 Hello and thank you!
I didn't know LCW has no end. I was told in one meeting I had in job centre in 2022 that mine is for 18 months and it's been exactly 17 months and 2 weeks from the decision till now.
About my husband, he is in worse state than me. He cannot communicate in writing, he avoids human contact and phone call is literally impossible for him. Not that there is language barrier, his english is good. Its the fatigue, physical pain, brain fog, depression and anxiety. Since he injured his knees in 2018 he was never able to make a claim for PIP because you have to call personally, he never passed this stage. Since then other conditions joined - non alcoholic fatty liver, back pain, hip pain, chronic insomnia . Even his gp or dentist appointments go through me, I call, I write, fill in forms, then drag him to these appointments and if necessary talk for him/instead of him. We suspect he is ASD too. He's got referral papers to fill in but lost it somewhere and he is avoiding gp like fire for last 2 years no matter how dying he feels. Just any social contact is too much for him. I can mask my autism if I represent someone else than me, I am then disassociated, so what I can I do on his behalf, I do, but many things you gotta do personally, like PIP call to start a claim. Plus i have my ups and downs so there are days, weeks, or even months, where even I cannot deal with anything because its too much. So to answer your question, no, he doesn't have anything at all, except LCW which I did all for him starting from requesting SAR in GP, filling in form, printing documents, and so on. He barely managed to go through assessment on the phone, but that was 18 months ago and since then his health, mental and physical, deteriorated so I dont think he would pass PIP at all because he would just agree to everything assessor would say just to finish the conversation asap...