Back to work on UC when you have disabilities etc - what happens?

[SingToTheSky]

Wasn’t sure if this is the right place for a thread. Sorry, it’s long! In short, I have been given an appt with the Universal Credit people and I think it’s to start looking at working again, I don’t have a clue what to expect so I would love some advice.

Background: I haven’t worked for a few years as I lost my job due to health (I have CFS fibromyalgia and PoTS). Just couldn’t keep going TBH, constant relapses. Once I stopped I got a lot better, focused on getting the DCs’ needs sorted and did some tutoring for a while.

Since 2019 though life has been a total disaster when DH suddenly became unable to work (other than very part time from home) due to conditions that will only get worse. We have basically been juggling a chaotic life (2 autistic older DCs - one still home educated due to his needs - and a now-3yo) around who is struggling more at the time. Mental health through the floor etc. I am autistic/ADHD too.

We got put on UC late 2019 and I asked at the time about work, they said I wasn’t expected to until little one was 3 (or maybe 3.5? She’s 3y5m now). I asked if they knew any organisations/colleagues who’d help people with disabilities find suitable work as it would give me something to start working on. They didn’t know anyone and gave me a booklet with adverts like meals on wheels?!

Since then I’ve worked a lot on my MH (including getting the ADHD diagnosed - medication is helping) and basic fitness. In lockdown I got back to studying small qualifications and have just started training for a volunteer role. I found myself an autism charity work coach who has been helping me make plans and get some confidence back. I’m restarting OU in autumn having had to also stop my degree when my health declined. I got some tutoring pupils lined up for after lockdown. I don’t want to write myself off at 34 and I have plans in the long term that I can clearly show I’m working towards, but I am also really keen to have an actual job NOW. I feel utterly useless and consumed by daily life at home. My mum told me I shouldn’t look for work now because what if I need to care even more for DH in future - to me that just means I need to do what I can now. I need a life.

But what I’m worried about is my health obviously. I have no idea what to expect from the system now I’m not meant to be home with a toddler anymore. DH is on ESA but I’m in that middle ground where technically I am capable of stuff like retail - so I think they could push me towards that, and that presumably means they could sanction me if I don’t do it? But experience tells me I can’t manage jobs like that in the long term because of the relapses. I don’t think full time would be in any way possible either. I’m not qualified for anything. I don’t want them to think I’m not engaging with it or that I’m being fussy about getting some perfect job, I want to work, but I don’t want a job that will make me ill again.

Thoughts please?! 💐

Hopeful bump

Age 3 or 4
You will be expected to work a maximum of 16 hours a week (or spend 16 hours a week looking for work). This might include some training and work-focused interviews. You should let your work coach know as soon as you accept a job offer, as you can claim support for your childcare costs for at least a month before you start work.

Age between 5 and 12
You will be expected to work a maximum of 25 hours a week (or spend 25 hours a week looking for work). This might include some training and work-focused interviews. You should let your work coach know as soon as you accept a job offer, as you can claim support for your childcare costs for at least a month before you start work.

Do you claim pip? Does your husband claim pip?

Do your children claim dla?

If yes to husband and children, you could claim carers allowance which would give you breathing space.

Hi lizzie thank you so much for replying.

16 hours seems doable, so the reassurance on that is great!

Re PIP it’s actually just me that gets it - but I’m renewing it this week and I have a strong feeling it’ll get reduced or even stopped if I’m unlucky, I have made some improvements over all and I’m pretty sure I’ll lose the mobility element (and thus my bus pass).

We applied for DS but were refused and we were having some help to reapply while we were on an early help plan, they actually said it was one of the best forms they’d seen . Then covid happened and our EHP closed so we are on our own again with all this.

DH should get it I think but because he pushes himself to do a lot more of the housework etc I am predicting a battle there. He currently has “underlying entitlement to carers allowance” for me, but doesn’t actually receive it due to getting ESA.

If I had say 2 hours a week total piano teaching (lessons are usually half an hour) would that mean they could only make me find another 14? Or does it not count if self employed. Obviously it’ll all be recorded again.

You'd have to be making minimum of minimum wage @16 hours for self employment to be accepted now that floor levels apply. So you'd receive less uc than if you were employed if you don't meet this minimum, given your business is obviously been going for some time.
However, if you earned more than equivalent of 16xmininum wage they'd not expect you to still be job hunting for the other 14 hours.

Re oh pip, get the form completed based on worse days not best.

Appeal re dla if not too late or reapply if more than 6 months ago.