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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Universal Credit wanting to find more work while taking care of immunecompromised child.

10 replies

Nindaelita · 22/02/2023 01:40

Just want to know if I am being unreasonable to think this situation is bit bonkers.

My child was diagnosed with an inflammatory eye disease last year, this progressed into chronic illness and now my child has glaucoma. She has been in steroid and eye pressure reducers for over 9 months straight, and 3 months of immunesupressants. Because her condition just doesn't subside at all not even with medication I spend now maximum 2 days a week at the hospital for eye monitoring, changing of medication, tests, blood tests etc. This of course has been taking a deep impact on my child's mental health, so she has been more dependent on me than ever, so her nurse and her school have referred her to psychology service. My child is 12 and just had surgery to one of her eyes waiting to have on the other to reduce eye pressure which btw is extremely high and we all know what that can lead to. Yes blindness. Due to Dd needs becoming more predominant I've decided that it was finally time to fill a DLA form, which took me a long while.

I work on a 0 hour contract, mostly school hours, it's quite flexible work and up until now my manager has been understanding of my situation.I still don't know if I will keep the job tho since eye surgery recovery is 1 to 2 weeks and I've run out of holiday days to cover. However since I have to skip so much work I am not earning what I'm "suppose" to, so Universal Credit contacts me and asks why this is happening. I explain everything clearly to the lady to which she replies, "well you still need to look for work for 34 hours a week, with no dla and no carers allowance you need to still fulfill your commitments"

So... When I'm not at work, I am at the hospital, when I'm not at the hospital I'm at work. My dd is at school, and when school finishes I have to collect her and take care of her and her needs. If she is not at school it means she is at the hospital. Mind my dd medication atm is taken 14 times a day! What crazy employer is going to hire me right now? 34 hours a week looking for a 35 hour job? In my situation?
What am I suppose to do?

DLA forms take long to process, and I beleive mine will, I wrote a full 10 page detailed explanation of my dd needs, with plus 17 pages of medical reports, currently waiting on a EHCP decision.
Only with a positive outcome I'll be able to fill for carer's allowance and that takes time too. So....

What should I do if they penalize me if I don't look for work? What then?
Doesn't this expectation seems bit out of order? I just don't know what to do.

OP posts:
MrsKippling · 22/02/2023 01:53

Sorry to hear about your daughter. It all sounds very stressful. Could you ask your GP to sign you off work so that they can't force you to look for work? I know that they accept fit notes for 3 months before it triggers an assessment. From what I understand you wouldn't be expected to look for work whilst you are signed off, or it least that's what happened with me when I first became unwell.

Take care of yourself and I hope your DD starts to see some improvement with her surgeries and you're not waiting too long to hear back from DLA.

Maddison12 · 22/02/2023 02:55

Great advice above. I would definitely contact your gp, if you explain the situation and how stressful you're finding it, you should be able to get a fit note. You can add these in your online journal straight away and won't have any work commitments until the fit note runs out or you get a new one.

UC can be unfair at times, unfortunately everyone seems to be tarred with the 'piss taker' brush. It's definitely out of order but try not to take it personally. Really hope things get better for you and your daughter soon.

JustKeepBuilding · 22/02/2023 09:06

The work coach can turn off or reduce your UC commitments even without being you classed as a carer.

Just so you know you can be classed as a carer for UC before the carer’s allowance is in place (you don’t actually have to claim it (although you should) or be eligible for carer’s allowance to receive the carer element), so there won’t be the wait for carer’s allowance to be sorted as well as DLA.

Where are you in the EHCP process? Are the LA sticking to the timescales?

Have you had social care assessments?

Original poster
Nindaelita · 22/02/2023 09:07

MrsKippling · 22/02/2023 01:53

Sorry to hear about your daughter. It all sounds very stressful. Could you ask your GP to sign you off work so that they can't force you to look for work? I know that they accept fit notes for 3 months before it triggers an assessment. From what I understand you wouldn't be expected to look for work whilst you are signed off, or it least that's what happened with me when I first became unwell.

Take care of yourself and I hope your DD starts to see some improvement with her surgeries and you're not waiting too long to hear back from DLA.

I didn't know that was possible, even tho I'm not the one unwell?
However 3 month wouldn't cut it, we've been on this new normal for months now and each eye surgery has a follow up of 5 months. It's a never ending of hospital appointments :(
Thank you for your suggestion I will look into it.

OP posts:
Original poster
Nindaelita · 22/02/2023 09:18

Maddison12 · 22/02/2023 02:55

Great advice above. I would definitely contact your gp, if you explain the situation and how stressful you're finding it, you should be able to get a fit note. You can add these in your online journal straight away and won't have any work commitments until the fit note runs out or you get a new one.

UC can be unfair at times, unfortunately everyone seems to be tarred with the 'piss taker' brush. It's definitely out of order but try not to take it personally. Really hope things get better for you and your daughter soon.

It was all very insensitive in my opinion. Especially when I was asked to go to a meeting right after my dd surgery. I was perplexed looking at this lady and said " ... so how... am I suppose to leave my only child at home alone after eye surgery to come here? " Because I kept saying the "wrong" things she wanted to ear, I could feel her getting annoyed so the lady was quick to ask for proff for what I was saying which I have tons no problem with that.

Am I wrong to think this kind of treatment is at all apropriate, I understand they need to follow orders and certain rules but shouldn't they be abit more lenient?

OP posts:
Original poster
Nindaelita · 22/02/2023 09:29

JustKeepBuilding · 22/02/2023 09:06

The work coach can turn off or reduce your UC commitments even without being you classed as a carer.

Just so you know you can be classed as a carer for UC before the carer’s allowance is in place (you don’t actually have to claim it (although you should) or be eligible for carer’s allowance to receive the carer element), so there won’t be the wait for carer’s allowance to be sorted as well as DLA.

Where are you in the EHCP process? Are the LA sticking to the timescales?

Have you had social care assessments?

The EHCP was just proposed last Thursday when I had a meeting with dd standards leader, they will let me know the progress as well as with the referral to psychology service. I am all new to this so I have no idea how it works. Haven't had social care assessments. But at the meeting we agreed upon alot of help that school will provide for my dd when she is well enough to go again.

OP posts:
JustKeepBuilding · 22/02/2023 09:38

Have a look at IPSEA and SOSSEN’s websites for information about the EHCP process. Make sure the EHCNA request is submitted ASAP or you can do it yourself - IPSEA have a model letter you can use. Then the process is governed by statutory timescales. The LA must inform you whether they are going to assess within 6 weeks.

You should ask for social care assessments. A carer’s assessment for you and an assessment via the disabled children’s team for DD. On their website Contact have model letters for both.

Napmum · 22/02/2023 09:44

Make sure you apply for everything now. Then tell job coach that you are applying for carers and dla. I think if you are applying they'll stop hassling you.

If they don't then ask to speak to someone more senior. I think they have a disability specialist now (according to a friend)

Original poster
Nindaelita · 22/02/2023 10:47

JustKeepBuilding · 22/02/2023 09:38

Have a look at IPSEA and SOSSEN’s websites for information about the EHCP process. Make sure the EHCNA request is submitted ASAP or you can do it yourself - IPSEA have a model letter you can use. Then the process is governed by statutory timescales. The LA must inform you whether they are going to assess within 6 weeks.

You should ask for social care assessments. A carer’s assessment for you and an assessment via the disabled children’s team for DD. On their website Contact have model letters for both.

The teacher requested the EHCP. Should I do another one then?

OP posts:
JustKeepBuilding · 22/02/2023 12:00

If the school have already formally submitted an EHCNA request to the LA that’s fine, but if they haven’t actually formally submitted a request yet then yes, you should request one yourself. Some schools say they will apply but take a long time to actually submit the request to the LA.

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