Newly disabled parent and no clue what to do.

[Cloxs]

I’m newly disabled by Long Covid. I am unable to manage much at all at the moment. I am not able to work (NHS staff) and I’m really struggling to look after my 2yo and very much dependent on parents and childminder. However I’m on the precipice of losing my job, and we can’t afford childcare if I do. I can’t see any obvious answers on how we might be able to afford anything - my partner is the sole earner and our mortgage is about to double and we already are strapped with my partner and my wages as it is. my parents are elderly and can’t do it much longer.

It was supposed to be a short term thing but I am thinking this is not how it’s going to look now I’m 11 weeks out from Covid.

I have nightmares about my daughter being put in care and I’m terrified to contact social services. I am so angry with my body for this. I feel like a total waste of space in that I can’t walk more than 100m without wanting to collapse.

does anyone know if there is any way for disabled parents to get childcare assistance? I have applied for PIP and will apply for ESA when I have officially lost my job as well.

I was disabled after having my child. Pregnancy triggered an autoimmune condition which was thought at the time to be Rheumatoid Arthritis (years later I was rediagnosed with something v rare)

I was the main earner, our house was bought on the strength of my salary and DH was meant to be a SAHD.

I couldn't even cope on maternity leave as I couldn't lift the baby. My parents did help as much as they could but it was too much for them.

I did get benefits eventually but they all went on the mortgage of our negative equity house. Along with my DH salary

In the end we contacted SS as we couldn't cope. DH was working a 5 day week in 3 days to help at home, plus studying for exams to get a professional career.

They were brilliant!!!! They organised for DC to go to a childminder who lived close to us. DH was able to return to normal working hours and not be completely exhausted. They kept us on this until DC was 7 and able to be safe in the house even if I was only able to lie on the sofa and watch tv with him until DH got home.

I know they get a bad reputation but SS saved our family.

Hopefully you will find a solution and maybe even recovery. 11 weeks feels like forever but I have heard of people recovering from the aftereffects. A hard hitting virus can really knock you off your feet and as with everything it takes time to heal. The added family and financial pressure just make it seem all the worse.

Would it be possible to take a mortgage break for a few months to take that pressure off. It will get added to the end of your mortgage term but might make you feel a little better to not feel so much like you are sinking.

The feeling you have now are awful and I wish you some peace, you'll get there...its just a bumpy road xxx

@RichTeee i can’t thank you enough for this information and knowing I’m not alone helps me not feel like such a failure. I don’t know anyone with any health concerns. I’ve been struggling since pregnancy but Covid has really really gotten me to an unbelievable place.

Was the childcare funded? I think we can look into a mortgage holiday - however the option of interest only is a bit more of a struggle as we don’t have much in the way of equity in the property.

to all the people who voted that I was “being unreasonable” - I hope you don’t have to ever go through this. Clearly you don’t otherwise you wouldn’t be voting that way. I’m wasting air even talking at you anyway.

@Cloxs mumsnet is extremely disabilist especially if "they" think someone is getting money from their hard earned tax paying money.
Most don't have the sense to realise that one day it could be them posting the same OP.
So don't worry about the YABU voters, they obviously have no sense of compassion.

Yes, SS provided fully funded childcare. We were able to prove to them that we literally had no spare money, we couldn't sell the house due to negative equity etc so I don't know if that helped. But it is worth letting them know. They aren't monsters and are there to help.

Ask away if you need any more help. It's tough when everyone else is living life abs you are just existing. It does get easier to cope with though...I promise

Sorry you’re going through this, I’ve had long covid since March 2020 and it’s no fun. There are lots of support groups out there who will probably be better placed to help signpost you. Parenting with chronic illness is a big challenge but manageable with the right support. I was well enough to manage a graded return to work after a few months (I was the sole breadwinner at the time so it was v scary) so I don’t know about accessing benefits, but citizens advice is usually a good starting point. You may well be able access 15 hours free childcare for example (not great but a start at least). I know it’s hard but please try not to catastrophise - it’s not your fault you got ill, it’s just shitty luck, and sadly lots of us are in a similar position. Everyone’s recovery is different but I was really unwell at 3 months then working again 2 months later.

I assume you’ve had lots of blood tests, but just in case, have you had your thyroid checked? Covid triggered hypothyroidism for me and I felt vile afterwards x

At 11 weeks after Covid in 2021 l could barely move but at about 16 weeks l gradually began to feel better and am back to normal now so don't give up yet. Surely if you work for the NHS they can't let you go and you get sick pay. I am in lreland so guessing the system is similar. Did you actually pick up Covid in work: surely they have some responsibility if you did..

Yeah clearly re the ableist mindset - bunch a dicks!!! I was fully functional with 2 jobs and a career before I got sick (postpartum)

thank you for all the information. We aren’t in negative equity at present and from work I know they often like you to have literally not a penny to your name before they’ll help you. Hoping I at least get PIP and ESA so that will help. And just prayers that I get back to my pre infection baseline, which was shit but was at least functional for most the day.

thank you again

11 weeks is really early. Why do you think that you will lose your job right now?
I work for the NHS and had long COVID on top of other health issues/disabilities .The first 5 months were awful but I did gradually recover back to my normal (which is still very far from normal but was able to return to my p/t job) although i've had other bad periods since then symptoms have flared up (eg after other viral infections/not pacing well)

Thank you so much for this @Aozora13 it really helps to know that others have experienced it. Every time I got Covid it’s been 6-8 weeks since I got better (my immune system is stressed and run down I think) but this time is definitely different. It gives me hope that just if I’m still really bad by 11 weeks it doesn’t mean it’s forever. Thank you

@Asparagus1 Ive had a lot of bloods done - like even weird autoimmune markers and lyme and ebv - it’s all negative at the moment apart from high IgG but that’s been apparently cause I’ve had a recent illness. Might ask for thyroid again but I think my GP thinks I’m a total hypochondriac

@junebirthdaygirl i was off for 5 months due to already having quite bad burnout and anxiety (from Covid round 1 I think, but also stopped breastfeeding at the time so I don’t know if my body has crashed) and I was on a phased return. My manager has been a total asshole and even though I set up a new service has made it pretty clear that if I go off long term again I’ll trigger a final stage review. May not mean getting sacked but gearing up for that.

@Blanketenvy oh really? I’m so sorry to hear that and I’m in similar position (see above paragraph). My manager is being awful about it and I’ve taken my 6 months full pay entitlement and I kinda feel like I’ll be bullied out. The way I’ve been discriminated against is disgusting and the way that it’s not linear means shit all to them apparently. Maybe you could give me some pointers on how to deal with it? I contacted Unison and the rep wasn’t very hopeful and said it’s down to “service need” at the end of the day and if I can’t do my role fully then it’s not reasonable adjustments. I’m a band 6 and been with the trust for 8 years now.

One question I was wondering was do you have life insurance with your mortgage? Some life insurance providers include critical illness cover, and some banks insist on it for big mortgages.

Same question for your bank account, any other insurance policies etc etc. If your head is too foggy get your husband to really sit down, write a list of what you have, and read through the terms and conditions.

@Namechangedforthis2244 ill definitely check it out. Thank you.

Disabled parents are entitled to help to carry out their parenting roles, so definitely speak to children’s or adults social care. Of course they wouldn’t remove your child if help with some childcare was another option to enable you to parent them so try not to worry about that.
the thing will be whether you’re eligible or not.
but definitely contact them.

In order to claim PIP for anything, you need to have been experiencing serious difficulties for at least three months at the time of claim and expect them to continue for at least a further nine months. You may not qualify yet, certainly not without an official diagnosis and some sort of medical evidence. A lot of people are self diagnosing Long Covid on their disability benefit claims currently, and by doing so affect the chances of those genuinely suffering from it

To claim contributory ESA you will need to have made appropriate NI contributions for the last two consecutive tax years. Don't be fooled by the gov.uk checking facility, it is often wrong and people just get offered a credits only ESA claim which is generally of no use

You may be better off claiming UC, declaring your health condition immediately and uploading Fit Notes. Then after a short period of time, UC will send you a UC50 form to apply for the Limited Capability for Work and Work Related Activity or LCWRA element. If successful in claiming this, and people often find this easier than PIP, you'd get an extra £400 odd element added to your UC claim. If you do get a PIP award, you could also say that your husband cares for you and have the Carer element of around £170 monthly added to your UC claim. His earned income would probably disqualify him from claiming Carers Allowance and as it is an overlapping benefit it would be deducted in full from any UC award anyway

A person in receipt of the LCWRA element of UC is eligible to claim childcare costs after any free childcare hours have been utilised, from any OFSTED registered provider. The PP advice about Social Services is gratifying to read, so they may be a useful resource for you. Remember though, that no element on UC is protected

You need to speak to social care. They aren5 going to be interested in taking your child away. They probably won't be interested at all but worth pushing for support

I wondered are you eligible for the 2 year olds funded childcare given your disability and your application for disability benefits? Maybe you will need your Pip claim to come through in order to apply for this? Have a Google to check on this.

I have a disability and I understand what you say about the difficulties and I would imagine the very high exhaustion levels caring for a 2 year old. Some people may find this hard to fully understand.

Also your health visitor may be knowledgeable on local sources of childcare support and funding hours?

I am in a similar situation but no partner.
when you say they arranged child minder do you mean they put you in touch or they funded it? Hope you are doing okay now x

I became suddenly disabled witg similar condition when my son was 2. I wish I'd known sooner that you can self refer to adult social care for an assessment for direct payments. This can fund a PA who can support you to be the active parent you wish to be; or do household/ child related tasks that you can't manage. It has been a complete game changer for our whole family. The social workers have been so empathetic. I would recommend you self refer to adult social care for this support!

thank you for your message, it’s given me hope..
i have self referred to adult social services before but nothing happened. My child is 2 but my problems started during pregnancy and it’s 2.5 years on. Struggling. It makes me sad to think I am disabled and I can’t look after my children as well as I could before it all changed

If you were entitled to Universal credit then I'm pretty sure if one parent has been awarded LCWRA ( the highest outcome of the work capability assessment) and the other parent is working then you can claim help with childcare costs., so may be worth looking into whether you are eligible.
I don't want to sound negative but I wouldn't hold out too much hope for being awarded PIP given that the criteria of claiming PIP is that the condition and difficulties are expected to last another nine months at least from the time of application. I'm not sure how you can ever know how long a post viral condition is going to last but as others have said on this thread, they started to improve after 3/ 4 months. Obviously some do take longer to recover. I'm not sure how they judge the probability tbh.

I know very little about Long Covid or PIP, sorry, but I'm wondering what role you do in the NHS? I have a friend who is disabled by mental illness and has had multiple, very long periods of sick leave. She now thinks she is unlikely to be able to go back to work in person but her surgery think they can adjust her job so she works permanently from home, doing phone appointments and paperwork. She is a GP. Could your HR enable at home working to be an option for you?

Try for PIP by all means, but I honestly don't think you meet the initial criteria, so it's up to you if you want to pursue it. You can do if you have full GP notes supporting you going back the last few months and recognising your condition as long term for at least the next 9 months I think. It can be a brutal process.

I'm not sure about UC and having a working partner. Even then they'll make you jump through hoops before they say eligible for the support group. Unless that's just my experience.

Definitely reach out for Adult Social Services. I've received some help via the council and asked for more but it never happened. I should push for more, but never get to it 🙄

Check out what you’d need to get retired on ill health grounds. A friend of ours was retired from the civil service very young and gets a civil service pension. If you genuinely cannot work and won’t be able to for the future it is worth exploring.