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How do you manage to work when you have disabled dc’s

(19 Posts)
Lovemusic33 Mon 14-Jan-19 15:51:32

I’m a single mum to two dc’s who both have ASD and some mobility issues. I have a part time job which fits around the dc’s but now I am earning over £130 a week I have lost my carers allowance. Although my job fits well around the dc’s I don’t really enjoy it and if I want to progress in the area I work in I will need to change jobs, to do this I will have to take a pay cut (at the moment I am self employed) meaning I would have to work a lot more hours to get the same amount of money. Money is pretty tight since losing the carers allowance and I feel guilty having to use the dc’s DLA money to pay bills.

I feel totally stuck because if I take on more hours and work full time I have no one to look after the dc’s during school holidays, there’s no clubs that will take them and they are too old for childcare, my youngest needs 1:1 and attends a specialist school. I have applied for respite but have been told I will only get it for one of my dc’s and it will be 6 hours a week during school holidays. I have no family that can help. So I feel stuck in my job with no way to progress, getting help in the way of beniffits to pay my rent (small amount).

How does everyone else manage?

rainbowbash Mon 14-Jan-19 16:06:22

you can still claim carers allowance even if you earn above the threshold. Just pay into pension or increase your pension contributions. This makes only sense of cause if you don't earn massively above the threshold. I always wonder why not more people do it

rainbowbash Mon 14-Jan-19 16:20:51

sorry, Just saw that you are self employed. No idea how pension works in that case....

as for full time work - I only know of 2 mum's with children with complex needs who work full time - they both have family helping out day in day out. I don't really think it is achievable if you don't have a strong support network..

I work, very part time in school hours only. I have a job, no career. I have resigned to the fact that this is as good as it gets for me (DC has ASD and severe LD). I count myself lucky to have any job.

Lovemusic33 Mon 14-Jan-19 17:07:56

rainbow I’m only £10 above. Can you recommend a pension plan, I had a look and it’s all confusing? I sent all my paper work into carers allowance and thought I was under after all my outgoings but they have stopped my payments.

I have applied for another job that states ‘flexible hours’ but it means taking a pay cut.

Fairylea Mon 14-Jan-19 17:08:45

I can’t manage working. It’s just too much for me with the needs that ds has.

Please don’t feel bad about using the dla money for household bills etc. It’s there to benefit the child and if the bills are paid and the house is a better place to be then that benefits the child, that also includes replacing the lost wage of a carer.

rainbowbash Mon 14-Jan-19 17:30:25

sorry love , I have always been an employee and just joined the company pension scheme. surely there must be some sort of pension for the self employed too?

Alternatively, of you are self employed, can you reduce the hours you work a tiny bit so you slip into the CA earnings bracket? do you claim all taxable allowances?

rainbowbash Mon 14-Jan-19 17:33:58

I also think it is pretty standard to use DLA to pay the bill/mortgage. bringing up a child with SN usually comes with a huge pay penalty so that using DLA for covering the bills is normal (at least in my circle of non-well off friends).

Lovemusic33 Mon 14-Jan-19 17:54:44

rainbow I only work 9 hours (the pay is really good) so cant really reduce anymore, there’s no extra hours unless someone calls in sick.

I live in a HA house and I have right to buy, would love to eventually buy it so the dc’s have something when I’m gone but at the moment it’s just impossible to not be claiming beniffits. I worry what will happen if the dc’s stop getting DLA, dc1 moves over to PIP next year.

BlackeyedGruesome Tue 15-Jan-19 12:54:59

DLA is supposed to be for the benefit of the child. Children need to eat and be clothed and be housed. Paying for extras works if there is money, but what good are extras without food.

April2020mom Tue 15-Jan-19 16:30:20

I recently applied for DLA for both kids. My two have physical disabilities. Fortunately my partner is willing to help babysit the kids during the day. I returned to work six months after giving birth. I’ve used DLA to cover the costs of childcare and vacations. We split up the appointments and therapy sessions as well. He oversees any therapy sessions while I drive DS to doctors appointments. It helps that our church family are also happy to provide childcare on a as and when required basis.

Lovemusic33 Tue 15-Jan-19 16:41:31

My ex has only ever been to one appointment, he actually came to watch dd2’s school play this year, it’s the first time he has been to her school. He used to look after them when I did a evening shift but then started making excuses that he couldn’t do it certain weeks. My mum used to help but she’s now very poorly.

Dd2 is very destructive so most of her DLA money goes on replacing things and on days out (when she’s out she can’t break anything), DD1 misses out on a lot and her DLA goes towards bills, I try and arrange activities for her and she has friends over so the money goes on ordering pizza so she can socialise. The loss of the carers allowance has made things a bit tight, £60 a week is a lot to lose and just feels wrong as I only work 9hours and still care for 2 disabled children.

PickAChew Tue 15-Jan-19 16:48:05

Are you getting all the tax credits/ UC that you're entitled to?

Lovemusic33 Tue 15-Jan-19 17:28:55

Yes, I’m not on UC yet, I’m hoping when I switch over they will realise that I am entitled to carers allowance so I might be better off.

Fundays12 Tue 15-Jan-19 19:04:44

I have a child with complex additional needs and had to give up working during the week as school holiday care was nightmare even the additional needs holiday club couldn’t cope with him. I only work one day a week when dh can be home so earn below the threshold so can claim carers allowance. We are not hugely better of me working but it allows me to keep gaining skills and paying into my pension etc.

Lovemusic33 Fri 18-Jan-19 10:43:39

I have applied for a couple jobs today but I have no idea how I’m meant to fit it in around the dd’s, these jobs state ‘flexible hours’ but then states ‘must work some evenings and alternative weekends’, that’s not really flexible? I just can’t find any part time jobs olnine, I live in a rural (ish) area so it’s hard to find work let alone just a few hours a week during school hours sad.

rainbowbash Fri 18-Jan-19 18:27:27

I have applied for a couple jobs today but I have no idea how I’m meant to fit it in around the dd’s, these jobs state ‘flexible hours’ but then states ‘must work some evenings and alternative weekends’

I dont think these jobs are doable if you you have children who cannot be left unsupervised and you don't have a tight support network.

Your best bet is IMO to keep and eye on your local council jobs - my area has a dedicated website where nearby councils advertise jobs. There are always a few part time/term time jobs going - often in schools (from support staff, to catering staff to admin). they aren't easy to get and not that well paid but often your best bet if you need to work around children.

Lovemusic33 Fri 18-Jan-19 21:46:35

I want to do the work I am currently doing as it’s a job I am pationate about, I wouldn’t want to work in a school.

I want to be able to work my way up thin the field I am already in but it’s almost impossible. I have found a job that’s local and I will call them on Monday for an application form, I will be taking a pay cut but because it’s working through a agency there room to work my way up (unlike where I work now). Ideally I just want to work 3 hours a day as I can leave my eldest dd looking after the youngest for 3 hours if I am local. My eldest has Aspergers and some physical disabilities but is sensible and will watch her sister for a short period of time whilst I work.

anniehm Sun 27-Jan-19 14:46:16

I have never worked full time but I'm married so it's less of an issue - list a few jobs because of being called by school constantly before finding an amazing employer. Dd often comes with me even as an adult as she's not keen on being home alone - I get her to help me do filing!

For a pension any of the big providers can help you get below the carers allowance threshold. As for pip, good luck - message me if you need help, been to appeal for us and helped two others also win.

Lovemusic33 Sun 27-Jan-19 18:33:23

Thank you annie , I had a letter yesterday to conform my cares allowance has been stopped, now I have HB questioning me because cares has stopped so I need to call them tomorrow. I’m only a few £ over so it’s worth me paying in £10 a week into a pension to bring it down, I will reapply for cares in April when they change the amount you can earn to £130. Things are pretty tight without the carers allowance.

I put my CV online and have had 3 people asking me for a interveiw but the work they are offering is either too far away or too many hours (long shifts), I’m lucky I work in a area that is desperate to employ people so there’s always work there, it’s just finding something that I can fit around the dd’s, I might just have to wait another year of so.

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