To think I just can’t work right now? Special needs

[ShannonKnocks9]

DS has been deemed suitable for a special needs school. His needs are now quite complex and he’d be better there (it took time to come to terms with that).

Anyway, the special school he’s been offered a place at only offer his age group the hours of 9am to 12.15pm, 5 days a week. Term to only of course as it’s a proper school setting of sorts, not like his private nursery.

I’m currently on maternity leave but my job is part time, 3 days a week from 9am to 3pm. I can’t work from home with this (it’s Hospital based admin type role).

The following September (2022), DS would be going normal school hours, something like 9am to 3pm.

My issues are as follows -

My current job won’t change hours wise, it can’t. And I’m hard pressed to reliably find a job with the hours to work around his special school.

The nursery is the only real special needs school for a big stretch. We’ve recently moved after separating from H to a lovely little area. But even so, the local special school is over 40 minutes drive away, the same one he would’ve gone to at the old house. So even if I could get a job with very small hours, I’d not qualify for any working tax’s credit if under 16 hours. And I have to actually drive home after dropping him off.

H won’t help. I won’t go into this too much but he just won’t. So no help there. Weekends nobody will have him, and I live miles away from my own family. Not an option to move closer, and their local special needs support isn’t very good.

Am I just going to have to pack my job in and look for something term time only once DS is in school properly, 9-3? 😔

Unfortunately childminders are in short supply here too and none I’ve contacted have been interested in looking after a disabled child. Completely understandable but still makes things even more difficult

What would you do? If I give up my job I’ll lose my working tax credits (we are still on that and not UC).

@ShannonKnocks9 by you do you mean you yourself or your child?

Although not statutoty school age, you might be able to get help with transport, worth contacting SENTAS.

I think in our area the LA has SEN holiday clubs that can be accessed via Short breaks so worth a check there.

Also I think you can use parental leave in a different way when you have a disabled child, but obviously it's unpaid.

I have had periods of working and not (2 with SN). I think in your situation it's worth exploring all the avenues to see if you can eek it out, but if it's not sustainable then it's just not.

@ShannonKnocks9 if you claim pip it’s not the pip itself that stopped your transitioning. You must have a severe disability premium within another benefit such as income support or housing benefit.
If a claimant claims wtc and ctc and pip but no other benefits then in your situation they would still be moved to UC. That is because claiming UC doesn’t affect pip but it does stop severe disability premium . However to get the severe disability premium you have to be the only adult in a household who is disabled.

MyDC I’m worried there’s been some mistake by them then, because I didn’t claim housing benefit or income support whilst claiming tax credits and living separately in the same house as separated H

How old is your son? Are they offering an assisted nursey place or a formal school place (over the age of 4?)
If it's a formal school place, I am wondering if it's even legal to run those hours; according to statutory guidance, schools need to offer 380 sessions a year for educational purposes and can only vary them for limited reasons (e.g. settling in).

Does the school offer any form of paid wrap-around care? Another option may be to speak to the council SEND service, to see if they can advise of any providers or childminders that can assist.

If you can't take unpaid leave for the year, I would look into flexible working; e.g. online transcription, delivery services or similar, just to keep the cash coming in.

It's shit and I am furious on your behalf. I can't believe your ex can walk away like that.

Oh right, ok. They've started to transition people with SDP over from January 2021, but I think it's a gradual thing.

I haven't been able to work with DD1. I did for a while but it became completely unworkable.

TheABC he’s only 3.5 so no full time school until next September

You need to look at Universal Credit again - What level DLA do you get?

if you get high care than you may be surprised how much you get in Universal Credit if you give up work for a while.

There are many issues with Universal credit but for people with severe disabilities it is much more generous than the previous systems. Also the way it calculates top up support when working is very different and when even lower level of disabilities benefits are involved it is much more generous even if working only a few hrs a week.

Go online and find a calculator - just google UC calculator and play around with working different hours and getting different pay - you may be surprised.

My Grandson also get High Care DLA and the disability benefits plus the additional premiums in Universal Credit its getting on for £900pcm on top of normal Universal Credit - which obviously varies depending on your own circumstances.

@ShannonKnocks9 it does sound like a mistake however as long as you gave all the correct information to tax credits then it is their error and you won’t be penalised for that.
However you may be better off on UC as you don’t need to work 16 hours to receive top ups for working. Also childcare costs if you can find a suitable childminder are higher on UC but you do need to find the money upfront. Technically there is meant to be a fund to help with upfront childcare.
Also with UC you get the carers premium even if working under tax credits you loose it once you earn approx £120 a week.
Also apply for direct payments you could use them to help pay for specialised childcare ie the extra between the regular rate for a non disabled child.
I am disabled with disabled children, I do have a husband so obviously harder for you but I understand some of the challenges.

Speak to HR explain the situation, ask to change roles/hours etc
School roles are out there. You work just your hours then leave , no pressure to work outside these hours . It’s a bugger but try HR first

@ShannonKnocks9 forgot to include this link, the calculators such as entitled to and turn to us are not accurate re UC. Work it out manually here www.uceplus.co.uk/how-much-will-my-payment-be.html
There is also a linked Facebook group universal credit essentials.
UC has many issues but for some people you will be better off.
The disabled child premium for middle or low rate care is lower under UC than tax credits though,

Hi OP I really feel for you as I've been in exactly this position, D.C. though is officially in mainstream though had no school provision for over 18 months (home school is our normal for now sadly).

The practicalities of parenting a SEND child and navigating them through the school system is exhausting and exceptionally time consuming. It's not just the school timings that posed challenges for us, it's also the relentless medical and specialist appointments and the constant (necessary) meetings (often 4 hours long) with school, specialist professionals etc. Then there's the unlawful exclusions which you receive zero warning about. I had the worlds most compassionate boss but back in 2016 was forced to give up my career and any hope of it being picked up in the next decade.
For those quoting DLA and CA, depending on your child's needs /awarded funding this can be minimal and will be needed for supporting your child. CA is basically your only income personally then at the princely sum of £269 per month.
It's soul destroying to kiss goodbye to your career /old life/adult interactions/ability to socialise, but for us it really was the most sensible way forward. Be warned though it is exceptionally isolating for you as a parent, you also get little or no respite that professional life may have brought previously.
We tried all avenues for child pick up/wraparound care. It simply doesn't exist in our area and cost the earth anyway.
Best of luck to you-it's a heart wrenching choice it really is

Ask for a social care assessment and carers assessment which might lead to some care hours to support you staying in work and some respite. council also has a legal duty to provide sufficient disabled childcare. Check if any nurseries local to the school will collect at lunchtime. You should still get 30 hours childcare. Apply for discretionary transport. Is there any way the school can make an exception and do different hours? Do any other kids go to a different nursery for afternoons? Contact charity have info leaflets. Also cerebra charity for free legal advice. As a single parent with no support you should get something via social care. But be prepared to have to complain if you get knocked back. If you get direct payments you can pay a carer.

I work in a SS and a lot of the staff will take children after school. Some parents get Direct Payments to go towards paying for it but I know a lot also will pay themselves.
They ask/ advertise on our staff notice board.

@ShannonKnocks9

MyDC Forgive me but I think you are mistaken. The above is probably true but you can also still be receiving tax credits instead of UC if you receive the enhanced rate of disability benefit

Only if op was receiving severe disability premium on a benefit like ESA or JSA - she clearly isn't because she claims WTC. When she split with her husband - her single tax credit claim should have ended and she should have made a new claim for UC unless they split some years ago before UC existed ??

Op if you have to give up work you would get carers element of Uc and could claim carers allowance as long as your ds is on at least middle rate DLA. Carers allowance would be deducted pound for pound from Uc though.

Sorry you’re in this situation OP. It’s hard when the reality of how having a disabled child impacts your earning potential hits. There’s a grieving process IME. I was in this situation 8 years ago and I decided to give self employment a go. I do cleaning. I’m upfront with my clients and tell them that I won’t be working school holidays. They’re all great about it. Sure it’s never going to make me a fortune but I can work when I want and stop when I want. If I need to go to collect DS from school early I can. I can book his medical appointments and arrange my work schedule around them. Cleaning isn’t for everyone- maybe there is something else you could do as a self employed business? Worth thinking about. Hope you find a solution.

He will be entitled to school transport contact them.
Is the part time because of age? Can he stay in current nursery and start the school once school is 9-3.
Is a sabbatical/career break an option.
Do you have a support group for his condition they may be able to offer support and advice.
Good luck op.

He will not be entitled to free transport until 5yrs old.
You mention claiming PIP - do you mean DLA? (you claim PIP from 16).
I would contact social services and ask for an assessment - a social worker could then advise you or the Disability Advice and Information Service who could talk to you about benefits.
Also, are you in a union - ask about your employer making reasonable adjustments with regard to your job.
Or like you say, look to stop working. I made the decision to keep working but it was really hard on my sanity and health - not sure I would do it again. Finally I have found that it does get better, you gradually feel less angry - but you need to give yourself time.

Sorry had forgotten DLA is being replaced - my son is much older.

My LA does provide transport for preschool age if attending a specialist setting, I'd definitely try and you can ask for fuel allowance.

I’ve had this problem too as my son has additional needs and I’ve yet to find a suitable child minder/setting for him outside of his school hours which are now full time. I’ve been claiming carers allowance since he was small and I’m hoping to get to a point I can work again soon but the only reason that’s possible is because of my partner being so supportive and willing to pick up the childcare responsibilities for my son/his stepson. My ex never was willing to and as single mother I just wasn’t able to make this stuff happen. So many people asked me when I was going back to work and it made me feel like a loser at the time but now I look back and just think “I couldn’t find a solution, no one else could offer one so wtf was I meant to do?” I hope you find a way round this OP but don’t beat yourself up about it if you don’t. This really isn’t your fault.

If he’ll get transport to and from school you’ll be able to work in September right? So you’ve just got to manage till them. Could you take a leave of absence? Or even be signed off for a while - it honestly sounds like you need it.

I’m sorry OP. It’s a shit situation. I remember going through similar with my SEN child. Nursery was fine, but as soon as we hit school age there was suddenly zero wraparound care suitable for him. Also, we went through a terrible time of him being constantly excluded due to behaviour, then put on part time hours, during which I had no choice but to quit my job.

I ended up freelancing as it meant I could work remotely, so fit in work during school hours and some during the evening after bedtime. But as PP said, it was like a mourning process for your old career. We’ve got a bit of a routine going now, but it often feels like we’re just making do for the next few months. I think you’ll need to speak to your employer to see what they can offer you in terms of leave and what your next move could be.

As a single parent of a child on HRCLRM it is financially much better off me not working. I would do what is best for you as a family even if that means giving up work. Having a child with special needs is work in itself