Newby in need of advice thinking of giving up work

My 12 old daughter was diagnosed two years ago with autism. She attends main stream school
Receives DLA middle rate
First year in high school was great as they had a nuture year group. Less teachers moving around etc
With totally no transition they slapped her in general classes the second year
Her attendance has slumped to less than 40%.
I feel I need to leave work so I can support her and make the many appointments I Carnt attend at present
She’s extremely clever and I don’t want to let her down.
I’m really worried about the benefits system and where I stand.
I’ve made many calls with no real answers.
As I’ve not yet handed my notice in
And help or advice would be brilliant

Hi Lisa and welcome

You could try and do a calculation as below. Do keep in mind it’s not totally correct until one actually applies.Take it as a guide.

Benefits agencies and charities can only provide a guide. Until you sign the dotted line no one really knows. There is so much involved in benefits assessments. You may have to claim under UC which is daunting for the most knowledgeable people who understand how it works.

Think very hard before leaving your job. You don’t state you age group. So it’s difficult to offer advice. You need to think about pensions etc in the longer term. Anyone can accompany your daughter for school appointments friend family member etc.

Please don’t hand your notice in yet, my son has SLD and I so wish I had a job so that it could give me a life of my own.

School sounds incredibly insensitive to her needs. Have you ever heard of IPSEA? If not, Google them, and then ring them, they were brilliant when my son had problems with education.
When did you last have a Carers Assessment from Social Services. They are supposed to support carers to continue working if they want to.

Thank you for advice.
I’m not sure if I’ve had a carers assessment I shall have to ask
Although social services have been involved since her dad’s sucide.
The autism team have been good so far
But… I’m just not available to work with any agancy for help due to my work hours.
She needs doctors appointment I Carnt make
Work is very difficult to get time off
I’m hoping it will only be for a few month
I maybe able to return to my cleaning job after
I feel school are letting her down
I carnt

You definitely need to speak to IPSEA about her education, and your employer should allow you time off for appointments. Even better, the appointments should be at times that suit you.

Hello and welcome!

Do not give up work. This is a bad idea especially for unpaid carers who work. Seriously. I work outside the home and I love it. It keeps me sane and fit. My husband and I take it in turns to go to his appointments. Additionally he takes on night care while I work or sleep. I do all the daytime stuff instead. I love my job.

Discuss with your partner alternatives to giving up work to care for her. Can you reduce your hours? Will that work?

Talk to IPSEA tomorrow and see if they can help you to sort out her education. Also write to your politicians asking for help. And the papers may also be interested in your story. Sell it as a human interests story for full impact. Or find another school.

What about homeschooling? I homeschool my brother and it works for us well. This way I don’t have to mess around. He gets a decent education.

Hia! I’m so sorry to hear that you’re finding it difficult. I was in the same position a few years ago in that nobody could tell me what benefit income I’d have if I gave up work. I was always too scared to finish but the decision was taken out of my hands as my son’s seizures became out of control so I then had no option but to finish. I haven’t worked for a few years now, and I do miss it. It’s quite mundane being a SAHM however it is so much less stressful as if he’s ill or if he has an appointment there’s no stress as I’m available.
I get Carers Allowance which I think is around £63 per week.
My son gets High rate DLA and we also have the disabled element of Tax Credits.
It may be useful to visit your local Citizens Advice. Good luck!


If her attendance is now below 40% it means she is either not getting enough support at school, it’s just not the right environment full stop or they are not making the correct adjustments, or a combination.

Does she have an ehcp?, if not I would advising trying to get one. It can be a long road, but worth it.

Your daughter deserves to thrive, with the right support that’s possible. One of my sons is now in a specialist school and is thriving after a very difficult time in mainstream. Worth every moment I spent battling through the paperwork to get the ehcp.

IPSEA will advice re getting ehcp.