Do I keep working or not?

Hi all.
I’m caring for my 15 year old who has asd and adhd and also working 25 hours per week.

I’m a single parent with no family nearby and finding it all too much, I had an emotional breakdown 8 months ago.

I asked my work if I could reduce my hours but they declined, so I am contemplating finishing work and perhaps claiming carers allowance for a while until I feel able to step into working again, but I’m really worried that we’d end up in a bad situation financially.
Especially as when 15 year old turns 16, it will mean claiming pip instead of DLA and I worry what if they’re turned down for it and therefore so would I be for carers allowance! It would put us in a mess financially.

Has anyone else felt this way, or done this?

Any advice would be great, thanks! :-???

I don’t have any experience of this but please do keep checking back for replies from others over the next few days.

A friends son had a physical disability, he was in a wheelchair and she was a full time single carer for him, she found it very hard when he became an adult as so many benefits and things were withdrawn.

It’s a shame your work can’t be more accommodating. Is there any possibility of maybe getting a different job that’s less hours a week? Or maybe something where you could work from home? x

Hi Susan,

although caring and working is hard to juggle - I wouldn’t recommend giving up work altogether; both from a financial point of view and also from a sanity point of view.

It’s a shame work aren’t being accommodating. Do you have a union rep who could support you with reapplying for some flexibility?

I used to work full-time and care and reducing my hours made a real difference. More recently I did take a break, but I studied so there wasn’t a break in my CV. I now work in a different job, less well paid but also less stressful.

You might find this information helpful, if you have’t seen it already:


Ask for help. And yes it is hard work at times.

Susan, if your work are not supporting you, and you end up being forced into leaving, this could amount to “Constructive Dismissal”. They have a duty to “make reasonable adjustments for disabled people” and should treat you as if you were disabled - you are classed as “Disabled by Association”.

My son with LD is now 43, the system may have changed slightly now, but he received adult income support at the age of 16. I was not claiming any benefits. Please ring our CUK helpline asap so that they can go through it all with you, confidentially.

Definitely keep working would be my advice, it gives you other people to talk to and share things with. Life at home on your own can be very lonely.

Incidentally, the benefits your son will get at 16 are for his costs of living NOT for CD’s etc. You should become his DWP Appointee.

Trust your heart OP.

Thank you everyone. It’s so nice to have some non judgemental and sound advice. I feel a bit more confident in making a decision :slight_smile:

Good luck susan. Wish u all the best.

Hell these situations are never straight forward i went through the same type of thing i would say go and see the citizens advice they can be very helpful take a pen and paper with you so you can jot things down so you remmember whats been said it will get better stay positive

Just to add to Bowlingbun’s comments about constructive dismissal: there was a landmark case around 2007 involving a parent carer by the name of Sharon Coleman. Some details of the case are here: - since then, the law has been clarified and strengthened in carers’ favour under the Equality Act 2010.

If he decides to stay on at college will he still qualify for DLA?
Have you been in the national autistic society forum for parents and carers to see posts and to post in there as there could be help there too, also try their helpline.

You are here, you are not alone, but you might find help as well in there in more specific ways if you aren’t already a member in there.

Also consider when he is 18, legally a man and his own agent and if he might want to move out then or any time thereafter. If he needs a support system he needs to have them in place.
If he has a support system now you need to be speaking with them about support at college or support if he doesn’t go to college - then in the last year of college you need to speak about support thereafter.
Do some searching around in the forums in the autism site.

Parents & carers

Help & support

I agree with carrying on working because it retains a sense of normality and routine, and it gives you some respite.
If you are home 24/7 the authorities could be likely to take the easier option and just leave you to it, putting you on the back burner because he has you at home 24/7.
Dig your heels in. Stand firm. You have a job. Keep it as long as you can or permanently.

I don’t know the level of your son’s abilities etc and I shan’t pry so please don’t be offended if he is highly capable, I am looking at the scenario if he needs support. There are others who are more knowledgeable than me with better advice but you need to look at the future if he needs support.

You need to do some forward thinking for up to 5 years ahead and find out information for his future.
You need information and knowledge about benefits and support and bear in mind that it is a fluid situation with the authorities changing the goalposts but you must find out because big changes to his life are imminent.
thinking about end of school - college or what?
End of college - what then? work? unable to work?
Independent living?

As said, a friend lost lots of help and benefits when her son had his 18th birthday and went from a disabled child with a degenerative fatal disease overnight to an official adult with the same disease and deteriorating all the time. There was no handover and a massive chase around for several months.

Also she had no say in his medical treatments and was not consulted as a parent of her child because overnight he was a man now, an adult and it was patient confidentiality and his decisions.
Having managed the finances and housekeeping she was left short with the cut in benefits and his money was more than her disposable money but she couldn’t touch his money and was much too proud to use her sons money for even such as buying him an ice cream.

If you are not in a local autism group join it, if your son doesn’t want to know fair enough, but you need to see them as a parent and carer and see what advice you can find out.

You need to tally up the money you would have when your sons status changes from child to adult depending on him carrying on at school, leaving and/or turning 18.
Also consider how easy it would be to get a job again when you are able to work again.

Think about
How much money would you have with benefits etc if you gave up work and what help with him
Free help or paid for and how pay for it
Could you manage 24/7 with him without the respite of work - what respite would you have
What adult care or work schemes are there if he leaves education at 16 or when he turns 18

How much would you have with benefits etc if you stayed working and what help with him
Free help or paid for and how pay for it
What adult care or work schemes are there if he leaves education at 16 or when he turns 18

Safeguarding him
Independent living if he wants to get his own life and independence at 18 or thereafter what does that entail for him.

You need to know what is what to make informed decisions and be forewarned about hings.

Keep your job so you have something to go back to when your son leaves home.

Start thinking about post 18 placements already. SSD don’t want to fund residential colleges, but honestly going to Fairfield Opportunity College at Warminster was the best ever thing that happened to my son. He matured and learned a lot between 20 and 30, sadly now slipping back a bit due to care agency problems.

There is an organisation called NATSPEC, have a look at what is available through them.

At 50, my husband and I thought we were fit and well. At 52 I was diagnosed with a large kidney tumour, major surgery followed. When I was 54 I found my husband dead in bed from a massive heart attack, 3 months after that I was nearly killed, left disabled, in a horrible car accident.

Do NOT fall into the trap of thinking you will know when the time has come for residential care and do nothing. If you don’t do anything your son will be living with you forever, until you get too ill to cope. Even worse, in an emergency situation where you won’t be able to support him.

After college my son went into a residential care home for a while which was lovely, then it fell apart with a new owner. Now he lives in a privately rented flat with carer support. We have spent a long time making it cosy with everything he needs in it, in fact it’s the envy of most care staff. I saved his benefits when he was in college so when he finally moved to his flat there was a little “nest egg” which meant he could afford new white goods, a new bed etc.

You haven’t said if your son is ready to, willing or would want his independence or if you are for it or not.
You have a few options.
Do as BB has with her son in getting him independent in the best way for him and both of you thrive.
Care for him at home for life to the detriment of your health
Slip through the net and see him fail and flounder trying to make it alone.

Think it all through.
If you want the first one then start finding out because it probably won’t be handed on a plate.

I started a charity for families with a special needs child. When my son was 16 I was worn out, no respite, boarding school was the only option. My friends weren’t happy, and later I had comments like “I can’t believe you are putting M in a home”. 20 years later they wish they had done the same. We are all worn out, old before our time, with a range of illnesses, cancer, arthritis, heart issues. No proper holidays, no time to recover, social services reducing care hours, still no proper discussions about finding a supported living place because at the moment they are concentrating wholly on those leaving long stay hospitals. A new local facility with about 50 beds recently opened, not one place offered to older parents wanting to retire from caring!

Hello, Susan. I would not recommend quitting your job. You would be financially less well off, less in control of your life, and it could be difficult to get back into work later. If you think that reduced working hours would work well for you, discuss it with your union representative. If you are not a member of a trades union, join one.

Quick point: a lot of firms nowadays have carer-friendly policies but their managers don’t always know about them. Check with your HR people.