To give up full time work to care for my DS?

[lrp]

Currently work full time in the finance industry. Awaiting a diagnosis for my 4 year son, highly suspected to be autistic but not officially confirmed yet.

Have applied for DLA but still waiting to hear if he has been awarded. Working full time and being there for him also is proving so difficult. I feel split into two and I'm wearing myself extremely thin.

Have mentioned to DH about giving up work but I've worked since I was 16 and I've never applied for any benefits before so I feel a bit anxious about the thought of giving it all up, however I feel this will be inevitable tbh in the future the way things are going. DH is not a high earner (around £21k) so not sure how much this would affect if I did claim.

Any experiences please? Is there anything I haven't thought of?

If you took a sabbatical could you then not return surely that just the same as leaving but with the security of a trial run?

I wouldn’t. You’re likely to end up struggling financially. I know I’d find it lonely & isolating. What about your future pension?

We have two disabled DS and my DH and I both work part time so we can cover all school runs, absences etc while both still earning (though obviously less than before). We looked at one of us working FT and the other giving up but I would try to stay in work if you can get any flexibility in hours

You are not going to get higher rate DLA , you will get medium. I think it's very unlikely anyway.

You’d both be better off working part-time. You pay less tax and NI so you technically earn more. You may be able to claim tax credits too.

Genuine question why do you both only earn about 20k? One of you needs to put in massive effort to get a better paid job to enable the other to be at home more. Unless severely disabled the other one of you and DH could work part time. It doesn't need to be all or nothing.

Thanks everyone for the responses so far, there's so many things to consider. DS is due to start school in September, just not sure how well he will cope with that though.

All I know is that I don't believe I can carry on working in a full time capacity, it's just way too much with everything else going on. I'm not sure how flexible my work would be with me requesting to go part time. There is only 1 person on my team who is part time, the rest are full time. It may be something I could ask them about though. Ideally I would like to continue working, as I worry about struggling to get employment in the future and my pension. I want to sensible but also realistic

@PaddyDingDong that's easier said than done and not a helpful response right now. But thanks anyway

Once you have DLA it is worth discussing with your work as part of a part time request. I have some flexibility that no other staff member has due to having children with disabilities. It is always worth asking. The law is also different around parental leave if you have a child with disabilities

Try and stay in work pt if you can.
Are you expecting dc to be able to cope in mainstream?

Will they need echp?

on the DLA point - Ds2 gets higher rate DLA for care and middle rate for mobility. He’s received this since 3yo which predated his ASD diagnosis.

Have you applied for/started the ball rolling for an EHCP for your son @lrp? If not, do it now as it’s a long process and good to have in place for when he starts school in September.

But it's not easier said than done- you work in finance - nearly every type of job within that sector pays more than 20k so it just doesn't make sense. Put some of your energy and thought around planning to end work into progressing yourself instead for a bit. Pick the right school and your child may thrive within it, lots could change but one of those things you can influence is earning capacity and job role.

Also on the pension front - if you were to receive carers allowance, then that qualifies you for NI contributions. Obviously you would lose your work pension (if you have one).

@Hankunamatata At the moment we are wanting him to go to mainstream school to see how he will cope there. It does have a unit for kids with SEN to aid him. EHCP has been mentioned but I need to ask about this again. It's all new to me but have realised how important it is for him to have that

Have you worked out whether you will be worse off or not?

If you can access enough benefits to make it work then yes, maybe you should do it. However, if you cannot then think harder. I always worked even though I have two dc with severe ASD. However, I would have had a large drop in income and we would not have been able to pay our mortgage. It was very hard sometimes. The flip side of that is that now things are easier, I still have my career and the potential to support myself. I think whether this is the right choice depends on lots of factors including your earnings potential, the amount of benefits you can claim and family support. Being at home for your ds might be great in some ways but only if this doesn't cause financial hardship.

You don’t need to ask about an EHCP, you can apply yourself

@PaddyDingDong I'm fairly young, haven't worked in the industry for years. I only do basic admin role at my job, I don't have a senior role. The company isn't great for progression either but that's a whole other issue which I don't have the time to deal with yet 👍🏻

@LBB2020 Ah ok, so school don't need to do this?

Hi op. We're in a similar situation to you guys. My dh works full time over 4 days and I work around him and appointments in a big store. Means I can keep earning, so we can still afford some luxuries and I also have time away from family life. Which is important for my sanity as much as anything. Maybe worth considering something part time to make things easier.

Can you look at working less, instead?

I think I will wait to see if he is awarded DLA first and go from there. I really don't want to make a rash decision but it's so difficult not to just want to give everything up when things are hard

Definitely get the ball rolling on the EHCP, OP.
And don’t give up work. I stopped working for a bit after being made redundant. Although it gave me some time to get to grips with paperwork relating to DD’s disabilities and to take her to therapies, I think I became quite depressed.
Once DD started school, I got a job three days a week and honestly, it’s been a sanity-saver. I feel like myself when I’m working and not just a carer.
DD can’t access wrap-around care, so my DP and I both work part time and take it in turns to be around before and after school. Might that be an option for you and your partner?

@lrp Nope, you can apply for a needs assessment yourself (good to have input from nursery/preschool if he currently goes to one). It took around a year to get my sons in place so I’d really recommend you get things moving as soon as you possibly can

Would they consider part time til mid October with a review then? You say admin - is there any way you can flex your hours (compressed shifts/work from home etc) - my partner worked 40h over 4 days for a while which worked really well for him. If you were both able to drop down to three days until October that would allow you to immediately have more time (if possible take opposite days off) and then you’ll get more time when he starts school in September where you could maybe work part time but 10-2.

strangely you might not actually be much worse off going part time, even without DLA, as I’m sure you’d be eligible for UC.