To ask WTF happens when neither parent can work?

[Thehonestbadger]

Our DS is almost 4 but is massive and very heavy for his age, size of a 6/7 yo.
He has non verbal ASD with significant learning difficulties. I’ve been caring for him, after being forced out of work because childcare (even well regarded nursery) was extremely difficult and only made available in limited amounts.

The issue is, I’m not very well myself. I have chronic IBS and DS is now pretty much half my body weight. I’m frail and weak and he fights EVERYTHING and is totally non compliant, there’s lots of dragging, pulling, wrestling, fighting, pinning down, biting, scratching… he climbs things constantly and have extreme PICA. Even the experts seem shocked by how persistent and intense he is.

I just can’t meet DS’s physical care needs alone anymore (we also have a 2yo DD and I’m just outsourcing her constantly and missing her childhood) DH works very long hours and we rely on his income. But I can’t ‘swap’ with him and me go out to work because he’s also not well, with two partially slipped discs in his spine. We can limp along together ok looking after DS but generally takes us both to change/care for him especially on the bad days.

Family all say they can’t manage DS, fair enough neither can we. Social services have offered a monthly care package but recruiting anyone willing to do it for the wage isn’t happening and we aren’t holding our breath.

Can we both be home as carers? Would we get UC without them trying to say one of us should be working? We can evidence DS’s quite extreme needs and that neither of us are physically in a condition to meet them alone.

No idea what to do tbh, we never ever considered we would end up in this situation.

Social services told us OT would be able to ‘make things easier in the home providing practical assistance’ they came out and saw DS and basically said ‘yeah we can’t help you it is what it is’

Have you applied for an EHCP for your DS? You will need that in place before school ages so that he can go into a specialist school. Some special schools do have a nursery too. Is there one like that near you?

You can look into claiming DLA for your child.

Depending on your/your partners health needs, you could look into claiming PIP too.

I'd advise you to get in touch with your local CAB/Welfare Rights organisation to ask for a benefit check.

The feedback we generally get from experts atm is ‘this is just an unusual and unfortunate situation because of his size’ which is fair enough but it it doesn’t make it any easier to manage. He is massive.

We have everything in place thanks for checking through.

EHCP has been in place for over a year and we recently chose specialist provisions

DLA also in place for over a year, I’m his registered carer.

He also has a blue badge

@Dacadactyl @Kpo58

sorry please see above

Is residential care an option?

@GirrlCrush

😂😂😂 no
id be laughed out of the room for even asking that for a 3yo. But before I had my DS I probably would have asked the same tbh so I get it.

residential care is borderline impossible to get for the worst case, highest need, teenagers. There literally isn’t any for toddlers, they don’t do it.

Sorry I don’t have any magic suggestions. It sounds very hard. I hope it gets slightly easier next year when he is in full time education- I hope that it isn’t a big fight for you to get him into the right setting.

Just regarding getting someone to work for you with the money for his monthly care package- have you considered reducing hours / increasing wage? Where I live that is allowed and tends to be the suggested strategy atm where PAs are so hard to come by. (My son has ASD so I’m on various local SEN/EHCP groups although he doesn’t have the same needs as your DS). Obviously that is me assuming you’d rather have someone there doing less hours than no one doing the full hours you’d like.

Could one of you do some sort of evening/night work? Or something that is working from home?

sounds really tough op.

Have you looked into residential solutions for him? I know you probably won't want to but it sounds like it might be the best for your family.

I'm not sure you could both be considered carers for one child under UC. I think one would have to be the main carer and the other might be able to have no job-seekng requirements if they got LCW/LCWRA. That is our situation, we have an autistic child and I'm her carer, but DH and I have disabilities too. We get DLA for DD and DH and I both get PIP. No job search requirements and we manage OK financially. We get council tax support and UC covers most of our rent (council house). Get help through your carers centre for a benefits check and support with applying for UC.

Sorry I should have read the full thread.

@moggle

That would be a good idea but we can’t offer less hours at increased wage I actually checked that, I suspect policies differ by council.
We actually offered to top up the wage out of pocket which made it approx £15 per hour and we still can’t find anyone.

We’ve had a couple of odd baby sitters but no one sticks around or comes reliably because looking after DS is tedious and exhausting. I can admit that.

It sounds like a truly exhausting position to be in for you as a family.

Unfortunately, knowing quite a bit about UC, they wouldn't approve both of you as carers. If you already get DLA for your son, you can claim extra elements on UC such as the disabled child element and the carers element. If you currently receive carers allowance, that is deducted from UC on a pound for pound basis but it accrues you national insurance credits so it would be up to you whether to claim that or not.

If your partner has his own health issues, he would need to hand in sick notes to UC and after around a month it will automatically trigger a form about his health to be sent to him to fill in. He may then wait months for an assessment and decision on whether they find him capable for work and/or work preparation. If they find him incapable of both of these things, he will receive the LCWRA element of UC which is currently an extra £390 per month. If he's found incapable of working but capable of work preparation/searching for work etc he may he placed under the LCW category which is no extra money. He could also try claiming PIP too. Neither PIP or DLA has any effect on your UC. You can only claim carers element for one person so you wouldn't be able to say you were a carer for both of them.

You could claim Universal Credit if neither of you were able to work. You can claim benefits as a carer for your son. If you qualify for PIP due to your own health conditions, your partner can claim as a carer for you.

I literally came to comment more or less what @threelittlescones said

DWP may question how the OP can be a carer but also be ill enough for PIP

I have a child with complex special needs and at that age very violent. Less so now at 12.

Also ibs, endometriosis, and back issues from being a competitive gymnast and multiple surgeries for Endo.

I get it. It sucks a lot and I'm so sorry you are dealing with this.

Unfortunately I think your best bet is to try and get other practical help.

If you can request from agencies and family help with meals and even cleaning?

My ds does not attend school full time so I work from home. Can your DH do that?

I'm a lone parent but I would see if there's a possibility of both you and DH working from home in a part time capacity? Or if your DH can help when you need to tap out and do full time?

Also is your DH able to get surgery for his spine? This will sound silly but with his back and your ibs it's important to figure out how to best support your health. If your ibs is so severe it's causing weakness and weight loss meal replacements are your best friend.

I live off ready made protein shakes! They aren't the best but I find I can tolerate them, I have little appetite (also due to my ADHD meds) but it's something.

I used to have a basket of " feel good things". Some were for physical health and some for mental health. I would drag it out when I was struggling the most and even if I just rustled through it, it somehow made me feel better.

Do you have a school he will attend? Talk to them. They might have ideas too.

I would not have your DH quit. I would exhaust all other options first.

Do either you or your DH qualify for disability?

Even though some people require and are in receipt of two to one care in residential and nursing settings for some reason (lack of understanding and cost savings I guess) it's nigh on impossible to be registered as a dual carer household.

I think one of you needs to go down the route of being unable to work due to your own ill health. Then the one most able to work in theory becomes the carer.

I'm so sorry you're family is in this situation. It sounds incredibly difficult.

I have no particular experience in this but perhaps you need to impress on the authorities that, if you become unable to care for your DS because he injures you and/or DH, they will then have to step up so they might as well help you now. I’m sure that’s easier said than done but maybe steel your nerves and say it. Good luck getting more support.

Im going to put my hard hat on and suggest he go into care as your current situation is not sustainable. It’s also not fair on any of you.
(runs and hides)

Foster care for respite may also be an option.

No.

We both get PIP and DH and I both got Carers Allowance for one another (until we got our State Pensions, after which you don't get CA but you get two premiums with Pension Credit instead).

In other words, you can get PIP and claim Carers Allowance as well.