Is it normal to miss out financially when caring for disabled children?

[Namechangejustforthisthread5]

I am a carer for disabled DC

So I've not worked in a very long time .. despite having good qualifications.
So DH ,went on holiday aboard with mates .. despite never getting passports for DC when C
He also spent 3 grand getting laser eyesight..this was for a job that he stayed in 6 months
And another £3/4 grand on another job ,this job he never took up ,but has the qualifications
I went with the same glasses for 7 years , because I have a difficult prescription and it makes it very expensive and no money
I wanted to go back to uni and do a degree that would further qualified me ,but there was no money .
I also don't have a private pension.. because no money.
To my ultimate shame I have hidden from everyone in my life ..but I have partial dentures.. eating disorder and childhood neglect contributed to loosing teeth .
There was no money for me to have root canal so they had to come out .
DH has returned from the dentist
He needs a root canal or tooth removal
Cost is £800 ,he's putting it on a credit card .
I don't have a credit card so I couldn't do that ..
I can't even really say anything, because I can't admit how many teeth I'm missing,he knows I had one removed because I didn't have money,but I've hidden the others from everyone.
Is this normal when you don't work because your kids have disabilities .

A bit tangential maybe but I think normal is quite a loaded word - every family is different.

I don’t there’s anything abnormal about what’s happened. But it is unfair but sadly I think happens often!

You’re being financially abused. And you’d probably be better off leaving him

I’m a single parent carer. I suspect you and your disabled child would be better off financially if you were single as you would get benefits for yourself and your disabled child. While there is a bit of a cliff edge when your child gets to adulthood - especially if they have to pay for social care - you may still be better than with someone who doesn’t care about your needs. Put your situation through an online benefits calculator as though you were single. Or contact CAB. Also make sure your child is getting the right benefits.

Statistically those who are carers for disabled children do have lower incomes and often no private pension but the universal credit top ups for disability and DLA are more generous than you may think - obviously you can’t claim UC if your partner earns too much and keeps the money for himself.

Do you have a disabled children’s social worker? They may be helpful if you are being financially abused or for benefits info.

Does the child benefit, DLA etc go into an account you have access to? Could you arrange for them to go into an account just in your name?

It's not uncommon at all for your income from work to be affected by caring for disabled DC, no. It's a sad fact of life today.
But as a family unit, you and DH (assuming he is DC's dad?) should be impacted equally, not just you.

This is most definitely financial abuse. Have you ever confronted him about how he treats you and the difference in your experiences? If you look for a local domestic abuse charity they should be able to support you with your understanding of abuse and how, if you want to, you can move away from this relationship.

The child ..is nearly 30 ..
It's hot at the moment and he smells bad ,so later today I will get him in the shower ( with underpants on ) and wash his hair .
That's the level we are at ..there are other children,but they are not the reason I am not working.
I used to try to discuss money,or tried to make a suggestion,or ask a question, I got told " if you think you can manage the bills better than me ,go ahead take over "
There was no working together..it was his way or a confrontation

This is financial abuse, you married a wrongun unfortunately.

I thought,I was maybe being unreasonable as the main monies he spent were towards getting different jobs he wanted,he never stayed long in a job .
I don't know ,even if I wanted to,if there is anything I could do to change things .

A lot of people with disabled children have to buy care the NHS doesn't provide, travel miles for medical appointments etc, so the short answer is yes.
Both in the immediate price of the care/travel, and the long-term effects because you can't take certain jobs/can't go for promotion/maybe even lose your job due to taking too much time off. Even with a proven physical disability, you often get refused for DLA (not saying mental health and AuDHD aren't real, of course they are, but I'm saying even with something you'd think couldn't be queried).
Your case obviously discusses your husband in particular and lots of pp have commented on that-I'm just saying that in general, the answer is often, not always, yes.

This is outrageous. You need to shake up the family finances. Why is he living like a king and you a pauper? Why are you so lacking in self-worth to be treated this way?

1. private pension for you. It’s only a few thousand, but should be filled for you every year.

Nearly 30!! You should have been putting 2/3k in a SIPP each year rather than squander on his holidays. Yuck.

I don't work because of my disabled child. With all the meetings, appointments, 2 different schools (mainstream and special) I just couldn't do my hours at work. The majority of parents at the special school don't work as well. It's not because we don't want to, it's because we can't do it. But what's isn't right is your partnership with your husband. You both need to make cut backs and changes in the way you live. It's not right he's having expensive treatment and you are living so poorly. You need a honest discussion with him. You don't deserve this and I would question how happy you are as a couple. I'm sorry your husband is treating you like this and if it was me i would leave. I understand it's not as simple with a disabled child but your deserve to be happy.

It’s normal to have less money as a family when one of you isn’t working to care for a disabled child. It isn’t normal to have one of you having significantly more financial freedom than the other.

In our case DH’s salary goes into a joint account. All money is viewed as our family money. I retain access to our small emergency fund and I manage our limited savings. Both of us have credit cards which we pay off monthly from the joint account. I also have a current account which gets CA. We couldn’t afford payments into a private pension for me initially (better from a financial perspective to pay into DH’s) but we’ve paid into mine when we can.
When I need dental treatment or anything else relatively essential I pay for it and wouldn’t feel the need to notify or check with DH I would just pay it. I would run past DH any big/extravagent/unnecessary purchases, he would do the same as we try and make those decisions together.

We would share if either of us needed expensive dental work and adjust the household budget accordingly- I’d be annoyed if he needed work, decided not to get it and hadn’t told me but resented me nonetheless. Have you given him the chance to offer to pay for yours (although you should have access to the means to pay for it yourself!)? Are you saying he chooses to go on holiday when he knows you need dental work? Because that is slightly different to planning a holiday when oblivious to other expenses.

DH doesn’t purchase everything he’d like because money needs to go further when one of you isn’t working. It’s easier to see what needs to be planned for/spent when you can view all family money.

Although I likely wouldn’t spend money going to uni unless planning to work full time after- which I couldn’t do as a carer. So I don’t think that’s necessarily unreasonable depending on the details.

If you’re married and one partner doesn’t work, generally the expectation is that all money is family money and you have equal access to spend said money on yourself as he has. No it’s not normal for him to live lavishly and you to live like a pauper.

Yes, but that is the problem. It isn’t a joint “you” (or op) reason the money has gone on holidays instead of something like a sipp, as you have implies (I’m not sure the yuck was called for either, tbh). OP isn’t choosing to squander money on holidays, her husband is. And anything else he fancies. Anything other than his family. She knows this. She can’t just suddenly start putting money anywhere, as she has no access to money at all. And at this point her immediate needs are to have money for dental work and glasses, and whatever else has been being neglected whilst he’s refusing to pay for. These are absolute basic human needs. And these - right now - are more important than her pension - unfortunately. Because you’re not wrong, this does need to happen as well, but there are other things that are well overdue. Obviously, in an ideal world there should be money for both, but there’s nothing, hence why she is trying to find out if it’s normal.

@Namechangejustforthisthread5 as said, yes this is financial abuse. Something does need to be done quite urgently. And as some other pp have suggested you need to look into what you might be entitled to if you go it alone. Yes it’s extremely daunting, but you need to leave for yourself and your children. You can try to have another conversation with H first. I’d spend some time making a list of everything that has happened/that you need and put this to him. Really think about what you need from him. Don’t rush it. In the meantime just start getting the usual thi mg s in order - documentation you need for you and your child, copies of anything you might find relating to H’s financial situation if possible. I don’t think you genuinely knew he is financially abusive?

How old are your other children? And I’m not sure if I missed it but does your son get pip/dla and do you get CA?

It’s financial abuse or at least borderline.

that said if your dc is 30 i would be looking to transition them into local authority care in the next year or two, you do not want to wait until you have a health crisis so it’s an emergency. Doing it in a controlled way means you can find a shared living situation that is right for your dc