To tell you what life is like with a disabled child?

There was a poster on that UC thread who was going to be writing to their MP about wanting maintenance to be off set against benefits...of all the country's problems, that's what they would write to an MP about...and announcing it on a thread from a poor mother battling for her 2 disabled children. I am still aghast at comments on that thread hours later!

Not only are you doing an incredibly hard amount of work 24/7 you are also saving the taxpayer a fucking fortune! Which tends to be forgotten/ignored when it's easier to whinge about people on benefits....

www.google.com/amp/s/amp.theguardian.com/society/2022/apr/18/english-councils-pay-1m-per-child-for-places-in-private-childrens-homes

What are we paying our tax for at all if not for situations like this? It’s a welfare system, a safety net. Any one of us could become disabled, anyone who has a child could have a child who is / becomes disabled. Would you not claim benefits you were entitled to in this situation? The OP has already explained the expenses around having a disabled child. I know families with disabled children who I presume are all getting financial support. Believe it or not, they are all far from splashing in cash. Having a severely disabled child is not some get rich quick scheme. Your posts are so beyond offensive. You’re talking to real people with real families in this situation. You are not struggling for money because a child with Down’s syndrome gets some DLA.

I've just read the thread you linked in the OP and I'm gobsmacked at some of the replies.

One poster says she'd happily trade Epilepsy for UC and other posters saying how having children incurs a debt on society.

I fucking despair. I really do.

JFC.

My issue is that the men must pay. Somebody needs to grow balls and make this happen. I don’t know what the answer is, but so many men get away with paying a pittance and the tax payer picks up the slack. That is not sustainable.

I think it's just ignorance rather than nastiness. People just have no clue how severely autistic children are. I worked in a Sen school with ten autistic children in a class it was the most exhausting challenging and hardest job ever. We often used to say how on earth do their parents cope. There were lots of siblings too !!! These children are kept away it seems and most people do not know they exist and how hard it is. I actually think I have some kind of ptsd just from working there. Some of things I saw and had to manage were incredibly upsetting and very difficult. People just have no clue. Wishing you and your daughter well op lots of hugs to you

Complain to your MP than ,I'm.well aware it's tax payers cash I used to be a nurse I was a tax payers for many years
But tax payers don't get to dictate what their tax money is used for

It's the isolation. I tried to get my little one into a local nursery/preschool but no setting would take him because his care is too complex even though 1:1 funding had been agreed. He needs frequent suctioning to maintain his airway, he has complex epilepsy and has had prolonged seizures, he's tube fed, has medications every four hours, day and night, he's blind. He can't sit without support, he needs lifting or hoisting for all transfers, he can't roll reliably so. He has dystonia which causes pain and muscle spasms day and night. It's just me and him, I can't remember the last time I had a full night's sleep.

People don't understand how difficult it is just to leave the house, day to day things like going to the supermarket become problematic, especially when they are too big for the baby carrier trolleys but not big enough for the specialist trolleys. People stare at him, children stare at him.

I claim DLA (but not UC) because everything about having a child with disabilities costs more, from his adapted clothing to the sheer volume of washing. I can't go into a regular toyshop and buy him a toy, he doesn't understand how to hold a toy much less play with it so most of his things come from specialist suppliers. I bought him a new off road buggy at the cost of £3k recently because he absolutely loves going in the woods and his NHS wheelchair is great but it cannot cope with the places most children of his age can go and he wants to do those things too. Without this buggy he wouldn't be able to go on the beach, it's those little things that people don't realise until they walk in our shoes.

Maintenence used to be taken into account.

The men didn't pay, the women and kids got the lesser amount, CSA failed to chase it up, meantime kids were going hungry.

Maintenence being taken into account is a conversation to have when the fucked up system is sorted out, which it never will be because half the government are screwing their exes over too.

Than you need to complain to your MP about it not bitch about what someone is legally claiming.

‘Why would someone claim less than they are entitled to?’

em maybe because it’s not free money? The taxpayers are paying for it, it’s not a bottomless pit of cash

I

YANBU. My child is 21 and needs as much, if not more, personal care and supervision than a toddler. I’m 60, and it is hard work dressing someone bigger than you, being on the alert for them going to the toilet so you can clean them up before they smear, surviving on broken sleep, the stress of their loud stimming, and on and on. I don’t think people who don’t live it can imagine it. My husband & I are still together, but a disabled child breaks so many families, and it is usually the mother who is left alone. It is all consuming. We both work, me part time. If alone it would not be possible. That thread about the OP’s benefits was horrible.

And that is what is wrong. Whatever it costs to bring up a disabled child, minus what the father has to pay and the remainder is what the government should pay.

CMS needs to have more power, and absent fathers should pay a sensible amount, they shouldn’t be allowed to pay the minimum and then go off and have a new life with wife number 2, 3 and 4

Maintenance isn't counted towards income, for good reason.

People in need suffer due to the government funding their mates and themselves, not because parents are claiming what they are entitles to.

His maintenence isn't taken into account in regards to universal credit ,so she's doing nothing wrong
Why would someone claim.less than they are entitled to ?

"What stuck in my throat, was that it was obvious that the father was paying, but the OP was not offsetting that payment against the UC."

Because it's not counted as income

I don’t think anyone on that thread said that the OP didn’t have a hard time. But what came over to me was that the children's parents should be stepping up, with the government making up the shortfall - not that the tax payers are responsible for the full bill. What stuck in my throat, was that it was obvious that the father was paying, but the OP was not offsetting that payment against the UC.

She was claiming so much more than is sustainable, completely out of order, and as a consequence others in need will suffer

Thank you for your reply. You sound like a lovely mum!

YANBU, OP - most people have no idea what it’s like. I don’t have a disabled child myself but do have a sibling with severe learning disabilities including autism, so I have some understanding of how hard it is. You shouldn’t have to fight for scraps of support. I absolutely don’t begrudge my taxes going to families like yours - after all, the alternative is presumably that all these kids would be in local authority care, which would cost even more.

One thing that makes me despair when these threads come up is how many fathers just seem to fuck off and leave their spouse to cope alone with a severely disabled child. What is wrong with these men?

Clear description of what many of us face daily and nightly. We do the best we can to support our children. can’t help much but paracetamol suppository game changer when ill x

I'm sorry, OP. That sounds horrendously difficult.

Yep I have to lock up every tooth paste, shampool ,medication washing powder, you name it if it's not locked away it gets thrown down the sink
He's really sneaky too he waits until i have gone to the loo or something and then looks in my usual hiding places 🤣

Me too

dc1 we were told he was fine, until he was 9.
Dc2 we knew he had sn but we were told only physical and he would grow out of it (he did grow out of the physical delays but we then discovered he had other problems)
Dc3 was fine until secondary school
Dc4 we knew he had health issues but again we were told he would grow out of them.
Dc5 was born after a double contraception failure while Dh was waiting for a vasectomy. I asked to be sterilized after dc4 but the drs wouldn't do it. I couldn't face having a termination after 2 traumatic miscarriages. I know that probably makes me selfish.

We saw a genetics Dr before ttc dc3 and dc4, who told us that dc2 would probably grow out of his problems, that it was very unlikely any subsequent children would have the same thing. We also talked to the paediatrician who said the same thing. Dc1 was showing signs of autism from age 2 but we were repeatedly told he wasn't. We already had dc2 by this point and by the time we were ttc dc3 we had been told that dc1 didn't have autism by the hv, gp and the paediatrician. When I had dc4 we had dc2 who needed a wheelchair sometimes and got tired easily and 2 seemingly healthy children.

I know it looks like we just kept having disabled children but it wasn't like that.