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AMA

I'm a long term benefits user: AMA

264 replies

mycheeseplantiscalledcharles · 28/04/2026 11:05

I won't bore you with the long back story but to sum it up I had a professional career then two of my DC were disabled, needing FT care. They are now 19 and I've been on income support and now UC for 18 years. I have always felt comfortable financially and never had any debt. AMA.

OP posts:
scoopofmintchocchipicecream · 28/04/2026 17:17

mycheeseplantiscalledcharles · 28/04/2026 12:26

I have volunteered in different sectors/charities over the years and there are people taking the absolute mic because they don't want to work. These are usually ones who come from families of generational unemployment and know the system inside out. Things need to be made easier for those with DC with disabilities to help them stay in work. Childcare for children with complex medical needs is only for the mega rich as you need to pay specialist nursing fees. Before my drs turned 19 (and we're in theory in FT education) I had a work allowance of £400ish a month. As soon as they turned 19 I lost that, so I'm worse off, but their needs have not changed do I'm worse off.

If DC needs specialist nursing care, have you looked at CHC funding? It is often a fight to get, but worth it.

Assuming they met the other criteria, DC could have remained an eligible young person for UC until the September after their 19th birthday, so unless their birthdays were in august, they didn’t have to come off your claim straight away at 19.

xxxlove · 28/04/2026 17:18

thatsgotit · 28/04/2026 17:14

Not you again. Why do you always hang around these threads with the sole intention of putting the boot in? And would you seriously swap places with OP given what she's shared about her life?

yes, she also cannot believe that some of us are still home owners living with HA landlords and we pay mortgage. Being free hold and proud of it won't be written on your grave would it....the hatred and jealousy spills from her, on a woman's thread in dire need ....wow

scoopofmintchocchipicecream · 28/04/2026 17:18

mycheeseplantiscalledcharles · 28/04/2026 13:41

Because although their EHCP is until they are 23 currently, that does not mean adequate provision is available. This varies quite wildly across the UK. There are a lot of disabled young adults who are supposed to be in educational settings and it just isn't happening.
Residential care will happen when I'm no longer able. For now, their needs are best met with me at home. I can give them what they need to maximise their quality of life. The standard of residential care can vary wildly and the LA will find the bare minimum. It can be devastating for parents who are no longer able to care for their DC to see the condition they are living in. Carers are very poorly paid and receive very little training and it can really show. Some adults don't leave their beds for the whole day. I will not be prepared to go down this route until I feel my care is less than that of somewhere outside the home.

If DC’s EHCPs haven’t been ceased but there isn’t an appropriate setting, have you looked at EOTAS/EOTIS/C? That is bespoke and can meet the needs of all DC. You may have to appeal, but it is possible in all LAs.

DuskOPorter · 28/04/2026 17:18

Well as a mother of disabled children I think you are absolutely amazing and I fully support paying people out of welfare to care for their own disabled children because a parent will care far more than a care company. I’m thankful that my situation has always allowed me to work.

LoyalMember · 28/04/2026 17:19

xxxlove · 28/04/2026 17:18

yes, she also cannot believe that some of us are still home owners living with HA landlords and we pay mortgage. Being free hold and proud of it won't be written on your grave would it....the hatred and jealousy spills from her, on a woman's thread in dire need ....wow

Hatred? Where? In dire need? The OP specifically said she was comfortably off..

ConcernedForWales · 28/04/2026 17:20

LoyalMember · 28/04/2026 17:16

Yes, the Scottish equivalent.

So why on earth are you resentful of OP? You are a household on benefits due to disability of family members. The difference is you own your own home whilst OP rents. Yes that means you have maintenance costs, but are in a far better position than OP who is at the mercy of private landlords.

Perhaps OP manages her money more effectively?

littleorangefox · 28/04/2026 17:20

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Plenty of "ordinary, hard-working folk" on benefits too.

I would suggest seeing the GP about your mental health. And maybe a therapist about your bitterness.

xxxlove · 28/04/2026 17:22

LoyalMember · 28/04/2026 17:19

Hatred? Where? In dire need? The OP specifically said she was comfortably off..

you cannot breathe typing all your disgust. I live in HA but pay mortgage and for every repair they on externals, all of us here, both on benefits and on wages pay the sum divided between us and is more than 800 pounds.

LoyalMember · 28/04/2026 17:31

ConcernedForWales · 28/04/2026 17:20

So why on earth are you resentful of OP? You are a household on benefits due to disability of family members. The difference is you own your own home whilst OP rents. Yes that means you have maintenance costs, but are in a far better position than OP who is at the mercy of private landlords.

Perhaps OP manages her money more effectively?

Edited

I'd need to be Russell Grant to be able to foresee hefty bills in the future, ffs...😆

BunnyLake · 28/04/2026 17:32

mycheeseplantiscalledcharles · 28/04/2026 11:29

Nothing. I don't know why this is a common response on AMAs. If you aren't interested feel free to scroll on.
Perhaps I should have said in my OP, I've name changed for this as don't want my posting history linked.

Edited

Every single time someone will post why did you feel the need to post on AMA. Every bloody time!

ConcernedForWales · 28/04/2026 17:35

LoyalMember · 28/04/2026 17:31

I'd need to be Russell Grant to be able to foresee hefty bills in the future, ffs...😆

Any homeowner knows that ideally they need a little pot of money for unexpected repair issues. Not sure what astrology has to do with that!

LoyalMember · 28/04/2026 17:39

ConcernedForWales · 28/04/2026 17:35

Any homeowner knows that ideally they need a little pot of money for unexpected repair issues. Not sure what astrology has to do with that!

We have a Home Improvement fund but it's been depleted recently due to one thing or another. Mainly car repairs recently. They've recently given us a good kicking.

ConcernedForWales · 28/04/2026 17:45

LoyalMember · 28/04/2026 17:39

We have a Home Improvement fund but it's been depleted recently due to one thing or another. Mainly car repairs recently. They've recently given us a good kicking.

Sorry to hear that, but coming on here and giving OP a kicking isn't going to help.

LoyalMember · 28/04/2026 17:48

ConcernedForWales · 28/04/2026 17:45

Sorry to hear that, but coming on here and giving OP a kicking isn't going to help.

I know, and I am sorry about that, but I'm just so fed up and pissed off.

xxxlove · 28/04/2026 17:50

No improvement home fund. I work and save all my salary, no extras, no spa days, hairdresser every three years, since I have long lovely hair anyway...so when I needed to repair things I have money and don't bemoan 800 pounds or feel the need to begrudge mother of severely disabled children

LoyalMember · 28/04/2026 18:02

xxxlove · 28/04/2026 17:50

No improvement home fund. I work and save all my salary, no extras, no spa days, hairdresser every three years, since I have long lovely hair anyway...so when I needed to repair things I have money and don't bemoan 800 pounds or feel the need to begrudge mother of severely disabled children

No, and you wouldn't if it were only £800. It's when it's one thing after another continually that it gets to really piss you off.

Sensiblesal · 28/04/2026 18:05

mycheeseplantiscalledcharles · 28/04/2026 11:49

I was a teacher, had 1 DC then had premature twins. One of them was ill from birth but no diagnosis and I took a career break for 3 years. When career break ended I was 28, so I suppose stopped working when I was 25. Twin 2 was 'healthy' from birth but didn't meet milestones and as time progressed was diagnosed with autism and GDD. They have both left education now and are at home full time. Funding to day centres has been massively cut now and because neither of them fall neatly into criteria boxes getting somewhere appropriate is very difficult.
My income now they aren't children has massively reduced. I get £1100 pcm UC which includes housing allowance. I work 48 hours per month which is deducted from my entitlement, so I'd get more if I wasn't working. I use their PIP to pay the extra rent. They get £700ish UC each plus £700ish PIP each. I am the appointee for both so manage their money. When they were DC and I got tax credits I can't remember exactly the amount but all in was possibly around £3k pcm. That is much more than I would have got teaching and I felt embarrassed by that. I have always tried my best to give back to the community and support charities.

You work more than full time hours but stil get £1100 UC?

You get 2800 for your adult children

plus your wage for 48hrs work a week?

who looks after the adult children whilst you are working?

This is why people get angry about benefits culture

its actually crazy to me that you leave uni, work for circa 4yrs then the government pays your way for the next 19yrs. Thats not sustainable, you have taken out far more than you put in

SiberFox · 28/04/2026 18:07

Sensiblesal · 28/04/2026 18:05

You work more than full time hours but stil get £1100 UC?

You get 2800 for your adult children

plus your wage for 48hrs work a week?

who looks after the adult children whilst you are working?

This is why people get angry about benefits culture

its actually crazy to me that you leave uni, work for circa 4yrs then the government pays your way for the next 19yrs. Thats not sustainable, you have taken out far more than you put in

Edited

48 per month

ReleaseTheDucksOfWar · 28/04/2026 18:13

LoyalMember · 28/04/2026 17:19

Hatred? Where? In dire need? The OP specifically said she was comfortably off..

She also said she buys everything second hand and rarely goes away, and when she does it's very budget.

It's not many people's idea of comfortably off.

You do reek of sour grapes and bitterness.

givemesteel · 28/04/2026 18:28

mycheeseplantiscalledcharles · 28/04/2026 12:30

DD is at university and is doing really well. Still lives at home but when she graduates will be moving away I assume.

So your daughter went to grammer school and is now at university and doing really well. Do you honestly believe that she really actually needs PIP, did she really need DLA? Do you hope that she will be able to enter the workforce once she graduates? Is she working part time now?

Your husband had an episode of depression 14 years ago and has not been able to work since? Is he on antidepressants? Has he made any attempts to reenter the workforce? I am assuming also you benefit from him not living there?

You don't disclose your son's issues which is fair enough, but is it purely mental health based or does he have a disability? If he moved into supported living / residential care would you then go back to work?

If the benefits system was less generous what choices would you and your husband have made?

Sensiblesal · 28/04/2026 18:31

SiberFox · 28/04/2026 18:07

48 per month

Ah OK that makes much more sense cos I was wondering how she suddenly became superwoman & was managing that

to add to my original post, I do believe benefits should help in these situations but the reality of it being broken down is crazy to comprehend.

x2boys · 28/04/2026 18:33

givemesteel · 28/04/2026 18:28

So your daughter went to grammer school and is now at university and doing really well. Do you honestly believe that she really actually needs PIP, did she really need DLA? Do you hope that she will be able to enter the workforce once she graduates? Is she working part time now?

Your husband had an episode of depression 14 years ago and has not been able to work since? Is he on antidepressants? Has he made any attempts to reenter the workforce? I am assuming also you benefit from him not living there?

You don't disclose your son's issues which is fair enough, but is it purely mental health based or does he have a disability? If he moved into supported living / residential care would you then go back to work?

If the benefits system was less generous what choices would you and your husband have made?

I think you need to read the Op,s posts again
She has three children her daughter isnt disabled
Her twin sons are.

LoyalMember · 28/04/2026 18:33

ReleaseTheDucksOfWar · 28/04/2026 18:13

She also said she buys everything second hand and rarely goes away, and when she does it's very budget.

It's not many people's idea of comfortably off.

You do reek of sour grapes and bitterness.

I buy most of my clothes second hand from Vinted, and direct my wife and family to things on it when it's my Birthday or Christmas.

tortoisewoman · 28/04/2026 18:38

givemesteel · 28/04/2026 18:28

So your daughter went to grammer school and is now at university and doing really well. Do you honestly believe that she really actually needs PIP, did she really need DLA? Do you hope that she will be able to enter the workforce once she graduates? Is she working part time now?

Your husband had an episode of depression 14 years ago and has not been able to work since? Is he on antidepressants? Has he made any attempts to reenter the workforce? I am assuming also you benefit from him not living there?

You don't disclose your son's issues which is fair enough, but is it purely mental health based or does he have a disability? If he moved into supported living / residential care would you then go back to work?

If the benefits system was less generous what choices would you and your husband have made?

I'm pretty sure OP's daughter in grammar school is the eldest of the 3, who does not have a disability. OP has mentioned her twins who are both disabled and were also very premature. Together with what she has already said about the amount of support they get, it implies that the twins are disabled, not unable to work due to 'mental health'.

givemesteel · 28/04/2026 18:46

tortoisewoman · 28/04/2026 18:38

I'm pretty sure OP's daughter in grammar school is the eldest of the 3, who does not have a disability. OP has mentioned her twins who are both disabled and were also very premature. Together with what she has already said about the amount of support they get, it implies that the twins are disabled, not unable to work due to 'mental health'.

Yes, apologies you are right. She didn't mention the daughter in her OP so I had assumed she was one of the twins receiving PIP.

I would still be interested in my other questions.

I would be interested in knowing whether the twins went to mainstream school or a special needs school?