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Whole families on UC, PIP, DLA and carers' allowance for each other?

578 replies

Hutinthemiddleofnowhere · 05/09/2026 23:03

This isn't a bashing, rather a genuine observation and we're privileged in the UK to have support with benefits and disabilities.

Having adopted 2 siblings with special needs over a decade ago it opened me up to a whole new world to me. With DC in specialist schools and needing a lot of intervention from agencies and medical support I've met so many parents and children. As a teacher this was so insightful and, while having always been extra devoted to students who had difficulties, my own experience as a parent took it to another level.

Teaching, I was always aware and sympathetic to those who barely made it to lesson, almost fell asleep but professionally had to adhere to the 'not participating' and when told to 'fuck off' it was call out. I knew there would be further investigation as to why they act like this by more able and senior colleagues. Didn't take it personally but, as you can imagine, it's difficult when you have several students like this while under the pressure of teaching a tricky maths part of the syllabus.

So as a parent of ND DC I experienced it from the other side. It was very difficult because our DC were causing disruptions due to their severe diagnosis.

Throughout our journey and specialist schools I saw a lot of reality. This comes (finally) back to my point. Year after year it became blatantly obvious that the vast majority of children have parents with their own issues, whether hereditary or learnt behaviour.

I got a job at the primary school as a liason officer so met most parents. All lovely and care about their DC but sadly struggled with managing themselves, their homes etc. Those few who weren't eligible for taxis and escorts (walkable distance) relied heavily on GPs to take and pick up from school. There were some parents who did drive and drop off, like me, but it was about 5%.

So mostly the parents were on UC, claimed PIp for anxiety and MH, got DLA for all DC and also carers' allowance for looking after DC. While i visited it was clear they were were reclusive, their days were spent watching TV, gaming, DC picked up in a taxi and they had struggled to get out of bed, knew they are provided breakfast at school, went back to bed. Yes I've seen this on an early morning visit multiple times.

I understand but also a part of me felt frustrated that they had fallen into a rut, able bodied, could have long conversations, but have had so much support that has enabled this.

As a school we reached out to parents to come and integrate, provided workshops, held informal educational classes how we can help our DC. As a parent and before being employed there I attended these and it so nice to meet other parents. The reality... they just sat there, being served coffee by an already busy TA, talked all the way through the presentations then left, after already leaving several times for a smoke during an hour and half get together. Still as an attending parent at this point I could see TA was struggling so stepped in to help serve the refreshments, set up equipment and clear up afterwards. One Mum asked me to open a window, another asked to give her some biscuits...I was the same as them, a parent, but they were just totally oblivious to the situation.

Then walking out, having cleaned up and they were chatting outside, all I heard was that was so boring, I know how to bring up my kids, waste of time coming out, so what you doing now, probably Netflix.

Then getting the role and seeing deeper into their lifestyles it confirmed that actually so many of these parents had come from a generational cycle with low aspirations and no encouragement within modern education, social workers or support from us all could change their mindsets of behaviour. Sadly it really is a case of we get money, DC have their consoles, school provides meals and exercise, bags of amazing stuff at Christmas and end of year which we don't even say thank you for, we can complain online if we don't like something etc.

This is just the basic circumstances, delve deeper and you would be shocked at how some of these poor kids live. A whole different thread would have to be made about drug dealing, violence, not allowing DC in the house so they have to become one of the balaclava gangs and so much more.

As parents, even if we have our own issues, we all need to put our DC first, not rely on others to do it for us.

OP posts:
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Harry12345 · Yesterday 14:34

x2boys · Yesterday 14:27

They can say what they want without the evidence they wont get very far.

This is a calculation of what she gets with 4 kids with adhd. Again my sibling claims, I am not against benifits and know there are people struggling and wouldn’t wish what some people are going through on my worst enemy but not everyone who is claiming is this bad and again it should not be more than working full time

Whole families on UC, PIP, DLA and carers' allowance for each other?
doowkrib · Yesterday 14:35

There are people who need PIP/wider benefits and don’t get them. People who need it and do. And there are people who most certainly don’t need them yet receive them.

Some of the stories I could tell just from people I’ve met through work or in my community. There are Facebook groups dedicated to how to complete the form. There are “support workers” who will write letters of support. Just because you haven’t come across it, doesn’t mean it isn’t true.

My neighbour is a housing officer. She accompanied a man she was supporting to an appointment. Turns out it was his PIP interview. He hadn’t showered for days (despite being able to), went to the appointment in his dressing gown (despite always being smartly dressed and image conscious), and had a new limp.

Harry12345 · Yesterday 14:38

TigerRag · Yesterday 14:17

You know for most people the LHA rate doesn't cover their rent? Shelter did research recently and found 1.9% of rents were fully covered

If you're well aware of disability costs you'd know full well how expensive being disabled can be. Scopes own research suggests that the average disability cost per month is over £1000

Not for having high functioning asd or adhd. How does having a mental health or pain condition cost that? There’s a likelyhood that I may end up in a wheelchair, I have a blue badge. I get meds free and get physio from nhs. I have bought a cane but what else would it cost me?

x2boys · Yesterday 14:38

Harry12345 · Yesterday 14:34

This is a calculation of what she gets with 4 kids with adhd. Again my sibling claims, I am not against benifits and know there are people struggling and wouldn’t wish what some people are going through on my worst enemy but not everyone who is claiming is this bad and again it should not be more than working full time

So shes told the rates of DLA she gets for each child?

plasticplate · Yesterday 14:38

OneLilacHedgehog · Yesterday 14:32

Why do you think that? No one can see if you can dress or wash or cook. It's easy to exaggerate these things.
You don't understand the process at all.

What you say has to be in line with the medical evidence. They didn't believe the extent of dhs walking difficulties because he doesn't have a report that says this and the PIP assessment wasn't in person so they couldn't see it.

Ashhh56 · Yesterday 14:38

OneLilacHedgehog · Yesterday 14:21

Honestly the average disability does not cost that.
Being deaf you have to pay for hearing aid batteries for example. But any aids are usually free.
DH who uses an NHS wheelchair has to pay for taxis, but nowhere near that amount and not entitled to pip.
Mental health issues that mean you rarely go out might require taxis to gp apps and ready meals. Nowhere near the figure you quote.
It's when you employ carers the costs ramp up.

My son's childcare is 800 per month, he can't go to standard nursery because of the level of supervision required, play dough for example contains cornstarch and if he puts it in his mouth it would explode with ulcers and he would be unable to eat for 4 days, I need him to be in childcare because of my own physical disabilities and being completely unsupported, instantly both my pip and his DLA are exhausted by this, on top of that he requires specialized food, because he has a multitude of non Ige mediated food allergies. We go through tonnes of nappies, way more than the average child of the same age due to explosive diarrhea. I'm washing bedding daily, he also requires goats milk formula that isn't provided on the nhs and is double the price of standard formula. Then due to disability and lack of local bus services and me being unable to drive means his taxis to his childminder are 30 per week/120per month. He has weekly appointments at the hospital for paediatrics, which is 40 minutes away, and even using the volunteer car service instead of taxis still cost another £45. I haven't even listed my own costs because I've been sacrificing my own care to provide his lately, but antihistamines aren't provided on the nhs anymore, and I have to get 4x the recommended amount daily, I also have multiple food allergies which I take injections for and need specialized food. Your 95p bag of pasta turns into 3.90 for us as we need buckwheat. My autistic daughter and son with ODD also attend an alternative provision which costs us 420 each half term per child because they can't function in mainstream education and my son is a risk to other children during his meltdowns. This will be covered by EHCP but they're still waiting on getting theirs and I have to fund the transport to get them there 3x a week. It's 45 minutes away.

Don't be so ableist. It's not expensive. Shhhhhh. Just shh. You obviously don't have a clue, deafness is a bad example.

Harry12345 · Yesterday 14:39

x2boys · Yesterday 14:38

So shes told the rates of DLA she gets for each child?

Yes

Harry12345 · Yesterday 14:41

doowkrib · Yesterday 14:35

There are people who need PIP/wider benefits and don’t get them. People who need it and do. And there are people who most certainly don’t need them yet receive them.

Some of the stories I could tell just from people I’ve met through work or in my community. There are Facebook groups dedicated to how to complete the form. There are “support workers” who will write letters of support. Just because you haven’t come across it, doesn’t mean it isn’t true.

My neighbour is a housing officer. She accompanied a man she was supporting to an appointment. Turns out it was his PIP interview. He hadn’t showered for days (despite being able to), went to the appointment in his dressing gown (despite always being smartly dressed and image conscious), and had a new limp.

Thank you, as I said I work in social work and so many need benifits and are entitled to them but I’m worked with so many and know many who embellish stories to get more. Again some have more disposable income than me and I don’t think that’s right

Harry12345 · Yesterday 14:43

Ashhh56 · Yesterday 14:38

My son's childcare is 800 per month, he can't go to standard nursery because of the level of supervision required, play dough for example contains cornstarch and if he puts it in his mouth it would explode with ulcers and he would be unable to eat for 4 days, I need him to be in childcare because of my own physical disabilities and being completely unsupported, instantly both my pip and his DLA are exhausted by this, on top of that he requires specialized food, because he has a multitude of non Ige mediated food allergies. We go through tonnes of nappies, way more than the average child of the same age due to explosive diarrhea. I'm washing bedding daily, he also requires goats milk formula that isn't provided on the nhs and is double the price of standard formula. Then due to disability and lack of local bus services and me being unable to drive means his taxis to his childminder are 30 per week/120per month. He has weekly appointments at the hospital for paediatrics, which is 40 minutes away, and even using the volunteer car service instead of taxis still cost another £45. I haven't even listed my own costs because I've been sacrificing my own care to provide his lately, but antihistamines aren't provided on the nhs anymore, and I have to get 4x the recommended amount daily, I also have multiple food allergies which I take injections for and need specialized food. Your 95p bag of pasta turns into 3.90 for us as we need buckwheat. My autistic daughter and son with ODD also attend an alternative provision which costs us 420 each half term per child because they can't function in mainstream education and my son is a risk to other children during his meltdowns. This will be covered by EHCP but they're still waiting on getting theirs and I have to fund the transport to get them there 3x a week. It's 45 minutes away.

Don't be so ableist. It's not expensive. Shhhhhh. Just shh. You obviously don't have a clue, deafness is a bad example.

Edited

I don’t think anyone is saying there is not cases of people needing the amount but there are definite cases when they do not. I was on benifits myself for years too and it is horrible to think you’re being judged but that’s not what I’m speaking about here.

Pickledonion1999 · Yesterday 14:45

OneLilacHedgehog · Yesterday 14:21

Honestly the average disability does not cost that.
Being deaf you have to pay for hearing aid batteries for example. But any aids are usually free.
DH who uses an NHS wheelchair has to pay for taxis, but nowhere near that amount and not entitled to pip.
Mental health issues that mean you rarely go out might require taxis to gp apps and ready meals. Nowhere near the figure you quote.
It's when you employ carers the costs ramp up.

Exactly. Sick of people churning out this £1000 a month. It is not the case for the majority especially considering most claims seem to be for mental health.

OneLilacHedgehog · Yesterday 14:46

@Ashhh56 I specifically said it is when you need carers the costs ramp up. Specialist nursery is carers.

TigerRag · Yesterday 14:47

OneLilacHedgehog · Yesterday 14:30

I am the we.
Most people get what they need from the NHS. Ask for a care needs assessment, wheelchair assessment etc. Some smaller aids are not provided such as sock aids and you absolutely can buy them from Amazon.
Specialist wheelchairs to play sport or go off road are expensive. But only a small proportion of disabled people need these.

If the NHS won't give you a wheelchair, walker or home aids, then you have been medically assessed as not needing them.

Not my experience. I was told they don't supply things like electronic magnifiers.

Disability aids are far more than a wheelchair

Harry12345 · Yesterday 14:53

TigerRag · Yesterday 14:17

You know for most people the LHA rate doesn't cover their rent? Shelter did research recently and found 1.9% of rents were fully covered

If you're well aware of disability costs you'd know full well how expensive being disabled can be. Scopes own research suggests that the average disability cost per month is over £1000

for everyone I have dealt with their rent is covered

Owninterpreter · Yesterday 14:53

Harry12345 · Yesterday 14:38

Not for having high functioning asd or adhd. How does having a mental health or pain condition cost that? There’s a likelyhood that I may end up in a wheelchair, I have a blue badge. I get meds free and get physio from nhs. I have bought a cane but what else would it cost me?

The individual costs will vary from person to person. The point of the cash is an individual is the best placed person to know whats needed. Its not a perfect benefit. Some people will get more than they actually spend and others less. Its just recognition that if you meet the criteria you likely have additional costs.

Things you might not have thought about as disability costs are things like needing odd job people to change your light bulbs when you can no longer reach and arent safe to do so, decorators when you previously painted yourself, heating costs as you arent so mobile so spend more. My aunt has to have a lot of adaptions at home like wider doors, wet rooms, different worktops etc to allow the wheelchair to get round her home. She pays extra delivery costs as she cant get out and about as easily, she actually has someine come in and wash her hair as she cant use her arms that well either and a cleaner to do stuff like change her sheets as the arms_wheelchair combo make that tough..Her taxis are more expensive as they have to be wheelchair adapted/big enough for the chair in the boot.

OneLilacHedgehog · Yesterday 14:53

TigerRag · Yesterday 14:47

Not my experience. I was told they don't supply things like electronic magnifiers.

Disability aids are far more than a wheelchair

I am well aware of that. They don't provide small aids as I said like sock aids. You have to buy your own magnifying glass for about £15. Electronic ones are a nice to have, not essential. If you need them for work, it's access to work that supply these.

TigerRag · Yesterday 14:55

OneLilacHedgehog · Yesterday 14:53

I am well aware of that. They don't provide small aids as I said like sock aids. You have to buy your own magnifying glass for about £15. Electronic ones are a nice to have, not essential. If you need them for work, it's access to work that supply these.

As someone registered partially sighted and electronic magnifying aid isn't "a nice to have". A £15 magnifying glass is actually useless

LakieLady · Yesterday 14:55

x2boys · Yesterday 11:37

PiP is really specific essentially if you csn care for your self and prepare food ( and that can be as simple as a microwaved meal
And get yourself from A to B independently
Than you are unlikely to be successful regardless of what conditions you may have.

The PIP standard is actually a meal cooked from scratch from fresh ingredients, so microwaving a ready meal doesn't meet it.

OneLilacHedgehog · Yesterday 14:56

Owninterpreter · Yesterday 14:53

The individual costs will vary from person to person. The point of the cash is an individual is the best placed person to know whats needed. Its not a perfect benefit. Some people will get more than they actually spend and others less. Its just recognition that if you meet the criteria you likely have additional costs.

Things you might not have thought about as disability costs are things like needing odd job people to change your light bulbs when you can no longer reach and arent safe to do so, decorators when you previously painted yourself, heating costs as you arent so mobile so spend more. My aunt has to have a lot of adaptions at home like wider doors, wet rooms, different worktops etc to allow the wheelchair to get round her home. She pays extra delivery costs as she cant get out and about as easily, she actually has someine come in and wash her hair as she cant use her arms that well either and a cleaner to do stuff like change her sheets as the arms_wheelchair combo make that tough..Her taxis are more expensive as they have to be wheelchair adapted/big enough for the chair in the boot.

Why are you doing this? I said costs ramp up when you need carers and then you fire back and example of someone who has to pay for carers? It's a perplexing response.

By the way loads of people not entitled to pip are too ill or disabled to decorate or do DIY, that is not uncommon.

Ashhh56 · Yesterday 14:57

OneLilacHedgehog · Yesterday 14:46

@Ashhh56 I specifically said it is when you need carers the costs ramp up. Specialist nursery is carers.

Yes, and alot of disabled people need carers. Which is what disability money is designed to cover, Unfortunately not everyone is in a position of having unpaid carers available l was recently assessed by the council and our needs were so great they provided daily carers for myself to get around the house to wash safely due to being high fall risk.

I do agree with you on the mental health claims - it probably wouldn't ramp up to anywhere near what we have to cover each month, but the problem is, if we start taking benefits away and deciding no one has extra costs, the people who desperately need them will absolutely suffer, I don't claim for my son and daughter, only myself and the one with physical disabilities because I felt awful taking so much money from the taxpayer. Even though they'd be entitled.

Quite simply put, if I didn't get the extra payments, my son would probably be in care, and I'd be no longer here due to being either completely torn to shreds mentally from losing my kids, or being unable to attend a hospital 2 hours away for specialist treatments my local hospital doesn't provide.

I agree. I think it needs to be changed and it's completely unsustainable. But also, how? Without indirectly taking from those who absolutely require help?

SlugJam · Yesterday 14:58

Itisbetter · 05/09/2026 23:54

The idea that having a child with disabilities implies you need parenting classes any more than the next parent should be seen for the offensive tripe it is.

Exactly this. I had 2 non disabled children, followed by a disabled child. Why would my 3rd child being disabled mean that I need parenting classes any more than any other parent?

OneLilacHedgehog · Yesterday 14:59

My point was loads of people with disabilities have nowhere near a £1000 a month costs quoted.

Harry12345 · Yesterday 14:59

Owninterpreter · Yesterday 14:53

The individual costs will vary from person to person. The point of the cash is an individual is the best placed person to know whats needed. Its not a perfect benefit. Some people will get more than they actually spend and others less. Its just recognition that if you meet the criteria you likely have additional costs.

Things you might not have thought about as disability costs are things like needing odd job people to change your light bulbs when you can no longer reach and arent safe to do so, decorators when you previously painted yourself, heating costs as you arent so mobile so spend more. My aunt has to have a lot of adaptions at home like wider doors, wet rooms, different worktops etc to allow the wheelchair to get round her home. She pays extra delivery costs as she cant get out and about as easily, she actually has someine come in and wash her hair as she cant use her arms that well either and a cleaner to do stuff like change her sheets as the arms_wheelchair combo make that tough..Her taxis are more expensive as they have to be wheelchair adapted/big enough for the chair in the boot.

i am not speaking about people like your aunt though. And for the last time I do not think you should be getting less when you work full time and have to pay full prices for everything.

TigerRag · Yesterday 15:00

OneLilacHedgehog · Yesterday 14:59

My point was loads of people with disabilities have nowhere near a £1000 a month costs quoted.

You think scope are lying?

OneLilacHedgehog · Yesterday 15:01

TigerRag · Yesterday 15:00

You think scope are lying?

I think scope in coming up with this figure include all the many people in care or residential homes whose care can cost £20k to £30k a week.

Nottodaythankyou123 · Yesterday 15:03

FirmSnake · Yesterday 06:56

Nice idea, but entirely unaffordable. A line has to drawn somewhere, or as we are seeing, the definition of need will continue to grow.

Yeah but how do you draw the line? I think that’s the difficulty!