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

[Hutinthemiddleofnowhere]

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.

I'm in Scotland and it is absolutely not true that all medication is free. I have multiple medications that I have to fund myself in addition to loads of supplements and dozens of other costs for various aids, help etc and private medical care for when the NHS is incompetent/likely to cause you harm due to their total lack of knowledge of some conditions. It sounds like the disabilities your family have experience of are either relatively mild, low cost or both but not everyone is in that situation.

They’re really not, my dad and partner are on 13 different tablets a day, I am on 4 different meds my sibling on 6 as has an autoimmune condition, not one of us pay for medications

You clearly only work with certain parents and not all parents. I work in an SEN school and yes a small percentage of parents face similar difficulties to their children, I think this to be expected due to the genetic aspect of some SEN. Some kids however are in care and completely let down by the system - they have nobody to fight their corner both in care and education. A good percentage of kids come from hard working, loving supportive homes and have been through hell trying to get the LA (and often school) to respect EHPC requirements. I have a lot of empathy for parents who provide the best they can despite being burnt out and unsupported.

Well then you've all been very lucky. The medications that I can't get on the NHS cost me a lot and I wouldn't be able to afford them if I didn't have family members helping pay my bills.

Sorry, just to clarify I obviously don't mean you're lucky to be disabled - I have enormous sympathy with what you must be dealing with on a day to day basis and it's fantastic you are managing to hold down a full time job. But be glad your meds are provided - it's annoying having to spend money that could go on something else for something that should really be free.

I’ve come across families like this but more complicated, multi generational, complex networks of cross-benefit claims (e.g. they are carers for each other, one with physical disabilities, the other with MH disabilities); multiple children all with different, absent fathers, all with SEN… I don’t know what the answer is but I think that although it’s a tiny fraction of the “benefits bill”, it’s immoral to let children grow up in such inter-generational dependency that perpetuates the cycle. Third sector community organisations are often the most effective at intervening.

The NHS provide medications that are needed. If you have to pay, you can get an annual certificate for £114

It sounds like you are taking multiple supplements and medication that are not medically necessary

They arent supporting them on one wage though are they? Why are some people so determined to speak about benefits as though it isnt real money? It is income - it just isn't earned.

The NHS only provides them if they’re available on the NHS, many medications aren’t, and there can be very very lengthy delays before new medications are available via the NHS. The NHS also only supports certain treatments, a particular muscle relaxant is a very common treatment for my husbands condition, the NHS don’t consider reduced muscle spasms as cost effective, so the NHS don’t prescribe it for his condition. Luckily when he was under NHS care we could afford to pay for it privately alongside his NHS care.

There's 18 months between my brother and I. He's older and like me he's Autistic which wasn't obvious until he was around 6. Not everything is obvious at birth and nor can everything be diagnosed during pregnancy. I'm 37 and was born with something that's usually diagnosed during pregnancy even then you have no idea what your child will be like and how much support will be needed. It wasn't found out that I had it until my 20s

2 cousins of mine are disabled and there's 5 year age gap. Youngest was born premature and they knew he was going to be disabled because of it. They didn't know DS1 was disabled until he was 7/8

I have met people with multiple children (look up Reann Jenkins) who keep having child after child and their children's disabilities are diagnosed during pregnancy. It's difficult to have sympathy for the fact that they're struggling with so many disabled children. It's the children I feel sorry for

I think having three children is an incredibly bold move in this day and age. You're right that lots of people don't realise their children are disabled until they are slightly older but this should be factored into family planning alongside all the other additional costs of having a third. If you're not completely sure that you can support and mostly fund more than two disabled children then why have a third? A third child is a huge luxury and it's really irresponsible to look to the state to underwrite your family planning decisions. With every child you are rolling the dice and it feels like you would have to be in a very privileged position to do this more than two times with full confidence that you can manage the consequences of your decision yourself.

You see threads all the time on here with people asking if they should have a third child. They clearly aren't in a position to cope if the third child is disabled or the existing children turn out to have additional challenges. Ultimately it's an incredibly selfish decision and too many parents think they can choose to go ahead and rely on the rest of us to fund the support the family will need if it all goes wrong.

So when they both need physical support?

It doesn't necessarily conflict. If one person is getting PIP because they can't cook a meal, but gets carers allowance because they cook meals for their partner (I'm being ridiculously basic), that would be a problem. But it's quite possible that one person can't dress themselves because they don't have the fine motor skills, but can help their partner stand.

Plus, it's caring as a whole. If someone has seizures, being present and alert to seizure activity is caring, even if they would be present for social reasons otherwise.

The problem is if you tighten the criteria, (and it is already tight) the chancers will just exaggerate even more, and some genuine cases will miss out, as people with mental health conditions already struggle to navigate the system.

Sadly they very much don't provide what's needed and I'm in Scotland so wouldn't be eligible for this certificate in any case by the looks of things. And it only covers NHS prescriptions which I can't access for different reasons corresponding to each medication.

There are a great many people in a similar situation to me for one of my meds/conditions (ADHD). The medication is very much needed but they've closed the adult waiting lists in some parts of the country effectively blocking any prospect of an NHS prescription and forcing people to go private. Or else the waiting lists are 4 to 10 years long with no prospect that they'll agree to prescribe your meds even if you ever get to the top of the waiting list, on grounds such as the diagnosis wasn't made by the NHS (well of course it wasn't if the waiting list was closed or 10 years long at the time). Some people have then been put back to the bottom of the waiting list to await NHS diagnosis which might take another 10 years. It's madness.

For my other meds the situation is more unusual and there aren't many people in the same boat but I won't go into that as it's identifying (ultimately I am having to buy these meds from abroad). But there are many people who cannot get much needed medication or even a prescription on the NHS for a whole host of reasons and this is very much part of the cost of being disabled.

No, some of the medications are very much medically necessary but it's complicated. Others, like my ADHD meds, well I suppose it depends on your definition of medically necessary, but they help me immensely and would be prescribed on the NHS in other health boards but not in mine (or at least not without a 4 to 10 year wait - a postcode lottery basically). Or in England you could do shared care which doesn't exist here.

I don't think the NHS consider any supplements medically necessary, do they? I've certainly never been offered any supplements even when quite serious deficiencies have come up in NHS testing (eg vitamin b deficiency due to a genetic condition, iron deficiency). I've just been told to buy these things privately. There are other supplements that have helped me reduce the amount of strong medications I'm on which has led to a reduction in side effects which I welcome. So while the NHS may take the view that they are happy to just prescribe one of my medications in higher doses, it helps me manage my condition and reduce side effects by taking a smaller dose of meds in combination with doctor-recommended supplements. These are all normal and typical costs associated with disability and PIP is there to give some independence in making choices in how you manage your conditions/disabilities. I only get to spend it on these things though, as I said above, because other family members have stepped in to cover most of my bills. It's vastly less than minimum wage even when combined with ESA even for someone with a lot wrong. Many people have to spend their PIP on living costs and aren't able to spend it on what it's intended for.

Because??

Why are you saying it’s not medically necessary? Biais because if it’s not prescribed it’s worth nothing?

Fwiw medicine is very limited. There are cases where it’s amazing. Esp in case of emergencies.
For chronic illnesses though, it’s usually limited to managing symptoms. Often badly.

Those supplements you think aren’t necessary? That’s what kept my daily migraines at bay for years. When medicines couldn’t do it.

You are told to buy iron supplements or vitamin d because they cost about £2 for a month's supply from the supermarket.

Thanks so much for this - that is really helpful! xx

Carer's allowance is about £80 per week, and is deducted from UC.
No one is living it up on CA.
Only one person in a joint claim gets the extra from LCWRA.
It is telling that people get up in arms about what money a family of disabled people get.

I knew couple who are both on PIP and carers for each other. The DH had physical health issues, and his wife had MH issues. He had a degenerative health condition and he needed a lot of help with getting dressed etc. His wife had severe PTSD and agoraphobia. He was a support for her, and could help calm her down, and she would help him wash and dress.

I know £86 carers allowance is not a massive amount. But an additional £172 per week is not insignificant.

It's deducted from Universal Credit £ for £. The only benefit of it is that it gives class 1 NI credits.

The benefit cap should be set at 75% of full-time at NMW. So that anyone who works is better off than anyone on benefits.

You suggested that I was taking multiple medications and supplements that were not medically necessary because the NHS isn't paying for them. I was pointing out that the NHS does not routinely pay for supplements even when they are medically necessary, regardless of how much they cost.

And while you can indeed get cheap iron and vitamin tablets in supermarkets and chemists etc, the ones I need cost more on account of my specific conditions and medical history. And then I take a dozen other supplements on top of that and I have to order them all online and pay delivery costs. I can't get all my supplements from the same vendor so I incur multiple delivery charges most months. Disability is expensive and easily costs many of us in the region of the £1000 a month quoted by scope, even without care costs (as above, these medications and supplements are far from being my only cost).