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

Thanks for your kind words. What is your job please?....I was navigating the claim on my own. I think I was too exhausted and overwhelmed to appeal tbh and absolutely didn't know the system having never claimed anything before....and was so disheartened and upset at the decision that I didn't pursue it. I wasn't given any advice about how to respond and didn't realise that I might have won on appeal. It was such a difficult and distressing time. I was told that because I could get dressed within 15 minutes I wasn't unwell enough! The fact was that I had energy for about an hour (max two hrs per day) but that was it. It certainly wasn't enough to be a mother, housewife and hold down a job. Yes I'm super grateful and relieved to have seen a private functional doctor who helped me enormously with my health 🙏🏻

anecdotal stuff may be true on an individual, case by case basis but it doesn’t help anyone understand what the big currents / trends / society wide picture is. On threads like this you just get individuals sharing their experiences, and others wirh fewer direct experiences deciding on emotional bases which is probably representative.

can anyone point us to a good up to date book or source which gives an academic but general-reader-friendly account of the issues in this thread?

This!

also when you have a child with a serious disability it is harder to have a job, because it isn’t like you can ask a mum from the school if she will mind him/ her for 4 hours so you can work late on a project.

when people have typically developing kids they get to see light at the end of the tunnel re childcare. It is easier to accept you are paying massive proportion of your salary because it doesn’t last long.

that said I don’t have any first hand experience and know very few families in this situation, but the two I know very well are. It like you describe.

Completely agree OP. I have disabled DC they receive highest rate PIP to give you an idea of the impairment, I can’t get carers as I earn just a little too much in my part time job. We have received state support for 18 years.

my support circle of other SEN parents are not like you describe but when I engage with the wider community at hospitals, clinics, talking to social workers etc it is precisely what you outline. I agree with every word you have written and have seen it getting worse the 18 years I have been in this world.

I suspect they’ll try to reframe disability claims for ND applicants. When the population is swaying towards ND rather than a NT society, they’ll reconsider it as a disability.

How many people on the prison system have ADHD? You should know that % as a professional.
I think it is 90% in young offenders boys. Doesn’t that make you question the diagnosis? Surely neglect, growing up in an addicted chaotic home, lack of vitamins and minerals, never taught anything but how to win over people, steal, sell drugs.

(Talking about young offenders high diagnosis rates) ➡️ I personally think that their front lob is not developed due to their upbringing in a lot of cases.
I have one neighbour with 4 feral kids, they cause so much trouble, wander all hours, smash plant pots, scratch cars, cause fights, the mother is a drunk, they all have a diagnosis of ADHD, they’ve never had a vegetable or read at book at home.
There are many families in similar circumstances in certain areas. Sadly I see at least two of her four going to prison in the future. The only people who tell them no, is their teachers, if you complain she says they can’t help it, they have ADHD.

The parents smoke weed around them from birth.

This is a really important point which seems have to have been missed.
Posters are taking exception to their own circumstances and their SEN community and rightly so.

However, the very people who the OP is describing are unlikely to be on MN and putting their hands up saying oh yes that sounds like me and my family.

For those of you reacting negatively, you have missed the point.
the OP is not talking about you. There are people who genuinely need state help - that’s why it was established. You are those people. The state help enables you and your family in the correct way

there are people who state help is enabling in the wrong way. The OP is talking about those people.

once we establish that we can have a mature conversation about what to do.

i know exactly what OP refers to. My MIL (in another continent) had two more children 20 years after her first two. All have ADHD.

My husband is one of the first two (born 1980). He had a hard life but learned to work on a farm when living with grandparents. He is also reliable and honest - something else his grandparents instilled in him. He has taken that work ethic and he has built a life with me here in the UK. He is a labourer/gardener. He has a reputation for working hard and has a list of people waiting him to have a spare day to work for them.

his brother came to stay with us last summer (born early 2000s). He didn’t like working, had no initiative, The effects of motherly neglect (and fatherly neglect to the extend the dad spent hours working as a labourer whilst the mum stayed at home). It was clear he had picked up every bad habit from the mother. She couldn’t be bothered to get him to school. He expected everything to be paid for him. We found him a job (through a friend). he kept ringing in sick and he was lazy on site. He had a “bad back”. But he was able to go out dancing and clubbing!!! The friend had to let him go, “I’m sorry. I gave him the job because I thought he’d be hard-working like his brother.”

It's isn't an anomaly in some communities. It's very hard to distinguish disability from the impact of a chaotic and often quite traumatising childhood. This isn't controversial. Lots of studies show this.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9796059/
ADHD is only diagnosed when traits reach a certain threshold. It's easy to see how these environments are pushing children across the threshold.

What is your point? That’s the effects capitalism. A whole other thread, surely?

You saying this does not make it true. Actually it’s bollocks. There is no doctor who would be stupid enough to risk their reputation and credibility (not to mention being struck off) by faking a diagnosis for money.

And yes, the NHS does outsource diagnosis assessments to doctors doing independent work nowadays because the NHS has had money stripped away from it for years.

A lot of people om minimum wages are being second class. Work hard only getting by.

This. The low power level jobs that were once available are now very hard /impossible to find. As an employer, employing people who cannot regularly turn up and do the job that they are paid for is a significant management challenge that doesn’t grow the top line / makes the business thrive.

It’s ‘easier’ all round for people to live off benefits and they have a better quality of life than working as they have more disposable income and more time.

The harsh reality in the business I work in, is that trying to employ an unskilled worker, on a salary under £45k is just not attractive to someone in a rented house with children as they are better of claiming a variety of benefits.
Someone will say then pay them £45k per year to do an unskilled job but the reality is our customers will not pay higher prices and the business will close. Why should business owners work really hard to make no profit?
if they make no profit, they also pay no corporation tax which means less money for benefits.

I think I can see where `OP is coming from.

But having children with disabilities is a bit of an anomaly; the sort of people she is describing exist without DC with disabilities and plenty of people with are not like the families she is describing.

I think there is a real problem with multi-generational and whole families claiming benefits. I know families through my work who fall into this category and it's a cultural issue rather than genuine needs.

I would rather that UK paid for these services than forking more or less random out.

It seems to work a lot better in other countries not to have all these paid family members. One benefit would also be useful to hand out. My native country it's a benefit a bot more than minimum wages. Not a open pot of money. At all.
No pip no extra money for being your partner's or mum's carer. No first to council housing. Not all that fuss.

Comments like this are ridiculous.

If you are working FT in a job you hate and can barely afford to keep a roof over your head then of course you will begrudge people going on multiple holidays year and enjoying a higher standard of life than you all at the cost of the taxpayer. It isn't equitable and it will drive all sorts of perverse behaviours.

Disability and ill health is nowhere near as black and white as you and many others suggest. Many of us are slogging away at work with chronic conditions and poor health. Over three quarters of people over 45-64 have a chronic health condition and lots of these will make working harder. We can't all claim benefits and stop working. Very little help and support is available because guess what, there is no money. Yet someone pointing out that some on benefits shouldn't be on effectively tax payer funded holidays and you get called jealous. It's like the ultimate playground taunt. If you don't like something and think it's wrong then you must be jealous... We need to be able to have nuanced debate without resorting to lazy tropes like calling everyone jealous or benefit bashers.

I have three kids with ehcps who get dla or pip. Imagine my surprise to be in this situation as a STEM graduate from a corporate role.

I have met hundreds of other SEN parents. I'm also a SEN school governor.

What I have learnt? Lots of parents also have undiagnosed SEN symptoms. Some have grown up with no support to escape their own lack of support / diagnosis/ education in some cases.

Gobsmacked you haven't seen this.

How many people on the prison system have ADHD? You should know that % as a professional.

I have been to parenting classes and thought it's a load of bollocks. Because I have yet to find one that shows me how to "cure / fix / remove the sysmtoms that get my kids diagnosed" .

What's the answer? Remove dla, pip, carers allowance? Without those I'd struggle to house my severely disabled son at times and would certainly have to think hard about a residential setting for him.

Spoiler, I'd not be paying for that and it's more than his DLA.

Remove diagnosed? Let's all the kids get expelled to a pru? Then drop out of education? Find jobs for kids who grow up with no gcses? You want to employ those kids as adults? No? Want to pay their benefits? No? Want them living rough on your high street? No?

Give me the perfect solution whee no one pays for anything and SEN kids grow up educated and able to fully contribute to society. Because you have the golden bullet right there.

After that give me a answer to stop heart disease and cancer to save the nhs. Unfortunately it's not just fat lazy smokers who get heart disease or cancer. So it's a bit more tricky to say they are just lazy bad spongers.

Unfortunately op what you witnessed is identical to my personal observations. I feel sorry for the kids to be honest. This isn’t benefit bashing, it’s an observation that the cycle of low expectations, mental health problems caused potentially by lifestyle then going forward Sen caused by parenting. I suspect that in time we will realise these cyclical cases have underlying genetic conditions hence multiple generations.

kids do break out of the cycle but typically it takes dedicated teachers and other adults in their lives who demonstrate another pathway. I know a lad who has (neither parents nor grandparents worked) hes a computer coding person of some description.

That would please some people, make no mistake about that.

Why should people with disabilities be treated like second class citizens and have to justify what they spend their money on when they already struggle in a world that wasn’t designed for them?

I can always tell which people have no idea what it’s like to raise disabled children or how much more they cost than non disabled children when I read comments like yours.

My friends disabled child is out of school atm because schools are shite thanks to many years of austerity and she’s paying £90 per hour for her child to have a SEN tutor.

If you want a two-tier system of treatment for humans then there is a word for that - fascism.

Shall we go back to having workhouses and orphanages??

The majority on pip would like to do something.

wheelchair accessibility in the current society is appalling. I get pip following an accident which means I use a wheelchair full time.

I go to a lot of disability social groups now (don’t work any more as medically retired) and honestly the majority would love to work.

but employers don’t want someone in a wheelchair who physically can’t access most of the shop/museum/workplace.

it’s a bit better now as working from home is more accepted so some more of my friends have got part time jobs.

it would genuinely cost an absolutely insane amount of money to get everyone on pip working. Think about the limited possibilities - the jobs most easily available are care, teaching assistant, retail. Someone who is blind can’t work as a carer in a care home without having a 1:1 to support yuem.

i used to teach (from a wheelchair) and my school once assigned me to a school trip out to support another lad in a wheelchair. I’m in a wheelchair myself - I can’t assist him with toileting or help him move.

asking people on pip to do free work would have a massive take up (see the occasional internships for disabled people the government runs - horrendously oversubscribed and very hard to get on) but cost an absolute bomb.

It sounds like you should have been able to claim something, when you were ill. The fact that you could not, has no bearing on anyone else who does. The PIP process is not interested in what your illness, or disability is. It is about how an illness, and disability impacts a person's life. If that is not communicated on the form properly, then the claim is likely to be denied. Nobody is getting paid PIP for 'sod all'. That is unfair, and untrue to state so.

I do have to dispute this. I know a few people with private diagnosis for various conditions, when you are paying you can often get the doctor to write / say whatever you want, make amendments, pay them to write letters and other documentation, which can then be submitted to DLA and PIP.

It’s an uncomfortable truth but a truth nonetheless 🤷🏻‍♀️

This is the biggest load of self-serving do-gooder tosh I've read in quite some time.

As you well know, DLA is hard to get, as is PIP. UC isn't that easy either, comes with obligations, and isn't actually enough to survive on (without the housing element; not sure if that makes it any easier). I would never go to what sounds like an appalling and badly run type of 'presentation' you got so much out of it. (By the way, why was the TA making coffee for everyone? Surely her time would be better spent elsewhere? Buy a big water heater and have paper cups out and a jar of nescafe for people to make their own coffee.) Why do people like you look at someone struggling, broke, unable to work or pursue further education due to caring responsibilities and say, 'I know what she needs? A parenting class! That will fix it all!'

Benefit did NOT make these parents the way they are. How about looking at some research identifying approaches other countries have (successfully) tried and working out which elements would work here?

I take issue with the OP thinking she knows what people are claiming PIP for (anxiety and MH she says). I doubt she knows them in that much detail. Apart from anything else, the threshold for receiving PIP for these issues is extremely high. My psychiatrist describes my anxiety as ‘severe’ and yet I did not get a single point on PIP for issues created by anxiety or MH. I expect lots of people I know well assume I am receiving PIP for anxiety and mental health. I am not. I am receiving it for invisible physical health conditions.

She also seems to think she knows what these people do all day in their own home/ (game and watch Tv). I really doubt she actually knows.