To be terrified about PIP?

[BobbyBiscuits]

I've tried to blank all this out for ages, but today it hit me when the government basically are saying I'm going to (they want me to) have my PIP cut off?
My main illnesses are severe depressive disorder, general anxiety disorder and severe anorexia. I've severe PTSD symptoms and also think I may have ADHD but have not been able to get diagnosed due to phobia of MH services since I got sectioned.
I now have physical symptoms also and severe osteperosis which I put on my last forms. But had no assessment for several years.
I'm praying this is BS from the Tories and they can't do it anyway as they'll be kicked out.
Or could labour still continue this assault against disabled people?
It would halve my already tiny income, other half is from ESA, and they could kick me off that too even though I can't do anything!?

What do people think?

I do think it’s strange that some people actually seem to envy disabled people.🤷‍♀️

Perhaps best to remember that disability, unlike any job, is 24/7, 365 days a year.

Being fit and healthy, and able to work/pursue leisure activities without difficulties, is easier than disability.

The idea that stopping PIP will somehow “cure” anyone disabled is as nuts as thinking that stopping all housing/council tax subsidies will bring housing costs down.🙄

Disability costs more to live- it’s as simple as that.

It really isn't the government that's to blame for people's views. The government if anything is jumping on a bandwagon and cynically reflecting a significant proportion of public opinion. We live in a democracy and a fundamental principle is that the government should reflect the views of the people. Unless we want to undermine democracy then we need to understand why these opinions exist and seek to change minds or systems so that support for the disabled and the support they need improves.

Of course, you will always get some ableism but I think attaching that label to anyone that expresses concern about how we are managing this issue is lazy, inaccurate and dangerous. It polarises people and gets everyone's backs up unnecessarily.

The reality is that a quarter of our population is disabled and this figure is rising quickly as we become older and sicker as a country. The idea that we make allowances and offer additional support to the vulnerable in society (children, the old, the disabled) has always been broadly supported but what happens when the proportion of society considered vulnerable grows so much that it begins to put extreme pressure on those expected to supported them. The working population is shrinking and the number of dependents is increasing.

It doesn't take a rocket scientist to realise that those expected to shoulder this growing burden on top of their own issues and problems will begin to feel the pressure. It is therefore absolutely imperative that we focus on those most in need and we start to be very careful about where help and support is allocated. I know this forum likes to pretend that money and support is an infinite resource but it isn't and we need to accept this otherwise everything will be stretched so thinly that the system will fail. This might be a bit of expectations management for some disabled people in terms of how much society can cushion them from the impacts of their disability. I don't say that out of bitterness or spite but in a spirit of realism. If we don't get real then we may well break the spirit and logistics behind the welfare system that most in the country support and want to continue.

There are countless others including government ones. You just need to press a few buttons. The £8 billion ( Gov own stats) caused by errors in the system could offset it even further.

I'm curious. If I was to do a search do you appear as prolifically on as many threads about about tax evasion/avoidance/corruption etc..or is it just ones about disabled people?

If it is just mainly the ones about the disabled what does that say about you and your prejudices?

@Bumpitybumper great post

Disabled people shoulder this burden too. PIP is not an out of work benefit. They pay tax.

And not everyone is permanently disabled. Simply because someone claims PIP at one point in their lives doesn't mean they always will. They may be a high rate tax payer for decades.

It's just another divisive tactic. Them and us. But the reality is its nothing like that and it's disingenuous when people try to claim it is.

Do you think labour are ‘them and us’? If not; what changes do you expect to see when they are in power, given all the Tory cronyism and waste will be minimised?

Agree with all.

People (in every aspect of life) are going to have to start supporting themselves more.

I don't think it's relevant whether disabled people work (roughly half do) or if they have ever paid tax. That implies that this should somehow be a contributions based system which I don't think you or many other people would support. I also think bringing these things up does imply a different type of division. The 'deserving' disabled that have worked and paid tax and the 'undeserving' disabled that haven't.

The facts are that the number of disabled people is growing in real numbers and as a proportion of our society. There is an expectation from the disabled that they are supported to a certain level that involves a lot of money and support. This is obviously more doable when you have a smaller proportion of the population looking for this support but when it's a large and growing proportion then it becomes much more difficult to fund. If you look around the world and in Britain's quite recent past, it isn't a given that the disabled have been entitled to support in the way they are now and that is utterly tragic. We must be very careful to not break the safety net we have created by overloading it. This means we need to really think about who is getting what and how much we can alleviate the impact of disability with the resources we have. In an ideal world, the vulnerable in society would get everything they need but we don't live in the ideal world, we live in a heavily indebted, economically stagnant Britain that has a whole host of other expensive systems it needs to fund.

I’m not quite sure what people want in term of cutting benefits or pip.

I can’t wave a magic wand and cure my son. He’s at life skills we are doing our best.

People are not really getting the alternative to many parents still caring for adult children. Also the expenses involved - it will come from a budget of the government be it pip or social care.

My son has additional expense for instance because he can’t be left alone at home alone we had to take him on holiday.

This year we did not have approved agency funding - his benefits would not cover his living expenses and the cost of the holiday but there was no Pa to look after him so he had to come with us. Who covers that expense! He’s an adult and his expenses are not my problem.

So who pays then! he’s an adult male and we had to take him with us - not flipping through choice.

I wanted a romantic break with hubby - I got a third wheel (adult son) who decided his shoes did not fit 30 minutes before the flight and blocked the toilet 3 times - plus elsewhere in the hotel at other times. He also decided that he hated the holiday for the first 4 days before liking it.

We could have just dumped him at city hall for emergency SEN care - tempting!

As it is we are now allowed to use an agency to have some time away next year paid for from social service budget - but it’s about £20 per hour. That works out more expensive than the holiday but it comes out of social services budget.

So one way or another it’s still an expense just a different budget

Agree with this. I have a close relative who has Downs’ syndrome and asking them every few years if their condition has changed makes absolutely no sense to me.
Same with conditions that are clearly barriers to work/cost more to live with.
I am hoping that the reforms will mean that people who absolutely should claim PIP can get it and those who absolutely can’t, shouldn’t.

I agree. Anything like Down’s or cystic fibrosis etc should be instant entitlement for life, no further assessments.

@Bumpitybumper we can wish for disabled people to need less support, but there's no magic wand that will suddenly make people able to work, or work more hours, without investment. There's a reason why the change from DLA to PIP didn't save money; there were no swathes of people who didn't need their benefits. So what do we do when we take people 's PIP away and find they still can't work, or deteriorate further as they are tipped into poverty? None of the people who yell about reform offer any solutions.

If you're already poor, you can't pay for therapy up front and claim it back.
If you can't afford to get to work, you'll lose your job.
If your next available NHS appointment is in 2025, how can you get better?

The PIP reforms proposed completely fail to address these issues, and so do you and yours. You just shrug your shoulders, say 'oh well, we can't afford it' and then what?

"They" may not get in again but irrespective... the current benefits system is entirely unsustainable so Labour will undoubtably have to make adjustments/cuts.

So a PA takes me son out for the day - she’s working and has lunch and a drink whilst taking him to the cinema -

Who pays for lunch for the PA and a drink?

My son goes out with the Pa and refuses to get on a bus and another bus - 2 hours late they get him back - that’s 2 hours extra Pa time at say £12 per hour - the Uber would have been £8. As a result of the stress he/ she resigns so a new advert is put out ( £250 cost) parents have to interview and train. There are administrative expense signing the new Pa up for PAYE and issuing a contract. Who covers the advertising costs for a PA?

If pip is reformed the money to cover PA expenses has to be found for instance. In the same way that employers cover expenses.

So when an agency Pa moves into our house to look after our adult son for a week - who covers that expense eg their share of the food / drink / transport with son.

People can say it’s too expensive but so is defence and pensions. I can’t wish those expenses away.

Ultimately do people want long term disabled to have reasonable ( not great but just ok) loves or be punished for disability and be left with no enjoyment in life etc. The fact is that prisoners cost far more per capita!

How can they though?

Example of my mum - ECT in 1988, brain damage. Diagnosis of EUPD. Was never fit to work from that point on. Had two children, married, husband walks out suddenly, now single mum to two children.

Still unfit to work. Benefits in that period were £80 per week. Dad didn't pay CSA.

Mum now has early onset dementia. She's not yet 60. In a care home. Can't speak, can't track with eyes, no voluntary movements - can't even lift her hand to scratch her nose - beyond reflex reactions - cannot walk. Can barely eat and drink. Doubly incontinent. Zero ability to care for herself.

At what stage could she possibly have saved any money to support herself?

Similarly younger sibling - autistic, mental health, LD. Very complex individual. Can do some voluntary work but would not be fit for regular full time employment at all. Barely gets enough to live off. Even if she did, she isn't allowed to save or her benefits stop.

In both cases - sibling will never marry. She will never have children. She will never fully independantly. She is permanently dependant on others for all her daily needs. She is mostly OK but she has her bad days.

Parent was never truly happy. Spent their entire life at the GP. Multiple suicide attempts. Only now that they are basically a shell of themselves, can I slightly comfort myself with the fact that her demons are I hope, long gone in her mind; albeit I have no bloody idea if they truly are and she just cannot communicate her distress anymore.

Both of them have been and for the rest of their lives will be dependant on state benefits. Unless someone takes my sister on to work full time, which is highly unlikely to happen sadly, she would need at least two adults with her supporting her through every shift. She does wash dishes at a cafe but that's as good as it gets, even then she needs a lot of extra help.

In both cases this situation is not their fault. My mum didn't ask for ECT. She didn't ask for brain damage. She certainly never asked for dementia, I remember telling her and the distress she had that night will haunt me for the rest of my days - I still wake up most nights sobbing from nightmares.

My sister was born as she is. She hasn't got the intellectual capacity to improve her situation.

I have always, always tried to look after them and have given up 30+ years of my life to do so but there comes a point where I have to care for myself, and let others take over. How can I possibly support two adults and myself on one wage? How do you do it? Believe me I tried, and I've had three nervous breakdowns before the age of 30 to prove it isn't doable.

And then what, exactly? What do you propose? Don't bring into the debate red herrings around other government spending or failure to collect tax properly. What do we do if the cost of supporting disabled people outpaces society's desire and ability to fund this?

Personally I feel that there are no easy answers but we mustn't shy away from discussions around means testing PIP and Attendance Allowances. We do need to get better at assessing who is most in need of support and prioritising accordingly. We may also need to manage expectations of what a life with disability means, in terms of how much we can afford to cushion each person from the impact of their disability. All of these things aren't pleasant and there will undoubtedly be victims of these changes but at least the changes can be managed as effectively as possible without sleepwalking into a situation where public support for the welfare state and disabled breaks down completely. That will undoubtedly be worse for everyone.

I didn't bring it up though. I simply countered your point about those who shoulder the burden, the implication being that disabled people don't. Aside from being inaccurate it stirs division and has echoes of ableism.

How?

I would love to say Labour wouldn't , but I think they will just word if differently ,but I think you will still qualify anyway . I think modern day work practices make working with anxiety and depression harder and that's not something they will improve either .

I think toddlers could do a better job than this ridiculously inept and utterly corrupt government so literally anything will be an improvement.

So all in all the cinema trip probably cost at least £100? I understand your point about quality of life but many people can't afford to go to the cinema so it is considered a relative luxury.

I know that sounds incredibly harsh but it sounds like the trip was excessive both in terms of how much it cost and also the strain it put on the PA. I have a disabled relative so understand the importance of them having enriched lives but there needs to be a balance somewhere. It is unaffordable and unsustainable to be funding this for him whilst expecting other people to work long hours on minimum wage with no consideration given to their quality of life or the fact that cinema trips are a distant fantasy when you can barely afford rent and food.

If that many disabled people are huge tax net contributors then the idea of means testing PIP would definitely be part of the answer. There would be no controversy whatsoever! We all know though that this isn't the case and of the 50% of disabled people that do work, most are not paid enough to be net tax contributors (especially when PIP etc isn't taken into account).

It's not ableist to acknowledge this, nor does it stir up division. It is plain recognition of the facts.

Sidestepping, again!

I think when many things in your life are subsidised it’s easy to forget how much things cost people who pay the full rate and assume they’re better off than you as their take home is slightly larger.

I don’t think anyone is expecting the people you mention in your post to have been responsible for themselves. To me, you’ve described some of the most vulnerable in society that should never be expected to be able to support themselves.

But HALF of all people who are out of work are citing depression/anxiety as the reason. Those are curable conditions… there are different severities of course (I have suffered from both myself, so I have sympathy for other sufferers)
Part of the symptom profile for both of those conditions is remarkably low self esteem/inability to judge yourself rationally. I have no doubt that many people who have depression or anxiety believe that they can’t work. But I don’t think that’s necessarily the case.
Again, I have been there - I have outright believed that I CANT do something only to prove myself wrong when I have forced myself in to it. People absolutely should have access to the support they need but they also need to take some personal responsibility.