Ok who wants to swap £2500 a month in benefits for my husbands MS and my epilepsy, narcolepsy and fibromyalgia.

[bluebirdblackbird]

Well according to a lot of people on here we are on a good thing.

the 20 seizures I have in a week, chronic pain and night terrors, losing my memory after a seizure, pissing myself, hallucinations. They are all great fun. Not to mention the amount of times I have been accused of being drunk after a seizure.

or there is my husband. Diagnosed with progressive MS. Cronic Pain, shaking, cronic pins and needles, weakness in limbs plus losing mobility. Had to give up his teaching job 4 months ago after gradually reducing hours.

Not to mention the judgement when we use a blue badge because we look ok in that moment. And apparently labour are going to find us both work. Yippee cant wait to meet the employer who is going to take us both on. I am sure pissing my chair on a reg basis won’t matter to them or the losing counciouness at least a couple of times a day.

i am just fed up of yet another they are on benefits and get money and it’s not fair stamp stamp stamp. The bastards have saved up for a holiday- it’s not fair. The bastards have a mobility car but they look fine, OMG- they have got new carpets or a new sofa.

since I am guessing they none of the moaners would actually swap places with us if they could then STFU.

oh and that pip that is easy to get- my husband gets lower rate for both and that is despite providing all the evidence and appealing so we are off to tribunal. He can’t even dress himself most days and he can’t hold a pan safely or manage his medication plus many other things. If he stays on the points he is on he will lose his pip completely under these new labour proposals.

but most people know someone who’s friends, aunts, nephews, stepdaughters, cousin twice removed who lied and got it. I was taking to a lady in a wheelchair who does not get any mobility component of pip at all.

But fibromyalgia has a vast array of symptoms and severity. Like you, I know people who have it. Some are constantly in a huge amount of pain and couldn't possibly work consistently, but others can manage to work, despite being in pain generally, with flare-ups from time to time. I also think it depends on people's tolerance of pain. I have a high pain threshold, whereas lots of people don't. It's all a bit of a minefield!

It's called The Spoon Theory and is an excellent way to describe the day-to-day life of a disabled person, compared to someone without disabilities. How disabled people use lots more 'spoons' for each activity.

I'm not in the UK, where I live even Disability benefit is means tested. And I don't qualify for it. Yes, it's utterly shite, embarrassing, and feels like I'm being punished for having some serious health problems.

That's not good. We are fortunate in that over here, at the moment, our Personal Independence Payment (PIP) isn't means-tested. I think there would be a huge public outcry if they tried to means-test it, so instead the government is trying to make it harder to claim.

Why isn’t it means tested though? Shouldn’t all resources go to the people who need it most?

Because there would have to be a cut-off point. That could result in someone who was getting, for example, 1p over the threshold not getting any PIP at all, whereas someone getting 1p under the threshold, would be entitled to it. That's a very slippery slope.

We had something similar a few months ago where the government said that anyone aged 75 or over could only be exempt from paying a television licence if they were in receipt of Guaranteed Pension Credit. Previously, all pensioners aged 75 or older were exempt. This now means that a pensioner who is only just over the the threshold has to pay for their tv licence. The general public are incensed!

Is all their money definitely coming from the state though? There was a study recently that found that most disabled people are subsidised by their families because they don't get enough to live off for the most part. I'm in several support groups for disabled women too and there is a really high level of sex work (often online) to boost income. I doubt most tell their friends. People's situations are different though and I'm not saying that there aren't a few people who get enough from the government to go on foreign holidays and go out for lunches. The people I know who are on benefits live in modern day slums/with their parents if they don't have a partner to support them.

It does go to the people who need it most. It’s ability-tested. Otherwise you would create a horrible tax pinch point for disabled workers and force even more out of the work force.

The furore about the Winter Fuel Payment only being paid to those on means tested benefits raised the same point. Older pensioners with small private pensions, and there are many in that position, are no better off for having tried to future proof their old age.

Disability benefits are not based on income. However, I know at least one older person who doesn’t claim AA (even though they would qualify), because they have a good pension and substantial savings.

But for working families, the huge cliff edges in the tax system are acceptable?

People on out of work/ top up benefits yes. Food vouchers / uniform vouchers/ are a great start

People with genuine disabilities no. I want to be in a situation where people who can work always do so that people that absolutely can't have more money going to them.

The issue with disability benefits is things like a husband claiming carers allowance for hos wife woth chronic fatigue. Or aside from disabilities the vast number of families where women have a hoard of children and don't work and live on HA/ council property.

No sane, pleasant person would want anything less than a comfortable life for someone with a neurological condition or a degenerative condition.

The only reason why I'm on UC is because I care for my disabled son. Food vouchers would feel incredibly demeaning, not to mention embarrassing.

The vast majority of people are capable of deciding what to spend the money on and I don't think it should be changed just because a minority may not always use it wisely.

But surely those on 100k a year shouldn’t get it?

How do you know if your gong to be having an awful day on the day the flights departure? A flare up?

People on solely benefits shouldn't be earning more than someone who is working 40+ hours Or have more disposal income.

I know DH's grandparents both received DLA before PIP. The disabilities were mainly from aging, fibro, arthritis, spine, etc.

They had a great life holidaying on cheaper deals every 2/3 month before DGM died.

My DD has ASD, she didn't qualify for benefits after 16, I understand why, as much as it would have helped her, there is too many people claiming it, I didn't bother appealing. I get it.

Most people with DD type of ASD were undiagnosed in the 80's. The money should be left for the most severe cases, people fighting, appealing, solicitors, courts, usually turns over a decision.

We have thresholds for all kinds of benefits and taxes. I don't know why you're pretending it's a new and radical thing? We have it for CB, UC, free childcare hours and pension credits amongst many many others. Yes, there are always be people one penny over or under the threshold so you try to avoid cliff edges but means tested taxation and benefits is the norm in this country.

I also think there is difference in how the public perceive benefits for the elderly versus the disabled. If you suggest cutting a universal benefit for the elderly (WFA or the bus pass) then there is a large uproar because everyone gets old and it is largely perceived to be something you get out of the system when you've paid into it your whole life. It is also impossible to defraud the system and pretend to be elderly when you're not. These public sentiments don't apply to disability benefits in the same way. I'm not saying this is morally or ethically correct but I do believe it is true. I have been on threads debating removing the free bus pass for richer, older people and the percentage of people supporting these benefits are way higher than the percentage of people that support the current system for disability benefits according to this thread.

I got high rate on mandatory reconsideration

I am aware it can be quite debilitating, and can vary from day to day, I know more than one sufferer. However, I have to bite my tongue when the daughter of a friend uses it to regularly stay in bed, leaving her children to be looked after by her DH, or her DM. Housework and cooking are too much for her. But she is miraculously ok when invited out for social events and hobbies that can involve quite a lot of energy and travelling that would tire non sufferers.

https://www.collinsdictionary.com/dictionary/english/entitled

The way "entitled" was explained has been bugging me so I checked the dictionary definition. While it's become synonymous with "attitude", it's also about simply having a right to something. Shorthand for "meeting defined criteria" as it were. Because I doubt many of the people meeting the criteria for state support due to sickness / disability are thrilled silly about their "special / allegedly superior" status.

Yes, but the point remains that nobody has a 'right" or entitlement to a holiday.

Actually, they do, if they meet the criteria, ie can physically get there ( with whatever support is needed" and can pay for it. And if the place in question is receptive to visitors. And if they have accrued time off at work. If certain criteria are met, a person can indeed be "entitled" to a holiday.

Yes a ‘right’ to claim benefits

but having a holiday is ‘special privilege’.

2 different meanings but with regards to a holiday it cannot possible be a ‘right’

and that goes for every single person whatever their circumstance.

Public holidays and industries acknowledge that people have a "right" to time off and leisure time from routine. Whether that involves travel or not is rather irrelevant.

It does go to people who need it most, it goes to disabled people, what with it being a disability benefit.