To think people like me should get some sort of financial help

[Shimmershine819]

I'm at my absolute wits end. Crohns disease for 25 years. I work part time in the NHS (25 hours per week). I cant afford to drop any more hours. I've done the calculations, we'd get no help as a family. We can't survive on DHs wage alone.

No more accommodations can be made for me. I'm so ill. I've just finished a 4 hour shift, 4 short hours and they felt like an eternity. I was in so much pain, nausea, sweating. Trying to put on a brave face.

The multiple treatments I'm on don't seem to be making a jot of difference.

I think of all of those out these like me, with chronic illness, quietly struggling through each day with no help. Not ill enough for PIP, too ill to try and live any kind of normal life. My life is now work and bed. Thank god DC are older now.

Just needed somewhere to offload.

Even something like that which costs them next to nothing has to be turned into a battle. It's little wonder that suicide rates amongst disabled people are so much higher than in the general population.

You could get contributory ESA for 12m, or indefinitely if you're judged too ill to do any work. It's about £80 a week, more in the support group. Not a lot, but something. I'd second the advice to reapply for PIP.

Sorry @Shimmershine819 I didn't mean to take over your thread. It makes me so angry to read stories like yours, others on this thread and obviously in despair at the situation that I and my children have been put in as well. I don't understand hiw he public can be so callous that they don't demand change and that PIP/ DLA is significantly increased and granted without trying to humiliate disabled people, especially knowing that it could happen to anybody.

Whilst each council has their own criteria for issuing Blue badges, most will issue automatically for someone on enhanced rates of PIP mobility. Honestly, I help people apply for Blue badges all the time and even people who I think it may be borderline for getting one ( like a recent client of mine with a skin condition), got issues one. The odd one gets turned down, but the vast majority issues in a few weeks. Seems like you may just have been unlucky, I can't understand why on earth there would be any issues if you have enhanced PIP mobility.

Whilst each council has their own criteria for issuing Blue badges, most will issue automatically for someone on enhanced rates of PIP mobility. Honestly, I help people apply for Blue badges all the time and even people who I think it may be borderline for getting one ( like a recent client of mine with a skin condition), got issues one. The odd one gets turned down, but the vast majority issues in a few weeks. Seems like you may just have been unlucky, I can't understand why on earth there would be any issues if you have enhanced PIP mobility.

This was my understanding, too. It is baffling. My doctors have written them letters and provided evidence as well as the PIP report. Nobody understands what their issue is and they refuse to explain. They keep saying they need more evidence and when the medical professionals have asked what evidence, there is no answer...

Meanwhile my child had to go to A&E and because I could not park in the disabled spaces I could not take her. Only because a friend came to help did she get taken there in time. It's dangerous. But still, no badge.

Maybe I am just cursed or something but these people all make my life hell.

@Babyroobs

I can't get one automatically in Scotland because you need to have 12 points in 'planning a journey' or 8 in 'moving around'

The council have refused me a badge

I have a motability car!!!

I believe the automatic entitlement on planning a journey is 10 points in England but if you have 12 you don't automatically qualify. In Scotland 10 isn't enough and you need 12.

Its absolute madness

Forgot to add I just feel short and got 10 from planning and 4 for moving

I have a motability car!!!

Same!!

You can also do some part time 'permitted work' on the ESA. Think it is 16 hrs

@Babyroobs you seem knowledgeable about all of the benefits stuff and I am at a loss with it tbh so I'd really value your knowledge on this: the one thing that might save me when my health collapses completely is that my employer has an insurance policy such that if an employee becomes incapacitated ir injured and can no longer work they will receive 50% of salary until retirement as an insurance payment, effectively a group critical illness insurance policy. If this happened to me, would this money be considered as relevant for the purposes of claiming UC, or disregarded? On the calculators there doesn't seem to be an appropriate box to enter such an amount to correctly classify the income - only income from employment, pensions, etc. And it doesn't fall into any of those categories.

Unfortunately alone the 50% would not be enough for us to live. But if that wasn't counted for UC purposes, perhaps when my health is finally driven over the edge between that and UC we could survive. Do you know what the rules on this are, or how I can find out? Knowing there was a safety net would mean I could sleep at night.

It's actually more like income protection insurance, as it would pay a monthly amount not a lump sum.

The obvious thing would be for UC to disregard this because the purpose of the insurance is to try to top up the welfare income of a person who has become too ill to carry on working, that everyone in that situation should get, to a level that is less than they were earning (obviously!) but sufficient for them to cope without having to have huge life disruption on top of becoming so ill they can't work at all.

But knowing even a tiny bit about the ridiculous unfairness of our system that deliberately penalises anybody who does work, my guess is that the callous bastards would deduct this insurance money from any UC allowance? So yet again penalise you for working and having paid tax all of those years and refuse you any of the state help that yoj've paid tax for because you've got some insurance to try to supplement it, and instead just withdraw the state support you've paid for and leave you with only the insurance. 🙄

I hope I'm wrong. I can't seem to find any info on it online. There is stuff about lump sums from critical illness insurance being disregarded but nothing I can see about insurance paid monthly. Again would make zero sense for those to be treated differently but I'm long past expecting any of this to make any sense.

If you do know/ can find out/ can tell me where to find out, as I don't trust the accuracy of a lot of the websites I've seen that say contradictory things, I'd be grateful. I would feel a lot less despair knowing that if/ when the worst happens as I'm gradually driven into the ground, that my children won't lose their home or end up in care, and the only way I can see that as possible is if we would be able to claim the UC I would get if not working without them deducting it all because of the insurance. Between the two we might be able to survive.

But it's probably a pipe dream and as usual the safety net will not exist for us. 😔

YANBU OP. It infuriates me that public money is just given out to those having more kids than they can afford, but vulnerable people who aren’t kids or parents just get left to sort themselves out.

Unfortunately I think it would be classed as unearned income so deducted in full but I'm not 100% sure on this. To be honest it's not something I come across a lot. I think the best place to ask would be on the martin money saver forum as there are a lot of real experts on that site. That is the site I go to if I am unsure on anything and one of the few forums I trust ! The expert will usually back up the advice with a link so you can check the rules for yourself. here is a link to the UC regulations. I think critical illness payments would come under h. The Universal Credit Regulations 2013 (legislation.gov.uk)

Could OP combine the critical illness money with cont based ESA it is not means tested? and possibly PIP? Might be good to get this all checked out by a benefits advisor maybe CAB?

As an example, I get cont based ESA which is about £250 every 2 weeks, also PIP which is £467 a month, neither of them are means tested so DH's income is unaffected, if that is lower than a certain amount we also get a top up of tax credits along with a disability element.

Maybe something like this in combination with the Critical illness benefit could work for you OP.

Oh, also you could do things like use the assessment for ESA support group or the critical illness report as evidence for PIP....it can all work together like that but it might mean emphasising your difficulties and struggles more

What happens with our tax credits is the ESA is counted as income in the calculation but PIP is not, guess it would be the same for UC

PIP is extremely hard to get for certain conditions. Sadly one of these is Crohns. It just doesn't fit well into the points system and it's very hard to get PIP for it unless you also have another condition e.g. depression.

@Jupitune
Is the father of your children paying maintenance -if not, that is where you need to start pointing the finger, presumably if you were still together finances would not be a problem?
You obviously are a relatively high earner, as you don't qualify for CB and say you pay a lot of tax, so while you obviously feel the state should provide more financial support, I think your household income is probably a lot higher than most on here and some outgoings, such as your mortgage, reflect that.

Why not?
It’s true - there’s far too many in this country happy to sit on their arse while the rest of us work, some of us with difficult chronic conditions.

People that are ill should get more help, and those that have loads of kids with no thought as to how they’re going to be paid for should be working.
It’s sickening that people can just sit on their backside all day if they choose to, while those who actually want to work have to struggle through more hours than they with chronic conditions just to make ends meet.

Typing on a thread doesn’t mean you are fit for work?! Some people have conditions that mean talking on the phone or video calls is even more overwhelming.

OP is a taxpayer too, she is working and her husband is working.

Children's father is not an option for financial support in this case. The main reason our outgoings are high as I said already is that due to their disabilities the children require 1:1 childcare. Only way to reduce that is for me not to work. It's not unreasonable to expect the additional costs arising from disabilities to be covered by disability benefits, that is their entire purpose. My mortgage is pretty normal for the area I live in and this is where I need to live. Not helpful comments, but thanks.

But the reality is that no child with disabilities receives £1000 in benefits a month to cover them being cared for, including severely disabled children requiring 24 hour medical care, those with life limiting illnesses etc.

Thanks @Babyroobs and @Orangesandlemons77 I will look into this further. It's all so worrying, really appreciate the advice.

Exactly. This is my point. Disability benefits are far too low and do not meet the additional costs of disability. Yet people with no disabilities and children with no disabilities can claim up to 85% of childcare costs back if they receive UC, for example. The focus of the system is completely wrong with far less generous help available for disabled people who can do nothing to change their situation.