Well it looks like the help from the care agency is going to be cancelled

Well it looks like the help from the care agency is going to be cancelled. They’ve assessed me to contribute £70.80 from pw from 26th March and £74.66 from 27th April.

But go on to say that as the assessed contribution is higher than the cost of care provision I will need to pay the full cost of care provided and not the higher contribution.

The funny thing is this would not have been a problem financially if the government had returned the £65 pw severe disability premium as they had promised to do.

The plan according to my stepdaughter is to pay the person who currently comes in direct and not through the care agency. It’s a case of getting the help while not being too much out of pocket.

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That’s terrible. How much of an affect will the loss of the care agency have on your life?

Sorry to hear that. Will you be able to get the same level of care?

Well if all goes well not much. The problem will arise if the person we’re going to use direct needs time off due to illness. One thing about a care agency is that in such a situation there would be someone to cover.

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I’m glad you’re not affected too much.

The care agency is likely to go down the pan due to the behaviour of the owner anyway. 4 people including my stepdaughter have handed in their notice and more may follow.

I’m really sorry you might not get the care you need. That’s terrible.

Did you had another name here on this forum? @szman please answer @szman
And why you attack people?

One more question: Where do you know firemonkey has been on benefits all his life? Do you know him? You are here only for 4 days… I’m just wondering. You had another account here, right? @szman


There is shenanigans going on here for sure

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Folks, if the Moderators had to respond to every drama created on other blogs, platforms, forums that mentions this forum or users on this forum, we wouldn’t have time to moderate this forum. We have enough drama as it is on this forum. No need to add to it by bringing up external drama.

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Let’s try to return the thread to the original poster’s topic.

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@szman do you have a diagnosis. Have you had schizophrenia long? I only ask as I too have found fault with fellow schizophrenia sufferers for not working and all their other downfalls only to follow in their footsteps. Schizophrenia is a very difficult illness to deal with, I bet life will teach you a lesson like it did me if you really have schizophrenia.

Ok but this dude started to attack OP

Very sorry to hear this, man. I realize how heavily you depend on it. This is a bad case of the government chiseling the wrong people.



To be fair the care agency aren’t cancelling it , but it’s not viable at full cost hence the need to make other arrangements.

It will make it affordable to do so, but at the expense of there being no cover if the helper concerned goes off sick. Yes my stepdaughter would step in , but the idea of getting help in the first place was for our relationship not to be primarily based on her providing care needs. Yes she still helps me with some things but it’s not the driving force behind our relationship.


The same is happening here with people in supported housing. My housemate only gets 6 hours support per week and he has to contribute £130.00 a month out his benefits. I get 21 hours support but because I’ve been on a section 3 I don’t have to pay anything, the thing is a lot of people who have to start paying for their packages need more support them me. It’s stupid.

I really hope the government are forced to backpay everybody who’s missed out on their severe disability premium, I can actually see that happening in the future much like they are doing now with people who missed out of the high rate PIP mobility as the DWP was forced to backpay people who the DWP screwed out off it by changing the regulations.

It gets worse . My stepdaughter has checked the letter and it’s back fees from March last year they are after. Of course as you do I based my spending on the situation at the time. I’m not even sure I’ll have the savings to cover it. My stepdaughter will try to sort it tomorrow. All this for 3 hours help a week. Given that social care problems are often a part of being severely mentally ill it really should be covered by the NHS, as should such help for the physically disabled.

I think given serious underfunding of social care it’s only going to get worse . It’s a sad reflection along with welfare policy on how the disabled and elderly are regarded ie more burden and /or scrounger than people with genuine needs.

Perhaps your stepdaughter can find out if there’s a way to get the back fees dismissed. Paying back fees on a limited fixed income seems like an undue burden, especially if it is due to a change in policy or error in interpreting policy on the part of whatever government agency approved the care agency costs in the first pace.

Then perhaps you can work with your mental health team to document your disability level to see if you qualify for any additional benefits moving forward.

I think it’s an error on their part in the sense they should have made it clear from the start that a sum should be paid towards care. If they had done I would have cut my cloth accordingly.

As for the benefits I am getting: When I moved here I was automatically moved from ESA to universal credit. I would have been financially protected if I had stayed where I was and UC had been introduced to the area.However due to changing address being a change of circumstance I wasn’t. Being transferred to UC due to a change of circumstance meant you lost the severe disability premium of about £65 pw for a single person. It’s since being shown such policy is discriminatory/unlawful and the government has said it will restore the premium and any back pay due. They’re taking their time over doing so.

With the premium I would be covering care and would be as well off or better than what I would be now without any care costs.

In terms of other means of improving benefit levels I’ve put in a mandatory reconsideration re the the governments review of decisions on mobility benefit. They’d said I still didn’t qualify for it on the basis of the information they currently had. They information being false in that the assessor had said I just needed prompting when my brother had clearly stated at my assessment I needed someone with me on unfamiliar journeys.

My stepdaughter provided a strong supporting letter to go with the MR. This was sent in November but as with all things where the government might need to upwardly adjust your benefits, as opposed to cutting them, they’re dragging their heels coming to a decision.

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