Top up fees

[ChrisH]

Hi all, haven't posted for a while but just thought I'd pick a few brains before a funding review for my mum's care tomorrow. I'll try to be brief (not easy for those who've read my posts before ).

Mum has been in a residential home for just over 2 years now and I have been paying top-up fees all that time. It started at £19 a week which was manageable. The third increase has just happened resulting in the top-up rising to £79 a week. I was struggling before but this is impossible. I'm an only child and have no one to help with the fees. My circumstances have changed and I can't really afford to pay any top-up.

As I understand it there are several options:

- mum is moved to a cheaper room - this will only be £20 a week cheaper so no good to me, plus I think if she can't see the toilet door from her bed or chair she won't know what to do and will quickly become incontinent, and that's the case with all the cheaper rooms.
- the home has said they will ask for a reassessment of mum's needs which have changed since she first went in, but this may not be enough to move her to another band of funding, and would still result in a shortfall (which will continue to go up by £20 each year).
- the funding council will want her to move to a cheaper home - I'm not sure there is one in this area so what happens then if I refuse to pay the top-up? The funding council is not the same one as the area she is now living in.

So basically, what happens if I say tommorrow that I can no longer pay the fees? Can they force mum to be moved if a cheaper home can be found? If that's the case and I don't like their choice of home, then what? Do I just have to cough up, which will entail selling my business and going back to working mobile and doing my back in with only a few years left before retirement, or will the council have to pay the difference? Any thought would be welcome.

Chris

 

[lin1]

Hi
Im sorry I cant help with this.I do hope someone who can will be along soon

 

[Christin]

Hello Chris

I am sorry to read your post and agree it is a huge increase. I do have my own opinions on this , but I don't think that's what you need right now.

I would suggest you give the helpline a call, there will be trained helpline advisors to offer you some support and info.

Alzheimer's Society National Dementia Helpline 0845 300 0336

Please let us know how you get on, and I really hope that everyone comes to a sensible decision for your mum.

My very best wishes to you all.

 

[piedwarbler]

If you don't pay them and the LA want to move her, they have to prove the new place will meet her needs plus I think you could argue it will be seriously detrimental to her welfare. I think you could stop paying and see what happens x. Good luck.
(I think they hope people will pay - the system is rotten) xx

 

[Saffie]

I daresay every LA will act a little differently but I'll be interested in the way this pans out as I've heard from SW today that there are 2 possible places for my husband in Nursing homes. They both involve around a £200 a week topup fee once he is no longer self-funding. He will only be self funding for a few weeks a week anyway - at over £800! I have not heard of any cheaper homes in this area. SW said that when it becomes difficult for me to pay the topups he could move to a shared room which is the LA rate. I will not be happy with this so think I will see if his name could be kept on the LA home list but don't know if this will be possible.
Good luck - I hopw you receve positive feedback.

 

[jenniferpa]

Chris - I was under the impression that after a period of time your mother would be transfered to the "new" funding council. Did that not happen?

If that happened, would the "new" council payment be adequate for her to stay where she is?

P.S. I see the Ordinary Residence rules have been clarified since your mother moved, and it does appear that the original LA remains the funding LA.

 

[ChrisH]

Thanks for all your responses.

Jennifer, as far as I know there won't be a change of funding LA. Even if there was there wouldn't be too much difference anyway. The home seems to increase the room rent across the board by £20 a week every year. Mum's general health is good and I'm sure she has a few years left in her yet. Apart from the dementia her only other problem is a prolapse bladder, and when that gives her discomfort she is always popping back and forth to the loo. That's why I'm concerned about her having line of sight to a door with a notice saying 'Toilet' on it. She knows her room number so if she does move she'll be going back to the wrong room all the time which won't be nice for the new resident. The cheaper homes in the area don't have ensuite rooms.

I'm happy with the home, which is why I wanted her there in the first place. I've known it through work for several years. I don't want to have to move her and I think the home will help argue it's not in her best interests to move.

Mum has a property but it's a mobile home so they can't put a legal charge on it so they would pay the top-up and reclaim it when it sold. I can't put it on the market as I didn't get POA (long story which I think you know about), and haven't applied for Deputyship as I can't afford the legal fees and whatever this annual charge is I've read about on here. Even if it was on the market they aren't selling - her friend's one is still for sale after 2.5 years.

As a further complication her savings are now borderline for going below the lower limit. In fact if I took out a few things I've actually paid for (not to mention her chiropody treatment for 2 years) it would put her under the limit.

Hopefully we can come to some arrangement tomorrow that will be right for us all. I just hate what feels like emotional blackmail because I want her in a nice home but I can't afford to keep her there, but feel guilty that I've got to back out. But I have to think of my own family and they are being deprived of help because of her.

Chris

 

[jenniferpa]

Chris, I really do think as she has now been there 2 years you will be able to really push the fact that any move that was down purely to funding would be seriously detrimental to her heath and well-being.

I think as you go forward with this you have to say you can no longer pay a top-up, period. As you point out, a move to another room in the care home will not only not save much money, it would be difficult for your mother to cope with. I think you have to be clear with everyone that while you cannot afford the top-up, you will fight tooth an nail to keep her in her home of two years. You probably need to approach this as you would a lawsuit: get written documentation from everyone connected with your mother (care home, nurses, doctors etc) pointing out the potentially damaging effects of moving your mother from her home. You should probably get legal advice re the top-up: I don't know what you signed or how enforceable it is. The last thing you need is the LA suing you.

 

[JPG1]

Hi Chris,

And in no particular order:

Yes, it is emotional blackmail. Top-up fees are always emotional blackmail, unless of course someone has chosen a more expensive care home than meets the funding council's priorities. Top-up fees are never enforceable - no matter what may have been agreed X years ago. Because no person on earth has an ongoing legal responsibility to pay for the care of a relative. That legal responsibility rests with the NHS and/or the SS. Not a spouse, partner, child, etc.

Why not tell them at your meeting tomorrow that you just cannot afford such top-up fees, and then ask for their solutions to the problem you are having to face. Don't make any decisions at the meeting - you have got to think about any options offered.

If there is no other 'funding-council base-rate affordable' care home in the area, the funding-council has a legal obligation to fund the care in the most appropriate care home - which is the one your Mum's been living in for the last two years. And the funding-council has a legal duty to pay for that - without top-ups.

But, of course, they will still put the pressure on you, without telling you of their own legal obligations to fund the required care in an appropriate care home that can meet the needs of your relative. No council can set an arbitrary limit to their ability to fund any person in need of care. That limit has to vary, according to the needs of the person, and according to the availability of any care home to meet those needs in the area.

Your Mum cannot be turfed out to a 'cheaper' home, just because it is cheaper.

I can only suggest that you ask for 'whatever happens tomorrow' to be put in writing to you. And until you receive it in writing, you cannot make any decisions. That will sharpen their thinking.

As for 'shared rooms' - there is something called Human Rights. That means that nobody can be forced to share a hospital ward with patients of another gender; nor can anyone in a care home be forced to share a room with anyone, even of the same gender.

So I think you may have to stand strong and firm against any attempt to (a) try to force you to pay top-up fees; (b) try to move your relative to a cheaper care home; (c) try to force your relative to share a room.

Good wishes for tomorrow.

 

[ChrisH]

Jennifer, fortunately the person coming down to the meeting tomorrow I believe is someone who can negotiate re the fees. I signed a contract at the beginning which said that from time to time the home might increase the fees and that the home should notify them of this and they would send me a new contract. This has never happened it seems. So that's something else to sort out.

I'll let you know the result tomorrow as our visitors are about to return and I won't be able to get at my computer as they are bedding down in my study/workroom. Thanks for all your suggestions.
Chris