Not Understanding Funding

Dave63

Registered User
Apr 13, 2022
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He is being assessed for CHC but I don't think he'll get it as the Home has worked their magic on him and he is more stable and less aggressive.
This is what is known as a well managed need. Just because the home is managing his needs doesn't mean it's no longer a need. During a CHC assessment a persons managed needs can only be assessed with a view to what impact would there be if the management of that need were to be reduced or removed completely.
 

AnneF

Registered User
Jul 13, 2023
152
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I’d be tempted to tell the LA that I can’t pay the top-ups any more, and see what happens. It’s a lot more difficult for them to move someone to a cheaper home than they would have you believe, and if he’s been there a while there’s an argument that moving him is not in his best interests. Also, you might want to look in to CHC funding, especially given the Parkinson’s diagnosis.
This.

And also:

Some of the homes I've spoken to (including the fancy ones) have said that if you are unable (unable or unwilling) to continue to make the topups then they will then accept the local authority rate in full. This normally kicks in when your minimum commitment period has elapsed (usually two or three years, depending on the home).
 

nitram

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Apr 6, 2011
30,904
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Bury
@maisiecat

This is what is known as a well managed need. Just because the home is managing his needs doesn't mean it's no longer a need. During a CHC assessment a persons managed needs can only be assessed with a view to what impact would there be if the management of that need were to be reduced or removed completely.
Some info
 

Veritas

Registered User
Jun 15, 2020
340
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@maisiecat
Dave63 and Nitram have highlighted the point that a well-managed need can still qualify for CHC.

I think your local authority has behaved particularly badly towards you.
 

maisiecat

Registered User
Oct 12, 2023
449
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@maisiecat
Dave63 and Nitram have highlighted the point that a well-managed need can still qualify for CHC.

I think your local authority has behaved particularly badly towards you.
Thank you to all of you for all your information and yes I fully agree that the LA have behaved very badly toward us but so did the NHS, the Neurology service and the Mental health team. Just for yoy all to enjoy this irony Pete has to go to see a new Neurologist on Friday ,they are sending transport and the home have requested I go as his escort as they know this will be traumatic. If only they had wanted to help us 9 months ago we wouldn't be in the situation we are. I don't feel able to fight any of the people any more. I have learnt to fear the powers that be and the control they can use.
 

Veritas

Registered User
Jun 15, 2020
340
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Thank you to all of you for all your information and yes I fully agree that the LA have behaved very badly toward us but so did the NHS, the Neurology service and the Mental health team. Just for yoy all to enjoy this irony Pete has to go to see a new Neurologist on Friday ,they are sending transport and the home have requested I go as his escort as they know this will be traumatic. If only they had wanted to help us 9 months ago we wouldn't be in the situation we are. I don't feel able to fight any of the people any more. I have learnt to fear the powers that be and the control they can use.
Please don't let yourself be bullied. Is there anyone who can support you personally through this? It's clearly been a very bruising time for you (and your husband, come to that) and I long to go into battle on your behalf!
 

AnneF

Registered User
Jul 13, 2023
152
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the LA have behaved very badly toward us but so did the NHS
I am so sorry, but not surprised. The system is broken, and I would go so far as to say that it is knowingly cruel at times. I've run the gauntlet of obfuscation and at times outright lies from the local authority. Everything is weighted against you.

I've been there more times than I can count. The hospital discharge team and social worker sent my mother home from hospital in February knowing full well the situation was completely untenable for us. They knew very well that a care package at home wouldn't even come close to meeting my mother's needs, and they knew that I would have to give up work to take care of mum every day despite living in a different town.

No matter how often I begged for help, no matter how often I use the terms "carer breakdown" and "safeguarding issue" there was silence. They knew my mother would either die or end up in hospital again - and the latter is what has happened.

The so-called needs assessment turned out to be a very brief phone call to the ward made by a community social worker.

Remember that social workers will never be on your side. Their job is to minimise expenditure, no matter the cost to the people they are supposed to be safeguarding. I deeply dislike every one of them. The power they wield is extraordinary, their decisions will veto even that of doctors and they take no consideration of the accounts from family - the very people who are looking after that person every day and who know them best. I find it incredible that social workers can make the determinations they are permitted to make when they have no medical training and when they have met their client for only a few minutes. This year every bit of information the social worker has drawn upon has been from the care agency tasked with looking after my mother - who are very young, completely inexperienced, disinterested, with no relevant training or background.

I'm sorry, I could go on ad infinitum. I just get so angry when I read stories like yours and the many others I see on these pages - the social care system in this country is deplorable, shamefully so.

As I think I mentioned earlier to another respondent, you need to get some help and you need to absolutely stand firm. Tell the care home you can no longer afford the top-ups, and see what happens. If they are seriously minded to tell you to remove your husband to a more affordable facility then argue that it would not be in his best interests - particularly since they were the only facility from the outset who could meet his complex needs. It sounds like you have been paying the care home for quite a long time, which will stand in your favour.
 

Banjomansmate

Registered User
Jan 13, 2019
5,801
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Dorset
@AnneF you are so right about the power of SS. When I said to The Banjoman’s (very good) social worker that his GP had said that he needed to be in residential care she replied “We make the decisions NOT the Doctor!”.
 

Neveradullday!

Registered User
Oct 12, 2022
3,689
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England
Let's not forget, a lot of these 'professionals', they enjoy the power.
They couldn't care less for those they're supposed to help (I didn't say all of them).
 

sdmhred

Registered User
Jan 26, 2022
2,719
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Surrey
From the ‘inside’ there are many social workers who do care, although there are of course some who don’t ….they should never be social workers.

Managers seem to have less of the caring ……and there is so much pressure from them that the caring social workers leave or burn out…or indeed put on a ‘hard exterior’ as if their humanity was to see the reality of what they were facing and the lack of resources to meet it - they would never sleep at night.

I have ‘cared’ in social services for 20 years but it is now so broke that my values of compassion and kindness can not be realised - I therefore am a good one who will be saying goodbye as soon as I can.

I have to say the stories and heartbreak on this forum have indeed contributed to my decision and they will stay with me. If there was some way we could make change I would.
 

Neveradullday!

Registered User
Oct 12, 2022
3,689
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England
From the ‘inside’ there are many social workers who do care, although there are of course some who don’t ….they should never be social workers.

Managers seem to have less of the caring ……and there is so much pressure from them that the caring social workers leave or burn out…or indeed put on a ‘hard exterior’ as if their humanity was to see the reality of what they were facing and the lack of resources to meet it - they would never sleep at night.

I have ‘cared’ in social services for 20 years but it is now so broke that my values of compassion and kindness can not be realised - I therefore am a good one who will be saying goodbye as soon as I can.

I have to say the stories and heartbreak on this forum have indeed contributed to my decision and they will stay with me. If there was some way we could make change I would.
Sorry, @sdmhred - one of my naive sweeping statements (on a below average day, for me). You are definitely 'a good one'.
 

AnneF

Registered User
Jul 13, 2023
152
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I have ‘cared’ in social services for 20 years but it is now so broke that my values of compassion and kindness can not be realised - I therefore am a good one who will be saying goodbye as soon as I can.

I have to say the stories and heartbreak on this forum have indeed contributed to my decision and they will stay with me. If there was some way we could make change I would.
My heart goes out to social workers who care as you do. It's an awful position for you to be in and I'm so sorry you are experiencing that in your workplace (but sadly I am not surprised).

Thank you for your 20 years of valued service to the people you have done your very best for, and within an increasingly broken and at times brutal system.
 

AnneF

Registered User
Jul 13, 2023
152
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I have just had an email from the social worker assigned to my mother’s hospital discharge. The social worker has made the following recommendation “I have recommended your mother is moved to a permanent dementia residential setting”. I've been told this is in the works and they are looking to move mum out of hospital as soon as possible.

I am a little unclear as to what this means and I will need to tell the social worker more about my mother. It was written into the hospital notes that I needed to be present at all assessment meetings, but it seems my mother has been assessed over the phone with the ward by the social worker.

Although my mother has dementia (as do so many people in advancing years, it is nothing shameful) she is in no way a risk to others. She isn’t aggressive, she does not wander and she does not exhibit sun-downing or many of the typical dementia expressions. The reason my mother needs residential care is most to do with safety. She forgets to drink enough fluids, she would attempt to use a cooker and forget to turn it off, she would give people confusing instructions, she would try to go to the shop and struggle with her mobility, she would doze off with a lit cigarette in her hand, and she is a significant fall risk due to increasing frailty.

I have looked at so many care homes in the last few weeks. With no exceptions I can think of the standard residential settings are mostly inhabited by residents with a degree of dementia as a matter of course, across a broad spectrum and often notably more advanced than my mother (who is sociable and hugely activity-based). I feel that would be the best setting for my mum.

I have also been in dedicated dementia homes, and dementia units - all of which have left me deeply concerned at the very thought of my mother being placed in an environment like that when she is nowhere near that level. I think she would become extremely anxious and unwell quite quickly. She and I have discussed a residential placement at length and she is terrified of being institutionalised or enclosed, or being in a place where she can’t live as normally as possible. I’ve also noticed that the environment in most dementia wings is austere and less welcoming and homely than in an ordinary residential setting. I’m desperate to avoid this for my mother until such point if or when it becomes necessary - and therefore I am hoping that is not the kind of placement the discharge team is looking for.

At the same time I am aware that my mother’s personal allowance may be a little higher if she requires dementia care, so I would not want to lose that side of things. I feel my mum would be better placed in a standard residential setting where they accept a variety of head problems and can cover a range of needs without resorting to a locked unit.

I have also been told that the local authority will not offer any choices, I was told that one option would be offered and if this was rejected then a strong basis for the rejection would need to be put forward.

We are still awaiting the financial assessment and it may even be that I find my mother is just over the upper limit in which case I presume I will be permitted to find a suitable placement myself (assuming the care home is happy to accept) which could make life easier? This brings me back full circle to my opening post.
 
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sdmhred

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Jan 26, 2022
2,719
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Surrey
Thanks for your kind words @AnneF - I hope my experience just sheds a little explanation on why things are so difficult in SS.

And of course your update shows where the SW will have been told to do the assessment by phone to save time - but this has not helped you Or been the best for your mum. I don’t think it’s clear or not whether she means a dementia specialist home or a residential which accepts dementia - as not all residential does.

Can you drop them an email just asking more what she means?

In your look round have you seen any you like and would think ‘fit ‘ your mum. If you have do suggest them as you never know they may be on the LA approved list. if you are self funding you can choose - but as we know that drains the money.

I can’t imagine how hard it is having no say over it all - I’m looking again now for my mum as her first placement can’t meet her needs. I can’t imagine how awful it would be having no control over that.

take care xx
 

AnneF

Registered User
Jul 13, 2023
152
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Thanks for your kind words @AnneF - I hope my experience just sheds a little explanation on why things are so difficult in SS.

And of course your update shows where the SW will have been told to do the assessment by phone to save time - but this has not helped you Or been the best for your mum. I don’t think it’s clear or not whether she means a dementia specialist home or a residential which accepts dementia - as not all residential does.

Can you drop them an email just asking more what she means?

In your look round have you seen any you like and would think ‘fit ‘ your mum. If you have do suggest them as you never know they may be on the LA approved list. if you are self funding you can choose - but as we know that drains the money.

I can’t imagine how hard it is having no say over it all - I’m looking again now for my mum as her first placement can’t meet her needs. I can’t imagine how awful it would be having no control over that.

take care xx
@sdmhred - thank you for sharing your insights and experience on all of this, it's immensely helpful. The process this year of dealing with social workers and the local authority has been an eye-opener and a thoroughly depressing one. I am not surprised you feel as you do. And I'm sorry you are having to find another placement for your mum - my thoughts are with you. The process is more stressful than I would ever have believed possible - to have to go through it more than once must be awful.

Yes, I will clarify with the social worker what she meant by dementia residential.

Whilst looking around I have seen quite a mixture of environments, some I have wanted to run from and others I felt were good places. One of the key problems for my mother is her extreme noise sensitivity which was a consequence of a brain injury (RTA some years ago). She is physically unable to cope with noise such as loud televisions, radios, noisy cafes etc. Noise levels were profound in all bar two or three of the homes I have seen so far. A placement where there is a quiet lounge or reading room would have to be a prerequisite, otherwise my mother would be suffering from constant migraine, disorientation, distress and nausea. Because I wasn't involved in the assessment, the social worker won't have that on her referral report and my concern is that she will regard it as a preference rather than a need.

So far I have seen four homes which would meet my mums requirements (quiet areas and a high social activity agenda) and are within a half hour drive. Three of those homes have separate nursing and dementia floors and encourage those communities to freely mingle and socialise. The other home is residential only but quite happy to accept dementia clients providing the person is non-violent.

Unfortunately all of those homes are fairly expensive given this is the south-east (they range from £1400 to £2000 per week). I doubt they would consider accepting local authority funding on its own (although I have been advised to ask if they would for a period of time until my asset is sold and I can hopefully then top up).

Having read around this forum I also want to acknowledge that there are an awful lot of people out there in a worse situation, which feels unimaginable. I don't think anything prepares us for the stress of it all.

Anne xx
 

sdmhred

Registered User
Jan 26, 2022
2,719
0
Surrey
Hi @AnneF

The home I visited yesterday are pricey 😳😳 It is a dementia specialist but they have worked hard not to make it austere. They had numerous quiet areas. The manager acknowledged that private clients are funding LA ones - so it’s worth a punt that the ones you have chosen might be acceptable to LA If they have a similar arrangement- grossly unfair as she acknowledged. It may be that you can be accepted as a private client and then she is transferred to LA when funds require. I would always ask - you never know.

This is where dementia is so the poor brother of even adult mental health where I work. We rarely have a self funding client as most become unwell before they have had time to get a career or buy a home. But the LA are still involved in finding placements on the occasion it is - we wouldn’t say to a family caring for someone with schizophrenia go find your own placement Or care package.

I took a little bit of ironic delight in the fact I had to take time off work In SS to find my own mum placements because another dept of SS wouldn’t help!

Take care - and let us know how it goes.