Has anyone else got someone with early onset dementia in a care home costing £30,000 a year for an estimated 40 years?! How do you avoid becoming destitute?
care home fees
- Thread starter Cherylthe peril
- Start date
Hi and welcome to Talking Point
The thing to remember about care home fees is that the only person liable for paying them (potentially) is the person with the disease - not their children, not their spouse. Once the person's resources have been reduced then the local authority starts to pay. This is always presupposing that the person isn't eligible for NHS continuing care.
The above is an extremely simplistic view of the current system. The whole Charging for Residential Accommodation Guide (CRAG) is over 100 pages long. http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_097578
The thing to remember about care home fees is that the only person liable for paying them (potentially) is the person with the disease - not their children, not their spouse. Once the person's resources have been reduced then the local authority starts to pay. This is always presupposing that the person isn't eligible for NHS continuing care.
The above is an extremely simplistic view of the current system. The whole Charging for Residential Accommodation Guide (CRAG) is over 100 pages long. http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_097578
A relative or spouse cannot be held responsible for care, of any sort, and that includes the financial aspect. However, between spouses, jointly owned assets (such as a joint bank account) would be taking into consideration.
The Local Authority can also ask for "top up fees" if (for example) the person or their family wants to pick a care home which has higher fees when a cheaper one is available to the authority that will provide the person's assessed care needs.
That can mean that unless top-ups are paid, placement can be made into a care home which the person or their family would not choose themselves.
In short, only the assets of the person going into care matter and once those run out the local authority has to pay. They cannot oblige the family or anyone else to do so.
The Local Authority can also ask for "top up fees" if (for example) the person or their family wants to pick a care home which has higher fees when a cheaper one is available to the authority that will provide the person's assessed care needs.
That can mean that unless top-ups are paid, placement can be made into a care home which the person or their family would not choose themselves.
In short, only the assets of the person going into care matter and once those run out the local authority has to pay. They cannot oblige the family or anyone else to do so.
Hi Cheryl and welcome to TP from me too 
And worth noting that only half those jointly owned assets are taken into account, so if you 60K between you only 30K is classed as assets.
The home is not taken into account while any surviving spouse lives there.
The following article is over a year old so the thresholds are out of date, but I'm posting it here because it's one of the best explanations I've seen around this legal maze.
http://www.telegraph.co.uk/finance/...o-beat-the-means-test-and-keep-your-home.html
If you intend to apply for NHS Continuing Care, there are a couple of really useful thread in the Resources section of this forum.
Vonny xx
And worth noting that only half those jointly owned assets are taken into account, so if you 60K between you only 30K is classed as assets.
The home is not taken into account while any surviving spouse lives there.
The following article is over a year old so the thresholds are out of date, but I'm posting it here because it's one of the best explanations I've seen around this legal maze.
http://www.telegraph.co.uk/finance/...o-beat-the-means-test-and-keep-your-home.html
If you intend to apply for NHS Continuing Care, there are a couple of really useful thread in the Resources section of this forum.
Vonny xx
Hi Cheryl, My mum is in a LA "local authority" CH "care home"she has only been in there 2wks.
I chose this home because I know it , its round the corner from where I live, I also know 1/2 the staff that work there,
I personally think LA homes are the best, this home has a 16 bed dementia unit, although mum has LBD, they said she is better suited to there elderly and frail unit just now, as the illness progresses she will then be moved into their EMI unit, I wanted the best care for mum,not the prettiest surroundings,
Mum is also self funding, finance dept have told me that when mums money goes down to 23,000, mum will we have to have a financial assessment, she told me at today's figures if mum was down to 23,000 now, mum would pay 100.00 from her pension and attendance allowance and LA would pay the rest,
Of Course this is there own home and it is a bit less money than your loved one is paying so I dont know how that would work, but I have read on TP that some private homes will come down to
LA rates, of course figures may vary depending on which end of the country you are, we are in the north west so I would think ours would be considerably cheaper than London for instance.
There was no suggestion that anyone else would be expected to pay.
Not to sure if I made myself very clear, hope so.
By4now
Love Lynn
I chose this home because I know it , its round the corner from where I live, I also know 1/2 the staff that work there,
I personally think LA homes are the best, this home has a 16 bed dementia unit, although mum has LBD, they said she is better suited to there elderly and frail unit just now, as the illness progresses she will then be moved into their EMI unit, I wanted the best care for mum,not the prettiest surroundings,
Mum is also self funding, finance dept have told me that when mums money goes down to 23,000, mum will we have to have a financial assessment, she told me at today's figures if mum was down to 23,000 now, mum would pay 100.00 from her pension and attendance allowance and LA would pay the rest,
Of Course this is there own home and it is a bit less money than your loved one is paying so I dont know how that would work, but I have read on TP that some private homes will come down to
LA rates, of course figures may vary depending on which end of the country you are, we are in the north west so I would think ours would be considerably cheaper than London for instance.
There was no suggestion that anyone else would be expected to pay.
Not to sure if I made myself very clear, hope so.
By4now
Love Lynn
Hi Cheryl,
It is hard to explain how the whole thing works, but here goes at my attempt.
If your relly has assets (including their portion of joint assets, apart from the house which is excluded if a partner is living there) of more than £23,000 (I believe that is the current sum), they will have to pay the full amount of care fees themselves. That is known as being "self-funded". You can choose any home you like, but as you rightly suggest, at £30,000 a year this swiftly wipes out any capital they have, even with their pensions and attendance allowance. Many Care Homes charge higher rates for self-funded residents, although I would suggest that with early-onset AD they may well agree to a lower rate for your relly as they are likely to be receiving it for a long period.
Once assets fall below £23,000, they are LA funded. This means that the LA pay the care home fees - but only up to a certain figure, which varies from LA to LA. In many areas this means that some homes will be charging more than the LA limit (although again, many will reduce the charges for LA-funded residents). So if your relly wishes to live in a more expensive home (especially if they have already been living there for some time) and they won't reduce the charge to the LA limit, the person has to find a friend, relative, charity etc to "top up" the fees, or move the person to a cheaper home.
That has all sorts of implications. You may not be happy to move your relative, but you also may be unable to commit yourself to years of paying the top-up fees. In my mum's area, when she entered the home in 2008 the LA limit was £375 per week, and the fees the home were charging mum were £460. Within a year, the LA limit had risen to £385 but the care home fees were then £520. You have to bear in mind that LA limits will probably only rise at the rate of inflation (currently about zero), but care home fees will rise to take account of increases in wages, national insurance, insurance generally, heating, lighting, laundry costs and food.
Also in my mum's area, there were few homes that only charged the LA rate, and all were choc-a-block full apart from one that I would not have put the dog in - and neither I, my husband nor my mum were wanting anywhere "posh", just a clean, comfortable, pleasant place to live and caring staff.
Just a correction - if the person is LA funded, it is not quite right that they pay only £100 a week and the LA pay the rest. They pay ALL of their income, whether from state pension, private pension, pension credit or savings (above £10,000 I think - they are assumed to earn £1 a week from savings for every £250 above £10,000, so if the person has £20,000 in savings the extra income is deemed to be £40 a week), less a small "personal allowance" which they are allowed to keep - which doesn't go far if they are paying for hair-dressing, toiletries, clothes, Christmas presents etc. It might be that if the person is only getting state pension plus maximum pension credit, this would work out at paying £100, but not in other cases.
Also note, if a person is LA funded they can no longer claim Attendance Allowance, though this doesn't make any difference to the person if they are LA funded.
Another possibility is to look at taking out a Care Fees Plan, whereby you pay a lump sum up front in return for a guaranteed monthly payment towards care fees. A number of insurance/investment companies provide these, but you MUST look at an advisor who is qualified to advise on long-term care plans, not a general financial adviser. However, for someone with early onset AD and no underlying physical problems, the cost of such a plan is likely to be tremendous, and also bear in mind that it might well cover, say, 75% of the care fees at today's prices, but in 10 or even 5 years' time the rise in care fees could have outstripped any rise in the amount paid out by the plan.
It can be a financial nightmare, but if you live in an area with plenty of places charging only LA rates, there is no problem once capital has fallen to £23,000. Some of us are not so lucky.
Hope this helps you to plan.
Margaret
It is hard to explain how the whole thing works, but here goes at my attempt.
If your relly has assets (including their portion of joint assets, apart from the house which is excluded if a partner is living there) of more than £23,000 (I believe that is the current sum), they will have to pay the full amount of care fees themselves. That is known as being "self-funded". You can choose any home you like, but as you rightly suggest, at £30,000 a year this swiftly wipes out any capital they have, even with their pensions and attendance allowance. Many Care Homes charge higher rates for self-funded residents, although I would suggest that with early-onset AD they may well agree to a lower rate for your relly as they are likely to be receiving it for a long period.
Once assets fall below £23,000, they are LA funded. This means that the LA pay the care home fees - but only up to a certain figure, which varies from LA to LA. In many areas this means that some homes will be charging more than the LA limit (although again, many will reduce the charges for LA-funded residents). So if your relly wishes to live in a more expensive home (especially if they have already been living there for some time) and they won't reduce the charge to the LA limit, the person has to find a friend, relative, charity etc to "top up" the fees, or move the person to a cheaper home.
That has all sorts of implications. You may not be happy to move your relative, but you also may be unable to commit yourself to years of paying the top-up fees. In my mum's area, when she entered the home in 2008 the LA limit was £375 per week, and the fees the home were charging mum were £460. Within a year, the LA limit had risen to £385 but the care home fees were then £520. You have to bear in mind that LA limits will probably only rise at the rate of inflation (currently about zero), but care home fees will rise to take account of increases in wages, national insurance, insurance generally, heating, lighting, laundry costs and food.
Also in my mum's area, there were few homes that only charged the LA rate, and all were choc-a-block full apart from one that I would not have put the dog in - and neither I, my husband nor my mum were wanting anywhere "posh", just a clean, comfortable, pleasant place to live and caring staff.
Just a correction - if the person is LA funded, it is not quite right that they pay only £100 a week and the LA pay the rest. They pay ALL of their income, whether from state pension, private pension, pension credit or savings (above £10,000 I think - they are assumed to earn £1 a week from savings for every £250 above £10,000, so if the person has £20,000 in savings the extra income is deemed to be £40 a week), less a small "personal allowance" which they are allowed to keep - which doesn't go far if they are paying for hair-dressing, toiletries, clothes, Christmas presents etc. It might be that if the person is only getting state pension plus maximum pension credit, this would work out at paying £100, but not in other cases.
Also note, if a person is LA funded they can no longer claim Attendance Allowance, though this doesn't make any difference to the person if they are LA funded.
Another possibility is to look at taking out a Care Fees Plan, whereby you pay a lump sum up front in return for a guaranteed monthly payment towards care fees. A number of insurance/investment companies provide these, but you MUST look at an advisor who is qualified to advise on long-term care plans, not a general financial adviser. However, for someone with early onset AD and no underlying physical problems, the cost of such a plan is likely to be tremendous, and also bear in mind that it might well cover, say, 75% of the care fees at today's prices, but in 10 or even 5 years' time the rise in care fees could have outstripped any rise in the amount paid out by the plan.
It can be a financial nightmare, but if you live in an area with plenty of places charging only LA rates, there is no problem once capital has fallen to £23,000. Some of us are not so lucky.
Hope this helps you to plan.
Margaret
Once the capital assets reachg £23,000 there should be a financial assessment - then the LA will pay a proportion of the care fees until that capital asset level reaches £12,500 (maybe £13,000 now?). It is when £12,500 level is reached that the LA should provide most of the funds, subject to costs within the Home.
It must be born in mind that after say 5 years a dementia patient is likely to have deteriorated to a point of needing Cont.Care - or by then a new system will be in place
I do suggest you talk to your SWorker about this - if he/she cannot help ask for a more senior member of their Department.Jan
It seems unjust ?
Our LA runs a scheme called "fairer charging"
They approve maximum fees for each home in our authority be they private or LA run and no-one has to pay above these fees. The LA will pay for those not privately funded BUT there are NO top-ups allowed to be charged at all.
Should this not be a national policy ??
Regards
Germain
Our LA runs a scheme called "fairer charging"
They approve maximum fees for each home in our authority be they private or LA run and no-one has to pay above these fees. The LA will pay for those not privately funded BUT there are NO top-ups allowed to be charged at all.
Should this not be a national policy ??
Regards
Germain
Germain - well yes. Still - I'm not sure how that works currently. I can see that the LA could make that a rule for any homes they were prepared to place residents into, and good for them, but I can't see how legally they could stop duly licensed homes from charging whatever they wanted if they didn't accept LA placements?
I am in the same situation - Five more years of fees and I have a very serious financial problem and here in France there is no escape.... The earnings of both are assessed and used until you both have a pittance!!!!
The info posted above is so useful but what are the implications of
It may be necessasary to move her back to the UK and rejoin the NHS - I did pay into it for 50 years so.......... but I am not sure I know how it all works and exactly what difference 'Cont.Care' - would make in getting help frm the SS,,, love thse initials! to pay care home fee?
thanks in advance
Michael
The info posted above is so useful but what are the implications of
Monique is in late stage but her 'vital' functions are all AOK the doc says....
It may be necessasary to move her back to the UK and rejoin the NHS - I did pay into it for 50 years so.......... but I am not sure I know how it all works and exactly what difference 'Cont.Care' - would make in getting help frm the SS,,, love thse initials! to pay care home fee?
thanks in advance
Michael
Hi Michael
Continung Care means that the fees are paid by NHS, not the LA. The patient has to be assessed as having severe health needs, as opposed to what are now classed as 'social' needs!
It's not easy to get, and can take some time, so if you're seriouslyconsidering applying, you should make some enquiries as soon as possible. I'm not sure if returning to this country would qualify Monique, but it's worth finding out.
Unfortunately, CC is almost impossible to obtain in Scotland, so our funds are rapidly diminishing too!
Continung Care means that the fees are paid by NHS, not the LA. The patient has to be assessed as having severe health needs, as opposed to what are now classed as 'social' needs!
It's not easy to get, and can take some time, so if you're seriouslyconsidering applying, you should make some enquiries as soon as possible. I'm not sure if returning to this country would qualify Monique, but it's worth finding out.
Unfortunately, CC is almost impossible to obtain in Scotland, so our funds are rapidly diminishing too!
Michael
This link to the National Framework for NHS Continuing Healthcare may give you something to get your teeth into:
http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_076288
"“Continuing care” means care provided over an extended period of time to a person
aged 18 or over to meet physical or mental health needs which have arisen as the result
of disability, accident or illness. “NHS Continuing Healthcare” means a package of
continuing care arranged and funded solely by the NHS. The actual services provided
as part of that package should be seen in the wider context of best practice and service
development for each client group."
In (very!) brief: the “primary health need” is the important bit. And another important bit is that LA and the SS should not be providing the kind of healthcare that anyone with ‘primary health need’ requires – legally, that healthcare can only be provided (and therefore paid for) by the NHS.
It is a whole minefield, but many more people are now achieving fully funded NHS Continuing Healthcare, for the simple reason that more people are becoming aware that it exists, and knowledge about the intricacies is also spreading.
Until fairly recently, it was kept almost a state secret, and it’s been very rare for any of the ‘service providers’ to offer it as a possible route to funding the care that anyone with a ‘primary health need’ is entitled to. But once achieved, it means that the NHS pays for the full extent of the costs of care, whether at home, in residential care, or in a nursing home. The costs are not paid by the individual self-funder, or the LA.
.
This link to the National Framework for NHS Continuing Healthcare may give you something to get your teeth into:
http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_076288
"“Continuing care” means care provided over an extended period of time to a person
aged 18 or over to meet physical or mental health needs which have arisen as the result
of disability, accident or illness. “NHS Continuing Healthcare” means a package of
continuing care arranged and funded solely by the NHS. The actual services provided
as part of that package should be seen in the wider context of best practice and service
development for each client group."
In (very!) brief: the “primary health need” is the important bit. And another important bit is that LA and the SS should not be providing the kind of healthcare that anyone with ‘primary health need’ requires – legally, that healthcare can only be provided (and therefore paid for) by the NHS.
It is a whole minefield, but many more people are now achieving fully funded NHS Continuing Healthcare, for the simple reason that more people are becoming aware that it exists, and knowledge about the intricacies is also spreading.
Until fairly recently, it was kept almost a state secret, and it’s been very rare for any of the ‘service providers’ to offer it as a possible route to funding the care that anyone with a ‘primary health need’ is entitled to. But once achieved, it means that the NHS pays for the full extent of the costs of care, whether at home, in residential care, or in a nursing home. The costs are not paid by the individual self-funder, or the LA.
.
What makes my blood boil with continuing care is that it can often be very hard to get degenerative conditions treated as illnesses. All to often they are lumped into the same category as "old age", which in itself does not qualify - even if you have exactly the same care needs.
If someone had all the symtpoms of advanced Alzheimers, but they had cancer of the brain, there would be no question over their receiving coninuing care funding. But with Alzheimers itself it;s an uphill battle.
Thus if you are unable to walk or feed yourself simply because you are very old and infirm, you are not classified as being "ill" and won;t qualify. All too often people with dementia are put into that group. It seems that there are still hangovers from the dark days when dementia was called senility, literally meaning of old age.
If someone had all the symtpoms of advanced Alzheimers, but they had cancer of the brain, there would be no question over their receiving coninuing care funding. But with Alzheimers itself it;s an uphill battle.
Thus if you are unable to walk or feed yourself simply because you are very old and infirm, you are not classified as being "ill" and won;t qualify. All too often people with dementia are put into that group. It seems that there are still hangovers from the dark days when dementia was called senility, literally meaning of old age.
Nebiroth, I could not agree with you more, which is why I am beginning to compile a list of all those 'sites of academic excellence' (as we have always known them) where they do indeed call a spade a spade, and dementia an illness.
Here's just one that I wouldn't argue with:
http://www.cambridgeuniversitypress.com/catalogue/catalogue.asp?isbn=9780521853958&ss=exc
If anyone's interested, I could post a lot more of the academic references that I am putting together, with an aim in mind.
.
Here's just one that I wouldn't argue with:
http://www.cambridgeuniversitypress.com/catalogue/catalogue.asp?isbn=9780521853958&ss=exc
If anyone's interested, I could post a lot more of the academic references that I am putting together, with an aim in mind.
.
Hi milly
Social Services are not legally entitled to ask for any financial information until a CC assessment has been completed and until you are 100% satisfied that the right decision has been reached and you have exhausted all rights of appeal, including up to the Ombudsman. My strong recommendation is not to complete a financial assessment at all!
It's a common tactic of SS to try this on - don't fall for it.
Mark
Hi Skye
Just to clarify, all needs are included in the CC decision. There is no distinction at all in law and according to the National Framework between health, social and personal needs. It is the total need level, caused by an illness, accident or disability that counts. This was a key outcome of both the Coughlan and Grogan judgements and is repeated in the National Framework itself.
The NHS would like us to think that a person's needs mus be 'serious' before they would qualify in order to put most people off trying.
Mark
Sorry if I missed this, but I wasn't aware that CC was even under consideration in Cheryl's case, I assumed just the normal battle.
Margaret
Margaret
I don't think you've missed anything Margaret - the OP has not come back to the thread so much of this is speculation.
Hi
Am I correct in the assumption that the eligibility of CC only comes into play when the individual,s savings have reached the current threshhold £23,000?
My wife was assessed as requiring CC about 18 months ago but but because she was self funding no mention was made of LC/NHS funding.
Merlin
Am I correct in the assumption that the eligibility of CC only comes into play when the individual,s savings have reached the current threshhold £23,000?
My wife was assessed as requiring CC about 18 months ago but but because she was self funding no mention was made of LC/NHS funding.
Merlin
