Why not live-in care funding?

[Dearest Daughter]

Hello,

I am new to Talking Point , so apologies if I have posted this in the wrong place...... I know similar issues have been discussed on Talking Point, but I am really flummoxed: is this just the whim of my father's social services department? or my father's social worker?

My husband and I have been caring for my 90 year-old father who has pretty advanced vascular dementia and is increasingly frail, with a variety of other significant health conditions. He lives alone near us and desperately wants to stay in his own home (which he does not own). He is not self-funding and has had council-funded carers four times per day since 2019 (in addition to daily care, housework etc. done by us).

He is alone at night and we have been ‘on call’ every night for the past five years. This has mostly been OK as night time incidents have been infrequent. Recently he is increasingly likely to try to get out of bed and we have found him on the floor once or twice, so the biggest issue for us now is night time risk.

My father still values his privacy and desperately does not want to go to a care home. The social worker, who is aware of this, told me on the phone that if he needed night time care the council would pay for residential care, but she also raised the alternative of a 24hr live-in carer. She quoted likely costs of both - and left me with the clear impression that the council would contribute the equivalent of residential care, leaving us to cover the additional cost of live-in care (presumably with a direct payments arrangement, as we had before). We are prepared to top-up the funds, but simply cannot afford to fully-fund his care.

However, when I asked the social worker to confirm my understanding, she sent me a one-line email which said: ‘The council does not fund live-in care.’ It provided nothing further. We are now completely at a loss and worried that she can force my father into residential care, against his will, if she decides he needs 24-hour care.

Is it true that The Care Act 2014 states that Councils should not discriminate between residential and community care when making funding decisions?
Given their responsibility to provide care, and their readiness to fund residential care, can the Council really decline to contribute to the cost of live-in care (which is my father’s preferred option, and when we are prepared to fund the additional cost) and force him into residential care?

Thanks for any experience or advice you can offer.

 

[Shedrech]

hello @Dearest Daughter
a warm welcome to DTP

it's unusual for the Local Authority Adult Services to consider paying for live- in care

you might want to look into organising a direct payment arrangement
this link might work

direct care payments - Google Search

you would have to fund any fees above this amount as a third party, the 'extra' should not be paid from your father's finances

 

[keepurheadup]

Hi there, also new here but saw your post and can understand your frustrations. I started caring for my mum at 22 and am turning 26 and honestly it is adult social services who have made this whole ordeal so much harder.

Unfortunately the truth of the situation is that the council will only fund the 4 visits a day as a "sufficient care package" even if they can recognise that it isn't sufficient. Because they provide "support" in care packages, 24 hour care would not be provided for by social services but instead residential care is the only way this would be funded.

My mum has been a single woman since my dad left when i was young, so it's always been the two of us. She's an independent and proud woman who had lived by herself before me and when i went off to uni, but I deferred and moved in with her for three years because it wasn't safe for her to be alone and she didn't want any carers in the house. I did everything I could to care for someone who was in so much denial of her diagnosis and didn't want to be moved to a care home. Due to the pandemic worsening her condition and me no longer being able to meet her needs she then had to move to a care home. I thought she would hate it, my mum has never like hobbies or living amongst lots of people but its changed her for the better, and I no longer worry that something bad could happen because I couldn't meet her needs. I suppose what I'm saying is that whilst your dad of course wants to stay in his home, do you see longevity in this decision?

To ease your mind social services will not be able to force your dad into residential care because he still holds capacity even with his diagnosis so therefore they have no legal right to do so, and would have to go to court in order to move forward with this, which they will not do because it doesn't benefit their time.

My mum has mixed Alzheimer's and vascular dementia, so unfortunately with your dad having vascular dementia and his age, he will most likely decline and need a nursing home at some point. So maybe you need to discuss as carers what you think would be the best decision in providing all care for your dad. I have been crippled with guilt that my mum had to move into a care home at 70 during a pandemic, however whilst I miss her- I can now see she isn't the independent woman she once was, but that the care home are much better equipped to help her regain some of that independence.

However, this is my lived experience which doesn't mean the same would be for your dad. So i think all you can do if he remains at home, is to continue having the 4 visits a day and overnight stays may have to be funded by yourself which you could do privately so it doesn't interfere with the payment plan from social services. I would hope social services have set his home up with telecare, and panic buttons. My mum condition was too severe to use the panic button, but the telecare helped for her wandering and she came to like the people through the telecare box

Anyway I hope this has been of help, sorry if I have overshared or pointed out things you've already been thinking, because I also know how frustrating that can be. Just know that social services can do diddly squat to move your dad into residential care without his confirmation.

 

[Duggies-girl]

@Dearest Daughter There are not many people with dementia who want to go into a home but many do and thrive because they have a team of people looking after them and activities and most important company. I looked after my dad for a few years popping in and out and taking him shopping and out for lunch and then at home until he died but he had terminal cancer and was not expected to live long. Well he defied all odds and lived another two years. It was just me and him most of the time and it is an incredibly boring job however much you love somebody. I know that if my dad had realised what it cost me financially and emotionally along with the stress he would have called a taxi and put himself in the first home he could find but of course he would never realise because his dementia would not let him.

Councils can't afford to pay for live in care as it is very expensive and I would not say ideal. It takes a particularly special person to be with a person with dementia 24 hours a day and keep smiling and calm even if they are being paid and they deserve to be very well paid indeed to do this. I often got fed up and went in another room to do a bit of jigsaw if dad went to sleep just to escape.

The social worker cannot force your dad into a care home but that does leave you in the same spot I was in. A dad who was very frail and likely to fall and end up in hospital and eventually unable to find his kitchen and certainly unable to locate the fridge but he wanted to stay in his own home so the only choice I had was to move in with him. My dad would have hated that if he had known but he didn't because he always thought I had just turned that very minute.

 

[Jessbow]

It sound dreadful but...if you cannot afford to pay for 24 care in your own home, then quite simply that option isnt open to you.

So many of our loved ones want to stay at home- But how? SS will only provide usually 4 visits a day, after that, its usually residential care or family move in to do it.

Be lovely if everyone that wanted to could stay in their homes and the council pick up the tab- it simply isnt viable

 

[canary]

The social worker, who is aware of this, told me on the phone that if he needed night time care the council would pay for residential care, but she also raised the alternative of a 24hr live-in carer. She quoted likely costs of both - and left me with the clear impression that the council would contribute the equivalent of residential care, leaving us to cover the additional cost of live-in care (presumably with a direct payments arrangement, as we had before). We are prepared to top-up the funds, but simply cannot afford to fully-fund his care.

The SW has not been very explicit about the funding, although, to be fair, she is a SW, not a financial assessor and many of them do not understand the details of how funding works

1 - The prices that she quoted to you were undoubtedly the average cost of a care home and the basic costs of live in care. Live-in care costs can vary enormously. If the person with dementia is compliant, sleeps at night and the family can cover the 2 hour a day break that the live-in care is entitled to plus holidays sickness etc, then the cost is not much more than an average care home. However, if the family cannot do this and extra carers have to be called in to cover breaks etc, or the person with dementia needs two carers to attend to personal care or (in particular) if the carer is woken more than twice during the night and an awake carer is required during the night so that the carer can sleep, then the cost can be eye-watering.

2 - Care homes can vary hugely in cost. Mum moved into a care home on the cheaper end of the market that cost just over £700 a week, but there were others in the areas that cost well over £1000 and it was not unusual to find places that would cost £14,000. The average here was about £900. Social Services, though, would not pay that amount. They would have accounts with some of the cheaper homes that would accept what the Local Authority would pay - which at that time was about £550 a week.

3 - Care at home is comparatively more expensive. At the time that mum moved into her care home, the funds that SS would pay for, cost them about £20 an hour (it would be more for self-funders). If someone required four hours a day of carers this would cost £20x4x7 = £560 a week

These figures are from a few years ago when mum first went into a care home (carers for OH now cost me £32 an hour as a self funder), but you can see the principle, that the cost of 4 hours of care at home is about the same as a care home. The care act does indeed allow people to opt to live in a different location, but it also allows the Local Authority to cap the amount of spending and this is what your LA is doing. Any extra costs are to be payed by a third party (usually the family) as a "top-up". There is nothing stopping you from continuing with the carers that he has and paying for extra extra for overnight care - if you can afford it. Your LA might be willing to take on the overnight care as part of their package (as they can get it cheaper) and bill you the extra as a "top-up", but dont bank on it as "top-ups" are usually private arrangements with the care provider.

 

[Brizzle]

It may be difficult but it is not impossible to get the council to fund live in care. My Mum’s local council were prepared to match the higher level that they would pay for a residential care home and put that towards 24 hour live in care .

It is also not totally impossible to get somewhat above their maximum threshold whereby they think that live in care is actually in the best interests of the patient. It has to be approved at a higher level but in my local authorities case the option that the council could bend the rules slightly in exceptional cases was proven to exist.

I have found that many people post generic replies to questions regarding the funding of live in care such as , “ the LA only let you have four visits a day”, “live in care will not be funded, only residential care” and “if you cannot afford 24 hour care in your own home then quite simply that option is not open to you”.

If you took these comments literally it would be quite understandable that you would think that these “rules” were set in stone UK wide and basically give up before you even made an attempt in your own area to see what was possible. I wish people replying in their sincerity would add a preface to their legitimate experiences in their area to let original posters and others looking into this that this is just their experience in their area and not necessarily a guide to the country as a whole.

Canary has provided a lot of useful background information regarding the possible hiccups with social services funded live in care. For now everything is working ok for my Mum with one carer coping and thankfully not complaining about anything. Should that change and an additional carer be be needed then I am 100 per cent certain that social services would insist that my mother now required residential care due to her extra needs and in all honesty I would not try and argue with them over that since if I did then I would be the one in the wrong.

Trying to get a direct payment (as Shedrech has mentioned) if the council refuse to get personally involved in providing live in care is another option worth pursuing. They hopefully may be prepared to give you their upper residential care home allowance less any payments your Dad has to make towards his care which will be worked out at the financial assessment stage. You will then have to arrange the care privately which will involve all sorts of hassles and paperwork unless you go through a mainstream live in care company. You will have to top up out of your own money whatever the difference is between the councils payment and the cost of the care. Bear in mind the extra expense of covering the live in carers 2 hour daily breaks and sometimes a food allowance that you have to provide. You of course can save money by covering some or all of the 2 hour breaks yourself.

 

[Jessbow]

I have found that many people post generic replies to questions regarding the funding of live in care such as , “ the LA only let you have four visits a day”, “live in care will not be funded, only residential care” and “if you cannot afford 24 hour care in your own home then quite simply that option is not open to you”.

I meant once you had sorted out your funding, if it was applicable.

 

[canary]

Hi @Brizzle
I am extremely glad that you managed to get funded for live-in care. I do take your point that we can never say never, but I do feel that your point that "in my local authorities case the option that the council could bend the rules slightly in exceptional cases was proven to exist." (my bold) holds true. In another post you said that you thought that the only reason that you got it was because your mum had had self-funded live-in care for several years before her money ran out. Your mum was in in completely different circumstances to this poster.

I do worry that you seem to be presenting this as a viable option to everyone who is just beginning to look at their options and are in very different circumstances to you. I think this will perhaps raise hopes for things to happen, only for them to be dashed.

 

[Brizzle]

Hi @canary,

I really have to disagree that in your words I am “presenting this as a viable option to everyone”. What I have said and continue to say is that anyone looking into the possibilities of live in care being funded ( subject to a possible self contribution) should not give up before they have began due to the general negativity that seems to prevail on this forum.

I wish to correct you on a couple of things. To my knowledge nowhere in my posts have I said , “ the only reason that my mum got social service funding was because she had previously self funded live in care for several years “.

In a recent post I did say , “ My Mum had previously paid thousands of pounds privately over a period of time for live in care and had her main carer present with myself at the needs assessment so I guess this proved the model was working well. Maybe if we had asked for live in care from a standing start things would have worked out very differently.”

The “ several “ years you seem to have interpreted was in fact around 9 or 10 months although previous to this my mother had been self funding day visits for around 2 years but of course these are an entirely different kettle of fish to full time live in care. 10 months live in care does equate to thousands of pounds though, around £45,000 in my mum’s case.

What I have basically said here is that having tested the water with live in care and found it to work this would presumably of gone some way to help mum’s case, but of course it was not the “only reason” mum got live in care granted. A lot of weight was placed on how passionately my mother came over to the assessor in wanting to stay in her home. The assessor spent more time chatting with my mum than her carer or indeed myself ,which if it is still possible , is at it should be.

Also please remember that I only said “maybe” things would have worked out differently if we asked for live in care from a “standing start”....I have no idea what the outcome would have been although my gut feeling is we would have still convinced the assessor that this was the best option. What I am sure of is that despite almost everything that is being said on this forum I would have still fought tooth and nail to get live in care for my mum if that is what she wanted and that is what I also felt was best for her.

With regard to this poster, other than the fact that they have never self funded live in care, their situation sounds very similar to myself and my mothers when we reached that watershed moment where mum could not be left safely overnight. I believe the SW in their case was speaking about the general possibilities of funding live in care in certain areas only to get a wrap around the knuckles when she mentioned this to the local authority. If it is absolutely in the best interests of a loved one to stay at home then due to their legal duty of care and best interests of a patient it really is not good enough to just say “ the council does not fund live in care”. They have to justify their decision particularly where live in care is going to cost no more than residential care. However people should try not to let their emotions take over too much and consider if realistically the council are correct that some individuals needs are best served in a care home.

Again regards the "viability" I respectfully feel you are misrepresenting my words. I start my post above with "although difficult" and go onto say in so many words that if you require more than one live in carer unless you have the financial means you pretty much want to forget about it.

Everybody is an adult here and most are very downbeat about the chances of funded live in care so as a lone positive voice I am hardly building hopes up in my comments, only suggesting that it might be posible depending on your circumstances as it was for my mum.

People should read all views and then make their own decision as to the right course of action in relation to their personal circumstances.

All I am doing is giving a little hope to just maybe a few in similar circumstances to myself which is I feel infinitely better than dashing all hope for all before it has even began.

Better to have tried knowing you may well lose than to never try at all and definitely lose. You will at least know you did all you could rather than have any regrets or doubts when looking back and saying , “ I wonder what would have happened if “ ?

 

[Jessbow]

. They have to justify their decision particularly where live in care is going to cost no more than residential care.

I'dbe curious to know what rate your authority paid for residential care !

 

[Bod]

"Live In Care" The unseen costs involved.
Non of the current house keeping costs will reduce. Gas, electricity, water, phone, etc, bills will still come.
Indeed most might well rise, with an extra person to cover. ("May I phone my Mother, it's her birthday?" "Yes, of course" not knowning mother lives in Africa, and may need several calls to get through.)
Food will rise, another mouth to feed.
House hold maintance will not go down, the Carer will not change a light bulb. Or cut the grass.

This is all on top of whatever the Carer costs.

In all, for short term care, for an easy patient, then Live in may work. But for longer term, or more difficult patient, then the monetary considerations do have to be looked at.

Bod.

 

[canary]

I am sorry that you feel i have misrepresented you @Brizzle and for this apologise.
The part of a previous post that you quoted is indeed the one that I was thinking of. You hadnt actually specified how long your mum had had live-in care and I assumed (falsely) that it was a matter of years rather than months. Also when you said "Maybe if we had asked for live in care from a standing start things would have worked out very differently." I interpreted this to mean that you didnt think that you would have got it if you hadnt already been using a live-in carer. I apologise for misunderstanding.

I want to explain my concerns a little more. We all share our own experiences on here - it is what makes this forum so useful, but we have to remember to make the circumstances of our experiences clear, especially when they are exceptional (which yours is, by your own admission - "in my local authorities case the option that the council could bend the rules slightly in exceptional cases was proven to exist." ). You did not tell the original poster that your mum had already been self funding live-in care and that what you wanted was for the LA to continue funding this. The original poster is not in these circumstances - they are indeed at a standing start.
When you say

It may be difficult but it is not impossible to get the council to fund live in care. My Mum’s local council were prepared to match the higher level that they would pay for a residential care home and put that towards 24 hour live in care .

with no context, it seems (or certainly seemed to me) that you are saying (or at least inferring) that if everyone shouted loudly enough, they can all get live-in care, which is patently not true. These are the things that concerned me enough to post about them - and I hesitated about it before I did. I apologise if this post also upsets you, but I did feel I needed to clarify my concerns.

 

[Brizzle]

@canary the “exceptional “ bit I was referring to was that the council were prepared to make a top up to cover the cost of live in care over and above the standard weekly price they would pay for a residential care home. In my mum’s case there was nothing exceptional about them agreeing to at least apply the standard residential cost towards her live in care cost.

I think the following paragraph is very relevant from the OP,

“My father still values his privacy and desperately does not want to go to a care home. The social worker, who is aware of this, told me on the phone that if he needed night time care the council would pay for residential care, but she also raised the alternative of a 24hr live-in carer. She quoted likely costs of both - and left me with the clear impression that the council would contribute the equivalent of residential care, leaving us to cover the additional cost of live-in care (presumably with a direct payments arrangement, as we had before). We are prepared to top-up the funds, but simply cannot afford to fully-fund his care”

All I have told the OP is that in my case as per her impression the council were prepared as a “matter of standard” to apply the equivalent of residential care and if they saw an exceptional circumstance they might possibly go further. The exceptional circumstance in my mother’s case was clearly that they thought sending her to a residential home would be detrimental when compared to staying at home. A needs assessor needs to go back to their “ manager” with a case for the extra exceptional funding to get it approved. I have heard the “manager” word used regarding extra funding elsewhere on this forum.

However the “exceptional” part of the funding is pretty much a “moot” point anyway in relation to the OP as they have clearly stated that they have done their sums and are prepared to make up the difference themselves should they be offered the same amount as the standard residential payment .

Regarding circumstances it goes without saying that no two cases will be exactly the same, in my mother’s case the council did refuse to continue funding her current live in care provider although they did cover it short term until they found a more economical carer. Irrespective of whether the OP’s loved one has a track record of a few months live in care or not the main onus is to “prove” that live in care is the best option at the needs assessment. If you genuinely believe that sending your loved one to a residential home would cause a rapid decline in that persons health then get it all out in the open. Try and get your social worker to be present and back you up. Perhaps the odd carer or two might write something on your behalf ? Above all else , if they are able to, let your loved one speak up for themselves about passionately wanting to stay in their own home.The needs assessor will want to speak to your loved one more than anybody else and what they say will cary more weight than anything you can say. Always remember the onus is ultimately on the LA to give the reasons for their decision, it is they that have the legal duty of care to make the right choice for your loved one and they cannot just palm you off with a mere, “ we don’t do that”.

I will admit that it would appear to be quite unusual to have the council directly fund a live in care agency, I was expecting a direct payment myself but it is your right by law to receive a direct payment should LA agree that for the time being live in care is the best option and they are unable to directly provide that service.

Regarding my opening comment :-

It may be difficult but it is not impossible to get the council to fund live in care. My Mum’s local council were prepared to match the higher level that they would pay for a residential care home and put that towards 24 hour live in care.

How you can interpret that as me saying “ if everybody shouted out loud enough they could all get live in care” is really beyond me. The clue to what I am actually saying is in the words, it may be difficult but not impossible to get council funding towards live in care. I merely referred to my mother as a case in point.

Later in the same post I go onto say the following :-

Canary has provided a lot of useful background information regarding the possible hiccups with social services funded live in care. For now everything is working ok for my Mum with one carer coping and thankfully not complaining about anything. Should that change and an additional carer be be needed then I am 100 per cent certain that social services would insist that my mother now required residential care due to her extra needs and in all honesty I would not try and argue with them over that since if I did then I would be the one in the wrong.


It’s hardly somebody continuing to “shout out loud” that actually getting funded for live in care is easy is it ? I am actually referring to the useful background info you have provided and possible hiccups and also in this case emphatically stating that if you cannot get by with one carer or cannot afford the top up to pay for an extra carer you really should forget about the whole thing.

In conclusion live in care is of course is not a viable option for all. Most people I am sure will know when this is the case regarding their loved one.No two cases will be exactly the same but live in care as in my mother’s case will be the best option for at least some. It is to those people I am reaching out ,of course nothing is guaranteed but surely if you think it is the best option for your loved one then you should at least pursue every option and bring your LA to account. Remember the burden by law is for them to prove it is not the best option, they need to come up with some good reasons , the main one probably being that your loved one will require more than one carer. People who fight to get continuing health care (which entails far more work) for someone with dementia are an excellent example of what can be achieved if you fight your corner, they are realistic about their chances knowing they may fail but they at least try and some ultimately succeed.

I would only add that I have offered far more information and context to my posts than most people who merely say , “The LA will not fund live in care” without giving any reason as to WHY they would not fund live in care. For the sake of everybody I hope future posters will elaborate on the LA’s decision and the legitimate reasons behind it, just posting “ the computer says no” type of post really is of no help to anybody.

 

[Brizzle]

. They have to justify their decision particularly where live in care is going to cost no more than residential care.

I'dbe curious to know what rate your authority paid for residential care !

Hi Jess,

The standard rate is £740 per week. When I say that they have to “ justify their decision “ I meant whereby live in care is going to cost THEM ( not what it might cost you after top up) no more than residential care.

Another words unless they are prepared to invoke exceptional measures and pay above the residential threshold then the family will have to top up the extra cost.

 

[Jessbow]

Hi Jess,

The standard rate is £740 per week. When I say that they have to “ justify their decision “ I meant whereby live in care is going to cost THEM ( not what it might cost you after top up) no more than residential care.

Another words unless they are prepared to invoke exceptional measures and pay above the residential threshold then the family will have to top up the extra cost.

so you were adding approx how much? an additional 50%

 

[Brizzle]

I have not had to add anything other than agree to cover 4 carers breaks a week. If I had been able to afford the top up it would have equated to around £100 per week which is around 14 % extra compared to the residential care standard rate.

 

[Jessbow]

so the carer was paid something like half the minimum wage plus board (+ & lodgings? )

 

[Brizzle]

I have no idea what they get paid . We were paying privately previously at around £980 per week which was at the upper end in our area. Live in carers are not paid for every hour of a 24 hour day, typically it suits overseas workers or people without homes who want to save sizeable amounts on rent , heating and many bills in between. I vaguely remember our last carer saying she earned in excess of £2500 per month when she worked a 4 week shift but I cannot advise exactly what the hourly rate was because I do not know the system the live in care agencies operate when calculating what they consider to be a fair wage. Some care agency’s will obviously pay better than others but this applies to many different types of companies.

 

[Saun_A]

This thread has now been closed as it has run its course. Thank you.