Not Understanding Funding

[Chizz]

To summarise the problems I'm encountering :-

I wasn't involved in my mother's needs assessments even though I am her primary carer, LPA for health and welfare, and she cannot fully articulate her needs on her own. The assessments took place over my head and without my knowledge. I had it written into the ward notes from day one that I should be included in all talks.

In that regard I believe the local authority is in breach of the Care Act 2014:

(5)A local authority, in carrying out a needs assessment, must involve—
(a)the adult,
(b)any carer that the adult has, and
(c)any person whom the adult asks the authority to involve or, where the adult lacks capacity to ask the authority to do that, any person who appears to the authority to be interested in the adult’s welfare.

---------------------------------------------

In insisting that my mother cannot go to any setting where the local authority does not have a contract in place the local authority is in breach of government statutory guidelines. In telling me that I must restrict myself to settings where the local authority has a block agreement that is also a breach of the guidelines. On Friday I was told I could not enter into a third party top-up agreement with the provider, which is also a breach of the guidelines:

Care and Support Statutory Guidance Annex A:

6) This choice must not be limited to those settings or individual providers with which the local authority already contracts with or operates, or those that are within that local authority’s geographical boundary. It must be a genuine choice across the appropriate provision

19) In supporting a person’s choice of setting, the local authority may need to enter into a contract with a provider that they do not currently have an arrangement with. In doing so, they should ensure that the contractual conditions are broadly the same as those they would negotiate with any other provider whilst taking account of the individual circumstances. Strict or unreasonable conditions should not be used as a means to avoid or deter the arrangement

20) In some cases, a person may actively choose a setting that is more expensive than the amount identified for the provision of the accommodation in the personal budget. Where they have chosen a setting that costs more than this, an arrangement will need to be made as to how the difference will be met. This is known as an additional cost or ‘top-up’ payment and is the difference between the amount specified in the personal budget and the actual cost. In such cases, the local authority must arrange for them to be placed there, provided a third party, or in certain circumstances the person in need of care and support, is willing and able to meet the additional cost

29)
· agree with the third party paying the ‘top-up’ (if this is not the cared for person) and the provider that payment for the ‘top-up’ element can be made directly to the provider with the local authority paying the remainder. However, as stated earlier, this is not recommended.
· the person making the ‘top-up’ payments pays the ‘top-up’ amount to the local authority. The local authority then pays the full amount to the provider

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When I quoted the legislation on the phone on Friday I was told that local guidance operates in times of increased need. However my understanding is that does not obviate government legislation or the rights of individuals.

The placement team has emailed me obliquely trying to lay some of the blame for the delay in discharging my mother. That is unreasonable, the care home said last week my mother could be admitted fairly quickly, likely by Tuesday 28th. The week has been wasted because the local authority has been intent on bombarding me with repeated phone calls telling me my mother cannot go there.

I have now been told that a contract with the home is being set up however they are saying the care home has not responded to the contract pack. It appears the contract pack was not sent to the care home until the tail end of the week.

The local authority has said there is no evidence I have a formal top-up agreement in place with the care home. Given that my mother was not assessed until Tuesday and the rest of the week has been given over to fielding refusals from the local authority to consider our choice of setting, there has been no opportunity to put the deferred payment agreement in place - and I believe this is not formally carried out until a mandate exists for admission.

The local authority has said that will not enter into a deferred payment agreement with me as a third party.

The local authority has instructed me to send details of the asset to them for scrutiny. Given that it is a private arrangement between myself and the provider I'm struggling to see how the local authority can demand information on a third party's property when they have already said they will not consider the property as collateral if entering into a topup agreement.

By the end of last week I felt the dialogue was verging on harassment and I feel it has caused the very delay we have all been seeking to avoid. I'm thoroughly exhausted and finding it hard to continue.

They haven't even got my mother's name right, they appear to be using another client's name.

Hi @AnneF
You have set out the position quite succinctly,
You now need to set it out in a letter (keeping a copy, of course, for later evidence) to (a) Local Authority Head of Adult Services, (b) Local Authority CEO (c) your ward Councillor (d) your MP and (e) to show your Solicitor.
As @Dave63 has said, it would be prudent to consult a local Solicitor who has experience in such matters, and it would also help you, if you need it and can afford it, to get Solicitor to take it up with LA ASS urgently, as LA is, unfortunately, more likely to take notice of Solicitor more than they are taking of you, from what you have said.
If LA think they will be taken either to Court or to LA Ombudsman for maladministration, and have to pay compensation for the distress caused, etc, then they will become defensive but will have to take the correct procedure and action. Possible down sides, if you instruct Solicitor, are (a) LA may say they will only deal with the Solicitor and not directly with you (b) you will be dependent on Solicitor acting promptly which will probably cause you frustration.

Keep pushing for what you want and what your mum needs!

 

[AnneF]

Hi @AnneF
You have set out the position quite succinctly,
You now need to set it out in a letter (keeping a copy, of course, for later evidence) to (a) Local Authority Head of Adult Services, (b) Local Authority CEO (c) your ward Councillor (d) your MP and (e) to show your Solicitor.
As @Dave63 has said, it would be prudent to consult a local Solicitor who has experience in such matters, and it would also help you, if you need it and can afford it, to get Solicitor to take it up with LA ASS urgently, as LA is, unfortunately, more likely to take notice of Solicitor more than they are taking of you, from what you have said.
If LA think they will be taken either to Court or to LA Ombudsman for maladministration, and have to pay compensation for the distress caused, etc, then they will become defensive but will have to take the correct procedure and action. Possible down sides, if you instruct Solicitor, are (a) LA may say they will only deal with the Solicitor and not directly with you (b) you will be dependent on Solicitor acting promptly which will probably cause you frustration.

Keep pushing for what you want and what your mum needs!

Thanks @Chizz

I've been drafting the letter all weekend (unfortunately my concentration levels are quite poor as a result of the Covid so I am incredibly slow at the moment) and it is almost finished. I will be copying in those on your list. I will omit the solicitor though, she charges about £600 an hour! Unfortunately I can't afford any formal legal advice.

I feel the barrage from the local authority over the last week and all of the time I've had to spend unravelling it and taking advice has impacted my ability to recover from the Covid infection. I still can't walk to the kitchen and back without stopping to sit down 3 times. I do feel the situation is hindering my recovery. Some of my symptoms have improved (the fever) but unfortunately others seem to be worsening.

The local authority is still insisting I visit the care home they have selected for my mother. They said it is a requirement that I do that and submit written reasons for refusal. They felt I would be free from the Covid infection within the next few days. However I do not think I can drive (I don't live locally) let alone stay on my feet to walk around a care home. I'm dealing with people half my age who have probably shaken off Covid in a few days. They have refuted my view that I am being pressured.

I know from experience that local authorities can be terrible to deal with. But nothing has prepared me for the sheer brutality of the individuals I am dealing with now.

 

[AnneF]

I have just had a very brief email reply from the senior placement officer I wrote to yesterday, copying in my MP and the CEO of the local authority. She said that because I have copied in those people she can no longer deal with the matter and it will need to be passed to someone else. Yet more time wasted.

Across the entirety of the last week I have been passed to somebody else on three occasions.

They talk about wanting to get people out of hospital yet the bureaucracy is so ridiculous that the process becomes impossible. Firstly several days were wasted with people telling me my mother cannot exercise a choice on where to go. Then I was told that because a placement had been found for my mother I have to put forward a written report as to why I am rejecting it, and in order to do that I must visit the place. They have known for a week but I'm sick with Covid had cannot follow that procedure. Yet there is no flexibility.

I now have to wait to be passed to someone else to pick up the dialogue. I've been told I have also been referred to their legal department, which is absolutely unnecessary and another drain on time and resources.

 

[AnneF]

I was finally able to sort out the topup with a more helpful senior LA placement officer, but this has to be paid direct to the local authority rather than the care home as initially agreed. Not a problem though. I was told a couple of days ago by the care home that discharge from hospital was imminent, but later that day received an email from the LA telling me that the contract still had not been finalised. The care home says it has, so to be on standby for discharge. Local authority were still pressing for discharge to an interim placement of their choice which I want to avoid.

I went to the care home yesterday afternoon to start moving my mum's things into the room, only to be told that the room we had chosen and the CRM had reserved has now been reserved for someone else. I was really upset because it was perfect for my mother, the right size and right next to the all-important quiet lounge, and easy walking distance to food and other amenities. I was told they had reserved a different room for us which obviously we had not had a chance to choose. The room is smaller (I think my mum might object to the size), less appealing decor, quite a noisy location, and possibly too far for my mum to walk to the quiet lounge. I was told our original choice of room (specifically recommended to us by the CRM and reserved by him) had been withdrawn because it was a little more expensive than the price we had agreed. If they had contacted me to tell me about the mistake I might have been able to sort something out.

Don't know what to do other than settle for the less than ideal room. Mum will be disappointed as I'd built her up on the room we'd originally chosen, shown her photos etc.

As many of you will relate, tiredness makes everything harder to cope with. I'm still not well enough to drive (depending on my husband taking time off work) and covid brain isn't helping. I wish I could just throw in the towel. A year of hell. What does it take before you finally crack and can't do any more? I've lived on the edge of that for a year, as so many of you have (and even worse no doubt). I can no longer deal with even the simplest situations - what an awful thing to admit to. The strain on my marriage has been extreme, I feel sorry for my husband. My heart goes out to everyone in a similar situation - I know there are many much worse off. I don't know how I'm going to deal with my mother's reaction to going into care, she is so difficult and quite manipulative. Zero help from family.

 

[maisiecat]

I was finally able to sort out the topup with a more helpful senior LA placement officer, but this has to be paid direct to the local authority rather than the care home as initially agreed. Not a problem though. I was told a couple of days ago by the care home that discharge from hospital was imminent, but later that day received an email from the LA telling me that the contract still had not been finalised. The care home says it has, so to be on standby for discharge. Local authority were still pressing for discharge to an interim placement of their choice which I want to avoid.

I went to the care home yesterday afternoon to start moving my mum's things into the room, only to be told that the room we had chosen and the CRM had reserved has now been reserved for someone else. I was really upset because it was perfect for my mother, the right size and right next to the all-important quiet lounge, and easy walking distance to food and other amenities. I was told they had reserved a different room for us which obviously we had not had a chance to choose. The room is smaller (I think my mum might object to the size), less appealing decor, quite a noisy location, and possibly too far for my mum to walk to the quiet lounge. I was told our original choice of room (specifically recommended to us by the CRM and reserved by him) had been withdrawn because it was a little more expensive than the price we had agreed. If they had contacted me to tell me about the mistake I might have been able to sort something out.

Don't know what to do other than settle for the less than ideal room. Mum will be disappointed as I'd built her up on the room we'd originally chosen, shown her photos etc.

As many of you will relate, tiredness makes everything harder to cope with. I'm still not well enough to drive (depending on my husband taking time off work) and covid brain isn't helping. I wish I could just throw in the towel. A year of hell. What does it take before you finally crack and can't do any more? I've lived on the edge of that for a year, as so many of you have (and even worse no doubt). I can no longer deal with even the simplest situations - what an awful thing to admit to. The strain on my marriage has been extreme, I feel sorry for my husband. My heart goes out to everyone in a similar situation - I know there are many much worse off. I don't know how I'm going to deal with my mother's reaction to going into care, she is so difficult and quite manipulative. Zero help from family.

Hi, I am sorry you sre still having an awful time and I think Covid leaves you feeling very weak and drained emotionally. Possiblyif you can seetle for this other room you can ask for a change when one becomes available. I notice in my husband's home that quite a few residents change rooms. Sometimes its to be nearer facilities but often there's no obvious advantage that I can see so that must be a family request. Nothing ever pleased my Father and there was a point where I decided its a waste of energy trying to please the unpleasable. Perhaps you could just explain about the room just as you are ending a visit. Best of luck

 

[AnneF]

Possibly if you can seetle for this other room you can ask for a change when one becomes available. Nothing ever pleased my Father and there was a point where I decided its a waste of energy trying to please the unpleasable.

I think you're right. I also think I'm probably over-reacting a bit, just the worry of mum going into care. I don't know why I'm so worried, she'll be much better off than before. It's a nice care home with nice staff. This afternoon I decided to go for the bigger room of the two which were still available (which is the same size as the room we lost) but this did mean topping up the top up a bit. As with your Father, I suspect my mum won't be impressed! She can be a nightmare and I hope she doesn't upset everybody!

 

[maisiecat]

I think you're right. I also think I'm probably over-reacting a bit, just the worry of mum going into care. I don't know why I'm so worried, she'll be much better off than before. It's a nice care home with nice staff. This afternoon I decided to go for the bigger room of the two which were still available (which is the same size as the room we lost) but this did mean topping up the top up a bit. As with your Father, I suspect my mum won't be impressed! She can be a nightmare and I hope she doesn't upset everybody!

 

[maisiecat]

I don't think you are over reacting I think we are programmed by the system to have that sort of response. In the summer I felt rage all the time,every time another road block was put in my way. When my husband went into his nursing home I cleaned for hours each day because I had so much adrenaline to get rid of. If I didn't clean I had palpitations all the time.
The nursing home was the first place I encountered kindness and care both for him and for me. I hope your mother's nursing home can provide that for you. Try not to worry about her behaviour,my husband is very popular even though he has hit many people and took a radiator off the wall with his zimmer frame. Believe m they have seen it all

 

[Marmalademudpie]

Thankyou for posting this question I'm in the process of this, it's all very confusing and the family can't afford much top ups if required. From the homes I've viewed the ones worth living in are so hugely expensive and out of reach 😭 I'm thinking of splitting my home into 2 living spaces for my mum to come here, but I'm not up to doing full time care.

 

[AnneF]

Try not to worry about her behaviour,my husband is very popular even though he has hit many people and took a radiator off the wall with his zimmer frame. Believe m they have seen it all

I needed to hear that, thank you! I do love the fact your husband has remained popular, that has made me smile on what is a difficult time.

Unfortunately there was a family tragedy yesterday and I am now trying to psych myself up to go to the hospital and tell my mother. I am so worried about how she will react and what this might do to her. She has been doing so well these last few weeks.

 

[AnneF]

Thankyou for posting this question I'm in the process of this, it's all very confusing and the family can't afford much top ups if required. From the homes I've viewed the ones worth living in are so hugely expensive and out of reach 😭 I'm thinking of splitting my home into 2 living spaces for my mum to come here, but I'm not up to doing full time care.

There will be some good affordable homes out there if you don't mind doing without the bells and whistles. I found some, but unfortunately they didn't meet my mum's specific needs. Keep looking.

And please think carefully about having your mum at your home or next door. Much as you no doubt love her, it is a very difficult thing to take on and will be very much harder than you expect. Your mum will grow more dependant over time as well - so you will need access to help.

 

[Chizz]

Thankyou for posting this question I'm in the process of this, it's all very confusing and the family can't afford much top ups if required. From the homes I've viewed the ones worth living in are so hugely expensive and out of reach 😭 I'm thinking of splitting my home into 2 living spaces for my mum to come here, but I'm not up to doing full time care.

Hi @Marmalademudpie
I agree with @AnneF
If you don't think you are up to coping with full time caring for your mum, then don't - it'll be much harder than you think. It's a double whammy - not only does full time care take pretty much full time (funnily enough - clue in the name) but the carer has no time for the carer - so, eg, carer can not only not go away, but can't even go out without cover for the PWD. Life becomes v restricted.
If you can find a care home that can cope with your mum's needs, that you approve, and that your mum can afford (on her own or with LA contributions etc) take it - you will then see her as a visitor as much or as little as you want and your life is not restricted as you will know that the care home have day staff, and night staff to keep your mum safe etc. It's still a hard decision, but remember you still have a life to live.
Best wishes.

 

[AnneF]

Finally. Mum was installed in the care home today. It was more nerve wracking than I thought it would be, I won't sleep tonight. A few meetings to do over the coming days and the contracts still to sort out. What a long haul it has all been.

One of the biggest worries with my mum is when she is asked things, the answers she gives are random. People don't necessarily know that, and at times it has caused some significant problems, including safety issues. All this has to be ironed out and it is so tiring.

On the positive side she was very impressed when she arrived and likes her room.

 

[Banjomansmate]

👍 Grab every positive aspect you can!

 

[AnneF]

A few blips at the care home.

Prior to and on admission I kept reiterating to staff that my mother has a history of alcohol abuse and has been dry for a while, and should not be given alcohol because one drink can cause problems. I discovered this had not been put into the care plan as I had requested, so I had it added in red. I had to intervene once or twice when drinks were being offered to residents. My mum is quite happy with a soft drink but if alcohol is offered she will automatically say yes. Today I booked to have lunch with her and had to intervene when a glass of wine was being put into her hands. This was one of the carers who I don't think had read her care notes. It worries me because she is very frail now and after the small strokes a few months ago alcohol could be fatal for her as well as kicking off the addiction.

She also heard a nasty bout of diarrhoea this afternoon which is highly unusual for her. I asked one of the carers if she had mistakenly been given laxatives and I was told that twice daily laxatives had been prescribed for her. I have no idea how that came about because she has never needed laxatives. I suspect this is because in hospital they are routinely given laxatives on the orthopaedic ward, but it should not have been prescribed thereafter. I was told they could not undo the prescription without consulting the GP. This means my poor mum is going to be given laxatives twice a day for God knows how long, meaning I can't even take her out for a walk.

She also mislaid her bottom false teeth this afternoon, we think she had left them on the table in the dining room wrapped in a tissue. I even went the extent of putting rubber gloves on and sifting through the refuse outside to see if they had accidentally been binned. No sign of them in the bin and no sign of them indoors. These cost a fortune, thousands in fact, and we can't afford to replace them.

I also had to remind the carers to put her hearing aid in every morning, which they have not been doing.

I am also repeatedly reminding staff to ask my mum if she wants the toilet every couple of hours. I have not seen them doing that. They told me it was because I am there. I don't want to have to do do the job they are paid to do, so I feel they should still be prompting her.

I want to be able to step back and feel that my mum is being well looked after, but after a week I would have hoped for more attention to detail particularly as they only have a dozen residents at the moment. This is also a very expensive care home.

 

[canary]

Sorry to hear about all the blips
Is your mum enjoying the quiet lounge?

 

[Kevinl]

Funding or crisis intervention, when it hit the fan they do step and do do a very good job bin my experience, but it is crisis management not help.
K

 

[AnneF]

Sorry to hear about all the blips
Is your mum enjoying the quiet lounge?

The quiet lounge is fantastic. My mum likes sitting in it looking over the park. People walk past with dogs and wave which is nice.

I'm worried about the alcohol though. I fully appreciate people should have choices in how they live, but I can say from considerable experience (both my parents abused alcohol) there is no benefit from giving a recovered alcoholic any alcohol - and there are an awful lot of risks. Just giving my mum one drink could kick off the whole awful spiral again. If I hadn't been at the home today she would probably have had several drinks and likely a fall and injury (as in the past) and a return to alcohol dependency. She is accustomed to not drinking now (she's been sober for a couple of years) and I would be heartbroken if that was destroyed and her wellbeing compromised. It isn't about freedom of choice, it's about safety. My mother cannot drink safely or in moderation, as I know only too well.

 

[Claire Batt]

I have just read this forum and I'm so sorry to read of your extreme difficulties. I really feel for you and well done for staying strong and hanging on in there. The system is incredibly difficult. We are currently in the situation where Mum is in hospital and we have found the right care home. However, Social Services are saying that we have to use one of their 'block beds', which I believe is against the Government Statutory Guidelines. On the advice of Alzheimer's UK, I have just contacted Care Rights UK and they have given me some really helpful guidance. I would highly recommend anyone speaking to them if you're having difficulties.

 

[AnneF]

I have just read this forum and I'm so sorry to read of your extreme difficulties. I really feel for you and well done for staying strong and hanging on in there. The system is incredibly difficult. We are currently in the situation where Mum is in hospital and we have found the right care home. However, Social Services are saying that we have to use one of their 'block beds', which I believe is against the Government Statutory Guidelines. On the advice of Alzheimer's UK, I have just contacted Care Rights UK and they have given me some really helpful guidance. I would highly recommend anyone speaking to them if you're having difficulties.

I'm sorry to hear that - rest assured you can get it sorted, albeit with something of a battle! I'm sure you know all this, but to exercise your choice the care home you've found must agree to accept a local authority funded placement (or you'll need to find a way to pay the difference if the care home is more expensive than your mum's local authority allowance).

Simply quote the statutory legislation to Social Services in writing (email is fine) - that's all you have to do. Keep on doing it. If they still won't budge you should then inform them that you have made them aware of their obligations under the legislation and they are choosing to breach it, therefore you will be taking your complaint to the head of adult services, the head of social services and your MP. After I did that things changed quite quickly.

They count on people not knowing their rights. I will also say that a lot of social services staff don't seem to know the rules either!