Top up fees

The elder!y frail relative of a friend refused to go into a care home but needs 24 hour care at home.
Costs ( with LA payment for personal care) but including normal bills like fuel and council tax come to £6000+ per month.
Average care home cost locally is £800+ per week.

My I laws developed Alzheimer’s and vascular dementia, there bungalow they lived in for almost 60 years had to be sold ..They did not get best price as it needed a bit of updating. They have been there three years. The money will run out in autumn time this year, leaving them with the £23 or £14,000 each whatever it is each to pay for foot care hairdressers clothes until they die. So people are paying for their own when they can , my mum has nothing and needs to be in a home but she just has to rot in her flat. Hubby is an only one since his sibling died and so am I we have to try and keep enough for our care I really don’t want my children to pay for us. It is grim out there. Good wishes to all who are going through this awful and confusing time.

GracesGran fortunately where my FiL lives the residents keep an eye out for each other. The warden who eventually lost the job did break the rules with some residents by doing them favours. But it wasn't anything financial or unethical. It was more about things that could backfire on her, like she occasionally gave someone a lift to an appointment. The rules are there to protect both the residents and the warden and avoid any nasty misunderstandings.

The Scheme Manager wouldn't do anything like that simply because she knows she could lose her job. She does knock most days, but I do have a concern about what happens when she is absent for some reason. The alternative is a phone call from the alarm centre. Normally you contact the alarm centre in an emergency by pressing a button on the call unit on the wall by the front door or using the pendant alarm supplied.

My FiL agreed to wearing the pendant alarm when he came out of hospital, but it kept going off accidentally because it's easy to press it against something like the edge of the table. If this happened in the daytime, then he could hear someone from the alarm centre asking if he was OK over the call unit. But one time it happened during the night and we got a phone call from the alarm center saying he wasn't responding, so an ambulance was called and also the police. We drove like mad to get there and we found him in the living room holding a glass of water and totally oblivious to what was going on. He doesn't wear his hearing aids at night and is a deaf as a post! The buzzer went saying the paramedics had arrived and I met them on the stairs and told them it was a false alarm and couldn't apologise enough They told me that it happens a lot and not to worry, they would tell the police it was a false alarm. So that was the end of him wearing the pendant alarm.

But he refuses to have a phone call when the Scheme Warden is absent. He just doesn't think he needs one. We phone him every second or third day and my DH takes him shopping every week. I take him to all his many appointments and that's the best we can do. He was reluctant at first, but now he will ring us if there's a problem thank goodness. Actually me and him get on like a house on fire and he's got a brilliant memory so I now know far more about the family than my DH!

He lives a very small life now. His other son sends cards on his Birthday, etc., but doesn't visit even though he lives locally. He keeps in touch by phone with his brothers and sisters in law. He is quite happy though. He still follows the same domestic routine as when his wife was alive and watches TV most of the day because there's always sport on Sky. He eats well too, although you'd never know from his shopping trolley that he's insulin dependent - he's got a sweet tooth and loves his puddings, cakes and biscuits!

He does very well for someone who 83 next month and can't wait to get driving again.

I don't want to worry you even more WMKF but there was a 'File on Four' programme on yesterday about Sheltered Housing.

But currently, in England, these schemes aren't overseen by the independent regulator of health and social care the Care Quality Commission and councils aren't required to record cases of abuse and neglect in sheltered housing.

It is leading to growing concerns that many vulnerable residents are hidden away and left to suffer without the authorities ever knowing there is a problem.

With a move to care being provided via direct payments, its likely the demand for sheltered accommodation will grow. But there's concern that new developments are being shelved due to ongoing uncertainty over funding.

The mention of 'direct payments' is because this is what creates the possibility of the 'top-up'.

Many good points for us all WMKF. Firstly, even if your FiL were to fall the LA would try, for as long as possible, to keep him at home. My mother's extra care, including the emergency care we didn't get intended to keep her out of hospital, was because of two falls at the beginning of December. It would take far more than a 'simple' fall to get him one of the dwindling number of places in a home. If he needed to go to hospital that might be different.

Nobody in the family has to pay towards his costs whatever his income. I have heard of elderly children being asked to sell the home they share with the parent needing care in order to pay care home costs - this is simply not legal. Between the £23,000 and whatever figure and the £14,000 and whatever figure for savings there will still be a calculation made which increases the assumed income. This may or may not affect what your FiL had to pay depending on his actual income.

Be careful about how you decrease his income because it can be seen as depriving yourself of capital and would therefore still be counted. If you are considering a big expense it is worth checking with the assessor about how this will be seen. I have always felt that very few intend to deprive the LA but it must be incredibly easy to cross the unwritten rules.

I agree that where LAs underpay the pressure is on the management of care companies. Many have just chosen not to bid for the contracts and some have gone out of business. I feel this must put pressure on the carers and I must admit my nightmare is of someone not having a care-coordinating relative to keep an eye on what is happening.

jen originally the warden lived with her husband and daughter in a house on the end of the block of flats. When she retired about 10 years ago now, she was allowed to buy the property from the housing association that owns the scheme (sadly she died a few years later). She was the original type of warden. A full time warden working a standard working week replaced the original warden. This person did not have good mental health and had long periods off sick over a few years. A warden from another scheme came for several half days to cover the long term absences. Eventually the regular warden was allowed to go part time working week day mornings, but no one was recruited to work the other hours. Some residents thought she was wonderful, others thought she was a waste of time.

Eventually she lost the job when the housing association merged with two others. A review of the service took place and a programme of change is being rolled out. The first thing that happened to the scheme where my FiL lives is it was renamed a Retirement Living Scheme and a part time Service Manager was appointed. To be fair, I don't think it's been a true sheltered scheme since the resident warden left. His scheme hasn't been through the major changes stage yet, but most of the changes have been OK. Nothing too drastic has happened, but it's clear that all the enthusiastic suggestions that came from the housing association management at the introductory meetings are unlikely to happen. It's a classic example of how the service gets reduced on small step at a time. Overall though, we think there's worse schemes in the city.

Thanks Gracesgran

It seems a bit like an annuity - you pay in a lump sum then get a return each year on it (or each month). The thing is that you would have to live for a certain number of years to at least get your money back (there is no guarantee of that) and, if you can't use the money yourself to pay your own top-up, it could be pointless if you require a care home rather than care at home.

I wouldn't like to think my DC would have to be topping up if we need care, but it does seem incredibly complex. I need to read up more, starting with the links, it's no good pretending this might never happen.

Interesting, Wilma. The obvious thing there is to put a warden back into the scheme. That would be cheapest in the long run, I would think. What happened to the warden?

I can certainly understand that families do not want their relatives to be worried or distressed by the problem of fees. I'm sure the carers will get on with the job no matter who is paying the fees, but I would be concerned at pressure from the home management. I may be doing them a disservice.

GracesGran yes, you made your circumstances quite clear, it was other posts that set me thinking. My FiL lives in what was sheltered housing which has been renamed a Retirement Living Scheme because there's no warden now.

He has a carer every morning, but otherwise he's very independent and manages very well. He's needed a carer for the last year since he came out of hospital after he lost the feeling in one leg. We knew his savings would mean he would have to pay for the care and that's what's happened for the last 8 or 9 months.

But in the back of everyone's mind is what would happen if he had to go into a care home. He's a bit unsteady on his feet and a bad fall could mean the end of his living alone. After his savings dropped down below the £23k(?), nobody in the family has the money to pay towards the cost of his care. That's why I asked the question.

It wouldn't take that long for his savings to get down to the £23k, probably less than a year. Now that I've read this thread, it worries me that we wouldn't be able to find somewhere whilst he's paying for his care where he could remain when the time comes for Social Services to step in.

We naively thought he could stay where he was.

Probably not WMKF. The whole thing is so complicated. The top-ups I was talking about were for home care WMKF not a care home. They are not the amount you are required to pay because of your income. I had hoped I had made that clear. Means-testing is what it the way of things legally so I am quite prepared to go along with that. The top-ups not only seem underhand but they are very regressive and will affect the poorest the most.

We could, of course, have said we wouldn't pay but I quite like my mother being well nourished and cared for and there were no carers available from the 'preferred supplier'. I am quite sure there is a case for sticking by your principles but we were already not coping and I don't know what would have happened if we had gone on without help any longer - well I do, mum would have ended up in a care home while I put myself back together and, quite possibly, my daughter would have had to take time off work to help sort it all out. I am not saying that for sympathy but because that is families and, to be honest, this hand to mouth system must be more expensive in the long run.

Yes, and you are right about it being voluntary.
There is no care home in my village. There was a council-run one when we moved here, but it was sold to Virgin and the land used to build a new surgery with flats for the over-55s.
So no care home any more. In fact, there are no council-run care homes in County Durham any more.

I'm sure I must be missing something.

No, it's the opposite way around because the resident isn't supposed to have the money (according to Which? there is one exception to this in NI).

Which? Guide to Financing a Care Home

I understood that if someone was in a care home, the top up could only be paid by the person in the home. Relatives were not allowed to.
Is that still the same?

I'm sorry to harp on, but if top up fees are voluntary and there is no space in a local authority home, what is wrong with refusing to pay for the top up fees?

If, as people are say the LA is deliberately setting the maximum to a low amount, why are people enabling the LA to do this?

What am I missing here?

Jalima I would look and see if it is called an Insurance. If it is you will only get anything if you need it. It will work like building and household insurance.

If it is an Assurance then it will pay out come what may. That is why Life policies are called Life Assurance. I do doubt that you would get anything back if you don't need it for what is insured.

Personally I would start writing to MPs etc., and asking for a Health and Personal Care Insurance similar to NI.

There is no legal requirement for anybody to pay top up fees and Social Services have a duty of care towards the resident. If there's no place in a home available that with fees less than the local authority maximum, then surely the local authority will have to pay the full fees? The resident cannot be evicted if there's no alternative available.

I've had a quick glance and it seems that you purchase an annuity, rather like a pension, which would pay out a regular sum to top up your fees if required and, if not, there would be some inheritance left for your heirs. However, it would need further investigation. As is usual with many of these things, it sounds like a game of chance.

Re insurance, I thought it was actuarially very difficult because impossible to assess the likelihood of needing care and potential costs so very high that premiums would be huge. But I may be wrong. Another great problem is finding and retaining a workforce when pay is as low as it is. this accounts for much of the shortage of places I think.

It is almost impossible to qualify for Continuing Health Care now. They can't afford it so have moved goalposts Lucky!

What happens if you just don't pay?

It is a total pigs ear - when I was working for SS it was simple - most of the homes and home help were in-house - i.e. run by the LA.

Now it is almost entirely farmed out to private organisations, each of which has to meet their overheads and make a profit for whoever owns it. And - guess what? - it costs more.

The whole top-up system is a disgrace - families are simply held to ransom - and I always ask, if one home can give good care at the LA going rate, why can't the others?

I would not wish my children to have to pay top-ups for me - this is not what I brought them up for - I want them to have happy lives free from the burden of my care.

By the way, if your relative meets the criteria for Community Care funding via the NHS, it does not matter where they are being cared for (or indeed if they are being cared for) then they still qualify - I got this for my Dad who was being cared for in his OWN home.

Thinking about it, lazigirl, the two homes she was in that did look after her really well were the nursing homes. The one in the middle was the care home. Maybe that's the difference.

My dad was in the care home for a month; my mum was in a nursing home, then moved into the same care home to be with him. By the time she moved he was in hospital, and died a couple of weeks later.
She died three months after him, so all in all, they spent less than six months in homes.
Hope you can manage to get things sorted.

They always said they would never go in a home, but they were in their 80s when all this happened, and none of us were in a situation to look after them.

At least we will know not to burden ourselves on our kids.

Does anyone know - does it work like an endowment policy which matures?

I just wondered if anyone had taken one out for themselves or a family member.