Hi my own experience is that nobody can be made to pay a top up fee but local authority will decide whether they can provide somewhere without top up fee or will actually pay the top up fee to the home or negotiate with them. However they won’t pay for anything fancy. I live where homes very scarce and no top up available from family so they paid mums fees apart from taking her pension and contribution from very small private pension.
You're right that they won't pay for anything fancy. However it has turned out that the only homes I have shortlisted that meet my mother's needs are quite fancy - although the price per week is very close to the other homes we have looked at. One is brand new and presumably eager to fill beds, so could be open to some negotiation.
My mother had a bad head injury a few years ago in an RTA followed by three years of rehab (learning to talk again, regain her balance and movement etc). This left her immensely noise sensitive to the point where if we go out it always has to be a quiet location, no noisy cafes, she doesn't watch television or put the radio on and when she goes to daycare she spends most of her time in the sensory room because it's silent. Too much noise brings on migraine, vertigo and sickness. This means that a care home with a quiet lounge and hopefully a quiet bedroom is absolutely vital to her well-being - she would not cope otherwise. Most of the places I've been in (particularly the ones which accept local authority funding in full) have been nothing short of deafening (televisions blaring in every room, radios blaring in all other spaces) - distressing for me so would be unbearable for my poor mother. This isn't a preference, it's a very real need.
The other need that my mum has is plenty of activities and residents who are able to enjoy varied conversations. A dementia or nursing home would be highly detrimental to my mum because of her social needs - and her dementia is still fairly mild with no wandering or aggression. I would therefore argue that she needs to be on a residential wing but might benefit from having dementia care and nursing care also available in the same establishment, to avoid moving her later on.
Another thing that I would consider a need would be that I could access her easily and often so I would want a home that was within half an hour's drive. I've been her primary carer every day for the last year.
The above reasons are why I am so preoccupied with discussing top ups, I cannot let my mum go into a place which would make her ill. I just want her to be well cared for and happy in her surroundings
