the LA have behaved very badly toward us but so did the NHS
I am so sorry, but not surprised. The system is broken, and I would go so far as to say that it is knowingly cruel at times. I've run the gauntlet of obfuscation and at times outright lies from the local authority. Everything is weighted against you.
I've been there more times than I can count. The hospital discharge team and social worker sent my mother home from hospital in February knowing full well the situation was completely untenable for us. They knew very well that a care package at home wouldn't even come close to meeting my mother's needs, and they knew that I would have to give up work to take care of mum every day despite living in a different town.
No matter how often I begged for help, no matter how often I use the terms "carer breakdown" and "safeguarding issue" there was silence. They knew my mother would either die or end up in hospital again - and the latter is what has happened.
The so-called needs assessment turned out to be a very brief phone call to the ward made by a community social worker.
Remember that social workers will never be on your side. Their job is to minimise expenditure, no matter the cost to the people they are supposed to be safeguarding. I deeply dislike every one of them. The power they wield is extraordinary, their decisions will veto even that of doctors and they take no consideration of the accounts from family - the very people who are looking after that person every day and who know them best. I find it incredible that social workers can make the determinations they are permitted to make when they have no medical training and when they have met their client for only a few minutes. This year every bit of information the social worker has drawn upon has been from the care agency tasked with looking after my mother - who are very young, completely inexperienced, disinterested, with no relevant training or background.
I'm sorry, I could go on ad infinitum. I just get so angry when I read stories like yours and the many others I see on these pages - the social care system in this country is deplorable, shamefully so.
As I think I mentioned earlier to another respondent, you need to get some help and you need to absolutely stand firm. Tell the care home you can no longer afford the top-ups, and see what happens. If they are seriously minded to tell you to remove your husband to a more affordable facility then argue that it would not be in his best interests - particularly since they were the only facility from the outset who could meet his complex needs. It sounds like you have been paying the care home for quite a long time, which will stand in your favour.