I'm glad somebody swore, I wanted to. What a joke this all is. I'll share with you what I've learnt so far, hopefully it will help you.
-You are not legally obliged to provide any care. They know you can walk away at any moment (not that you would, but you could)
-Care in a care home is not necessarily cheaper than at your own home, especially if you are willing to provide some care or could make a case for specialist care that would have to be provided to your son as an individual case (i.e. they would have to set this up for the first time at the home - they hate this kind of thing, makes it too difficult)
- There are new directives now from, yes, believe it or not, the Government, which is placing emphasis on patients returning home and everyone's right to live at home, as long as it is safe to do so. Since you live there, it is safe.
- The human rights act. Mention this to professionals and they get very sheepish, normally does the trick. They know that most situations breach people's human rights in some way and it is just a case of arguing this. You have a human right to have a normal non-caring relationship with your son and the right to respite and well health/surgery. Your son has the right to request that he wants only external carers, due to appropriateness of your relationship/dignity issues etc. You could have them over a barrel on this one alone.
-Every time we have ever asked for something they threaten validity of the care plan, sustainability etc (i.e. threats). We unravel their points as completely unfounded, they blame me in some way and character assasinate, I unfound these, then they eventually give in and give us what we should have anyway. It has always been this way.
My advice - get a solicitor. Some will work for reduced fee or for free. Check your home insurance for included legal aid. Take the solicitor along with you to meetings. Often their mere presence changes the outcme, whether they only observe or otherwise.
And good luck.

I'm still pressing on with my shower fight. I'm argung that it breaches care guidelines, which suggest the patient has the right to choose when/where and even if he requires washing. I'm taking timings of shower days verses non shower days so we have solid statistics. I have surveyed all carers for their input - most think it is easier and not much longer. If they still don't respond, I will take away my administering of medications. This means they will have to send a qualified (and higher paid) nurse to do this twice a day, which they will hate but they CANNOT refuse to do this as this is not an optional need. Basically I am willing to send out the message that if we don't get what we want, we'll make things more difficult for them, still all within the realms of things that they provide to other patients, so they cannot turn around and say 'unsustainable'. Stuff them is my attitude at the moment. It will probably change, but right now I'm up for the fight. Might ring CUK as well, thanks for the advice xx