At a meeting today where this was spelt out and the 'officials' reactions were very sympathetic, but they were surprised. They shouldn't have been. In the audience (general carers in the county including elderly etc.) were parents of at least four people I recognized who have these complex care needs. Things like being non verbal, unable to walk, unable to swallow, needing oxygen and/or airway protection on top of learning disabilities, epilepsy etc. etc.
They should know. We've been telling them for years what the issues are and the Raising Our Sights report made it official in 2010.
I'm fairly convinced that the real reason is that they are expensive and difficult, so they get passed on and on until they get dropped or a crisis takes them out of the account. This may be their death, or their being shunted into the back room of a mediocre nursing home where they're left to scream with the radio turned up so no one can hear them. (This example is real - the lady in question was 'rescued').
I don't think the officials are bad people. They just don't want to believe they are failing these people so spectacularly.
And saying 'I don't know how you do it.' sympathetically, to a carer who is doing it 24/7 isn't even patronizing - it's insulting.