It's a pity you don't have it. It isn't perfect for us, either, but simply providing a government allowance to someone who cares for a person with a disability more than a certain number of hours a week - it makes a lot more possible.
It takes a village to raise a child, they say, and sometimes it also takes a village to care for a disabled adult otherwise living alone. A neighbour of ours is multi-handicapped, no diagnosis other than epilepsy that I know of, but I've thought for years he was a severe Aspie as well. He has the qualities of an Aspie as well as the handicaps. We've known them since we moved here, knew the parents well. His father was a wonderful support to his son as well as the community and it is at least partly for his father that many of us now look out for the son. He spends some time visiting his sister and is in a weekly routine that has him spend a day or two with her. The rest of the time he is in the home where he grew up, where his father built his storage sheds for the family 'collections', now an informal private museum. He's had a live-in (unrelated) carer a few times. The first one turned out to be a crook, he tried to get our friend to sign over the deeds to the house (worth a lot because it looks to the sea). But our friend was smart enough to tell someone who called in the police.
The next live-in carer was an old man who needed somewhere to live and some purpose in life - he was a goof friend and support, until he developed cancer and had to go into a nursing home.
All this took place in the years immediately following the father's death, our friend's mother had died several years earlier. His father knew he was dying and did what he could to make provisions.
Now - I think our friend used those times to develop his own independence skills even further, he now looks after himself much better than he used to. He's been 'organised' to visit here, visit there, go to this meeting or that meeting (plus his sister's arrangements) so he's actually very busy and seems happy.
He did get teased a bit by the same gang of local thugs that attacked difficult child 3 - a neighbour and friend from church saw this happening and talked to the kids, said that our friend is a bit different but very clever in his own way. But he needs to be looked after and not made fun of; could you kids please come and tell me if he's ever in difficulties, and please help us keep him safe?
It seems to have worked.
And in turn, our friend has begun following in his father's footsteps - others in town who are needy in various ways, perhaps ostracised for being difficult or different, I keep hearing how our friend has visited especially when they feel unsafe (such as Halloween) and just by being there, has kept them safe.
We do need to put a lot of strategies in place before we die, as well as make whatever financial arrangements, custody arrangements etc. Our system is still open to abuse, but it's at least a starting point. It's also a lot better than it used to be - my mother told me of a cousin of hers, they were the same age and good friends. But when her cousin was 15, her parents died. Because the girl had cerebral palsy (called "spastic" in those days and believed to be a form of mental retardation) the girl was incarcerated in a mental asylum. No other word for the place. And the money that had been left by the parents to take care of the girl in comfort - taken by the state to go towards her keep. She could have been kept happy in someone's home, but instead was locked away. My mother never heard from her again, she was not allowed to have contact because she was only a child. This was back in the days when children were not even permitted to visit their parents in hospital. Mum used to tell me how not many people could understand the girl, but she could and they used to talk about all sorts of things together.
I think that is the scenario we all fear. I gather that in my mother's cousin's case, although the will left plenty of money and the house to the girl, the parents hadn't actually organised a carer for her. Or maybe they had, but the State in those days was draconian, especially if they could gain assets in the process.
Our friend and neighbour has gained more independence skills in his old age than we ever thought he could. He still potters with his hobbies, he is better at getting his needs met and although he doesn't talk to people much, when he does he is clearly a kind and good person and people respect this in him. But we live in a village. I think it makes a difference. Maybe in the city things wouldn't be so good for him. Here, we often leave our houses and cars unlocked when we go out, we drop in on neighbours without invitation or reason. You can be driving down the road and see a car stopped in the middle of the road, a pedestrian (or another car) beside chatting, window wound down and all the time in the world. We go to the local shop for five minutes and maybe don't get home for an hour because we met people we needed (or wanted) to talk to.
An environment like that can help raise a difficult child.
Marg