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The answer to the keyworker, daycare support etc is no. He does actually work, doing a fairly menial job but has had his hours cut. He would love to work, and certainly can cope with menial jobs that he has been shown how to do, but there is nothing locally and he is not able to make journeys on buses alone.
They have no help or support at all. I have encouraged my friend on more than one occasion to contact Social Services regarding just being in the system, because if she were to die suddenly he would be seriously struggling. She appears to be quite resistant to this. I can't quite get to the bottom of this other than the usual idea of social services, interfering etc.
They had a very good friend who was his supporter, advocate and general person who would step in under those circumstances. Sadly this person has died and they don't have anyone else. She does have a daughter who, sadly, is completely incompetent, unreliable and untrustworthy. She would definitely not bring her in on this.
As far as the paperwork from the DLA application is concerned. I don't know. Given that he applied when he became an adult, and he's 50 now, I think maybe not. Surely though, this information should be logged somewhere from the DLA system.
The GP is no use to help, they probably know more about Fragile X than he does. He doesn't know my friend's son because he's consulted him once in the last 30 years!!
I take the point about the 'objective' person and see how this could actually make things worse, from the point of view of making things seem better than they are.
He used to have input from Mencap, the last time she contacted them for help on another matter, they took the details and said they would call back. No one ever did, and in the end we helped her out with this problem which was to do with his employer.