young adults with special needs advice needed

[magicfarawaytree]

My newphew (21) has special needs delayed learning - they have never been able to fully diagnose him. he has traits consistent with cerebalpalsy but not cerebal palsy, he has traits consistent with neurofibromatotosis but not neurofibramatoris etc. he lives in accomodation at the moment in order to prepare him for independent living. my sister feels like she is banging her head against a brick wall with his social worker and feels that the her dealings with scope have been less than productive. she is trying to find out what services he should have access to and how the transition should be managed - he was left wandering around ASDA for a good few hours one day until her husband went to collect him. not sure if this make sense. TIA

We haven't reached that stage yet - ds is only 8 - but I'm already dreading it. Very interested to hear thoughts and experiences.

forgot to ask question - does anyone know where she can find out how the transition should be managed and what services should be available to him at this stage. she feels like its a one shoe fits all approach and btw way were are not really going to enlighten you as to what that shoe looks like.

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I also know very little about entitlements for adults with LD. I have heard that services/ provision post 19 are very poor especially at present. A friend whose daughter is approaching transition is battling away to get a suitable placement.
There are a couple of organisations/ charities that have specialised supported communities such as farms or bakeries with accommodation. I can only remember one at the moment - Camphill Trust I think it is called. There are others. Can Mencap help?
Sorry to be so vague my ds is 8 but already I worry for the future!