Am in a somewhat desperate situation regarding my 'care' package and university; any advice much appreciated. This is pretty much a direct copy of a post I just put up on the messageboard – too stressed and busy to write something else at the moment.
I've been getting 10 hours a week of PA support for over a year. It's been massively inadequate as a package, but I've assumed it was all my council would provide. Apparently, when I went onto Higher Rate Care (and was dx'ed with EDS) I moved into the 'critical' category and everything changed - but no one bothered to tell me. Why would they? I would only have wanted more hours...
I am about to move to Leeds for an MA course. I haven't lived alone since I've been ill. My other half and I contact our council in good time, asking for my care package to be reviewed. The weeks go by and I do not get a review. I kick up a fuss. I kick up a fuss some more. I threaten legal action. I get a review.
The social worker then 'forgets' that last week had a bank holiday in it, and is therefore unable to put my case to panel until the day before yesterday. Which is *one week* before I'm due to leave. I get VERY worried and tell him things are about to go wrong, but he says there's nothing he can do (he vaguely admitted responsibility, but did nothing to rectify things).
Fast forward to this week. The decision-making panel decides I'm too complicated to make a decision on - DESPITE THE FACT THAT I'M LEAVING IN ONE WEEK'S TIME (and I'm really not that complex) - and want to refer me to a *different* social care team (physical disability social workers rather than ASWs - I never knew there was a difference) and to the ILF. This because they think I should be having considerably more hours than I'm asking for. Does anyone ask *me* whether I want that? No. (I'm dyspraxic with social anxiety disorder, and I'm going to be living in one room, and I'm only used to managing 10 hours a week. What did they think my response to this would be?) Does anyone put in arrangements for (at least) my first week at university? No. I have innumerable panic attacks over about 36 hours, stop sleeping, start talking about not going to university at all (despite having paid half my course fees and some accommodation fees). My very long-suffering other half tries desperately to get the social worker to DO SOMETHING, but he claims he's being told to do the cross-referrals first and can't do anything else. He again admits liability, saying that his manager can't understand why I took so long to get an assessment, but is apparently not interested in the effects of this, i.e. no one gives a flying **** about me. I make clear statements that I am now holding this council legally responsible for any injury, loss of money or earnings potential, etc (although I rather doubt I could carry these threats out if something went wrong).
Having failed even to get this social worker on the phone, because he is an idiot who thinks emailing at 7pm after he's gone home is a good way to avoid having to take responsibility, I'm now marching down to the council offices. The Girl responded to his last e-mail telling him that we would be there at 9am, that we will be wanting to speak to his manager and anyone else relevant to the case, and that I will not be leaving without an appropriate support package (if only a temporary one while cross-referrals are made). While I'm there, I'll be pointing out how utterly stupid they've been, how potentially illegal it is that they're making these decisions without ANY input from me, and how I've recently been trained by a government agency (in preparation for piloting Individual Budgets) and therefore know a LOT about what the government thinks about paternalistic care decisions that don't involve the actual service user (nothing good). And I will get the local press and advocacy services involved as necessary.
I have HAD IT with this council, and they are NOT going to screw me around anymore. Last-minute legal advice very much appreciated, although I’ll probably not read it ‘til long after I’ve been arrested or similar...