Wednesday, 4 June 2014

Chinese water torture

I seem to be Lucy's rock.  She depends on me more than anyone else in the family.  The reason for this? I guess she feels I understand her more than others do, and manage to interact with her in a way that doesn't immediately cause her to fly off the handle.  But we all are learning still how to deal with Lucy.

Recently she has been very provocative.  She often comes into the kitchen and just stands in the corner, playing with her phone.  She will stand in the way, occasionally say something while someone else is speaking only to claim in a resigned way that no one listens to her.  If we ask her what she said she will not repeat and blame it on herself and her inability to articulate thanks to her "disability".  She will often play on this aspect, using it as a convenient excuse for all miscommunications or failure to interact with us. 

I don't think she really wants to wind us up, I think it is her own isolated world that is getting to her.  If I try to imagine her world I see a brain that cannot process properly, trying to make sense of the world and the stuff that gets thrown at it.  At the moment she is completely overwhelmed by the lack of certainty in her own future.  She just doesn't know what is going to happen post July.  Allegedly she has a place reserved for her at Pearson College, but she also knows that this is not going to happen unless we find some way of funding the £50k a year it will cost.  To do this we have to rely on the Local Authority for funding.  And the LA is delaying, and not deciding, and most probably will say "no" to Pearson, instead recommending some lower cost (in the short term) set-up that uses "local colleges".  They are all about "Local college first", which grew out of the need to cut costs.  The guise is not so much cost-cutting as "keeping the young adult within their local community".  Great.  But of course Lucy is not part of any community.  She has no contacts or friends in our community.  Why would she need to stay here, when she would be so much better cared for at Pearson?

This is our constant battle, or rather the one that we are still waiting to get engaged in.  Once we know what the LA are suggesting, we will know how much funding could be released.  Once we know that, we will be able to compare with the cost of Pearson? They will suggest something like:
  1. Access a local college.  This will be a "normal" college I think, and she will be expected to take on a non-horse related course, like cooking.  She will be "supported" by an "assistant", who will help her deal with a course and environment she cannot cope with.
  2.  The local college will be a 3 day a week thing, and will not cover the "life skills" part of her needs, so the LA will provide access to support that will allegedly teach Lucy these skills.  That will be for another 1.5 days.
  3. Maybe, put her up in supported accommodation, presumably locally.
That is the best I am guessing will come out of their discussions.  It will be a good result if we get (3), since that means the social services are prepared to acknowledge that Lucy cannot live with us, and she also cannot live on her own, so it is their responsibility to look after her.  It would be funded then.  That would be a big cost.  I have no idea how much though.  (1) and (2) would use the word "Access", and that means that Lucy is "invited" to attend, but cannot be forced to.  Lucy will reject this.  However, this too will have a cost associated with it, and in principle a funding source.

Once we have the recommendation from the LA, we can do something with it.  We can work with a lawyer to dig into what it actually means by way of funding, how it covers the needs that Lucy  has.  The LA is compelled to meet those needs.  Our objective would be to establish that the funding available for the (wrong) provision could be used better for the (right) provision at Pearson.  

So we are still waiting.  The panel is next week. 

This is nerve-rackng for me and for the rest of the family, you can imagine how it is for Lucy.  She doesn't even know how to start to handle it.  We tell her best we can where we are.  But if you have been expecting a decision in March, since December, and planning your year based on that, then how can you cope wtih not knowing and it is now June?  The world looks ugly and against you.  So you have to  take that out on the only people you can: your family.  At least you know they will not abandon you.  At least you know if they are angry at you it will be ok again.

And so we all suffer.  And we all recover. And we all do it again.  The cycle must stop, before we all go mad.