Meetings About Me Without Me

One way or another my life will change quite significantly today.  A meeting is being held without me, or any direct contributions from me, but the outcome will be huge whatever the decision.  No-one in the meeting knows me or my son, Peter, but decisions are being made about him which will affect the rest of his life.

His Local Authority Case Officer booked a slot at the meeting and will present the case.

Very few of my friends know about about this meeting and fewer still understand the impact.  The children don’t know either.  They have been told by me that the adults will do the right thing, that they understand Peter’s needs and, that although things take time, it will work out for the best.  It’s not always possible to do that, to tell them that that it will all work out OK and to hide a potential looming disaster, but this time it was.  If disaster struck then I would deal with it.  For the mean time I didn’t want to worry. 

Peter needs to attend a school that is specialist in autism, teaches other bright children his age, has strong mental health provision and a non-aversive approach to managing children with anxiety.  It has taken a long time to find this school.  In fact, his (very supportive) Case Officer and I spent more than 2 hours together searching the internet to find one.  We found two.  Having been turned down by one a couple of months earlier we were anxious that one of these two would feel able to meet his needs.  I visited one, then Peter and I visited and they looked at the reports and felt that they could meet his needs.  They offered a place.  Peter knows this of course.  He can start there after half term we were told.  That is now only two weeks away.

After initially being really scared and pretty destabilised (previous school experiences have taught him to be terrified of school) Peter has started to look forward to going.  It’s going to be a long and carefully managed transition; on his visit he couldn’t manage to even look at an empty classroom, such was his anxiety – but he chatted away to the Head Teacher and the care staff.

So today a decision will be made whether the LA funding committee will fight the allocation of funds to enable this provision.  They have previously agreed that he needs it.  In-fact, initially, when Peter was in an inpatient psychiatric unit they agreed that he needed it for 52 weeks per year.  Since that day (18 months ago) his provision has come under threat twice.  Now this, which makes 3 times.

The first time his funding was ‘pulled’ was a week after his discharge from hospital.  A specialist residential school placement was a condition of his discharge and one was lined up, so home he came with a plan to start residential school ASAP.  Anyway, the funding committee met a week after he arrived home.  Seemingly they decided he no longer needed the provision they had previously agreed to, as he was now out of hospital.

Six months after he started his residential school, a regular annual review meeting was arranged. The Case Officer that was involved at the time, a very different one from today’s, refused to talk to me about Peter’s needs.  She said it would be ‘unethical’ (yes REALLY!), then she changed the purpose of the meeting to a placement review 2 days before it took place.

We survived the first ‘attack’ with some more meetings and letters from both the hospital and local psychiatrists.  We also survived the second, the placement review, which can only mean that despite her best efforts the Case Officer couldn’t find a glint of anything to suggest that his provision should be reduced.

So here I am.  Peter’s first residential specialist school turned out to be unable to meet his mental health needs (despite having many dedicated staff), or his need for an academic peer group.  It broke down rather spectacularly (see 36 hours).  This time I have had wonderful help and support from the Case Officer, whose job it is, I am sure, to satisfy himself that there are no cheaper alternatives.  He has worked hard to get the best thing for Peter, within the responsibilities he has to protect the public purse.

I’m worried that the The LA funding committee might not be mindful of any of this.  Both my experience and the experience of others is that sometimes they simply seem to look for loop holes.  Well that is how it feels.  That they then the dig into these holes relentlessly while the child’s tiny world shrinks more and more.  While they become less stable, find it harder to trust and their childhood disappears tick tock tick tock……….

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