Decision Time

Our choice of adult respite for Joshua was submitted to a Panel yesterday, so we are now waiting to hear if it has been approved by the powers that be. We have had to justify our choice and explain why the alternative provisions will not be acceptable and I understand that, if it is rejected, we may have to appeal that decision. This is one of those decisions where we hope that we are trusted to know our son best and what he needs and that finances do not play a big role. You would have thought that a provision, with capacity, that is 10-15 minutes from home would be accepted, as a more viable alternative to his current provision which is over an hour’s drive away to a neighbouring local authority area, but we have had experience before where the common sense approach was not taken without an expensive, time-consuming fight.

Back in 2010, Joshua’s seizures were at their worst – during the Easter holidays, Joshua had been taken by Air Ambulance to A&E as his seizures were not responding to his rescue medication and we spent ten days in hospital trying to get things under control. After that, his special school were rightly terrified as they had no school nurse and so we began to look at alternative schools which did have the reassuring presence of a school nurse. We chose the best school to meet Joshua’s needs but were told that it was full, so we appealed. We had to take our case to a tribunal to justify our choice and the hearing was in January 2011. It was an expensive exercise as so many reports  were requested from all of the professionals who were involved with Joshua at the time and most of them attended the tribunal too.

The actual tribunal was over in five minutes, despite months of preparation. The panel had read all of the evidence in advance and so the  chairperson opened by saying that it was clear that Joshua needed to move to the nearer special school which had nursing support and she asked the Head if that was possible. The Head replied that it was only possible if he came with full funding for additional staff. The local authority agreed to provide that necessary funding and so the move was approved and we were out on the streets before we knew it, having been granted what we expected to have to fight for. It was so simple and fast, that it was hard to believe that it should have been resolved over the telephone months earlier, so that nobody ‘s time would have been wasted in this way. But within a month, Joshua moved to his current special school and we have never looked back.

I really hope that we will not have to face a similar battle for adult respite, but that common sense prevails and that we are informed of the Panel’s decision sooner rather than later. Once we have been given the go ahead, then we will start to plan Joshua’s transition and phased introduction. Already the manager of the new respite provision has fixed dates to see Joshua in his current respite and to speak to his key-worker, as well as observing him at school, so she is continuing as though she will be taking him on, even before the decision is rubber-stamped. So I have everything crossed that we hear soon that we have been granted our wish, so that we can begin to prepare Joshua to leave his beloved respite and carers and begin to make new relationships and have new experiences. It will not be easy to say goodbye, but we will be starting a new chapter in his life.

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