We had a difficult meeting yesterday afternoon, held at school. It was the start of an application for Continuing Healthcare, which as far as Joshua is concerned, if he meets the criteria, means that Health would have to contribute to his Care Budget when he is 18, whereas social services fund his respite at the moment. So this was a meeting to explore just how demanding Joshua’s health needs are. There are 9 ‘domains’ which he has to be ranked on, for example breathing, behaviour, altered states of consciousness, cognition etc. The meeting was almost three hours long as we painstakingly worked through each domain to build up a case. So the discussion was very negative, focussing on what he cannot do and what difficulties he has, which I am not comfortable with, as my outlook is really about celebrating his small successes. But for the sake of this funding debate, we were not encouraged to celebrate anything.
In order to redress the balance, I kept throwing in Joshua’s recent developments : the fact , for example, that he now pulls on his apron on the back of the kitchen door, to indicate that he is hungry, so he uses an object of reference to communicate. It is hard to hear a list of his difficulties, when he has been making some strides over the last 6 months. Although I know why we were having the meeting, but I still felt disloyal to Joshua and felt the need to protect his reputation in that meeting. The discussion highlighted several differences between my husband and I in the way that we regard Joshua’s care and how he behaves these days. At one point I cried, that is not unusual let me say, but I had been holding it togther but when I talked about how much he loved coming home and how he reacts when he sees me, I wept.
This meting was held in school and throughout the meeting we could hear ryhthmic thuds. After a while, his teaching assistant, who was representing education in the meeting, asked us ‘Do you know who that is?’ and it became clear that Joshua was kicking the door of 6th form! This was not a tap, he was making the wall to our meeting room tremble. She went to see him and for the time being at least, he stopped kicking the door and she said that he had been grinning while he was doing it. I wonder if at some level he knew we were next door talking about him and I wish now that we had invited him in, albeit briefly, to say hello. The lady from Continuing Health was making statements and claims about Joshua, having observed him for a few minutes only in class. If he had come into the meeting he would have given us hugs and then he would have thrown some papers around and generally created chaos,and then he would need to have been removed! But at least the professionals would have been reminded of the young man that we were discussing and he might even have demonstrated some of the issues and strengths that we had raised with her and to be honest, his presence there would have been welcome relief.
In the end, they concluded that Joshua is complex and that he has a severe health need, that will be the recommendation that will be put forward to panel. To be honest, we knew that at the outset. I am not really sure why we needed to be there, the professionals could have discussed him without our input, we are not even going to see her submission before it goes to panel. The meeting left my husband angry and frustrated and it left me rather sad and unsettled. But then we got home later and he gave me a giant bear hug and we sat on the settee together, cuddling,and I instantly felt better.