Respite Update

Those of you regular readers will recall that we are currently looking for an alternative, or additional, respite provider as our existing one is struggling to recruit sufficient staff. I had an email yesterday from my social worker to tell me to liaise directly with the potential provider to agree what we are looking for, to see if they can meet our needs. So I sent an email in the morning, explaining that I wanted to start slowly with transition visits so that he could get to know his 1 to 1 carer. I suggested that we might be ready in September to start that process and that I would be looking for just one night a month initially, with a view to increasing it if things worked out.

But I was totally thrown by her response to my email :

Firstly, she told me that there could be no gradual transition visits, that they were not ‘registered for that’. They expect Joshua to visit once with us to look around and then to go straight to an overnight stay on his own, that is not acceptable. Every other respite provider he has stayed with, he has gone for a short visit on his own first, then stayed a bit longer and eaten there a week later. Finally he has stayed there all day but I have collected him just before bedtime and eventually he has tried a single night there before building up to his full weekend. That has worked brilliantly in the past and I am not clear why it cannot be repeated in this case. I would hate to think how he would feel about being suddenly left with strangers in a new environment; I have said before that Joshua is adaptable, but that is because we always prepare and pace him carefully. It does not mean that he would handle their approach. I would predict that he would go to bed when he arrived and that he would stay there until morning.

Secondly, she wrote that Joshua would not be allocated a single 1-to-1 carer, she could not guarantee that it would always be the same member of staff but could be one of 70 they employ! So how does Joshua get to know his 1-to-1? How do we gain confidence in that person? How does he build a relationship with his 1-to-1 if they change every time? How does that member of staff get to know him and to recognise his seizure patterns? I appreciate that there may need to be a couple of members of staff who might be allocated to him, to have cover for sickness, holidays and shift patterns. But this approach implies that residents are not expected to form a bond with their carers, well that is not how my son operates. He has a main carer at daycare, although he is familiar with the other staff in his bubble, so when she went away for a week’s holiday, he was not thrown into turmoil.

Thirdly, she proposed that he stays overnight, after daycare, once a week. Joshua is exhausted after his day at daycare, being on the go all the time. He comes home and immediately takes his boots off and after his medication, he goes to bed. He needs quiet and familiarity and he rests before he is ready to eat his evening meal, there is no way that he would like going from daycare to another institution ,rather than his family home. What she suggested makes it feel like they are really only offering a bed for the night, a rest for us, and for him to receive close medical supervision throughout his overnight stay. I was concerned when I visited that there was no ‘fun’ there, but I see now that they were never trying to offer him fun, they were offering him a bed for the night surrounded by nurses. For respite to work for us, I have to know that Joshua will be having fun too, that it is his break from us, as well as ours from him. This really is not what we are looking for and I am disappointed that we got virtually to the 11th hour, have already invested a lot of time in visits and meetings, only to find out that it is not right for us. But at least we found it our now, before our request has gone to Panel for the funding to be approved and not once he started there.

Finally they book respite on a quarterly basis, so families make their requests in 3 month blocks at a time, so that it can be booked into their diary. While I am used to having a planned schedule, I get the impression that there might be limited flexibility with this provider. At the moment I am able to plan ahead and as we have lots of things booked in up until the end of August, I could cope with such advanced booking right now. But there are many times when committing to up to 3 months ahead would freak me out and prove difficult. It is unusual to me that the parents request the dates that they want, rather than what I am used to, which is respite telling me when he will be coming in. Both previous respite places had him on a rota so his weekend came up every fourth week. It did mean at the Children’s respite, that if one allocated weekend did not suit us as we had family plans, then he missed it and there would be an 8 week gap. So in a way this suggested system might be more flexible, as it puts the parents in the drivers seat.

I have already emailed our social worker to voice my concerns, so we will wait to see what happens next. We are looking for respite , after two and a half years with none, but we are not so desperate that we will accept anything that is offered to us. It still has to be right for us all.

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