I realise I haven’t written about my communications with the council a great deal recently. This is partly intentional because a) I don’t want to appear like I’m whinging again and b) I wanted to wait until I had something concrete to relay to you all. Something positive and mindful.
Well firstly, Jude started to see his lovely new Support Worker on Sunday (hi Faye!) which is just fantastic. They spent three hours together and went to Jude’s beloved garden centre to watch the doors and just generally had a lovely time getting better acquainted with each other. As you all know, the path we have ambled along (somewhat blindly at times) in order to transfer Jude’s hours with Jubilee House into Direct Payments hasn’t been entirely transparent. I don’t entirely understand what I’ve done so far and ridiculously, we still have a few things to do in order to finalise it all.
In brief, over this last week I have chosen an insurer, a payroll company, enlisted both of these via the council (I think), I have also had to adapt and print off a job spec which needs signing by us both and sending off. I’ve discussed a pension scheme with a lady at Leonard Cheshire because as an employer, I legally have to offer one (yes, for a three-four hour a fortnight job!) I’ve also filled in a complex form to receive the payments, cleared a bank account so only the Direct Payments exist within it (basically to check I’m not splashing the cash on a shopping spree every fortnight.)
To some people this may be a breeze but I have really found it complicated. I think if this was the only thing I had to focus on at present then it would be easy. However, most days I don’t have time to each lunch or even brush my hair so adding any extra stress really isn’t particularly welcome. The council offer the option of allowing them to complete the process for you and offer support in recruitment but can you imagine how long this would take them? I don’t trust them.
BUT, on the positive side we’re pretty much there now and have regular care for Jude every fortnight for three or four hours. It sounds ridiculous and in reality, that measly amount of time makes zilch difference to our lives. I know it’s respite of some sorts so I shouldn’t really complain but by the time that Sunday visit comes, I’m literally dying on my knees. And in actual fact, the times I need help with Jude revolve around stressful points in the day such as waiting for the school bus. Faye is amazing and Jude already really likes her so I think she’s going to be fantastic for him and that’s what I need to focus on. She’s primarily here for his benefit and for that I’m incredibly grateful for how lucky we have been to find someone like her. Already I feel entirely confident in her abilities to look after Jude and tolerate his potential nightmare moments.
However, another update on Jude’s social care situation is regarding my persistent request for additional support during those anxiety-inducing, tiresome moments in our week where I honestly want to curl up and disappear. I called my Case Worker a fortnight ago and then chased up again at the end of last week and was told she would ring me this week following a meeting with her manager about my request. She hasn’t called and seeing as she only works Monday to Wednesday, the chances of hearing from her for another five days are nonexistent. I have recently read a few articles on families driven utterly insane from pleading for council sponsored support for their disabled children. Do our counties wait until parents are on the brink of cracking up until they do anything proactive? It appears so but I would love to be proven wrong.
I’m going to call up tomorrow and speak to someone else in the department, perhaps the manager if she is available to see what is going on. The battle recommences…
A x
