I’m confused. It really doesn’t take a whole lot to achieve this but after thinking I had finally managed an element of clarity in my mind regarding social care support for Jude, I’m now back to my initial perplexity.
I met a really lovely lady today and we had a fabulous conversation about our sons; they both attend special needs schools and receive council support so it was interesting to compare and discuss our situations.
When asked if I am reception of Direct Payments, I had to say no.
Why am I not? I have no idea.
Is it because we receive our 95 hours a year? I assume so.
These 95 hours aren’t even free so I’m not quite sure what I’ve got that’s so “supporting” from the council. Am I really as thick as I currently appear?
I have to say, I feel rather conned by my Non-Social Worker (still not spoken to anyone in the social care department recently) as I don’t think he has given us the best case scenario in terms of help. So we were initially given 40 hours a year to use in groups, one to one support and activities specifically catering for disabled children. I managed to have this increased to 95 hours a year which I thought was pretty impressive and effortless however, it has not really made one jot of difference to our overall lives.
The whole point of this support is to a) give the family a break, b) allow Joe and I the chance to take the girls out to places we can’t necessarily go with Jude and c) offer Jude broader socialisation experiences.
Has it achieved any of these? I have to say no. Yes, I realise Jude has gone out and had some great fun however, it isn’t consistent enough. He sees Lucy (the new Jade) every few weeks but only for about 3 hours at a time. It’s pointless really. We don’t have enough time to do anything meaningful and Jude isn’t able to form substantial relationships with anyone at Jubilee House because he doesn’t see them often enough!
Needless to say, I emailed the Non-Social Worker this afternoon enquiring as to whether I can apply for Direct Payments instead of what we currently have…I tried to rein in the sarcasm and think I came across as sane, retaining all the crazed, lunatic thoughts that were actually possessing my brain at that time (probably should have waited a few hours to contact him but hey, too late).
I read this article on the Carers UK website and this sentence jumped out at me
“If you, or the person you are looking after, are assessed by the local council/trust as needing support, then you or they have a right to ask for a direct payment instead of having the support arranged by the local council/trust.”
Why did he not tell ME to go with the Direct Payments option!? I read also today that you can use your direct payments in any way that helps the family as a whole so I could have help with the cleaning perhaps once a week (my dream!) You can even use Direct payments to help contribute towards things like driving lessons if it means your caring role is better achieved.
How exciting! My pursuit for finding Jude (and us) the care and support he needs continues but I feel I’m slowly closing in on the little buggers. They can’t keep me fooled forever!
The little dude in these pictures needs help…so do we, so why do I have to literally fight for it? Are we really asking for too much? It’s just not right. A x