The worker is very nice and she's an O.T. (occupational therapist), which always helps when describing physical disability! The main problem is the paperwork with the new system. It's not so nice and things have been problematic at best. Coo's stressed, I'm stressed and there's little movement this week...Grrrrrrrr!
I'm hoping things are starting to move now but the new system doesn't seem to fully take account of complex conditions like Coo's and it's been a bit difficult to assess and agree, the carepackage of support we really need!
I feel the main problem has been the way the RAS - resourse allocation system - calculates the care budget. I mean, there's no provision for a disability like Coo's where a 'waking service' is needed to keep them safe. It offers either a sitting service or a sleep-over and our current service is neither!
Our situation means, we need someone to be awake, to take over from me on my two nights off a week!
They don't sleep or sit and watch either so offering a sitter or sleep-over service is not appropriate!
Any P.A. we have, has to monitor, record and cope with all the seizures and personal care continually throughout the night and it's not an easy job - I know!
I'm still hopeful this issue can be resolved soon and we can at least start to move on!
I'm keeping my fingers (and toes!) crossed and hoping, it won't be too long now!
Wish us luck - I've a feeling we're going to need it! lol
((( Hugs)))
Maz x
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