Yes it's that time again. Time to fill out the DLA form.
Nates first form was filled out in hospital during a lengthy stay, with help from welfare rights, and his dr. It focused on his risk of death (high) and uncertain future. This form has been filled out with help from portage. It still contains " at risk of death" " constant care needed to keep him alive" and other really depressing similar things. This time however we add "profoundly disabled" and " multiple complex physical and learning disablilities" oh joy.
As if that wasn't depressing enough we get lots of ticky boxes to indicate help or prompting needed to do everyday tasks. No box for "extremely sodding disabled you arse and needs everything done for him". Which, in my mind, would simplify everything.
I know these forms are supposed to cater for a huge variety and severity of disabilities but it seems to me that in reality they relate to very few. It would be far easier to bullet point issues and how they impact everyday life rather than fit into narrow descriptors. Most parts I had to elaborate on and I am left with the striking realization of how much care nate requires day and night. It's all become normal to us. I must be more adaptable than I thought.
At this point I did start to write a very basic outline of our day. But quite frankly just looking at it wore me out so I have deleted it.
Hmmm now I know why I'm so tired
Do you have to fill this in every year? I really hope they don't introduce a system like that into Ireland, it sounds like a paper-pushing nightmare :(
ReplyDeleteSome people get it for longer but with all the cuts and Nate being undiagnosed they are only giving it short term in case you know he suddenly gets better or something! Will have to fill it out again next year as he will be entitled to the mobility part.
DeleteSigh xx
I'm still recovering from filling in our DLA form for the first time. Took me two months of procrastination and then two evenings of furious, tearful typing and photocopying. Awaiting a decision... It's a bastard that form, it really is.
ReplyDeleteYou can get a life tome award for children with life limiting conditions. my 9 year old daughter finally got hers last year after a lengthy peiod in picu. you do need to request it and you also need a docter to confirm that what you state is as close to your own childs exceptional needs.
ReplyDeleteWe can't get that as he is undiagnosed so they can't say if he is life limited especially as he is improving very slowly x
DeleteThough I will be looking into it!!!!! Thank you
Delete