oh FFS

[TheDMshouldbeRivened]

DLA renewed and awarded until dd is 11. Why 11? Why just 5 years? She has the severest CP possible. It never ever gets better. she will never walk or sit.
But they cant risk awarding it till she's 16, oh no.
argh

tis normal. dd got it extended(I think it is when she is 16, or this year) silly as it is not like she will be cured

That is odd as DD's is indefinite. At least you don't have to think about it for 5 years though.

I was told that it's to monitor changes e.g. if they start sleeping through the night, they aren't entitled to higher mobility or hig rate care.

Still a pain, but every child's sleep patterns change as they get older (fingers crossed, hey.)

its mad that someone with full body quadraplegia, incontinent, blind and non-verbal would not get full rate care if they slept the night!

It's one of those random rules though, isn't it. I guess it's to do with the fact that someone who needs looking after all day and through the night takes a greater toll than someone who sleeps for 12 hours or whatever, giving the carer a bit of a break. I suppose they're looking at it through the amount of time that's taken up, not how needy the disability is, iyswim.

ds's is indefinite too, first time CAB filled in the form and we only got middle rate for 2 years until i asked them to look at it again.
this time i did it myself in my own words and went into a lot of detail and it came back high rate indefinately

i also ignored all those online guides to filling in the forms as they just tell everyone to write the same thing over and over, used to date a Doc who looked at DLA forms and he said you could tell when it was copied direct off the internet

It seems to be a random decision IMO. I know someone whose child got life DLA and other children - like my own - who only get 3 or 5 years max. They all have very similar needs. Maybe it depends on the person looking at the form, what mood they are in, what they had for breakfast etc., etc., like most quite a lot of decisions

I think they just won't award higher rate indefinitely until they're older. Ds1 finally had his higher rate care and mobility awarded without an end date this year - he's 10. It's been obvious for years there is no miracle around the corner.

I bet at 11 they award it till 16. Just so I can fill in the forms twice more.
I did wonder if its because she is life limited and isn't actually expected to live past 10. They don't want to accidently pay too much.

ds was awarded high rate indefinately from his 5th birthday so think donkeyderby is right and it just depends who looks at the form TBH

mad isn't it. Well, just so's you don't miss out, when dd turns 11 you can come and fill it in with me

sorry off topic

riven you can get a free trial of boardmaker here

They are totally bonkers, my ds is incontinent, doesnt eat, sleep etc, etc, etc and ive been turned down 3 times because 'his needs are not above and beyond'

Im not sure what planet they live on.

I'll mark that in my diary Riv!

haven't forgotten about the cosytoes glittery. Just waiting for the new to arrive. Its coming down from Scotland so you could drop it in

Ironically its not that far from ds's old nursery but they dont have a shop they only sell over the internet otherwise i'd have been up there!
hopefully you'll get it before she's 11!

new one arrived. Will hopefully post you old one tomorrow

Oooh Fab! just in time for the sh*tey weather!

well, its another 16 weeks before the car actually arrives....

dearlord! 16wks???? are they mining the ore for the metal personally???

it always takes that long although I did have a paddy with the last car cos I was car free so it was only 9 weeks.
It has to be ordered then adapted.
I wannit NOW

Brook miller told me 12 weeks and it came in less than half that time, had to scrape all the money together fast!

eeeek. I haven't even thought about where we will find the 2K. Just added 10K to the mortgage for the adaptations (and that was a battle!)