Disabled children to benefit from extra CTF cash

[MannyMoeAndJack]

here:

www.edcm.org.uk/Page.asp?originx_2272wy_3573196284114d35m_2009422321x

It'll be interesting to see how they decide which dc are eligible for the £200, rather than £100...bet they'll use higher rate DLA (which my ds doesn't qualify for because he sleeps at night - although he is still very severely disabled when he's awake )

[glitteryb6]

i read that too, but it doesnt make it clear whether its for existing CTF's or just for new ones, hopefully it'll be for all!

[saint2shoesgeorge]

I hate the way they do it on sleeping.....but seeing as even when she is sleeping dd needs chcking and care that a non disabled child doesn't it works

[MannyMoeAndJack]

I read that only dc born after September 2002 will be eligible but can't remember where I read that now...maybe more details will emerge in due course

[MannyMoeAndJack]

yes, it sucks big time! My ds often wakes in the middle of the night and we have to change him and attend to in that way but we don't have to stay with him - we just hope that he nods back off again....or at least doesn't become too loud and energetic!

[saint2shoesgeorge]

well you know what you have to do next time you fill in the forms...
I Can't say more on here but you can email me [email protected]

[MannyMoeAndJack]

hey, thanks for that - when the forms next arrive, I may seek you out....

[saint2shoesgeorge]

do

[cherrymonster]

shame ds2 doesnt have a ctf as he was born before they started the scheme

[ChopsTheDuck]

ds1 missed the threshold by 2 mnths. I think it is only for children born after sept 1st.

surely it would be higher rate for mobility or care to get the £200? Tax credits and housing consider severely disabled on the basis of higher rate mobility, which is what ds1 gets. He doesnt qualify for higher rate care neither.

[LadyFio]

mannymoeandjack, my dd sleeps through now but you fill the nightime part of the form out as part of their worst night. I think you have to say you have to strip the bed everynight and that kind of thing. Also you need to stress that your son needs 24 hour supvervision (which he does) even if you are in the next room you still have to listen out for him/check on him etc

[MannyMoeAndJack]

I know, it's really crap. TBH, the last time we completed the forms (over 1yr ago IIRC), my ds was sleeping through habitually but since before Christmas, we can expect him to wake up at night....I have thought about updating the situation with DLA but inertia sets in, ds has a good night, I forget and so on. BUT, next time, if he is still waking at night, then I may well describe a different situation..

[lourobert]

Riven- does your dd not get high rate care??

[Pixel]

I'm very peeved that they've linked this to the trust fund thing as ds was born about 18 months too early so will now miss out on both of them.

[saint2shoesgeorge]

riven I so aggree
I was so pissed of yonks ago to find a walking talking child with cp got the high rate and dd got the middle.
but I do the bad night thing now, the ones when she is awake until 2 crying, a 14 yr old nt child would not do that.

[sc13]

Speaking out of complete ignorance here, but, given how absurd it is that high rate care should depend on whether or not the child sleeps through the night (without wanting to disrespect those whose child does not), I personally would be very tempted to lie, and say, well, no, my child does not sleep through the night, if that's the only way they're going to get the care they need. I mean, it's a huge incentive to lie, unless they actually check. Do they? Am I completely devoid of moral sense?

[daisy5678]

The problem is that those who do lie make it harder for those who aren't because then they don't believe anyone about anything! So I hope that most people don't.

[Pixel]

Well ds doesn't sleep, the other night he finally nodded off sometime after 3.30am (that was the last time I peered blearily at my watch) yet he still isn't deemed entitled to high-rate. I've always been completely honest with the forms but I think next time round I will be exaggerating a bit. Surely that must be the only way anybody ever gets high-rate care? I thought you only had to demonstrate that your child needed extra care in comparison to a 'normal' child of the same age, but silly me didn't realise that most people stay up all night running round after their 8 yo!

[Phoenix4725]

we got high rate care after appeal becuase the fact i was up 5 ,6 times anight and often sillyoclock was morning ,was not enough at first as most 3 years old was like this apparently

[Mitchell81]

My DD is same as Riven, she does sleep but there are nights that I am up with her because she has been sick. We have a CCTV monitor on her so I can keep an eye on her through the night due to seizures.

She gets the higher rate, but if I said she sleeps most nights we probably wouldn't get it. Which is completely wrong

[MannyMoeAndJack]

I've always been scrupulously honest with the DLA forms - there's no need to exaggerate much when you have a 6yr ds who is old non-verbal, doubly incontinent, behaviourally challenged and so on!

However, I was advised a couple of years ago by the father of a 38yr old with ASD that, 'we found that you always have to exaggerate a little' (when I asked him if he had any tips for getting help).

The point here is that it's not the fact that parents have to exaggerate to the system but that the system makes them.