DD1 failed her hearing check AGAIN!!!!!!

[mieow]

As some of you will know, I have 2 kids with CP and a baby of 16 months, well DD2 (aged 2.8 years) failed a special hearing check way back in April 2001, somehow passed her 8 months hearing with the HV but we have had concerns since, eventally we managed to get another appointment,which we went to today and once again she failed on the higher sounds. The doctor feels that it is down to nerve damage, like her CP and eyes, and she will proberbly need a hearing aid. I am gutted!!!!

I get ICA its a whole £42.75!!!!!!! WHOOPIEEEEEEEEDDDDOOOOOO!!!!!!!!! We do get extra on our WFTC because of the kids though.

yep we get ica as well I even earn a whole 30 pounds a weeks as well. Lou- most people I know hav initially been awarded lower rate mobility and then given higher rate on appeal. That's for autism though- it might be clearer that a child with CP has mobility problems (although who knows with these beaurocrats ) I'm happy for the dla to be reveiwed at 5 as I'm pretty sure we'll qualify for mobility then as the behaviour/ road knowledge will be more of an issue.

We've just been rejected for dla. I'm pretty p*d off, what do they want?? Dd has a mental age of half her age, cannot move from sitting, cannot feed, cannot speak or communicate her needs, is up frequently in the night, has minor seizures...... Our community nurse and Portage worker say they are "shocked" that we were rejected, they think we should be getting at least middle rate. Do they often reject valid claims or what did I do wrong??

We've just been rejected for dla. I'm pretty p*d off, what do they want?? Dd has a mental age of half her age, cannot move from sitting, cannot feed, cannot speak or communicate her needs, is up frequently in the night, has minor seizures...... Our community nurse and Portage worker say they are "shocked" that we were rejected, they think we should be getting at least middle rate. Do they often reject valid claims or what did I do wrong??

have you appealed Caroline - I know its horrendous but may be worth it , certainly sounds like you should def. be entitled. What are are you in ? We have a really good advice centre here , 'AMAZE' specifically deal with DLA and othe forms.

Definitely appeal. Get as many letters from the medical profession as you can to support your claim, and call them because they will read out to you the report that made them come to that decision. They may have misinterpreted what you wrote, or you may have missed out vital info. If your daughter has that many problems then you should be getting DLA, and possibly ICA.

did you photocopy the form? Maybe I could give you some pointers, DS and DD both get higher rate care and higher rate mobility. They both can walk (with difficulity) and are actually quite able. I told the truth but had to give the worse days as examples. If you need help, give us a shout.
MIL was turned down nearly a year ago and is still going through the appeals process.

Can I just say, I read this thread and am lost in admiration for how you all cope with all the problems you have to constantly surmount - not just with your children, of course, but with 'them'!.

I filled in the form with the help of our community nurse who says she's never had a claim rejected before. Lucky us! She's gone away to investigate with some of her contacts in the Benefits Office.

MABS - we're in Gloucestershire, will look into AMAZE. Mieow, thanks for your offer, I did try to fill in the worst days on the form, maybe they are not bad enough! I expect we will have to appeal

I think we said this before but it's really depressing isn't it having to write everything down in black and white, because only the negative is needed for information, and it can leave you despairing for the future. I have to keep reminding myself just what a pleasure ds is to be around when I am filling them in. His speech is coming on so fast at the moment it's amazing me what he can say. Today alone he has come out with three new words,popcorn, sticker and "cugoo" (which is cuddle), and he says everything so sweetly . It's hard to resist when he looks up at me, puts his arms out and says "mummy cugoo"!

It's a really nice thing you said Aloha, so thank you. Personally I don't think I cope any better than you would if you had to do it, but I will allow myself to feel a bit special for tonight because of that!

Caroline do you have a physiotherapist or gp who would be willing to help by writing a report? I was told by them that any med opinions would increase my chance of success. Luckily I have a file about 4 inches thick for ds so I can almost do a lucky dip to find what i need!

Thanks lou, we have letters from the consultant and others which could help. I'm also building up quite a file!

We have a huge file too!!!!! What I hate is the feeling of that your child sounds a lot worse than they are, as EVERYTHING has to go down, ie, DD chokes on food (docs don't know why) and she has to eat near me and we watch her eating, it seems normal to me but sound a lot worse on paper.

caroline- we also have a centre here that help with dla applications. The sw who helped me said that they have a kind of formula where if you need to provide help for x amount of minutes you get say lower rate. So where it says "how many minutes does your child need help comunicating" for example I wrote (on her advice) all the time all day. Also for the night bits you're only counted as being up if you're up for 20 minutes. So if for example you had to get up three times a night to help turn your child, put blankets back on etc etc then say it's for 20 minutes each time- as I'm sure it is - you would be awake for longer anyway. Sounds like they've messed yours up- appeal- you can get lower rate for having a dressing that needs changing once a day- so you should at least be getting middle (and sounds like higher to me)