Hello
All im new to this and im looking for some advice .
My son has noonan syndome ,4 heart defect , learning and behavour difficilties and other health issues, he was diagnosed at 6 months old and i claimed d.l.a for him, but he has just had it taken off him.
I called to ask them to look at the dicision again and i have just recieved a letter telling me that there will be no change for his dla.

His doctors are very shocked that they have done this to jonathan and i am going to appeal now, i have gathered alot of information again from his doctors etc, has anyone else had the same problem with the dla.

I had to fight for 2 years to get jonathan statemented now that that is done,they tell me that he can not go to a special school where i think he would be better at due to him being 11 years old but working for a 5-6 year old . any advise would be great .

thank you xx

that is unusual that with doctors support they have still turned him down but i would definitely appeal and if that doesnt work then take it to tribunal as it usually gets overturned there as for some reason talking face to face they more able to weed out the fraudsters (usually) and they ask more indepth questions than are on the forms which sometimes dont give a real look at the life of the child, and they will have to backdate any decision that is made as they might say he should get a lower rate than what he was on so you would have to decide if you agree with that.

re the school, have you tried phoning up any local special schools and going in for visit? as you have a statement and a diagnosis you should be able to choose where your child goes to especially if he isnt progressing at the school he is at and he is at the age where it will be high school soon. i dont know how much things have changed now as we were told that matt could go to a mainstream nursery but i went to local special school and he started there but it was 14yrs ago.
corinne

i have just been turned down for my son because school said they think he is fine. i rang to ask for reconsideration. i said he was tube fed and the cheeky swine ont he phone asked me if i was sure as school didnt mention anything.

i was fuming.

shocking!!! janep - i would DEFFINATLY take it too appeal!! like corinne said, there is a high rate of winning at appeal, there are alot of organisations that can advise and support appeals, do you have a welfare officer? or anyone in mind that will go with you for support? gather as much info and written reports as you can to take with you, i would even go as far as quoting cases from previous claimants in similar situations/ same condition...

jennie-jack - i cannot BELIEVE someone would have the cheek to say that.....ASIF you wouldnt be sure whether your child is tube fed who do they think they are....really....

xx

Hello to all if you can get someone behind you as a b ackup and to give you all advice. Your OT, social services anyone you might think would stand up and help you all.

Get in touchn with IRWIN MITCHELL they are a solicitors but please ask them for advioce on this matter you wont be charged as far as i know as its for your child surely there is someone out there to help and advice for a specialist. good luck to all.