ds has been awarded far more DLA than I ever hoped for and I actually feel a bit weird now

[emkana]

I'm thinking back to the form and I certainly didn't lie, just followed the advice I'd been given to think of ds at his worst times. Still got given so much!

We once got a high award for dd - using pretty much the same form that we had to go to appeal on a couple of yesr earlier. There's no rhyme or reason so enjoy it now Em because next time you might have to fight for it.

How's he doing anyway?

He's doing very well, thank you, which is one of the reasons why it feels weird!

Glad to hear he's doing well.

Are you working, because you may be able to claim Carer's Allowance too? And let the CTC people know.

I felt really weird at first getting all this money for just having DD (not as simple as that but you know what I mean). Before then I'd never claimed anything off the state apart from maternity pay. It took some getting used to but it certainly helps.

No I'm not working, was wondering whether I could claim carer's allowance! Does it make a difference whether they're at full-time school or not?

lol, when we got our award letter i went straight to the HV and told her i thought there had been some mistake. she very calmly sat me down and explained that dd2 was only doing so very well because of all the extra work we and the therapists were putting in. i still felt like a fraud, but it did calm me down a bit.

My little DS is at full time school now and I still get carers allowance for him, I gave up my career when he was about 1 as he spent more time in hospital than at home.

Agree with other posters you must deserve the rate as they are so strict, but understand what you mean as it makes you feel shocked that there needs are "that bad".

I can always cope with my DS, but strangely cant cope when I see all his problems highlighted in black and white even now.

You deserve the award and so does he.

Definitely let tax credits know, DS gets higher rate care and the same amount again in tax credits premiums! I didn't claim Carers though because it is income for tax credits purposes and deducted so it wouldn't have made any difference.

I'm glad he's doing well, I remember him from when I first joined MN

It doesn't matter if they're in full time school for Carer's. You have to get middle rate or higher care and earn less than (?)90ish pounds a week. You do have to declare Carer's in your CTC claim but I was still slightly better off claiming than not.

And madwoman is right about doing well because of the input from you.

Had a peek at his photos. He's still as handsome as ever!

Know how you feel Em!
ds was awarded HR care & mobility indefinitely and i had only written what hes like on an average day rather than the worst day!
so pleased that he got it but sad that they agreed he was bad enough on an average day

ds was only awarded 3 years the first time we applied and at medium rate till i asked them to look at it again.
i think what made the difference this time was i filled the form in myself, spent ages and put in a lot of detail (and probably too much emotion ) whereas the first time i had went to the local citizens advice and he had filled it in with the standard answers that DLA are looking for but it sounded more kind of clinical IYKWIM?

Dh thinks I'm being a pain but I am still struggling with this. Was counting on getting maybe lower rate care and have now got high rate for both mobility and care! Will they think me insane if I ask to see the consultants' report? I just find it so hard because I get paid the same now as others who have really profoundly disabled children.

hard to believe I mean

feel like a fraud

I would just be grateful, tbh. They don't give it out lightly and people often have to fight very hard to get it - I certainly did. Your ds obviously meets the criteria and I'm sure you've got better things to do than challenge a decision that's unlikely to have been made 'to be kind'/ out of sympathy, as they hate giving it out. I would suggest taking it and putting it away into a bank account or giving it to charity if it's not needed now. Remember though - it's not yours, it's your ds's, so this can be put away to ensure his future.

Em I had the same worries as you - that it felt wrong that ds got nearly as much as profoundly disabled children, and I felt like somehow it was cheating!! DH had to persuade me not to querie it! However as time has gone by I have realised that ds is entitled to that help and it does help. In fact now I wish we had asked earlier (ds was 9!!)we could have paid for things ds needed but we had to put off! It has also helped me to accept that ds has a life long disability.