DD2 has been turned down for DLA totally. [angry]

[misdee]

apparently 'evidence' suggests that she doesnt require any extra care compared to a 'normal' three year old.

and the fact she goes off to sleep then wakes screaming and self-harming for over 3 hours most nights and is on valloergan doesnt matter at all

appeal, appeal, appeal!

sorry you're having to go thru this, misdee.

a friend of mine whose daughter has Prader-Willi Syndrome was first awarded lower component on EVERYTHING, depsite needed SALT, which they have to pay for, and kitchen modifications - among other issues related to have PWS.

she appealed and got medium components.

have gone for a reconsideration, have 28 days to get all extra info in (am bombarding everyone now for letters of support), but SN health visitor is off til lthe 19th april.

So sorry to hear that misdee, i hope that you are going to appeal.

I think they just dont get it sometimes.

We get middle rate care and higher rate mo for dylan and yet they point blank refused chloe although she is the one that i would say is harder to deal with out of the two.

She has since had a dx of ODD so going to reapply, but have to wait another 3 months as not 6 months from last application.

Lay it on thick when you appeal and try to get the pros you most trust to give a helping hand.

Butty.xxx

Appeal.

My father, who was dying of prostate cancer was rejected first time round. We appealed and he got the medium amount.

Cynicaly I think they do this to put people off, when you appeal, you get it

I am fed up with it. because she can kick a ball she doesnt qualify for mobility, which i guessed she wouldnt anyway, but to stop her care componant. arrrrrrgh. this is a child who wanders off without a care in the world, raids the cupboards, swicthes the gas on, walks into walls, has low muscle tone, sees SALT and waiting to see CDC, screams for 3 hours, has tried to climb out of windows.

apparently it was the letter the school wrote that didnt support my evidence. even tho they have spotted issues themselves.

How annoying

This happened the first time round I applied for DLA for my ds, he was 4 years old then and even though I had sent in plenty of evidence to show how his autism affected him, they still turned it down. He even had a SN's placement at a nursery and a lengthy Clinical psychologist and SALT letter that stated how he'd never be able to function in a normal classroom setting, and guess what they still turned him down Apparently they wrote to his GP for evidence, who had only met him once about a minor issue. I wrote a really lengthy letter back and asked that they write to his paeditrician if they wanted anymore evidence. Couldn't believe it when they finally gave him high care rate. This is why I've been so bloody careful about writing this DLA form again, its all about how you word it, and support letters to back you up. So definately appeal, can you ask them to write to her paed? I bet you must be fuming with the school.

[anger

Crap crap crap

Feel for you Misdee
X

she hasnt seen the paed yet! still waiting. CDC are waiting for a report from the pre-school as well so no doubt they will f*ck that up too. Almost everyone who meets dd2 comments on her 'differentness" (not a real word probably), and her she is so 'odd'. she is in a worl of her own but a talkative one. we have just been on holiday, we saw a show (circus hilarious) which is very aimed at kids as very full on slap stick, dd2 prefered to watch the effects the lights made behind her, and spent a lot of the time rolling under the table.
even her physio report says that dd2 spends a lot of time rolling about on the floor. OT is coming out on monday anyway, so hopefully she will help.

oh yes, and she eats fine, again never mind that her diet is so restricted

misdee, she should still qualify for mobility-"wanders off on her own", thats just like my DS, he hasnt got a dx or anything but they still gave us middlerate care and low rate mobility for him, appeal for her, later on when the kids are in bed im going to dig out the notes that i wrote for his claim and see if any of them will help you.

Its no consolation but i got turned down for DLA despite having a dx of AS and not being able to go out on my own as i have panic attacks and dizzy spells and their reason for refusing?
"When jen feels a dizzy spell coming on she can counteract this by moving and turning slowly"

I mean, come on, how stupid, i was told by the benefits officer who came with me to appeal that the majority of these people are just clerks with not a lot of medical knowledge, you go get em!!!

I sympathise misdee, and can only suggest you get as many people as possible to write letters on your dd's behalf. We were turned down for dd last November - she's profoundly deaf, so it's not even as though we didn't have a diagnosis - when we know plenty of other people with deaf children who get middle rate. Needless to say, after an appeal form from us, and letters from our teacher of the deaf, the National Deaf Children's Society and our MP, we got awarded middle rate. It is infuriating and exhausting though, such a stupid procedure and pointless questions, the form takes forever to fill in, and I'm really not sure they bother to look at anything you write anyway. Hang in there, and good luck with the appeal.

appeal misdee-i sometimes think they try it on by rfusing your claim initially, a lot of people would be put off reapplying which is what they want.
ive been advised to apply for dla for my balance prob but have to admit im put off by the thought of initial refusal.

We too were turned down and went back to them. The no came so quickly there was no way they could have even read our claim form! Anyway may be old news but have a look at the Cerebra website (sorry pc non-user here can't do links!) they do a step by step guide to filling inthe forms which I thought was really useful. The charity are for children with brain injury but the dla guide would suit all types of SN. Hope it's useful? Also when we got the yes second time I included a letter from our GP (which had taken 2/3 months to get) and I think this made the difference, the ironic thing being he nevers sees DD but kindly wrote the letter based on her notes and information I had provided to him. It is crazy that info from "specialists" seeing DD frequently made no difference and yet the GP letter seemed to make all the difference. Good luck.

Agree with spacey misdee - they often just turn you down first time to see how serious you are.

If you don't get anywhere with your reconsideration you must appeal.

When dd was turned down last time they said that she didn't need care - among other things she was old enough to self-medicate Half the meds she takes aren't even licensed for children and the other half could at best put her into heart failure or at worst cardiac arrest. I truly think they live on another planet.

I know you probably feel like you have to fight for everything - and it's true - just keep at it.

she was getting high rate care for eczema and vomiting, which isnt her major probs anymore, the ASD traits have taken over her personality, as she gets older the difference is more obvious. she rubbed her face on a wooden fence last week, ooo the splinters she could have got.

apparently because i didnt inform them of a change in circumstances, the ASD traits become a reality when the pre-school picked up on it. her forms is too different from the original forms. up until last year i was told by the paed that dd2 was aperfectly normal little girl and the effectively i was worrying over nothing.

can't believe this, I think its terrible, she is so 'not normal' and TBH, more work that my DS who gets high rate care and mobility (I know the mobility is because he has CP) but the care part, she is defo. more involved that DS.

It's such a crappy system, isn't it? Good on you for asking for the decision to be reconsidered.

i on;ly need to apply her creams twice a day and once at night apparently! no i dont, i have had to pin dd2 arms down due to her scarcthing her e3cema dur for the night.ing the screaming. apparently that also doesnt count as the screaming happens before the house shuts down for the night, errrr no it doesnt , it carries on till 2am at times.

am keeping a diary for the week or so.

so am sending in copies of referral letters, contact3ed sn HV, asking my older and younger sister to write a bit up (younger sister works with children with SN inclusing ASD), wont ask the pre-school, keeping a diary, making a list of her meds (taking her bacxk to GP about her sleep issues).

Misdee like most of the replies I agree, you must appeal. My mum was refused DLA first time round. She suffered a stroke and is now disabled. I filled out the forms second time round and she was awarded the full amount. So you must appeal, Im sure someone once told me that the DLA reject loads of claims first time round. good luck