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I've written a thesis for DD's DLA application

(11 Posts)
Friendlylightupbear Fri 14-Apr-17 11:37:22

Is that ok?! First one I've done. She's profoundly deaf, so the questions related to hearing, communication, keeping her safe, and development I've gone into extra pages and really elaborated. Is it better to keep things concise? I haven't sent it off yet so have time to change it. I've got a fair amount of supporting information too. Going to need a ring binder confused

F1ipFlopFrus Fri 14-Apr-17 15:33:55

How old is she and does she have any hearing devices?

Don't forget to stress how much longer things take, and stress that you wouldn't do x,y and z if she was a hearing child the same age.
e.g. You can't call her back when outside, she has to be facing you, if she wakes at nigh you have to turn a light on to communicate with her, and abstract concepts (e.g. Road safety, stranger danger, are harder to teach to a HI child. And really spell it out what she can't hear e.g. traffic/a warning shout/a dog growling etc.

Friendlylightupbear Fri 14-Apr-17 16:18:13

She's 14 months and she has BTE aids, but they don't seem to be making any difference to her hearing. She's severe-profound with ANSD, and she's under the cochlear implant assessment process. Thanks very much for the tips, I think we've covered most things that you have said, except for the road danger, as she's still only little, but I will mention is as something we will have to look to in the future as she gets more independent.

F1ipFlopFrus Fri 14-Apr-17 17:26:48

Okay, I'd leave the road safety (as in crossing the road) for now.
With BTE I would be telling them about the large number of audiolody and hospital appointments, (new molds at least every 3-4 months at her age) you have to attend, (especially with the huge number you will have both during CI assessment and after).
Make sure you tell them BTE batteries are poisonous, the number of times a day you are supposed to check them, constant supervision to ensure she doesn't pull them off and chew them, all parts being a choking risk, putting them in the dry pot a night, ensuring tubing doesn't have air bubbles or cracks, (effects what they can hear), checking molds for deterioration.
And waking at night means you can't shush her from another room, so you have to get up, and then how long it takes her to resettle.

coffeemachine Fri 14-Apr-17 19:37:34

I write about 30 pages for DD's. she has autism and severe LDs and we were rejected. I dont think anybody else even skimmed through it. We got it eventually after reconsideration and appeal but it took 8 months.

We are due to renew soon and I plan bullet points.

have you used the Cerebra guide?

Friendlylightupbear Fri 14-Apr-17 19:54:02

Thanks f1ip, that's really helpful.

* Coffee* that's awful angry did they give you any reason why you were rejected first time? I'm glad you got there in the end but bloody hell that must have been stressful flowers i haven't used the cerebra guide, I've used the national deaf children's society guide, which has been really helpful.

LouKout Fri 14-Apr-17 19:55:14

I wrote about 20 extra pages for dD and got HRC and HRM. She has very high needs though.

coffeemachine Fri 14-Apr-17 21:15:56

they said she needs help with communication (true) but it is not enough to warrant DLA (she was 3 and totally non verbal).

may be worth checking the Cerebra guide though.

I think a lot has to do with luck and who looks at your claim. If I look at my friends with ASD kids in DLA, I can tell you there is an awful lot of inconsistency. seems also that a lot if first claims are refused. if that happens, do not lose heart but persist and appeal. It is all a marathon, not a sprint.

JsOtherHalf Sat 15-Apr-17 19:42:19

Anything here help?

Friendlylightupbear Sat 15-Apr-17 21:58:28

Thank you all smile js that's brill thanks

I think it's ready to go, the only thing I'm worried about is the lack of supporting statements/evidence I feel like I have... I have a letter detailing her hearing loss and saying that she's profoundly deaf, and one supporting statement from her audiovestibular consultant, that is really strong and details all the things she will need extra help with etc, so that's great, but I've nothing else and i know a lot of people in our situation have a lot more (salt assessments, audiograms [the nature of dds hearing loss means we can't get a reliable audiogram]). I hope it'll be enough.

F1ipFlopFrus Sun 16-Apr-17 08:52:53

Don't worry at not have a salt assessment, if you have evidence that she's profound and has ansd that should be enough medical evidence. You just need to stress the extra care needs that she has that a hearing 14mo won't have.

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