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Anyone got DLA without a diagnosis? - advice needed please.

21 replies

amynnixmum · 05/10/2005 14:06

As some of you may be aware we have had all sorts of problems with DS in the last year but he has finally got a statement and a new school and is doing much better.

He had an appointment with the paed on monday and after I had spoken to the paed about my concerns about his behaviour the paed said that he felt that DS has AS. He said that at just 5 he is too young to be assessed and diagnosed and that we will have to wait until he is 7. However he has referred hin on to the Aspergers team.

To be honest I wasn't surprised as I realised that he displayed many AS behaviours but it was still a bit of a shock to hear the paed say it.

I just wondered whether any of you had successfully applied for DLA without a diagnosis and how you went about it. I have had to stop working because of DS difficulties and so money is too tight for us to afford to do the things with him that we would like and that he would get so much from.

Thnaks in advance

OP posts:
Socci · 05/10/2005 14:35

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Socci · 05/10/2005 14:35

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amynnixmum · 05/10/2005 14:36

Thanks Socci

Sorry to sound so ignorant but how do I apply?

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Tiggiwinkle · 05/10/2005 15:20

Call 0800 88 22 00 and request a claim pack. The claim will then be dated from the date you ring.
By the way, I am surprised your paed said your son was too young to diagnose with AS;,mine was given an AS DX this year, just after his 6th birthday. I think there are quite a few others on here who also have 5 and 6 year olds with an AS dx.

amynnixmum · 05/10/2005 15:37

Thanks Tiggiwinkle

I saw that quite a few others had got a diagnosis earlier. The paed says that part of the assessment involves a specific language test and that children are only just developing the language skills that it tests for at his age.

I think it may partly be that although he meets most of the criteria for Gillberg he does not on things like the DSMiv. E.G He doesn't really have the rigid obsessional behaviour although he can be quite rule bound.

Also when ADHD and AS were suggested this time last year i was sure that Ds didn't have either and said so to the paed. Over the last year though I have read up on both and have slowly come to realise over the last few months that a lot of his behaviour that we used to put down to his age is now standing out as different. especially when you put it all together.

OP posts:
cori · 05/10/2005 15:53

I dont have any experience of applying for DLA for children, but deal with applications regulary as part of my job. There is a really good website that can give you information on how you need to answer the questions. here Look specifically at the Mental health DLA guide for children.

Tiggiwinkle · 05/10/2005 15:53

The assessment process seems to differ quite a lot according to where you live, I think. I dont recall my DS having a specific language test at all.
I did not believe it either when AS was first mentioned as a possibility with our DS. However, the symptoms and signs of AS do seem to become much more apparent at around this age and I am in no doubt now that it is the correct DX.

Socci · 05/10/2005 15:56

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madmummyof2 · 05/10/2005 16:06

just wanted to say that my Ds has no specific diagnosis as yet and he gets the higher rate of care componant DLA.

simply call the number adn ask for a form. its a very long form but it goes into everythign from safety aspects to having to wake in the night.

i was told to imagine the owrst possible day you have had with your child and base your answers on THAT day.
you will then need a supporting statement from either his school teahcer or senco or maybe even a freind or family member but of course a proffessional is best.
it takes a long time to come through but they will backdate it to the piont when you first applied.

i wish you luck in your application

misdee · 05/10/2005 16:10

i'm still undecided about applying for mobility for my dd2. she still falls a lot, has no sense of danger, high pain threshold so if she falls and hurts herself we wont know unless we see blood, i still use a buggy/reins for her. what do u think? she has been referred for physio ans paed says delayed co-ordination but no actual diagnosis. she is 3yrs old.

amynnixmum · 05/10/2005 16:14

Thanks for all the advice

I have downloaded the guide and read through some of it. I will ring and request the form later.

Misdee - the advice to me was to apply and see what happens so that's what I'm doing. I've got no idea if we'll be successful but I've got nothing to lose.

OP posts:
misdee · 05/10/2005 16:18

i'm worried that we'd lose her care componant so may leave it untill its due for renewal, may have seen the physio by then.

KarenThirl · 05/10/2005 17:04

J doesn't have a full dx but does have a provisional, hence reports from psych and other professionals. We were awarded DLA last week, mid rate care and low rate mobility. Apply - it doesn't matter what the condition is (of even if one is identified) but the amount of additional care a child needs on top of what a NT same age peer would have.

butty · 05/10/2005 18:46

Hi, I've just sent my application in today for chloe. Even though the doc has said does not think ADHD although my self and a lot of othres disagree including her new teacher. We have to see the pead evry 3 months for assesment to get a dx for her very obvious behavioural problems.
I don't know what the outcome will be and i am not getting my hopes up due to 1 or 2 threads i have seen on here.
I have stated all the extra attention and supervision and also the violence and aggression and the fact that i get up every single night between 10pm and 2 am due to her wetting the bed.
I have got a supporting statement from social services, the behaviour support team and my home start support worker. I also have included chloes school report which states her learning difficulties and 2 letters from the first pead who def thinks she has ADHD.
I just hope that with everything i have sent that the comeback is positive!!!!
Good luck with your application amynixmum and misdee, i will be thinking of you both waiting for the post!!!!

LadyFioOfTipton · 05/10/2005 18:48

lots of people get dla without a fixed dx

we have

Caroline5 · 05/10/2005 20:56

we get dla care and mobility without a diagnosis too (dd2 has SLD). Definitely give it a go.

misdee · 05/10/2005 20:59

but i have been told basically that i am a pareanpid mother and there is nothing wrong with dd2, but yet they have referred for physio. do u really think the paed and gp will back me up? i dont think she will qualify at 3yrs old anyway.

doormat · 05/10/2005 21:10

Hi amynnixmum

My ds receives high rate dla for care and mobility, we have not had a dx but he has severe gdd.

Hope all goes well in your application.

MorticiaMerlot · 05/10/2005 21:56

We get it too - we havent got a dx.

We do however see a lot of professionals:

OT, Physio, Speech and Language, Portage, Hydro etc... So I made great play about that and generally described what our life is like on a day to day basis.

Good Luck. Give it a whirl

butty · 10/10/2005 16:47

i Got a letter from the DLA yesterday, stating that they could not make a desicion yet and so they are writing to chloes consultant and also her school for a report!!! Is this Good or Bad??? I really don't know??
Pretty quick though considering i only sent the forms last tuesday!!!

KarenThirl · 10/10/2005 18:32

It's pretty standard from what I can gather, Butty. It just means that they're collecting evidence from the professionals you've named in your claim form. It wouldn't hurt to speak to those people yourself and see if they're prepared to discuss what to write - J's psychiatrist said "OK, what do you want me to say?" and took it almost word for word. You might have to watch out with the teacher report though, as it has very questions on standard form which don't relate to conditions like ADHD/ASDs. J's teacher had a really hard time expressing the difficulties he has while still being honest, so you could have a word about what areas she should be focussing on.

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