Did you apply for DLA before diagnosis finalised?

[peaches]

We have been seeing a clinical psychologist at CAMHS and she is fairly sure R has Asperger Syndrome but wants the expert in her team to confirm it and he also needs to go through the formal assessments. His assessments start next week. On the advice of the citizens advice bloke I requested the DLA forms, but, bad timing, they need to be in for 26th December.

 

The citizens advice are filling them in next tuesday. I photocopied the page that the doc is supposed to fill in and sent it to the clinical psychologist. She says she cant fill it in yet until the ASD/ADD team have seen him and given him a formal diagnosis. Im in a dilemma what to do. Will I get turned down if I send it in before the diagnosis is finalised? Lets be honest, its his behaviour that causes him to need extra care than the average child and thats not going to change.

 

Admittedly when I sent for the form I thought it would be longer coming than it was and also that it would have a longer date on.

 

No idea what to do now ...

 

Has anyone had a positive claim before a diagnosis was finalised?

[cmuir]

Hi

 

I applied for DLA for my son prior to him receiving a diagnosis and was successful in our application (thankfully our first application was approved). In simplistic terms (there's obviously much more to it - nothing's ever that easy!), with or without a diagnosis, if a child is harder work than a 'normal' child of the same age, needs help with dressing, personal hygiene, care, awakens during the night frequently, etc, then all of the aforementioned should entitle a parent to DLA. I photocopied a couple of reports from specialists and provided contact names of specialists/professionals involved with my son, whom I knew would support our claim. The summary page is useful - I provided a 'day in the life' type of summary and I think it helped. Also, my son awakens practically every night, will shout and demand a bath at 2.20am!!! He has absolutely no sense of danger and will run on the road in front of a bus (saying he wants to die!) and would easily go off with a stranger if approached. All of this type of information is relevant. Thankfully, it was granted.

 

I'd go ahead and apply and state that your child is currently being assessed and is suspected of having Aspergers. You could ask CAMHS if they'd mind if you put their contact details down on the form - state that you're applying for DLA and ask if they'd be prepared to confirm that your child is being assessed (needn't be anymore complicated that that). Also, head/teacher may be helpful. Be aware that you should submit the form by the date specified and that if you're claim is successful, even if you end up having to appeal, any monies paid will be backdated. A claim can also take some time. I seem to recollect that a decision must be made on a claim within something like 42 days - may take longer if they contact people listed on the form.

 

Best wishes with your application.

 

Caroline.

[dooday24]

we have been getting dla for reece for a couple of yrs now we did fight it at a tribuneral as they were only goin to give him lower rate care now gets higher rate care and low rate mobility and he has only just got the diagnosis

 

good luck and go for it

 

love donnaxxxxx

[JsMum]

 

 

 

Hi, you do not need a diagnosis for DLA, it goes by needs, not diagnosis, though it does help towards decisions been made, but if a diagnosis never comes or no one ever suspects ASD? as there is many children with behavioural/hyperactivity, social difficulties, Sensory difficulties, concentration, learning difficulties and some never got a label, but still have needs.

 

My sons first DLA claim went to tribunal and the panel where understanding and supportive and even made me promise to get my boy a statement as they felt that my boy was been desperately let down by the sen system and towards the end of the meeting J had his award, I then concentrated on his education, his DLA paid for therapies and personal support, it had really made a big difference, since then we were successful getting a statement of SEN and other specialist support and all his needs recongised.

 

Good Luck.

 

JsMum

 

[Jericho]

My younger son was awarded DLA about a year or so before his diagnosis was made official. He was awarded higher rate care.

[Lynden]

Logan was awarded DLA before his formal diagnosis also. We were lucky apparently as we got it just after he turned 2 which apparently is very young.

 

Lynne x

[vicbee]

Hi Peaches

 

I applied for DLA for my daughter who is still going through the diagnostic assessments and she was awarded it within a matter of weeks. From what I can gather they didnt even contact CAMHS. Maybe I just got the right person on the end of my form. However what i did want to say is that i originally requested a form in August and the date to have the form back in was 17 September. I had problems with appointments at my local Carers Centre who were supposed to be helping me to fill the form in so i was delayed in returning the form. I requested a further form as my other was out of date and at this stage DLA told me that they had a special help line that could help me fill in the form. What i did was write a letter when i sent in the form saying that i had requested a form back in the August but had problems getting assistance to fill it in. They actually backdated payments to the original form date which again i was very surprised about.

 

You dont need a diagnosis - as your childs needs are the same whether they are diagnosed or not.

 

good Luck

 

Vicbee

[peaches]

Thanks everyone.

 

I have been to CAMHS today and it was just lots of talking, going over the same things Ive been over before with different people. Think I will get a recording and play it back.

 

Theres always things you forget too isnt there? Especially when youre full of cold!

[Chocky]

Hi There Peaches,

 

I applied for DLA for my daughter before I has her diagnosis confirmed. To my mind it was a foregone conclusion that she had Aspergers Syndrome. We had gotten turned down before but the second time we applied I had gathered reports from the school, GP and other associated professionals, I was armed and ready. My daughters diagnosis followed 4 months after we got the diagnosis so it is possible to claim without a diagnosis..and if you get turned down then don't get disheartened, keep fighting...I waited for 3 years to get a diagnosis for my daughter (who is 16), no one would listen but I knew there was an underlying cause and eventually I got it confirmed.

[jonathan]

Hi There Peaches,

 

I applied for DLA for my daughter before I has her diagnosis confirmed. To my mind it was a foregone conclusion that she had Aspergers Syndrome. We had gotten turned down before but the second time we applied I had gathered reports from the school, GP and other associated professionals, I was armed and ready. My daughters diagnosis followed 4 months after we got the diagnosis so it is possible to claim without a diagnosis..and if you get turned down then don't get disheartened, keep fighting...I waited for 3 years to get a diagnosis for my daughter (who is 16), no one would listen but I knew there was an underlying cause and eventually I got it confirmed.

Hi I have only just spotted this link, from a reply, hopefully you will see it could you tell me where I apply for DLA and what difficulties does my son have to have to get it, he was diagnosed with aspergers 4 years ago and he is in mainstream school

thanks

[joanne1]

Hi I have only just spotted this link, from a reply, hopefully you will see it could you tell me where I apply for DLA and what difficulties does my son have to have to get it, he was diagnosed with aspergers 4 years ago and he is in mainstream school

thanks

 

 

Hi

 

I was wondering the same thing as you. We are in process of getting dx. I am almost we going to get one. But I am the same as you, wondering about what difficulties they need to have etc.

Maybe we should start a new topic about this.

 

I heard by someone who does get it that its quite hard to get and you need to really emphasise and play it hard if you get my meaning.

 

I really don't know what to say but I may start a new topic on this unless you do first.

 

I feel bad for asking though, I feel as though its as if you are after something out of it. I don't know, what to think.

 

Joanne

[chris54]

You do not have to have a diagnosis to get DLA. (But no doubt it helps).

 

You need to answer each question honestly but always give the worst case scenario.

 

I can be hard as you have to think of all the problems you and you child have.

 

I did not really expect to get it as I did not think that my sons problems were that bad but got middle rate care and lower rate mobility, I suppose it is that we have always lived with his problems and don't know any different

[westie]

 

This is the number for the benefit enquiry line. They can arange for help with filling in the form if necessary. They send form out to you within a couple of weeks, and stamp it with the date you phoned, and the date for return (6 wks later I think). If you return it by this date you will get the claim backdated to the date you requested the form.

Telephone: 0800 88 22 00

If there is a specific reason for it being late, you can tell them and maybe they will be understanding but I think this is at their discretion....

 

You can also apply online, but you do not get backdated to date you started filling it in, or so I understand.

 

 

http://www.direct.gov.uk/en/DisabledPeople...nce/DG_10011925

 

link is to directgov page on how to claim, there is a link to online claims form on this page.

 

 

You have to fill in each part as much as you can and say why your child needs more help in this area than another child of same age. When completing it think about each question, for example one parent I know put no help needed with eating, ()( they said this as their child could hold a knife and fork and put the food in their mouth). She has complex communication problems so I said well does she need help to communicate what she does/ doesnt like to eat?, or to communicate if she is full?, does she have food fads/ poor eater and need encouragement to eat? there are other things which may also apply.

 

If you have other older children (or even younger ones) you may see a vast difference between the child you are applying for and their sibling/ friends at the same age.

 

If you can connect their "symptoms" to a diagnosis then put this on the form (i.e. XXXX needs help with communicating with others because of his autism, he does XXX which is related to his diagnosis of autistic spectrum disorder). For my son with PDA I printed off some info. from the internet to explain what the condition is, because the person assessing the application may not really know about the condition in great detail and therefore may not be aware of the level of support your child needs (obviously your child is individual but it will give them a general idea)..

If you can ask a professional to fill in the part where it asks someone who knows the child to tell the aboutt their difficulties (I believe it adds more weight, and I sold it to head of sons school by pointing out that if they did this, the DLA may not bother writing again!!

 

IF you have any reports from professionals which detail help your child needs, or info from school if they are statemented I reckomend adding this as it may save time for them contacting others. Copy everything you send as well including your answers

 

Also someone I know had award put down and was told that this was because although child was statemented and helped a lot at school it was not her as parent who was providing it - if your child needs significantly more help than a child of same age (and to me a statement/ help at school is exactly saying that - consider how hard you have to fight for it!!!) then it does not matter who provides it, so dont be fobbed off by that..

 

Good luck X

 

I will post another link to a help site which has ideas for helping with DLA claims on mental health grounds (as per physical) and I have found this helpful to look at as it goes through each question one by one and suggests things you should consider for each question..

 

[Blp]

Hi I have only just spotted this link, from a reply, hopefully you will see it could you tell me where I apply for DLA and what difficulties does my son have to have to get it, he was diagnosed with aspergers 4 years ago and he is in mainstream school

thanks

 

I was advised a few years ago to try for DLA before my DS was diagnosed with Asperers. I didn't think we would be successful but we were.

 

The form was very difficult to fill in and brought out a lot of emotions for me as it hit home exactly how difficult things were for him. I had help off a friend who had previous experience in filling one in. Could your health visitor help you?

 

It's worth trying.

[smiley1590]

you have to include the worst signs of his AS and behaviour otherwise DLA will refuse to even think about applying someone for it get a doc or professional who works with you and your son and knwos you and your family well how it affects me daily to help you fill in assessment form as is long and lengthy process just to get him recognised in the system fight hard don't take no for an answer! keep fighting back strong! good luck with this fingers crossed for you alot of my friends have had their DLA turned down even though they do have AS it real bad to be honest with you my mum struggled getting mine but was persistent and went through finally with lady who assessed and diagnosed me as having AS! best thing to do my personal tip and advise!