what to put on UK DLA form for 2 year old?

[Sofie]

Have you spoken to CAB about this?

nystagmus is a disability that will affect her for the rest of her life, and that it won't simply clear up and dissapear and that she will be affected in one way or another throughout her life

Stuff like this needs to be made clear. I tried asking on another forum about this, and the responses were 'wear stronger glasses then. Copy the bus timetable and print it in large print.' (which doesn't help when it's dark and I'm not fully awake)

Is anyone else having a hard time convincing them that being visually impaired does affect their ability to read, or is that just me?

[leanne31]

I was told that glasses didnt correct nystagmus.my daughter has really bad behavior problems,shes really agressive and im convinced it is genuinly to do with her nystagmus,when i try to explain this to her social worker she tells me its nothing to do with her eyes and this annoys me because my social worker knows nothing about nystagmus and how its going to her affect her for the rest of her life.I got a tribunal hearing on the 23rd of september and i know im going to lose because i just havn't got no supprt behind me what so ever......

[Linda]

My little boy has nystagmus and receives middle rate DLA. I have read some of the posts on this topic and am dismayed at the problems you have had applying for the much needed help. Except for being registered partially sighted and having nystagmus Dewi, my son does not have any other disabilities.

The forms are quite daunting so I contacted the National Blind Childrens Society and they sent me a step by step booklet on how to fill out the form. You don't realise how much extra help a child with nystagmus needs because as a parent you automatically know their needs. It is only when you read the NBCS litrature you come to realise. How many of us automatically move obsticles off the stairs or straighten out a mat so our children don't fall. It is small things like this that make all the difference when applying for DLA.

[Sofie]

One piece of advice I was given, was to think about what a sighted person would do and then think about what you (as a visually impaired person) would do in the same situation.

[Jim Morey]

Hello,

Last July I atended the NN Open Day in Nottingham. One of the sessions concerned the Disability Living Allowance. The speaker was fantastic (and we had a high standard of presentations throughout that day) and he de-bunked quite a few myths about the DLA. Not only was he a qualified expert (he used to be a DLA assessor), but he gave a good, no-nonsense presentation.

What struck me is the fact that DLA is independent of any other type of support or benefit. Local social and care authorities are not the ideal people to seek for advice on DLA and rarely have any input in any assessment. This is important to remember when parents may be confronted by a plethora of 'officials' passing judgements and dishing out 'advice' which may be misleading.

Not only that, but we are all used to talking up the things we CAN do, whereas applying for DLA requires listing in detail the things you shouldn't be able to do by yourself - i.e. it requires a different mind-set.

So inspired was I by the presentation that I decided to apply for DLA myself. The paper form is a nightmare, mainly because it contains umpteen sections, many of which are not relevant to visually-impaired claimants. It is estimated that the paper form takes about 4 hours to fill in on average. Nor is it V.I.-friendly.

So, I filled the fom in on-line via the DWP website. It took me just two hours. The beauty of the online form is that it automatically skips irrelevant sections. (NB The on-line version of the passport application form also makes life much easier for V.I. people for exactly the same reason.)

Within 8 weeks, I was receiving both components of the DLA (at the lowest levels). It was so easy!

If you are happy with using a computer (and most can have text and picture size adjusted to suit you), then I strongly recommend using the on-line DLA application form (ditto passport applications).

[Sofie]

I have been receiving DLA for about 9 months now. In October, I was sent a renewal pack. They have somehow decided that being partially sighted shouldn't affect my ability to read, (I've fallen asleep from not taking breaks and can't always get everything in my prefered format) and that I should be able to spot danger.

According to the person I spoke to because I don't get help reading, it means I don't need it. That is not what the form states.

[Linda]

Today is a good day the DLA have awarded my son middle rate disability allowance and lower rate mobility.

He is seven years old and has CN he has no other disabilities and is a very active healthy little boy.

The forms are a night mare to fill out and it is very difficult to acknowledge all the challenges our children face on a daily basis. I wrote as much as I could on the forms actually I think I waffled my way through but it worked. The tip is to provide as much information as possible not only on the ovious problems each child faces visually but with the frustrations and low self esteem that comes with the disability.

He will be able to claim this allowance until he is sixteen without reapplying.

[Sofie]

Good to hear Linda! I'm still having problems with mine. I know I should be on mid or high rate. (I have neck muscle problems, which make sleeping very uncomfortable)

[ruthskippy]

Hi there, my utterly gorgeous daughter has Congenital idiopathic Nystagmus and she is coming up for 2 years of age and we are based in South wales, Uk. I have a 6 year old too who is "all well" .
I have met other children of similar age and same condition but my daughter is much more "wobbly" on her feet. She is also suffering speech delay and we are still waiting for a referral on that. We have seen the podiatrist ( foot/walking doctor who says her lower leg bone has some curvature which might improve with more walking). She wakes often in the night and genuinely needs a lot of comfort to get her back to sleep ( controlled crying method simply doesn't work for her). She needs full time care and I want to claim DLA for her but I've been told that some Nystagmus little ones get it and some don't. I would really appreciate someone contacting me to give me advice and tips on what I should be putting on the forms (either via this forum or offline via rmknig@tiscali.co.uk)
Very many thanks in advance Ruth

[John Sanders]

Hi Ruth,

Thanks for your enquiry. NN can help with DLA applications. We can also put you in contact with expert advisers on applying for DLA.

John

[Sofie2]

When you do the form, you need to explain that your 2 year old with Nystagmus needs more help than the average 2 year old who doesn't have Nystagmus.

[Sofie2]

My tribunal is next week. eek!

[HollyGx]

I personally find DLA a disgrace. I have Oculacutaneous Albinism, so I have Nystagmus amuong other things like Photophobia, Myopia etc. I am 17 now (well, on August 17th I am), and I applied for DLA around about December 2008. I got rejected, however I did not appeal as I was rejected around the time of my GCSEs so I did not have time to appeal (it took a lot of time just to fill the forms out anyway!) It seems they did not really even read my application as I specifically stated how I could not cope in a new city as I could not: 1). Judge the speed of cars, 2). Read directions as they're too high up, 3). Read bus numbers or timetables etc, and they said that one of the reasons they rejected me is because I could easily cope outdoors. Also saying how I would be able to cook safely, even though with my nystagmus, I could easily cut myself or burn myself etc. One of my school friends has ME, she applied for DLA too (at a different time) and got rejected first time. I'm not sure if she appealed or just put in another application, but her second time she put in letters from many people (teachers, friends, family, doctors) explaining how her ME made it different to do stuff. I however have put off putting in a second application because I'm doing my A-Levels now, and after it taking so much time to do the first time I can't really be bothered (however, the money would be really useful).

[Sofie2]

Well, I lost my tribunal.

I have now put in a new application. What doesn't help is that I also have other conditions. They actually told me it's impossible to have one of the conditions I do have - even though it's fairly common.

In the appeal pack I was given, there was a report from their doctors which said I shouldn't have the problems with balance, depth perception, etc..

[John Sanders]

Hi Sofie,

Sorry to hear about the DLA appeal. Unfortunately, your experience confirms that of many others and shows that not all DLA panel doctors are up to date on nystagmus. Good luck with the next tribunal and if we can help in any way let me know.

John