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#13235 - 01/03/07 06:49 PM Disability claim
Scotty5623 Offline
Member

Registered: 12/11/06
Posts: 7
Loc: UK
Hi

Just wondering if any of you get any sort of financial help looking after your kids with Ichthyosis.

I do not for one minute expect anything but it has been suggested to me, by the actual claims department, that i should fill in a disability form for my child (age 2).
I even explained to the Woman that I don't consider it a disability but she says I should claim.

What do you all think?

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#13236 - 01/04/07 02:54 PM Re: Disability claim
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Hi there,
My daughter Nina is 1 and has EHK. On the advice of our specialist nurse and consultant, we applied for Disability Living Allowance for Nina, and having been turned down initially, got awarded the highest rate on reconsideration. We have just renewed the claim, so hopefully we will continue to get DLA.

I also get Carers' Allowance as I'm not working at the moment; I think you're eligible if you get middle or higher rate DLA.

The DLA forms are a bit of a nightmare, and like you, I don't consider Nina to have a disability. However, if that's the language I have to use to access financial support to which we are entitled, then so be it. It felt quite upsetting to fill in the forms on the basis of a worst case scenario, but that is what we were advised to do. Also, we were told to pretty much expect to be refused in the first instance, but to keep at it!

What sort of Ichthyosis does your child have?

Anyway, hope this is of some help. Oh, another thing I just thought of; there's a section on the form for a professional involved in your child's care to fill in. My advice would be to make sure someone (consultant, social worker, nurse, whoever you think best) completes that, even though it says it's optional, as we didn't first time round, and I suspect they automatically knock back any claims that haven't got professional support in that section. Just my suspicious mind!

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#13237 - 01/04/07 05:02 PM Re: Disability claim
Scotty5623 Offline
Member

Registered: 12/11/06
Posts: 7
Loc: UK
Hi
Thanks for your reply.
My son, Adam, has XLinked ichthyosis (according to the dermatologist that we see). There is no family history that we know of but that is what we are told he has.

I have the forms now and they do look a bit of a nightmare to fill in so I will take them along on my next appointment with the dermatologist for her input.
I can only try!
Thanks
Scott

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#13238 - 01/04/07 08:40 PM Re: Disability claim
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Scotty, I have a two year old son that has x linked ichthyosis and our claim for disability was accepted as was my claim for carers allowance - he gets the highest rate of disability as well. The only thing we are unable to claim is mobility allowance as nobody under 3 is awarded that.
I would suggest taking your time over the forms as if it is succesful it will be awarded from the date you were sent the forms and definately seek help if need be on filling in the forms.


Quote:
Originally posted by Scotty5623:
Hi
Thanks for your reply.
My son, Adam, has XLinked ichthyosis (according to the dermatologist that we see). There is no family history that we know of but that is what we are told he has.

I have the forms now and they do look a bit of a nightmare to fill in so I will take them along on my next appointment with the dermatologist for her input.
I can only try!
Thanks
Scott

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#13239 - 01/04/07 08:46 PM Re: Disability claim
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Quote:
Originally posted by victoria:
Scotty, I have a two year old son that has x linked ichthyosis and our claim for disability was accepted as was my claim for carers allowance - he gets the highest rate of disability as well. The only thing we are unable to claim is mobility allowance as nobody under 3 is awarded that.
I would suggest taking your time over the forms as if it is succesful it will be awarded from the date you were sent the forms and definately seek help if need be on filling in the forms.
I do as well advise you stretch the truth a little and when asked to write demonstrations of daily things down write down worst case scenario therefore knowing it will not be dismissed.



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#13240 - 01/04/07 10:35 PM Re: Disability claim
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hi Scotty i have 2 boys with x-link and my younger son just got approved. We have been fighting it since last March. We still are going through paper work cause its been more then 120 days. We did get denied the first go round but i appealed it and got approved the 2nd time. My suggestion is to send in pictures have the derm. write a letter to them explaining his condition and asking them to grant your family the disability. My derm was nice enough to do this for me. And I think with his help and me sending in pics the 2nd time helped. Cause these doctors that are reveiwing there case dont know crap about ichthyosis. So I think thats why we need our derm. to help us out. And could someone explain to me what the carers allowance is ? Have'nt never heard of that before. Thanks

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#13241 - 01/05/07 02:52 PM Re: Disability claim
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
I think carers allowance is UK only then, if you look after a person who has been awarded disability allowance and care for them more then 35 hours a week you can claim carers allowance.
Things work pretty much different in the UK then the USA, they take no notice of letters and photographs and they arent needed here. You just put all details down on one form and they then contact whoever necessary from the claim form either by letter or phone which means its best to put every specialist your child sees on the form.

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#13242 - 01/06/07 02:48 AM Re: Disability claim
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Ok thanks for replying back. I think they need that here also. Here in the US you dont have to send pictures I just did to kinda let them know what we are dealing with. Thanks for the info

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#13243 - 02/11/07 03:41 AM Re: Disability claim
Tonettepeterson Offline
Member

Registered: 02/10/07
Posts: 5
Loc: MN
Our 2 year old son has EHK as well as myself, and we were turned down once (even when he had cancer last year...) we didn't try again, but any information anyone has, would be greatly appreciated!!! Thank you!

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#13244 - 02/11/07 05:13 AM Re: Disability claim
R Offline
Member

Registered: 02/20/03
Posts: 226
I have ich v and got it on my first go.

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