DLA Help Albinism

kmje1978

I am looking for some help, my 16 month old son has albinism and we have been told he should definately qualify for DLA but unfortunately the DLA have other ideas and have refused this twice at tribunal. I am looking for anyone who can help me out with this any information no matter how small would be greatly appreciated.

Thanks Kaye

Fran

Who has told you he should "definitely qualify"?

I don't know anything about albinism, I just had to look it up. Have you taken advice from a Citizens Advice Bureau or similar welfare benefits adviser? They can help fill in the forms and represent at appeals. Getting DLA depends on the care and/or mobility needs (which I'm sure you already know!). If you get help they can make sure that you are putting relevant information in the application.

Trix

I had a friend whose daughter has partial albinism but I lost touch with her a while ago so can't quiz her. I do remember that her visual problems meant she was registered blind (although she could actually see) and so she had a classroom helper. Has your sons vision being tested by an optometrist, orthoptist or opthamologist (usually refered by HV or GP) to establish exact visual ability? My daughter has cerebral palsy so was monitored by all these three kinds of 'eye doctor' as well as seeing an optician from 9 months old. To examine the eyes they use all sorts of lenses etc and to test the vision they show white outline pictures of things like ducks in various sizes on grey backgrounds in various places then watch for if the child is looking at them so the ability to read doesn't matter. The photophobic problems that usually (or is it always?) occur mean that extra care has to be taken of the skin and eyes when people with albinism go out.

Both the visual and photophobic problems mean that there is more care been given than what you would expect to give to a child without problems of the same age, which is the DLA criteria for children.

Whoever has diagnosed and dealt with your son should have written letters to support your claim. If that has been done and it hasn't helped, your local Social Services should be about the best help, otherwise ask albinism groups (try the phone book, library, internet or ask your HV to find one) or the RNIB if the vision is affected.

Good luck.:)

Sarahsaver

If your child takes more looking after than the 'average' then you should be entitled to dla. I get it for my son who has eczema and athsma. You have to take care how you fill the forms in and write it as if you were describing your worst day. You have to outline what you would do if you hadnt got the condition or had help. I used these examples - play with paint, sand, mud, swim more often, go out in the sun (ds has been v. upset by sunlight) eat soft fruit without having to use a fork. Think of EVERY little thing. For example my sons fine motor development was delayed because he wore wet wraps (type of bandage on his hands) so often.
all the best x