SLE Lupus in children, DLA claim.

Hi everyone,
Please bear with me on this,my head is still struggling to get round everything and this post may be a little drawn out so apologies in advance.
My 10 year old daughter has just been diagnosed with Lupus, SLE, the most severe type after many weeks of her being incredibly ill and spending time in hospital. I have been advised by her rheumotologist to apply for DLA and a blue badge for her as I have had to give up my work to be her carer. Thing is I have no idea where to start. I have the forms and joined this site as it was highly recommended by LupusUK and downloaded the guides. On the guide about how they view illnesses/disabilities in children Lupus isn's even listed unless my foggy hospital head has missed it.I have also tried to get an appt with CAB bit the next one they had isn't until 27th June and the forms need to be returned by then. As Lupus is incredibly rare in children I am hoping someone can point me in the right direction with this. It has been a heartbreaking couple of months and my main concern is my little girl but I know I need to try and get this sorted too. Any help or advice would be greatly appreciated xxx

Hi Pb and Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is

Welcome to Benefits and Work

I am sorry that you have had to find us in such difficult circumstances, a sick child is every parents worst nightmare!

As you say, SLE is rare in children which is probably why it is not listed by DWP. However, DLA will be awarded because of care and/or mobility needs rather than the actual diagnosis.

The basic condition for entitlement is that the claimant must have had the problems (not the diagnosis) for at least 3 months already and it must be expected to last for at least a further 6 months. Sadly, from what you have said, I suspect that will be the case for your daughter.

Claiming for children is a little different from adult claims in that children are expected to have care needs anyway. What you will need to do is show that your daughter's care needs are above those of other children her age. The DLA guide will talk you through it.

If you daughter is awarded high rate mobility DLA, she will automatically be entitled to a blue badge. However, I don't know how long DLA claims are taking at the moment or whether applying directly to your council for a discretionary badge would get it more quickly for you.

You might wish to bookmark/favourite this on your web browser now so that you can find it easily in future. This will allow you to return with further questions/comments without having to start a new topic each time. It helps us enormously when everything relating to the same claim is kept in one place - and I hope you will find it useful too