Dla forms - describing a childs extra needs with epilepsy

charm1

Hi,
Does anyone have any experience of filling out dla forms for a child with epilepsy??
my son has had the condition for 5 years, we have only been told he would be eligible for dla. I got the forms to fill in, what a nightmare they are!!!!. im unsure of answers to put for example when it asks if the child can walk or have problems walking, do you answer as if they were having a seizure. as this would make him unable to walk. Most of the time his able to walk but as he has no pre warnings of seizures he has to be supervised all the time. Any advice on these forms would be great...

thanks
:A

[Deleted User]

It might be worth looking at the NSE website(national society epilepsy)they have a great (free)forum where you would get first class advice on this.It should be reasonably easy to get DLA for a child(or adult)that has frequent seizures without warnings,bear in mind as well the side effects of medication that you should mention.
My GP once suggested that i good form of words to use were"the threat and reallity of seizures without warning".You should also mention how he is after a seizure(e.g.very disoriented/tired etc),and the fact as you say that he needs constant supervision both indoors and outside.
If I can be of more help post again or PM me.
good luck

charm1

thanks, i will have a look at the site and see what info i can get. I am quite confident in writing about the side effects of his meds, on 900 mg epillim chrono per day, quite tired all the time suffers from confusion, delayed response headaches e.t.c e.t.c
like i said earlier its just answering the questions to what he can do i.e walking, bathing, e.t.c yes he can do these, he can not do these whilst having a seizure he suffers from prolonged absences can be over 1 hour and has to go to hospital when this happens, I dont what to put as most of the time he can do most things,
will look at the site u suggested..
thanks again

boo304

Hi charm1,

My child has absence seizures and in the dla form I put about having to be with them outdoors as if an absence came on he might carry on walking and not be aware of traffic. I also put about having to sit in the bathroom with him due to risk of risk of an absence.

I think what you need to put is that he can walk, bath etc (if he can), but that he needs extra supervision, whether it's by you/family or the school. For example, when they have day trips/swimming etc at school you will have to let the school know about his condition? I would mention that in the pages towards the end where it says 'what your child would do if they didn't need extra help' or something like that if I remember correctly!

Also definitely put in about the confusion/tiredness. I also put in about after he had had an absence, because my son tended to be a bit confused for a few minutes and needed to be reminded of what he was doing before. Answer the questions as if you were describing what happens on his worst day, ie not a day when he has no seizures!

Hope you get on ok with it. If not, visit your local CAB and they will help.

boo

charm1

hi Boo,
thats what i thought i should do put about side effects, so when it asks if your child is able to walk did you put yes then in the box below explain that he cant if a seizure was to begin or put no and then explain in box below that he can. does your child suffer any other conditions??

munchings-n-crunchings

Hello charm1,

I think woodbine is one of the best to advise you on this.
I would like to refer you to The Decision Makers' Guide though.
Here are a list of terms, that are useful to understand, and use them when explaining how you need to monitor your child, these different terms grade the 'supervision' of your child, so are useful to include.
http://www.benefitsnow.co.uk/dmakers/default.asp

Here is also the information that the DWP use to provide information on different conditions. If you read the links under epilepsy, it will give you more ideas as to what you need to address
http://research.dwp.gov.uk/medical/med_conditions/major/epilepsy/

Regards
Munchie

charm1

thanks,
im gonna make a start tonight on the forms so i will def have a look at these...

thanks again.

skipsmum

hi,
DS has seizures (non-epileptic convulsions, which means they dont know what causes them!)
Hes 15 now, and has always had full rate care dla and more recently dropped to low rate mobility.
I have always put on his forms that although he can bath himself and walk himself, an adult has to be within arms distance in case he fits. Other 15 year olds could be reasonably expected to bath without their parent in the room, and can walk to school alone or with friends, not with their mother. Its important to make the distinction between what he can do and what he could be xpected to do without the disability.
It can be heartbreaking to fill in the forms for your child, its just a reminder of how much impact disability has when you spend most of your time striving to minimise its impact.
Good luck, its worth doing,and opens up other doors when you get it. ((((hugs))))

charm1

Hi,
Thanks for your advice and kind words. its nice to know their are others that understand how heartbreaking it is, yes you are 100% right i have only been reading through the questions and it does really hit home how different life is for our sons and us. caring for Charlies needs day to day has become second nature to me and its part of every day life. it is certainly hard work physically and emotionally for all of us and not to mention the extra costs... We have a 13 year old daughter and she is great with helping him out when he wants her to that is!!!!LOL i sometimes feel guilty of the limited quality time we spend with her.Maybe thats me just being silly, she is happy enough and dosent moan too much!!!!!!! no more than any other 13 year old girl. I wonder why your sons rate was dropped from high to low, was you expecting this? did he receive both elements care & mobility????

:beer:

charm1

munchings-n-crunchings wrote: »

Hello charm1,

I think woodbine is one of the best to advise you on this.
I would like to refer you to The Decision Makers' Guide though.
Here are a list of terms, that are useful to understand, and use them when explaining how you need to monitor your child, these different terms grade the 'supervision' of your child, so are useful to include.
http://www.benefitsnow.co.uk/dmakers/default.asp

Here is also the information that the DWP use to provide information on different conditions. If you read the links under epilepsy, it will give you more ideas as to what you need to address
http://research.dwp.gov.uk/medical/med_conditions/major/epilepsy/

Regards
Munchie

Hi,

I have been checking out these sites...
They are a great help. thank you so much!!!!!
I just need to fill the forms in now! I seem to keep putting it off I dont know why though???
thanks again
x x x x

[Deleted User]

charm1 wrote: »

thanks,
im gonna make a start tonight on the forms so i will def have a look at these...

thanks again.

Just an idea if you havent started already?write the answers to each part of the form on a piece of paper before filling in the actual form,I usually advise that to do a thorough job of a DLA application should take at least 3 to 4 hours,the more info you give the less likelyhood of having to appeal a bad decision,might also be an idea to send a letter from his GP with the application and maybe a letter from school.