Can anyone advise on DLA for children

[letsgetamoveon]

Didnt know the best place for this so putting it in here.

My son has recently been diagnosed with focal onset epilepsy. He had an mri scan at the start of the year which has shown that he has a large malformation on one side of his brain that may require brain surgery.

He has only ever had 2 seizures which have happened at night.

Since the diagnosis, I check on him every night a couple of times throughout the night and also if I hear any noises coming from his room.

People have said to me to make a claim for dla for him due to his diagnosis.

Does anyone know the criteria for dla for epilepsy and would it be worth claiming.

Dla is done on extra care needs rather than diagnosis. I have attached an image which should hopefully be helpful! In the forms make sure you explain all the extra care he needs rather than just talking about the diagnosis.

I presume you're looking at the Care component of DLA. So, from the gov.uk website https://www.gov.uk/disability-living-allowance-children/eligibility

The rate the child gets depends on the level of looking after they need, for example:

• lowest rate - help for some of the day
• middle rate - frequent help or constant supervision during the day, supervision at night or someone to help while they’re on dialysis
• highest rate - help or supervision throughout both day and night, or a medical professional has said they might have 12 months or less to live

It's the child's money so if they are entitled, claim for it. The wait time for a decision is long but if successful the award is backdated to the date I'd submission.

Thank you both for the replies, I was unsure how they assessed it. I'll have a look at the link and work my way through the form.
Thanks again

Sorry I can’t help re DLA for epilepsy but just wanted to suggest getting a bed monitor that detects seizures and/or breathing. They are worth the investment.

Thank you, I will also have a look into those.

@letsgetamoveon

https://cerebra.org.uk/download/disability-living-allowance-dla-vc/

this is a really useful guide to applying for DLA.

the form is very long and some of the questions may not be relevant.
Dont worry about that. Make good use of the additional information section at the end.
Whislt diagnosis arent necessary to claim DLA, do include any evidence you have such as consultants letters etc.
Don’t say he has only had 2 seizures, something like his condition places him at risk if seizures and so needs monitoring at all times.

How old is he? It can be more difficult to get DLA if they are under 3.

I was just going to suggest
https://cerebra.org.uk/ a resource I used for DD even though she doesn't have the kind of issue the charity supports its really helpful.

If you head over to the childcare board, there’s lots of discussion. (Unfortunately because most people have to wait 20 weeks for a decision!)

This is great, I've just had a quick look. I'll spend some time over the next week completing the form.

He's 13 and we have lots of consultants letters and scan results that can go with it.

My son was diagnosed with epilepsy at 5. He had frontal lobe, but it was developmental. He stopped having seizures in later childhood. He is also diagnosed with ehlers danlos syndrome and ADHD. I got DLA middle rate for him at 5, and we are going through PIP now as he has turned 16. Please look up the benefitsandwork website which is very helpful. I recommend writing out in bullet point each and every way your child is affected by his condition against the criteria for DLA (care and mobility). Give lots of examples too of how he is affected day and night, and why he needs help. If you are turned down, please appeal as there is a huge overturn rate when applicants do that. I had to appeal my own PIP as the decision making was wrong, and I was successful. I should add that you may qualify for a council tax reduction due to your son's needs. If there is a room in your home that meets his needs then you can apply. You should also look into carers allowance. Some local authorities have grant funding for households affected by medical needs as well, and your son's school should be making some plans too if he attends. My son's school staff had first aid training related to epilepsy when he had a fit at lunchtime. You can buy seizure detection equipment to install in his bedroom, or a charity may give you the kit. We had this and it was most helpful, along with a video camera that I kept with me while he slept (it had audio and motion detection).

I don't know much about epilepsy (tho a bit about DLA) but it might be worth bearing in mind that you may need to prove somehow (consultant's letter perhaps?) that the checks overnight are a necessary part of caring for him (necessitated by his needs) rather than something you're doing out of choice. I'd evidence that as best I could if I were you

Dla is based on care needs relative to a child of their age. Epilepsy may enable you to claim at some point but you need to demonstrate that you are required to provide far more care than is normal. Whilst it's really upsetting I'm not sure you will make the criteria currently to be honest.

What he can obtain is a free bus pass, on the grounds that if he was old enough to drive he would be forbidden, my dd has seizures and had one from 11 on those grounds.

As a pp has said, you need to demonstrate that he needs more help "than most children of his age", don't be afraid of sounding like a parrot on the form and repeating it.

eg someone needs to check on him X times during the night, most children of 13 do not require this. Then with bathing etc - He cannot be left alone in the bath/shower in case of a seizure and hurting himself, most 13 year olds would be able to bathe by themselves without supervision.