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losing dla for my daughter - Carers UK Forum

losing dla for my daughter

All about money
My daughter is epileptic and has very regular absences, which sometimes lead to tonic clonic seizures. However she has started falling over when having some of her absences.

I sent in the renewal for dla and they rejected it, saying that she does not need any extra care compared to a normal child of her age. I asked for a mandatory reconsideration and provided extra information and they have rejected it again. The next step is to go to a tribunal.

Her consultant at hospital is not happy about how things are progressing and has referred her for another sleep deprived eeg, referred her to the neurologist and will be reviewing her medication too.

I’m just wondering if it would be worth be contacting cab for some support to appeal or if I should just fill in a brand new application with all of the new supporting evidence.

It’s such a huge worry because I’m looking at losing dla and then my carers allowance on top of that :(
DON'T do a new application, keep appealing until it's resolved, then it will all get backdated so you won't lose anything. Definitely get help from CAB or a special benefits advice service. Be very careful to stick to the deadlines for returning forms.
How old is yourdaughter? What help are you getting from Social Services and or Education?
She was 2 last week

What gets me is that she was getting middle rate care and then all of a sudden according to dla she is the same as any other child her age

I’ll get down to citizens advice tomorrow so that I can get the appeal in motion
EmmyW1984 wrote:
Sun Apr 22, 2018 9:26 pm
She was 2 last week

What gets me is that she was getting middle rate care and then all of a sudden according to dla she is the same as any other child her age

I’ll get down to citizens advice tomorrow so that I can get the appeal in motion
Emmy, if it's any help at all, I've been to several tribunals now with regard to my son and I have found the tribunal panel to be fair and open in their dealings. We've won all but one appeal and I knew that one was borderline so I didn't feel we were treated badly in that instance. It can feel nerve wracking when you're doing it all for the first time but once it's over it gives you a bit more confidence for the next time :)
As your daughter is only two years old, you are very much at the bottom of a fairly steep learning curve, and I'm sure you often think "Why me?" I certainly did. It's really tough at times being a parent of a child with additional needs. Be kind to yourself throughout all this. My son is 39, it took 8 years for his brain damaged to be diagnosed, in those 8 years I was repeatedly called a "bad mother" although my eldest was fine, and I used to run a Brownie Pack of 24 girls single handed!!
There are many mums here who have been through the process of diagnosis, benefits, etc. Feel free to ask about anything.
My closest friend used to work for DWP at a fairly high level. The first application for anything is dealt with by a fairly junior member of staff, each time you appeal it goes to someone more experienced and qualified, and given what you say, there is a very good chance you will succeed.
My top tip is to get organised as far as paperwork is concerned. Get some ring binders (often at car boot sales). Have one file for education, social services, and DWP. File EVERYTHING.
bowlingbun it’s very much a case of “why me” at the moment. And blaming myself too because I feel like it’s been passed down from me as I had the same when I was her age and eventually grew out of it (which we’re hoping she will too)

It just feels like an extra stress to be dealing with. They say that she doesn’t need any extra care compared to other children her age. So other children her age have absences, which could turn into tonic clonic seizures or they go blank and fall over (like she has just done). It’s such a ridiculous claim for them to make

I’m going to get everything together and I’m going to go into citizens advice on Monday as we’ve got appointments tomorrow. I could probably draft an appeal letter myself to be honest, and am actually half tempted to download the cerebra guidelines and spend the weekend doing it.
That's the standard line to begin with, at the most junior level of DWP staff, you are not alone in getting this initial response. Just keep plodding through the reconsideration/appeal process.
I think it was in the press this week that nearly 70% of appeals are being won, and that figure is rising each year
The appeal has been accepted and dwp are in the process of compiling their response

I phoned the tribunal centre and the area that we are assigned to could potentially take 9-10 months to even get a date for a hearing. So that’s 9-10 months without dla or carers allowance

To be honest, I feel like saying what’s the point. And then I catch my little girl in an absence or she goes blank and falls to the floor (a new type of seizure according to her consultant) and I get so scared that things won’t go our way
Hi Emmy ... the only crumb of any comfort I can offer is an external link which sets out the procedures :

https://www.citizensadvice.org.uk/benef ... -decision/

Been trying to track down any guidance on the time frame , as may be laid down ( ? ) , between rejection and an appeal ... no joy ... so far.

As for monies between the two , only avenues that are thrown up are Income Support ... with the gateway to HB and CT ... not discounting the energy providers ... and possible hardship funds run locally.