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Original poster

Child been refused dla. How am I gonna cope?

58 replies

missy877 · 04/06/2019 11:15

My daughter has epilepsy she's 8 and iv done her renewal and she's been refused. I'm a single mother and I'm honestly gonna struggle to live without that money as it does help.. she's taking silent seizures and she's getting 2 eeg done. Can anyone help me please?

OP posts:
Jaffacakebeast · 04/06/2019 11:47

Can’t you appeal? Take the forms to citizens advice?

CaptainJaneway62 · 04/06/2019 12:03

Get in touch with Welfare Rights and ask for help with an Appeal asap!

Sirzy · 04/06/2019 12:05

First step is to ask for a mandatory reconsideration.

The letter should identify why it hasn’t been awarded so you can work from there

MyDcAreMarvel · 04/06/2019 12:07

Have you done a MR?
In the meantime can you list the extra cost you have due to your dd’s epilepsy and posters could help find solutions.
Eg am assuming travel to hospital appointments is one extra cost- have you looked into free transport if you are on a low income.
What are the other extra costs?

NorthEndGal · 04/06/2019 12:08

Appeal for sure

MauisHouseOnMaui · 04/06/2019 12:23

Citizens Advice told me to complete the forms based on DS having his worst day and to avoid saying what he can do in order to highlight what he cannot do.

Definitely ask for a mandatory reconsideration and then book an appointment with Citizens Advice to get help with submitting an appeal.

WeaselsRising · 04/06/2019 12:31

Our renewal got rejected. I asked for Mandatory Reconsideration then went through their letter pointing out everything they had ignored on my claim. We got the award.

I think they just refuse all claims and wait to see if you will shout.

Fairylea · 04/06/2019 12:34

Definitely appeal. And fill in another form using the online cerebra dla guide (google it if you haven’t seen it already) - you can apply and appeal at the same time. If one is awarded it will cancel the other one out I believe but check me on this.

There are lots of helpful dla groups on Facebook. If you search for dla and disability living allowance on Facebook lots of them should come up, many have 30k members plus and you can contact admin to post anonymously if you wish so you can get some advice.

Good luck.

Fairylea · 04/06/2019 12:37

I will say though that it is not dependent on diagnosis as much as daily care needs. My son was given high rate care at 2.5 years old when he had no diagnosis at all. He is now 7 and we have renewed his dla during the last few years and he has kept high rate care but he now has a diagnosis of autism. He has an ehcp and attends a complex needs school. They will be looking to see how much care your child needs over and above an average child of the same age.

Original poster
missy877 · 04/06/2019 12:37

Thanks for the messages, I'm thinking about appealing it woman on phone said to write a letter and get a letter from the docs as evidence and send it to them within 28days but what's the point my daughter will just get refused again.

I'm a single mother of 2 girls, 8&10 I suffer from severe mental health and anxiety myself so life generally is a struggle. Income is clearly low but it's gonna be even worse now, I will loose half of my monthly money I would usually get and I will loose £70 weekly! That's a lot to me.. I don't know how I'm gonna cope to be honest.. can't stop crying (I know I'm stupid)

They told me over the phone that due to my daughter having mobility issues due to her epilepsy she falls over easily, her legs give way and at any time she could fall over due to her absent seizures. They said she can get a walking aid to help with that and she's no different to any other 8 year old!

Is there honestly any hope for me? I'm sick of life always going wrong for me.. why me?

Hospital trips are costly as I don't drive and could afford too either..
Taking her to the gps every so often is also costly.
Daily living is hard enough without all this on top of me. Money will be that tight now basically I will need to skip meals in order to feed my girls.

OP posts:
HotChocolateLover · 04/06/2019 12:40

I have epilepsy and got higher rate mobility only, no idea why I got nothing for care. I found the CAB website fantastic and used that. It goes through each question and tells you to say ‘on a good day I can do this and on a bad day I can do this’ You are also encouraged to say how many bad days you have and how they impact on the rest of your life. In your interview take things slowly and don’t get flustered. If you forget something then come back to it at the end and make sure that it’s recorded. Good luck.

MyDcAreMarvel · 04/06/2019 12:42

Op I think you need to look at more support for yourself ,maybe pip if your mental health issues are severe.
You should not be at a point where you relying on your child’s dla, and the resulting increase in other benefits in order to feed yourself.

Original poster
missy877 · 04/06/2019 12:42

I honestly have no idea how to appeal this decision at all.. Iv called CAB and have any appointment next Tuesday but what will they do? Will they do everything for me? I'm so depressed as it is without this x

OP posts:
Buscake · 04/06/2019 12:43

Please appeal. My 8yr old has autism and receives middle rate care and low rate mobility. Cerebra guide is super helpful, as a previous poster pointed out. Good luck Flowers

HotChocolateLover · 04/06/2019 12:43

Btw, I have absence and tonic clonic seizures so I know just how debilitating even the absence ones can be.

Sirzy · 04/06/2019 12:43

When you get the letter from them it will have the information on. Before appeal you have to do a mandatory reconsideration.

Original poster
missy877 · 04/06/2019 12:44

I didn't think I could get pip for mental health hence why I haven't bothered.
I'm a single mother and it's hard enough! Iv got no family support around me. The loss of the money will mean money will be extremely tight and I might need to skip meals to save food for my daughters.
I want a better life for my girls than this. Sorry I'm rambling on

OP posts:
itsabongthing · 04/06/2019 12:44

Appeals have a high success rate so so get specialist help with the paperwork.

However I know it’s really hard but DLA is there for the extra expenses connected to having a disability and isn’t really about boosting family general income.

Sirzy · 04/06/2019 12:45

You should not be at a point where you relying on your child’s dla, and the resulting increase in other benefits in order to feed yourself.

Which is lovely in theory but when a child’s disabilities often mean a parent can’t work where else do you suggest the money comes from?

Original poster
missy877 · 04/06/2019 12:45

So will the letter tell me how I go about doing this? Is there a chance I could win the appeal?

OP posts:
Sirzy · 04/06/2019 12:47

Yes you will get a letter which will explain why it has been refused in each area. When I did a Mandatory reconsideration I took each of these points and then in a letter explained why they where wrong. Very quickly after I sent the letter we got awarded it.

Original poster
missy877 · 04/06/2019 12:49

Is it best to get CAB to help me write the appeal letter? I have no clue myself

OP posts:
AnchorDownDeepBreath · 04/06/2019 12:50

Citizens Advice told me to complete the forms based on DS having his worst day and to avoid saying what he can do in order to highlight what he cannot do.

Be really careful about this. As part of my works community drive, we volunteer 2 days a month with a legal service who are dealing with people prosecuted for this - CAB are supposed to be changing the advice given, but it seems to have been very slow to get around.

Fairylea · 04/06/2019 12:51

Please appeal this. As the previous poster has said you will have to do a mandatory consideration first. Use the cerebra guide beforehand to make sure you are providing enough information for each section. Lots of people miss out because they write a sentence when they should be writing paragraphs. For example, saying a child has difficulty getting dressed has much more meaning if you describe having to pin them to the floor to manipulate each arm and each leg into each hole or that it takes you 30 mins to an hour to even get them to let you put pants on them because sensory issues mean they hate wearing clothes and will have a meltdown (these things may not be relevant to your situation, just examples from my own)!

To the poster above about what dla is for - dla can be used for anything to improve a child’s life. This means that it is okay for it to be used for general household income. Without it many parents wouldn’t be able to manage - many parents have given up work to be able to care for a disabled child and dla helps to bridge that income gap along with carers allowance and extra tax credits (disability element of tax credits). Every parent of a disabled child that I know puts their dla in with their general household income. We couldn’t manage without it either op. I feel for you.

(I am also disabled myself and claim pip- I have numerous issues).