Child been refused dla. How am I gonna cope?

[missy877]

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?

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?
I agree but the op has not indicated that she does not work due to her dd’s epilepsy.

Ok - first things first - go into the special needs boards here (or get the post moved) as you're likely to get much more in the way of supportive advice and not the usual MN bullshitty "well if you can't afford to raise a child, pony and Audi without any income you're just not parenting hard enough" crap.

Then you need to do what they call a Mandatory Reconsideration request - basically you can lay down everything in the decision they've got wrong and they HAVE to look again (I personally think they just reject everyone to see who'll go away these days). It's just a long letter really but get some advice about doing it.

Then you can go through the appeal process - I'll be honest - I gave up at that point when we were knocked back for DD2 as her needs (sensory processing issues, dyspraxia, continence, no perception of risk or danger) were minimal and I wasn't in the headspace to continue further - I know that's what they want but I was hitting a MH bad point myself and had to prioritise remaining functional for the kids at that time. It'll all get backdated if you stick to timescales and go through reconsideration. We had ours rejected because "DD2 is a well behaved child"... yeah - thanks for the praise for my parenting but I didn't think I was applying for Gold Star of the Week!

Get thee to the SN boards basically!

Did you send any evidence? If not, they often reject it off the bat. This could be letters from her GP, school, consultant etc.

I agree - download the DLA guide from the cerebra website and use that to fill things in. You need to do a mandatory consideration - they should send you a statement of reasons. Dispute every reason and ideally provide evidence to back it up.

Look up your local SENDIASS and see if they can help

Yes, many are successful either at MR or later at tribunal.

Fairylea I don’t put my disabled dc’s dla into the family pot , but then I haven’t given up work to care for them. I can’t work due to my own disability.
Dla is to pay for extra costs due to disability. If that extra cost is bringing in some money in lieu of a wage, when the only reason a parent isn’t working is due to the child’s disability then it’s right the dla goes into the household pot.
If employemt has not been sacrificed, then general family income is not an extra cost of having a disabled child.
It should then be spent on the actual costs or travel, equipment, therapy , specialist childcare, clubs that benefit the child etc etc.
Am taking generally here, I do not know the op’s circumstances.

Thanks for all the messages I truly appreciate them all..

Sorry I should have stated that I can't work due to her epilepsy (wish I could)

I will see what the CAB can do to help me with this I'm hoping they can help me..

I have appointment letters for her etc.. she also due to get some eeg's done aswell. Will her go be able to write a letter for me?

Gp be able to write a letter that meant to say sorry

If your DD is having frequent silent seizures, I'm assuming absence's (I haven't fully read thread just op reply's) that affect her daily I would say you have a good case for appeal. Get the help from CAB they will help you through or be able to point you to people who can.

My ds had his DLA stopped last month as he hasn't had a tonic clinic seizure in 9 months. He still has small absences but they don't really affect him. As I was also his carer we have lost over £500a month. It's a big hit so I feel for you.

You’ve had some good advice here, but you also need to get some benefits advice as if you were a carer due to her getting DLA your carers will now end and you’ll need to look for work. This may or may not mean a move to universal credit? Anyway, see if CAB can also discuss this with you.

Let me explain what a bad day is like with my daughter. Sounds bad but here does.

Getting her up in the mornings is a nightmare because she doesn't sleep and wakes up a lot and she also has accidents too..
getting her dressed well this is very hard, she's 8 and yes she should be able to dress herself and she does try but she struggles with it, like she's she's trying to put on her trousers her legs give way and she will fall over, and on some occasions she's done this and fallen over and then has went into a absent seizure so I need to make sure she's okay! I'm constantly worrying! I wake up during the nights to check she's ok.
At school she's doing ok, she's dyslexic and this is schools teachers words "goes into her own little world" and day dreams a lot, she can sit still for more than 2 seconds..
She has about 5 absent seizures weekly! At her last hospital appointment the consultant gave a help guide to hand into her school as she needs quite abit of support. Reading that back does she need dla? I'm so confused.

Crispahoy im sorry to hear you have also lost a hell of a lot of money too.. did you appeal?

Yeah I will discuss this with CAB and see if they can help me

I get esa for myself but isn't a lot due to my mental health. It's been pretty bad. I'm on medication but doesn't seem to be doing much so think I shall go to my gp and get myself sorted because all this stress is having bad affect on me. I'm gonna loose a lot of money.. got dla today and it's meant to run out 19th this month.. some pages online say you get another payment 4weeka after its ending to help you adjust? Iv never heard of that before.

Keep an epilepsy diary is really helpful. The epilepsy nurse may give you one or you can just use a notepad. Every time she has a seizure write down things like: time, type, awake/asleep, who witnessed it, what she was doing during/before/after, anything strange that happened e.g. missed meds, unusual foods eaten, lack of sleep. All helps. Be as detailed as possible.

There's a Facebook group called DLA for children, advice and support with many useful bits of advice on there and many stories of people who have appealed and won. Good luck!

Definitely appeal. Lots of help out there. Makes sure you send off the Mandatory Reconsideration asap though to get the ball rolling.

I will appeal dunno where it will get me tho prob nowhere. Just gutted at the loss of money each month..
loosing this money along with carers and tax credits bit too I'm honestly not gonna be able to afford to live in my current flat.. I struggle to pay the council tax and the part of the rent each week as it is and this is gonna make it worse.
Iv tried many times to downsize to a 2bedroom coz my current 3bedroom flat is too big for us. The joys of my life but honestly thanks for all the help you have given me. I'm so clueless!

You need to phone DWP and ask them to send you the statement of reasons and say you want to do a mandatory reconsideration. This will say why they have refused the claim. Make sure they send it to you in the post and don’t just verbally tell you on then home. When you get the reasons sit down and go through each reason and say why you disagree, ideally reference evidence you have. Send that back and another decision maker will review and may change the award. If it doesn’t then next step is to take it to tribunal but that does take time.

Keeping a diary of her extra care needs is useful to help clarify the extra care she needs and can be sent as evidence.

Having school support you is very important, if she needs you to help her dress do school also provide help before/after PE? Do school have a care plan in place for if she has a seizure? Does she have an EHCP or IEP? Any extra support given.

Unfortunately they’re not concerned about time spend going to hospital or doctors appointments or costs involved in getting to them.

CAB or welfare rights should be able to help with the appeal.

I'm gonna call them tomorrow and ask because today I'm extremely down about all this, honestly can't see how I'm gonna cope now

Appeal, we had to go to appeal both times and won both times. You need to be truthful but not hold back, where it's a changeable condition think about when it's bad

As far as mobility, you need to stress she cannot make journeys (age appropriate ) alone because of her epilepsy. My dd has the standard mobility because she won't make journeys she doesn't know (asd) so it's not about walking aids

Is the appeal a whole new form to fill in? So I can explain in a lot more detail about her condition

you have to appeal this decision, there's no way she should have been refused-
we had to appeal for my mums as they said that she didn't qualify, despite multiple supporting documents showing a decline in health and ability since her previous assessment.

the appeal re instated her benefits with back pay and said that she shouldn't have been refused in the fist place-

good luck, I know that this is hard, but you can get them back.

best wishes for your daughter also.

Hello everyone,

We've had a number of reports from people concerned about this thread so, as we usually do in these circs, we're putting our heads round the door with some important reminders.

Right now we can't see any evidence to indicate that the OP isn't above board – if we did, we'd remove the thread straight away. But the truth is that, sadly, we at MNHQ can't know with 100% certainty that any poster is genuine, no matter who they are or how long they have been here. As frustrating as it is, we're not able to vouch for anyone here.

So we always ask users to remember that not everyone on the internet is who they say they are – and remind folk not to give more to another poster, either financially (in cash or gifts) or emotionally (in time or care and support) than they'd be prepared to lose if things went wrong. Though, we strongly advise against parting with any cash or giving away your personal details, and if you receive a PM which makes you uneasy - report it to us and we’ll take a look.

Sorry to hijack your thread briefly there, OP – we really hope you get your appeal sorted soon.

People are concerned about my post and have reported it.. how petty can people be!

@MyDcAreMarvel what do you suggest parents with children with disabilities do? Often there isn't childcare available for these kids and what there is costs triple your standard childminder. Often that means an inability to work, particularly if a single parent like the OP.

What magic solution do you have?

OP, good luck. Lots of good suggestions on this thread.

The fact she's having frequent accidents and needs night care would indicate high rate care too, for a start.