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?

Also, OP, I'm in Sussex. If you're local DM me I know some things that could help.

I think it's a sad indication of how far this site has drifted from its original intentions that people are reporting a completely believable thread about a small child getting turned down for DLA.

Childcare for children with SN is practically non existent. My autistic child was not allowed to attend his nursery whilst Ofsted were inspecting, for example. The nursery invented a sickness bug and sent him home. He was fit as a fiddle. Sadly that was a time when i desperately needed childcare like I'd never needed it before. Ended up leaving him with a complete stranger that day

Childcare for disabled children is practically non existent, now more than ever. In our area (Norfolk) funding has been cut to the two out of school clubs that provided respite for disabled children- and that wasn’t even proper childcare, that was just mornings or afternoons to give parents a short break. You couldn’t work a job around that. My sons complex needs school provides one day of holiday club during half terms and 2 weeks of holiday club during the summer break - mainly because routine is so important to children with disabilities and it keeps them calmer with less disruption to their routine. There is no way most parents can realistically work a job around that. Not to mention my son travels 25 miles to school in a taxi with an escort so pick up / drop off times can be awkward too. I’m not justifying why I don’t work as I don’t feel I need to but lots of people really don’t understand the practicalities of life with a disabled child.

Before having my son I was a senior marketing manager and my dh and I were high earners, we were over the threshold for tax credits. After having our son - who we love to the moon and back as any loving parent would - I haven’t been able to return to work and the stress of everything has caused my dh to have a mental breakdown and he’s lost 3 jobs and now works in a job which is a fraction of his previous salary and we rely on tax credits, dla, pip for me for autoimmune conditions and asthma and carers allowance to make ends meet.

I think no one really understands the impact of having a disabled child unless you’ve experienced it. I think people can be so judgey about things but life is really bloody hard!

Unfortunately MR and appeal now basically need to be seen as part of the application process as the rejections just seem to be standard.

Don't give up. It's a long and hideous process, but it's worth it.

Please, please appeal. I work with families who have a child with complex medical needs, many of them have epilepsy and most of the families have had to appeal to get their DLA.

One of the things that helped me, i think, was keeping a 24 hour diary of literally everything I did for ds - from helping him to eat without choking to wiping his bum - and sending that off with the form. If you're anything like me you do 90% of the care and mobility aspects on autopilot because you've been doing them so long and so often, but when you actually write them down it becomes so much clearer.

Definitely keep a diary for a few days of every single thing

eg woken up at 3 am took to toilet, washed hands, got back into her bed, settled and soothed. Total time 22 minutes ( as an example)
State why things are hard ( if they are eg getting dressed do you have to dress her and if so, why ( she falls, she has poor balance etc). State how long every task takes . Most kids play up/ muck about so,sometimes getting dressed takes ages but mostly mums and dads get it done quite quickly , you have to explain in detail whynitbtajes extra time due to your DDs condition.

The advice from CAB about 'worst days' is quite standard . You shouldn't be basing your need for help on an occasional good day but on what your life is like most of the time, eg if you get up to her in the night 4 nights out of 7 because of her condition then it happens more often than not. If it's only once a week then say that. You mustn't lie or exaggerate but don't paint a rosy picture when it's hell either.

The CAB can help you,but they need the evidence you provide via a diary to help you complete the request for a MR or appeal so start collecting evidence now. It's a pain but really necessary. I do t do it any more, I just go back to old diaries and change anything no longer accurate. Good luck

OP, have you asked school to help with the DLA form? As Senco, I have been asked many times. What I make clear to the parents though is that I can only put in the form how the child is in school, so where a parent tells me that their child gets up several times in the night, I don't put that on as I don't have first hand information about that. Most times the child gets the award, but occasionally they don't and that could be in part because how the child is in school doesn't mirror how they are at home. So if your child doesn't drop in school, I wouldn't say that she does, even if you say she does at home.