Filling in the DLA form

[Lottie86]

I'm filling in a draft of the form at the mo and it is so complicated as it seems to be set out for people with one or two things wrong with them whereas Findlay's chromosome abnormality has caused a variety of things so trying to fit everything in the boxes is a nightmare plus it is so bloomin depressing when I sit and go through it as to just how much stuff we do that I hadn't even thought about until we started looking at the form as we are so used to dealing with it now.

Does anyone have any idea how to word about the fact that Findlay has an aversion to water and as soon as even a toe is dipped he starts screaming and going mad which when he requires full body support from me in the bath as he cannot sit up makes bathing him a nightmare as I've only got 2 hands. I also wasn't sure whether to put about his seizures in the bathing section as well or not as he is just as likely to have a seizure in the bath as anywhere else.

In the bit about 'help they need in day or evening when at home or going out' bit where it says "what they do or would do if they had the help they need" would this be the place to put about the fact that Findlay would like to go out on walks to see things however as they have been unable to find a pushchair insert that will work for him (and wheelchair services won't deal with him until he is 2) he has to stay in his pram which means he can't look around as all he can see is his pram hood unless I keep stopping to take him out to show him something and then putting him back in again to push the pram a bit further.

It's the 'how many times a day' and 'how many minutes each time' bits I'm really struggling with at the moment as it can vary (and some stuff is pretty much continuous) plus I have never sat and timed everything to know how long things take

I'm really hoping that we don't get turned down for the DLA as we really need the money to help pay for equipment for him as his OT spoke to the social work OT who said they have no bath seats tiny enough for him and from what she said it sounds like they won't fund one either and the one we found that would be perfect for him that the OT agreed was what he needed is £350 which when I am not working as I am staying home to look after Findlay we just can't afford *blush*

It seems utter madness to me that they cannot go and buy or get equipment made for Findlay if he needs it as it is not his fault that the various bits of equipment he needs is all far too big.

 

[Midnight_Fairy]

I am struggling with it too. I would contact the support group for your childs disability they can normally help. The easiest way I found was to keep a daily diary for a week and attach xx

 

[angelstardust]

I left a link for you on another thread.

https://www.cerebra.org.uk/parent_support/DLA_guide


Please have a good read of this guide. It explains the full form and what they are actually asking you for, along with what you should be telling them about.

Honestly, the guide is excellent.

Hopefully, he will get atleast middle rate care (and if he gets lower, you appeal!) which would mean you can then claim carers allowance (if you work less than 16 hours, I think, check it, I don't work so didn't have to look at that bit) and you can contact the familyfund who can give you a grant for equipment (and a holiday too, your first grant you get loads).

ETA, actually, you should give the familyfund a call now, they can give discretionary grants for children not in receipt of DLA. Explain how much you need that bath support.

Your OT department stinks btw.

 

[Midnight_Fairy]

I left a link for you on another thread.

https://www.cerebra.org.uk/parent_support/DLA_guide


Please have a good read of this guide. It explains the full form and what they are actually asking you for, along with what you should be telling them about.

Honestly, the guide is excellent.

Hopefully, he will get atleast middle rate care (and if he gets lower, you appeal!) which would mean you can then claim carers allowance (if you work less than 16 hours, I think, check it, I don't work so didn't have to look at that bit) and you can contact the familyfund who can give you a grant for equipment (and a holiday too, your first grant you get loads).

ETA, actually, you should give the familyfund a call now, they can give discretionary grants for children not in receipt of DLA. Explain how much you need that bath support.

Your OT department stinks btw.

Yeap, that guide is a life saver xx

 

[AP]

I agree with angelstardust about yout OT. I asked my mate for you but she got things like that no probs. Do speak to the family fund.

 

[Lottie86]

Thank you. Have printed that guide off and it's been really helpful. All his medical people said he should get the high rate as he requires a lot of extra care both day and night and some nights we have to be awake all night with him so fingers crossed (we've been told it all comes down to who reads your form and how much money they have in the pot).


Have had a look at familyfund and we won't qualify as our household income is more than £27k a year (we've got a big mortgage though as we were first time buyers and we've only had the house 2 years so don't have huge amounts of spare cash once petrol, mortgage, food, stuff for Findlay etc goes out)

 

[AP]

You know, when it come to the family fund its odd, we got help when LO left neonatal but at that time I was still technically employed, so therefore we were earning approx £29000 but i was on smp. No-one asked how much we were earning?! we stil got £500?

 

[angelstardust]

Yeah, they can still make one-time discretionary grants, so it is worth a phone call.

Can I be nosey and ask what support it is you need?

Some SN equipment suppliers will loan you equipment (for a fee), it's just finding one who does.

Get a letter from your GP, OT, anyone else who can put in writing just how much care he needs (there are forms on the guide that they can fill in which get straight to the point). Remember and fill it out for his worst day ever.

And after it's all done, remember that he is your little baby boy and not all those words on the form. It is so depressing filling the form out, I have to build myself up to it and takes me a few weeks to get over it.