My niece told me to apply for benefit for ds2 even though he isn't diagnosed yet?

[CuriousMama]

My niece's son is autistic and she gets DLA for him plus other benefits. DS2 is going through being diagnosed with aspergers and I do have problems with him. The major thing is at night, I don't get proper sleep as he has a fear that snakes are in his room

Anyway my niece told me I should apply now as even though he isn't diagnosed yet I'm still caring for him more than if he was NT. I would get evidence from his nurse, dr and the school.

I sent for the form anyway as it's worth a try? No harm in that I suppose?

As long as you have reports to back everything up, and the paed can confirm that he has issues of x,y,z even if no official dx, then it's worth a try. Remember to list all of the professionals he is seeing at the back, and choose your point of contacts wisely (ie those who recognise his issues). I think for undx kids they are more likely to seek the secondary reports from the named professionals.

Enclose school reports, copies of Ieps, any paed assessment reports you have, camhs etc.

Dd2 was awarded hr dla without an official dx, but she had a raft of specialists involved with her care and the sn hv helped us complete the application. She was only 6mos.

Ds got DLA well before diagnosis. He too has asperger's and ADHD. We had very few reports we could submit when we claimed but still got it. It's how you phrase your application that counts.

Ds still gets it now but we have no school (home educated), no NHS involvement and no therapy as we do everything ourselves. No current reports at all apart from a short note from his private consultant psychiatrist to confirm that he prescribes and monitors his medication.

Use the DLA guide on Cerebra's website - it's very, very good indeed. But don't do the answers directly on to the form. The spaces are prohibitively small. Instead type everything out in Word so you can go back and edit until you've got it just right. Then keep copies of everything for future reference.

I got it without diagnosis (lost hope we'll ever get one tbh), but again sent in what written evidence I did have - proposed statement for school, pead & salt reports etc.

One reason I would apply now is to get into the existing system before Universal credit introduction next year means new applications then might get put on hold for months due to the inevitable computer errors etc (thinking back to the fiasco of tax credits when they started here). People on medium rate care levels are gonna be stuffed under UC so you may not find it gives the long term support you are hoping for.

The form is intimidating and the process quite upsetting as it forces you to acknowledge your child's problems in a way nothing else ever does. If you need an ear as you do, post here.

One good tip I heard (may have read it on here) is to have a piece of paper with you while you work on the form, and write down lovely things about your dc to balance out all the crappy stuff that has to go on the claim. You don't include this paper with your application, it's just for you so that you keep some perspective and it doesn't drag you down too much. It really can be soul-destroying to focus so intently on the negatives.

Wine and chocolate are also essential .

Yes streakybacon - that's a lovely tip as there is nothing more soul destroying than writing down all the things your child struggles with/ can't do compared to their peers. It's hard to stay positive whilst doing a DLA form!

My DS got his DLA pre diagnosis too but we did have reports from various people who were assessing him (ed psch, ESPD, paediatricians, ASD specialist SALT, teacher, head teacher, school nurse, etc).

support is supposed to be based on need and not dx - DS1 got DLA with no dx
bochead - what will happen to those on middle rate DLA once the UC comes in?

Thanks all this is great advice.

I didn't now there was worry about middle rate pay?

I've done an aide memoire for the nurse and had to put in a lot of negative information. It is upsetting.

I'll be back on here for support thanks bochead.

DS2 is a wonderful son in so many ways that more than make up for all the lack of sleep and the worry.

I rang up and am getting the pack sent out. I could do it online but think it'll be easier to take it to a friend's/niece if I need any help?

I've heard on the grapvine carers allowance & extra tax credits will go for MRC claimants + it'll be reduced from roughly £50 a week to £20.

I'm very worried as I just can't find suitable employment/childcare & I've been looking for 6 months. As a single parent it's making me feel very vunerable.

There's a dearth of proper info about it, & the intro of universal credit as a whole, (as opposed to sloppy journo rumours which is all there has been to go on so far). The government urgently needs to start issuing some accurate information packs to famiies like ours so that we can try and plan for the changes.

I know what you mean bochead, it's so hard finding a job that suits. Well just any job where I live! I hope you find something soon?

I have the DLA booklet to fill in. Yikes!! I may be some time.......

Curiousmama you would be best doing the writing for the form in a word document. You can print it off and send it with the form, you have a saved copy, you can add to it as you think of things, and you will get more info in than you would in those stupidly small form boxes.

Have you got the cerebra help guide? I found it really useful.

bored yes I've downloaded the help guide. That's a good idea about writing it out. I may ask for a copy of the aide memoir I wrote too?

We did our application in November. TBH the person who helped me did me no favours - made every behaviour sound like a choice. Instead you need to say why they do what they do e.g. for DS1 mostly due to SPD, and then ASD. Anyhow I learnt the hard way and wrote a 3000 word reconsideration request that was turned down within approx 4 hours of receipt! Then wrote a 4000 word appeal that was submitted last week with evidence of recent dx. Result? High rate care! Now, was it down to my appeal or the dx? I'll never know.

I know someone who got high rate care without a diagnosis. Mind you, it's academic anyway, she's tearing her hair out with the poor kid and he's still on half days at school because they can't even cope one to one all the time.

I'm dubious as to whether we'll get any benefit tbh? Still worth a try though.

Sorry to hear that Jerbil but glad you have it now.

colditz that must be awful That's what makes me wonder if I should even bother as ds2's problems are more at night. He does have trouble at school too. But so many have real problems.

I applied on the vague hope that I might get low rate care. I didn't use a guide, or have any help, I just filled in the form, and ds1 was awarded high rate care and low rate mobili allowance. It is worth applying. Parents minimise their child's issues purely because they are used to them. Describe it to another parent with an average child at that age, and they'd be agog

Yes I must admit when I discuss my night times some are agog. Thanks colditz that gives me some hope. Of course we'd all much rather not have any need for the benefit but it will help us hugely. I get no CS from ex. And I don't work yet though am doing a care course and applying for places. Dp works permanent nights so it can be hard going.

It's definitely worth applying to see. I totally agree with others that you need to use word or something so you can keep a record etc.
Thanks CuriosMama. Yes we went shopping today, he's not stopped spinning in his new chair since lol

Thanks Jerbil I will do. Aww bless your ds