How and what can you claim Disability for with a DS & Aspergers

[emma16]

I've had it mentioned to me a few times about if I claim disability living allowance for my son who was initially diagnosed with Aspergers in October 2013.
It's not something I've done as I don't really know anything about it to be honest and I always thought you had to be registered disabled to claim it.
We're still waiting for his multi-disciplinary app which i've been told should be around April time, and i think I've been hesitant in claiming until this appointment. If he didn't get a full official diagnosis, i don't think i'd feel comfortable in claiming it. Does that make sense?
Some advice on how to go about it, what you can put down to claim for as such would be great.
I don't really know what would sound silly or not to put down on the form, i.e i spend a fortune on school tops as he chews the bottoms of the collars, i only work 10am-2pm 4 days a week as I couldn't really involve a childminder for him as the change would be too much & he is very attached to me & having me at home.
Some help would be appreciated if possible.

DLA is based on need and not diagnosis. You can claim the care element which is if your child needs more care and supervision than a typical child of his age. You can also claim the mobility element which can be more physical difficulities that affect mobility or cognitive difficulties e.g. no sense of danger.
I claimed for DS before he was diagnosed and it wasn't an issue. Once he got his diagnosis i rang and told them but it didn't make any difference because his needs were still the same.
This guide tells you what you can claim for and how to fill in the form. The form is soul destroying but DLA can be worth a lot of money so it's worth putting in a claim. I currently get middle rate care and lower rate mobility for DS and its about £300 per month.

www.cerebra.org.uk/English/getinformation/guides%20for%20parents/Documents/dla-guide-web.pdf

DLA is based on need not diagnosis, so you can apply without having a dx. You will need to show how much more help your DS needs compared to another child without additional needs.

Go to the cerebra website, they have a brilliant guide to help you understand what the assessors look for.

I claimed for DLA prior to getting a diagnosis, but I had lots of reports from school, SALT, comm paed and OT to support what his needs were. The dx came through around the same time as I got awarded DLA.

Good luck.

Everything I've read has made me a bit fearful of this form & like im going to be massively judged! I think I'm just a bit unclear on what to actually put about why he needs extra support, perhaps I should make a diary?
Is it based on financial things or what about care side as in the emotional support i give him, guiding him with everything, encouraging the social side with him etc?
He does take a lot more looking after mentally than my DD who doesn't have any issues with her, and she's half his age, but I feel a bit odd claiming for that kind of thing.

P.S He doesn't really have mobility disabilities except he does have an unusual gait and walks a bit funny which does cause painful legs at times but i wouldn't really call it a mobility problem. He does see danger, that's why he never leaves my side & is always wanting to stay within these 4 walls...it takes some time to get him to actually do something & generally I have to tell him several days in advance, run through what we're doing, how long we will be etc then when we do go somewhere, it can't be long as he struggles to be out of his security 4 walls so it's pretty much short & sweet!!

It's about the extra effort and support you have to put in to get him through the day.

DS1 struggles with dressing himself and washing himself properly. I have to help him if he's to not end up with green teeth, greasy hair and his clothes on back to front.
He needs reminding to wipe and to wash his hands.
He needs a lot of supervision in and out of the house, as he's very impulsive and not very attentive, particularly when stressed.
Unlike his 11 year old peers, he's not able to walk around the village alone. He'd either end up under a bus or get carried away and damage something.
He's prone to violent meltdowns, so needs help with staying on an even keel and supervision when he does blow, to keep him safe.

These are all things that need doing over and above what you would expect to need to do with a child of his age.

The cerebra guide is excellent and talks you through the things that need mentioning in each section. DS1's behavioural issues mean that he gets middle rate care and low rate mobility, but even if your DS is generally calm and not impulsive, it might be that you have to do so much extra with and for him that you still qualify for lower rate care.

And i cross posted. All that stuff is worth mentioning. If he's of an age when his peers are out playing independently and visiting houses, yet you have to prepare him and accompany him even for a short journey, that's the sort of thing that lower rate mobility covers.

It's based on everything that it takes to care for your child. I'll give you a few examples.
So for DS he is sensitive to noise and crowds so if we have to go somewhere busy then sometimes i need to take an extra person. He needs to use ear defenders in restaurants, often we have to leave as soon as he has finished eating. He often needs me to explain things that people have said to him. He needs lots of reminders to do things because he has a working memory problem. He is unable to select appropriate clothes to wear. He needs adult support to do activities that other children of his age can do by themselves. He cannot be left alone for 10 minutes while i nip to the shop like other 10 year olds can.
I have to prompt him to speak to people. He has inappropriate social skills and hugs strangers so he needs to be supervised to be kept safe. He cannot cross the road safely and needs supervision when out and about because he wanders off.
These are the types of things that DLA take into account.
You put about telling your son about things in advance - this would count. You don't normally have to do that with children.
I felt odd when i first claimed but it makes a huge difference. The money is spent on sensory aids for DS and i take him on holiday so he can experience different things.

They are really helpful posts so thank you. I suppose when you've lived with it for so long you probably lose sight really and just accept things as the norm.
My husband left because he couldn't deal with DS anymore and the effect it had on our life as a family, he was step dad to my DS. So things are a bit tricky for me and I have wondered what am I going to do about holidays with DS now as i know he needs more experiences, not less, as it takes a lot longer for them to learn how to behave etc than normal children.

I do have to attend DS when he's washing each night, not actually wash him but supervise him as he struggles to wash himself properly. He can be very sensitive to things on his fingers/hands, so I have to help him wash his hair to take the gel off that i put on on a morning for him...sounds ridiculous but he literally puts shampoo on the ends of his fingers and very gingerly rubs it in his hair but he can't do it properly so he actually washes his hair clean.

Gosh it was a bit like reading about my DS fairgame in your post! DS needs me to lay his clothes out because otherwise he would put something like shorts and a vest on in the middle of winter! Clothes is a struggle as he tends to only wear joggers due to the soft material, but when he comes home from school he literally lives in just a pair of boxer shorts and socks!!!
When we go out I do have to keep him at my side an awful lot, reassurance of things and guiding him, you come to accept it as normal i suppose. It's a lot harder now im on my own as I have a DD too who's 6. I've done it just twice since and it was so much work looking after DS but also having to give DD attention! I never realised how much easier it was as such having someone else there!

Yes it's all the things you do that you wouldn't do for a NT child. I found I had get into an entirely different mindset to fill the form in because you have to focus so much on everything they can't do which is really soul-destroying and very emotionally demanding.

The Cerebra guide as others have said is excellent. If you order the form in paper format then I think they backdate your claim to that date. I didn't do that - I completed the online form - and it took me six months to do which meant out I potentially lost out on a lot of cash. You can still complete it online if it's easier for you as you have to print it out to post it. Make copies of every report/IEP etc that your DS has and send them all off with the completed form.

I sent the forms off in early November and DS was awarded higher rate care a couple of days ago. It's £81/week which will make a huge difference to us and the kind of support I can provide for him. For example, this week he couldn't find one of his trainers at school and wore his school shoes to play sport in on the school field and absolutely wrecked them. So that's two new pairs of shoes he needs.Today I went out and bought them without feeling stressed or anxious about money for the first time ever (this has happened loads of times). Huge relief! :)

Blimey 6 months!! I think I will definately ring up & ask for the paper form and then crack on with getting it filled in etc.
That's great OddFodd about the stress it's took off your shoulders, i can imagine how much better it is.
I've been through appointments where i have had to sit and really talk about DS, or think about what he does and the care of him, and you don't realise how emotionally and mentally draining it is so i suspect this form will be the same!

if you ring them up to send you the form yiu have to complete it within 6 weeks (!) for it to be backdated. this was my plan but it took me 4 months to complete this form... so no backdating.

I wrote my reply to every question in word and cross referenced it. the boxes are just too little.

you need the cerebra guide and and . good luck!

I applied for DS when he was 5 and it was reviewed again at 8 and 11. When he was 5 he was awarded medium rate care and no mobility component. It was the same at 8, at 11 he was awarded higher rate care and low rate mobility. This is because the gap in ability has widened between DS and a NT child as he has grown, although DS is a lot more able than he was at 5. You really need to concentrate on how your child needs more help and care than his contemporaries. DS cannot judge the speed and distance of traffic, so still needs supervision out and about. You would expect a five year old and perhaps an eight year old to need to be helped cross roads safely but NT children have cracked this by the age of 11.

It is utterly exhausting. I'm sure you can do it in 6 weeks but I think it depends how old your child is and how long you've known about (and accepted, more importantly) their disability. I was in denial for quite a long time and, until I'd got through that, I couldn't possibly fill in the form.

I recommend downloading it and the cerebra guide and reading everything through now. The faster you do that, the quicker you'll get support.

Good luck :)