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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

sorry if this is an intrusive question - do you receive dla for your child with aspergers?

28 replies

luckylady74 · 14/10/2008 20:35

I was hoping you would share this with me because I don't and have never applied, but have heard several peole on here mention it.
I have never applied because I don't think of ds as needing more financial help to live than any other child.
Howevr, it's occured to me that if he is entitled then perhaps I could use it to fund further rdi treatment or take him to the specialist optician I've read about.
Is it a means tested benefit?
On what basis does your child receive it?

OP posts:

Candlewax · 14/10/2008 20:41

Hello! I receive DLA for my AS son - middle rate care and low mobility. The money is for you the parent/carer to use as you see fit in order to give you ALL a better quality of life. It is not means tested at all.

It meant that I could work less hours so I could be at home more.

Original poster

luckylady74 · 14/10/2008 20:57

Thanks for your reply - sorry if this sounds rude - what does mobility mean re as and dla?
My quality of life could be better!

OP posts:

Troutpout · 14/10/2008 21:01

madmouse · 14/10/2008 21:01

luckylady you may want to get some advice on your personal circumstances. it may mean that he is of an age that he would say take the bus to school, but you need to drive him because he cannot take the bus alone.

it is a long tedious and complicated form. I am fairly well trained in benefits matters but have put off the idea of applying myself for now.

contact your local citizen's advice bureau.

sarah573 · 14/10/2008 21:06

Im in the process of trying (and failing) to fill in the form for DS who has AS.

Widemouthfrog · 14/10/2008 21:07

Hi, I get middle rate care and low rate mobility too. We qualify for the mobility component because DS is impulsive, and to quote the award 'needs someone to guide or supervise him when walking on routes that are unfamiliar'.

DLA also enables us to manage while I work part time - a lifesaver as I cannot leave him in anyone elses care.

Check the NAS website before applying - they have some great advice on how to answer some of the questions, as wording can be all important.

Go for it.

tellyaddict · 14/10/2008 21:07

Hi, my son has AS and our paediatrician recommended that we applied for DLA (we did and got it). Mobility can be things like refuses to walk anywhere (our son) or may just suddenly sit down and refuse to move, or be halfway to somewhere and then decide they won't go any further. Or mobility may be impeded because of irrational fears etc, or they may just suddenly lash out and cause damage. The form is geared towards mobility issues in the traditional sense, but in terms of ASDs it's more to do with 'can but won't' which is just as difficult in many ways.

I put off claiming for a whole year, wish I hadn't, so go for it!!

SixSpotBonfire · 14/10/2008 21:48

We have never claimed for DS1 (high-functioning autism dx, similar to Aspergers) as we don't think we need financial help for him but we do get it at the middle rate for DS3 who has autism (not high-functioning). But our DS1 is very very able - I don't think he is particularly typical at all. I know other parents in RL who get DLA for their son with Aspergers.

Original poster

luckylady74 · 14/10/2008 22:06

Thank you for all your replies - I will look at the nas website.It takes me months to speak to this many parents of as kids in rl.
Life is much more complicated with ds1, but if we need financial help because of that remains to be seen. I will research and think on.

OP posts:

Aefondkiss · 14/10/2008 22:16

luckylady, my ds is 4 and still has no dx, but various professionals encouraged me to apply for dla, which, with help to fill in the form, we now get...

It isn't means tested afaik.

catweazle · 14/10/2008 22:26

My DS has ADHD rather than Aspergers, but we claim DLA for him. I quite often felt guilty for claiming as so many people are worse off but as they get older the gap between them and NT kids gets wider and wider.

You have to think about what they would be doing if they were NT. As someone else said they could be going to school on their own- that sort of thing.

dustystar · 15/10/2008 11:51

My ds (8) got a dx of AS and ADHD this august but he got DLA without a dx. He used to get middle rate care but when i renewed this year the gap between him and his peers had widened and he now gets high rate care and low rate mobility.

I felt very weird about claiming at first as I didn't feel he was disabled really but I filled in the forms honestly (using the very helpful guides from Cerebra) and he was awarded DLA and I now get carers allowance too.

The Cerebra guides helped me get my head around the idea that ds has a disability - he can physically do pretty much anything another child his age can do but he needs much more supervision, encouragement and reminding than his peers. Also as someone else mentioned I am not able to go out and get a fulltime job as childcare during the holidays would be a nightmare. All our lives are directly impacted by his SN every day and i no longer feel bad about claiming DLA for him.

belcantwait · 15/10/2008 14:03

yes i do for both boys. though i have to say it was a battle getting it (with ds1 it even went as far as appeal but i got more than i had thought i would initially)

ds1 gets middle care and lower mobility.
ds2 gets middle care (tho is being reveiwed atm)

when i first applied my hv basically forced me to do it. i wouldnt have it that he was 'disabled'. she told me to look at it for financial compensation for all the shit times!

i pay ds1's private school fees with it so he can actually go to school without meltdown and upset every day (as was happening in his orig state school)

oh, and if you get turned down, you must must must write back and contest the decision. its v stressful and even more so if it goes to appeal but its well worth it. it would be backdated to.

once you get dla you are also entiltled to carers allowance if you are a sahm or earn under approx £90 per week and also you will get more tax credits

hth

good luck with the form. its bugger

Original poster

luckylady74 · 15/10/2008 18:06

Thanks all - I have looked at the nas section on dla and I'd say ds1 would probably get it for his worse days, but some days are not so bad, but I suppose I'm always preparing for it to be a bad day in the way I go about things iyswim.
I'm going to have ago - it would be a fantastic help if I need to home ed in the years to come.
Thank you all for sharing your experiences .

OP posts:

twocutedarlings · 15/10/2008 18:12

Luckylady

Take a look at cerebras DLA guide

here

Original poster

luckylady74 · 15/10/2008 19:43

My printer died so they're going to post me a copy of the help guide - 63 pages sounds wonderfully thorough. Thank you so much!

OP posts:

Marne · 15/10/2008 20:08

we hav'nt claimed for dd1(as), i should try but not sure if we will get it, we get dla high rate for dd2 (ASD).

Candlewax · 15/10/2008 22:35

When you fill in the DLA forms, you MUST, MUST, MUST fill it in with all the bad days. By that I mean put in what it is like on a bad day for you and your son. Do not be positive in any way. This might sound horrible but it is the advice my GP gave me and she has helped many parents fill in their claim forms.

It will make you sad because it will reinforce to you how hard it can sometimes be but the good news for your son and your family will be that you will be awarded an amount based on all of this.

It took me several days to fill it in along with several glasses of wine.

coppertop · 15/10/2008 22:40

Ds2 (5) has AS and gets DLA. He has higher rate care and lower rate mobility.

The higher rate care is because of his difficulties at night. The mobility is because of he has no sense of danger, runs off, or just throws himself on to the ground with no warning because something has upset him.

Marne · 16/10/2008 11:23

I mught have to try and fill out the form online tonight. Dd1 is'nt that hard to look after, she wont walk far and gets upset easily, she has a few silly phobia's which can cause problems, do you think that is enough to claim?

dustystar · 16/10/2008 12:32

Marne use the Cerebra guides to help you fill the forms out. The notes that come with the DLA form are crap in comparison.

unfitmother · 16/10/2008 19:20

My DS is 11 with a dx of AS. I'm sure if I described all DS's bad days we might qualify but I don't want to. I can't think of him as disabled, he's just different. His AS is vety mild and it doesn't affect the family too much so we won't be applying.

Yurtgirl · 16/10/2008 20:59

I applied recently and we are now getting it.
I am shocked at jsut how much is going into my bank account - and the tax credit top up as well.

It feels weird because although ds can be challenging it is difficult to know how this money will help in any specific way - driving lessons currently springs to my mind!

mabanana · 16/10/2008 21:05

Yes, and I plan to use it for a drama group that I will have to go to with him, and speech therapy to help with social skills, and because I've had to reduce my work hours because he cannot go to afterschool clubs etc. Two tips for the form. As previous suggested, describe your WORST day, not your best, and also start every single sentence with 'because he has Asperger Syndrome he...' or 'Due to his Asperger Syndrome' etc agree it is distressing to claim this, but if it will make a difference to your child, then it's worth it.

Original poster

luckylady74 · 17/10/2008 13:52

Thanks again everyone - I don't think I've ever had as many replies to a post. I will refer to this thread as I fill it in!

OP posts:

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