Applying for DLA

[Mum of 3]

I've looked through the poll on DLA, and I've seen that lots of people have applied, and I really am not sure if we should or not...So I thought I'd ask for your opinion

We have no dx, but we are undergoing assessment, looking at AS, I think, in the end.

On the mobility front, G is hit and miss when it comes to walking outside. He can walk along loverly, holding hands, and only straying from the path for his regular trips round the back of the bus shelter, along the wall, etc...BUT, when he's having an 'off' day, he pulls at my hand (luckily, so far, not falling into the paths of any passing waggons, but more by luck than judgement), or stops and refuses to budge at all, or else runs on ahead without stopping for the roads he has to cross, just running over them! He has also, on some occassions recently, run off and hid, usually only round the corner, but he won't come when called, and has to be 'found'. In car parks, it's all the same to him whether he runs to the shop down the road part or the path...he'll still run, and he won't come back when he's called, so I end up runnning after him all the time!

Last W/end, on a trip to the seaside, he stopped point blank when we crossed a busy road at a crossing, leaving him one side of the road and us the other, then panicked so he didn't hear us saying stay there...he wasn't even looking at us! I had to run in front of the cars to get back to him... he also ran straight down to the sea without telling us or even looking back-the tide was well out, and he was gone for ages (luckily, very few others were mad enough to be braving the North Yorks coast last W/end, so I could watch him!).

So, I think we probably qualify for this, but then again he is only 5 (and a half...), I just don't know what a NT 5.5 YO would be like! Thing is, I don't think he'll get better...if anything, as he gets older, he's getting less wary and trying to get away from us more, and listening less!

 

As for the care part, he is able to dress himself and feed himself, etc, but getting him to do it is almost impossible! (hence the huge row with my mum yesterday-she thinks he 'needs' things done for him, I'm having the daily battles to get him to do it himself!). He doesn't wash himself, or clean his teeth, brush his (long!) hair, etc without help (but, again, he's only 5.5!). He obviously has some problems with learning to do things, as he can't yet use the DVD/TV/video/CD player--even the volume control eludes him, yet the 20month old baby can change channels (too much tv for baba number 3? ). This is not just laziness, as it really frustrates him, yet no amount of teaching has helped. He just stands in front of the appliance wringing his hands and moaning!

Also, we live in quite a big house over 4 floors. He won't go onto another floor of the house without an adult-he's scared! He regularly breaks things, or does things which will break things if we let him! He has huge tantrums, which affect everyone in the house, due to the tiniest things (like a toy he can't find).

When we go out, he will either talk to anyone and everyone (if he's happy), or talk to no-one. Whichever, I regularly get people giving me a quizzical look after he speaks to them, so I have to 'translate' because his speech pattern and pronunciation is odd. He often needs me to tell him what to say to his 'friends' if we see them in the street...

At night, he wets the bed if we don't lift him every night, and sometimes if we do! I've shown him how to pull off the draw sheet and bed mat to get back into bed, but he still comes in to me every time...(but then, he is only 5.5....)

I just can't decide which things are immaturity due to age, and which are due to difficulties related to AS/whatever. And, do they qualify for DLA, or is that for children who are much worse, ie. who CAN'T do things, rather than WON'T!

[Tally]

Well, if you don't apply, you can be 100% certain that you will not be awarded DLA.

 

It certainly sounds like your son has significant mobility issues and care needs above and beyond what a non-disabled 5-yr-old would need.

 

You shouldn't need a diagnosis, as it is based on need rather than diagnosis - likewise, a diagnosis does not automatically make you entitled.

 

It's worth getting advice on filling in the form, to make sure you get all the right information in the right places. Then take photocopies to help you fill in your next application.

[aliwoo]

sounds alot like my little boy, i applied before we got his diagnosis and we now get middle rate DLA and lower rate mobility. the thing about applying for DLA is that you really do have to write everything negative....write the bad points and dont mention the good (they are not interested in the good). so basically imagine the worst day ever in that given scenerio...and put those things down. he may be able to walk nicely but on a bad day as you say he will run off and hide or run into the road. i was also told not to use words like occassionally....as it gives the impression that it doesn't happen enough to warrant help. it is quite soul destroying filling a DLA form out, what with only focusing on the negatives....i think the reason it takes so long to fill is cos you just cant bring yourself to fill more than a page a day lol. but it is so worth it if it gets accepted...and if yours doesn't, appeal as i say my little boys did/does the same as yours when i applied (he was 5.5 back then too) and i get it.

 

another tip is to photocopy your completed form! so you know what you have written when it comes to renewing the claim in a couple of years time

 

CAB will actually help you fill the form if needed. also some good websites with tips and pointers too (they are on my OH's computer somewhere lol..but we found them by googling). one we found goes through the whole form and tells you what kinda thing they want to know in layman terms (which was something we needed)

 

goodluck...DEFINATELY apply

[call me jaded]

They assess the amount of time spent 'looking after' someone and that includes all the prompting and reminders.

[dana]

Hi,

CEREBRA has a very good and detailed information,step by step,if and how to fill in the form. I am in the process of doing it myself and it helped me a lot. Go to their website and look for it. I am sorry I am not 'technical' so I don't know how to conect you directly. Good luck.

 

danaxxx

[jomica]

Mum of 3 - when you apply for DLA you must focus on the worst days and describe how often those days occur. DLA forms are (very sadly) no place to be accentuating the positive.

[Special_talent123]

what you explain on dla has to be very accurate and also they have to check with doctor if what you stated on the form is correct.

[Mum of 3]

Thanks, everyone...I knew I'd get good advice from you all

Of course, I.H.U.A, I understand, the need to be accurate and honest when filling out the forms, to be otherwise would not be right , but I also recognise the need to put down all the difficulties that we face, and not to 'gloss over' anything, since it's these difficulties that the money is there to help with.

I'll be visiting the cerebra website next, to see what they have to say. Will let you know how I get on...

Edited May 10, 2009 by Mum of 3

[sonj186]

Hi i was told by my paediatrician that when i was filling out my forms to fill it out as the worst case, which i did we get middle rate care and no mobility. it took me a while to get my head round getting money for looking after my own child! but it really helps! and cam benefits from it ie supplements etc that we might otherwise struggle to pay for and the q bot at leggoland as cam just wouldnt be able to wait in the q it does make a difference. best of luck

 

sonj

 

 

[aliwoo]

Hi i was told by my paediatrician that when i was filling out my forms to fill it out as the worst case, which i did we get middle rate care and no mobility. it took me a while to get my head round getting money for looking after my own child! but it really helps! and cam benefits from it ie supplements etc that we might otherwise struggle to pay for and the q bot at leggoland as cam just wouldnt be able to wait in the q it does make a difference. best of luck

 

sonj

 

took me a while to get used to the idea of the extra money too...especially when you can get carer's allowance and tax credit bonusus too...it's alot of money really. but i have to say it has helped and we no loonger struggle with elctric bills and water bills (endless washing) and the cost of replaceing things or simply just having days out to get kyle to burn some energy. fuel for the car (we actually got the car with the backpayment lol...needed one)...even silly little things like shoes and clothes. we are able to afford a decent pair of fitted shoes now...whereas he used to have to make do with a pair of shoes from the supermarket for £5 before lol.

 

i'd advise people to NOT feel bad about applying for this benefit (and linked benefits) it is there to make your life easier, and it does

 

[Tally]

I felt a bit of a fraud at first applying for DLA for myself because I was able to hold down a full time job. It felt wrong to say I was disabled when I could work full time. But in reality I was only coping in the sense that I had not actually died yet. Most people who have full time jobs also have the energy left over to prepare meals and have some kind of social life. Some even raise children.

 

I have found that DLA and the disability element of working tax credit have enabled me to cut down my hours at work with no loss of income, which means I am now able to manage a lot better. My other option was to sell my car. A car is a luxury, but I find it difficult to use public transport or even call a taxi, so it would have been a big loss if I'd had to do that.

 

I felt I was eligible for the mobility component, but I was awarded both care and mobility at the lower rates, which came as a surprise, but has also helped me to acknowledge that I need support in these areas. I've been paying income tax since the age of 18, and my tax goes toward supporting people like me with DLA payments. In fact, I still pay more in tax than I receive in benefits.

[Special_talent123]

With DLA you dont lose that benefit whilst u work

[Mum of 3]

It does seem strange to apply for money just for looking after your child. I keep thinking that the money won't change anything-it's not enough to pay for a full-time nanny to look after the other two while I spend all my time looking after G (more's the pity !!!), so I still have to try somehow to deal with him, whilst the other two just get on with it the best they can!

 

However, then I think about how the money could be spent on giving the younger two a treat every now and then, to make up for the fact that they're constantly being left to themselves, or we could pay for a bigger car, so they're not all squashed in together, with G pushing, shoving and hitting them because he feels hemmed in (we could get a people carrier and put him in the back on his own when he's in a mean mood! ).

 

I think the way it's helped you, Tally, is a good example of how it works-it's making the difference between 'just about coping' and 'living'.

 

The other thing I'm thinking about is what will happen as G grows up...he could need extra things that we might not be able to provide for him (like Tally's car), and if we apply for DLA and get it, some of it can be put aside every month for his future.

 

Now all I have to do is fill the form in

[Tally]

If you get DLA for mobility at the higher rate, you can cash it in for a car. I'm not sure exactly how it works, but the scheme is called Motability.

 

And yes, DLA is not means tested, which means you can get it even if you work.

[bid]

I was shocked and so upset when the school doctor suggested that I applied for DLA when Big A was 6, as I was struggling to come to terms with the idea of him having special needs, let alone being 'disabled'. He got middle rate care (and low rate mobility and for a short period high rate care when he had problems at night) which he continued to get until he was 18 when we both felt he had made so much progress that he didn't fulfil the criteria anymore.

 

It was an absolute life-saver for us, as I couldn't even work part-time until he went to residesi at 15. We really did rely on the money to survive. I think the financial burden on families with a child with special needs is profoundly under-rated and rarely acknowledged.

 

Although it was heart-breaking seeing all his/our difficulties written down, which didn't lessen with each renewal form, on the other hand I also felt our situation was recognised and validated by receiving DLA. I have two other children with severe life-threatening food allergies for whom I could legitimately apply for DLA, but I have never been able to bring myself to do so

 

Bid

Edited May 12, 2009 by bid

[thomastank]

[Definately worth applying for, we bought a trampoline for the kids which is great especially for burning off all that excess energy!!!!

 

[Mum of 3]

I was struggling to come to terms with the idea of him having special needs, let alone being 'disabled'.

Bid

 

That's just where I'm at at the moment, Bid...It's so dreadful when you start to go down this road. I feel like I picked at a thread and now the whole jumper's unravelling!!!!

I worked on G's first IEP last week with his teacher, and hearing her talking about just how much he's struggling with things like PE, writing, dressing himself after PE, choosing activities, socialising...totally reliant on adults for all his social interaction...it's very hard to hear, almost worse than the thought that I'm a cr*p mother because he's throwing tantrums all the time and hitting his brothers, which I felt all last year before he started school!

What makes matters worse about the DLA is that my 2 best friends both have disabled children. They both use wheelchairs, and one is severely disabled, to the point where he will always have to be fed, changed, etc, and has no means of communication. I look at them and think...'How can I put myself in the same boat as this?'

...but then I walk home from school with G, constantly chivvying him along, watching he doesn't wander into the road, walk into people, etc, and I watch the other children from his class trotting along happily with their mates, whilst the mothers wander along chatting, hardly even looking at the kids, and I think...'ah yes, there's the difference!...'

I suppose that's why there are different levels of support, to distinguish between the levels of need, so I should stop worrying and get on with it!