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SN children

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Original poster

Should I apply for DLA?

15 replies

bunnyrabbit · 21/05/2009 14:53

I've mentioned this before but still in a quandary.

DS1 (5.8) has an ASD but is very high end so NT most of the time. Only DX in Jan so we're now finding out more things about him that we didn't really know about before: some hyper sensitivity, hupermobility, lack of core strength etc. The one to one at school is really helping with social communication, behaviour and physically, so I'm going to talk to the school and buy some bits and pieces to help him along.

We've had a few appointemnts and have an OT apointment in a couple of weeks at which I intend to raise the possibility of him being dyspraxic. I will need to buy him some equipment after the OT appointment (we discussed this briefly at his DX assessment) and we do have other appointments to keep (£2.50 for one hours parking anyone!!)

The thing is, I was given all the forms to claim DLA but I haven't as I feel a bit of a fraud. Compared to a lot of people's DC's mine is so low maintenance I feel embarrassed to mention it. And yet there is no doubt that his needs are starting to impact on the family and our finances. I pay out for holiday club as I'm not ready to have him stay with friends etc in case things go a bit off the rails. any way, I prevaricate.

I'm still not decided whether I should claim or not.

Any comments gratefully received.

OP posts:

Phoenix4725 · 21/05/2009 15:14

fill in the forms trust me they wont give if they feel ds does not meet crieta , mind there not very good at giving either if they do.

Some times things become obvious over time and if his sn and needs for extra thingas are beginning to impact on the family .I would say do it and not worry about what peoplethink

Original poster

bunnyrabbit · 21/05/2009 16:08

Yeah I suppose so... we have a Help conference to go to in June and was hoping to get some feedback from people there too.

I know it sounds stupid, but I've only ever claimed benefits when I was made redundant, and that was only job seekers. Have never claimed anything for the family so just feel a bit funny about it. Which is daft as I always tell other people to claim for anything your entitled to.

Will have a look at the forms again I think....

Cheers Phoenix

OP posts:

ChopsTheDuck · 21/05/2009 16:41

Hi br,
we talked quite a bit a few weeks ago about the similarities between our dses, and mine gets HR mobility and MR care. I'd def say it is worth applying. If you can get a medical professional on your side to fill in their section on the DLA application I would think that you would be in with a good chance. Jack's paed helped with ours.

I didn't actually apply until last year, Jack was 6.5 and wish I had done it sooner. But I do think things like hypermobility do seem to get worse with age. Ds has times now where he can't really walk at all, and I need to talk to someone (paed, OT?) about that really...

marmoset · 21/05/2009 17:08

Definitely apply - my son has Downs and at the time I applied (age 5) I felt the same as you - telling myself that it wasn't really much extra trouble to look after him etc In a way, i think you can feel a bit disloyal to the child by admitting the extra things that are actually needed.

As Phoenix says, you won't get it if they don't think that you meet the criteria.

Marne · 21/05/2009 18:34

Yes, apply, i was worried about applying for dd1 (AS) as she seemed easy work compared to her sister (ASD), we were shocked when we were awarded middle rate for her.

jjones · 21/05/2009 23:44

My opinion is that it wont do any harm to try, but remember to give worst case for all the questions.

Original poster

bunnyrabbit · 22/05/2009 09:25

Cheers guys,
I will do it then. You're all quite right of course. They're hardly going to give it to us if it's not warranted.

Chops, sorry to hear J is having trouble. Yes you should call the OT. I'm sure they'll be able to help. Escuse my ignorance but what's HR and MR?

I don't think DS1's hypermobility affects him that much really, certainly not as much as your J yet, but as I don't know much about it I suppose will see what the OT says in a couple of weeks. Will stalk you for info and advice later no doubt.

I think I'm still in denial half the time which I suppose doesn't help. He's just so .. well.. NT most of the time. I feel embarrased explaining to people about his ASD and feel like I'm making excuses for him being eccentric.

And then we have evenings like last night, and I have to take deep breaths and try and stay calm and remember that he doesn't ignore me on purpose, other people just don't register sometimes, and when he does eventually hear me he wants to do what he wants to do because of the ASD, and he can't help putting his hands over his ears when I'm explaining that we don't ignore mummy (or can he??), and try not to shout 'cos it doesn't help and only upsets me, him and the baby and ... well you know the rest I'm sure....

Sorry! that turned into a bit of a stream of Consciousness thing....

OP posts:

magso · 22/05/2009 09:56

Do apply! I felt the same (although in all honesty I did not know about DLA till I joined MN) but it really helps to pay for all the extra expenses ( like chewed shirts, ot equipment, nappies etc) - and of course as I cannot work much because of ds needs all the extras we would like to able to afford like therapies and sn courses. I now wish I had applied earlier ( DS was 9!) HR means high rate, MR is medium rate. Try and see it as your childs help!
I was told to state that my child has a statement of sen (or receives 1:1 support at school) in part 26 as this helps to give a clear idea of the childs needs.
Good Luck

Original poster

bunnyrabbit · 22/05/2009 10:13

magso, Thanks for your encouragement.

DS1 just doesn't need anything like this... and I can work as DS1 is in MS school and the out of school club is fantastic with him.

Feeling guilty on a down swing again.. feel like I'm taking money from people who need it.

Can we have a confused emoticon?

OP posts:

ChopsTheDuck · 22/05/2009 11:27

DLA is awarded at different levels to take account of variances in needs. You wouldn't be taking the money from anyone. Mine doesnt have particualrly sn equipment expenses so much but there are still additional expenses like you stated in your OP.

I use the money for his swimming lessons and even bought him a PS2 for his room with it - on the basis that he can't always be runnign around and active! It also helps cover the extra laundry bills, clothes bills, petrol bills because I have to drive him everywhere.

Give the form a go. Remember all they want to know is if he has additional needs compared to a NT child of his age, which he does.

Original poster

bunnyrabbit · 22/05/2009 11:43

Yes. OK. You're right.

No more prevaricating. Will do it this weekend.

THank you!

OP posts:

TallulahToo · 22/05/2009 12:34

BR: Of course you should apply. DLA is his right! He will need it for so many things you can only begin to imagine and for the extra financial stretch for the rest of the family too.

5 is still, in some ways, early days so you might only begin to express things on the form first time around but then you have the option of including reports from the professionals involved too.

I felt like you at first and didn't claim for a long time, then the form was so intrusive that it took me months to get through it. We got low rate mobility and high rate personal care. Also remember to claim carer's allowance if applicable.

fatzak · 22/05/2009 14:22

You must apply if he is entitled to it. We have just been awarded high care and lower mobility for DS due to his epilepsy. Like you I have never claimed anything and feel very weird about being awarded it.

The forms really are horrible to fill in. Have at look at this guide which talks you through step by step. Without it I think I would have given up!

Original poster

bunnyrabbit · 26/05/2009 10:53

Thank you so much. Where would I be without mumsnet??

OP posts:

lou031205 · 26/05/2009 15:38

bunnyrabbit, just a small warning that the forms are truly horrible, and you may find that by doing them you realise how much more care your DS really does need above that of a typical child of his age.

For example, what struck me is how much DD's communication delays affected every part of her day to day life. It was a bit of a shock to see it all in one place.

Take care, and feel free to come back & unload.

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