To go against DLA appeal advice?

[Divinity]

My DS(7) has ASD. He is in the aspergers category and while he struggles socially he is doing well academically.

His application for DLA was turned down despite the masses of evidence. It was turned down because

A) the school had ticked the yes box to whether he could dress himself, feed himself and use the toilet independently. Yet he soils himself every other day on average and is still in nappies at night.

B) the Occupational Therapist report said that he can dress/feed himself independently after I said he could. Trouble is I meant that he can dress in bits but not the whole sequence (and is easily distracted). He can eat himself but 95% of the time its with his fingers.

The advice of a charity specialising in DLA appeals is that it would be very difficult to win based on the above, that its very gruelling meeting so recommended withdrawing the claim.

I need to tell them asap if I'm withdrawing as the meeting is soon. But my friends say I have nothing to lose by going.

What are people's experience of dla appeals? Is it traumatic? I don't want to waste people's time if I've no chance but at the same time want to put my side across.

What is it he needs he money for? Genuine question. I dont know much about aspergers.

If you want to appeal, appeal. I know people who have, for different reasons and havent said it was traumatic.

Have you resubmitted the correct information and asked for a reconsideration?

To deal with his sensory issues eg chewing clothes,to help him know when he's hungry + to ask, weighted blanket to help him get to sleep (he struggles to do this), the extra underwear/pants needed for soiling, to help his social understanding/empathy development, understanding to ask for help not simply be passive. To be able to give him experiences so he can draw on this to help him manage change etc.

Not sure what others experience so I don't know if that's enough?

Yes, its the actual appeal meeting not a reconsideration.

I'm trying to help him manage his emotions, get dressed and use the toilet using visual aids.

He refused to use the one for getting dressed. He thought the toilet one was funny (though tried to turn himself green by holding his breath as the smiley reward face at the end was green). It doesn't work unless I'm there with him to help guide him.

I thought about it polter but wanted the objectivity and the traffic. Someone with an sn child may be more inclined to say I'm right to pursue this. I really want to know if I am or not.

If the thread goes all weird I'll go over there.

I have a SN child so, yes, would say to pursue it.

As a parent though, if you are struggling financially to meet the needs of your child and this could help then, yes, I would say to pursue it.

Go. Explain to the tribunal exactly what you have said here. They will start from the beginning, take you through yours and your sons day and if they are not sure about something in the written evidence they will ask you to clarify.

They are not ogres, it is an inquisitorial process, they are there to find the facts. You have nothing to lose by going and it WILL be fine, I promise.

Good luck.

Not a parent of a child with SN btw, but involved in benefits work and have attended many tribunals.

How does the money help stop him chewing clothes and understand when he is hungry etc?

Have you written down and explained that to them?

I got a weighted blanket for my dyspraxic son and it really works. It cost £60.

I also bought him some special cutlerly that have these bits to grip their fingers still and pointed at a slight angle.

Unfortuntately he could get the hang on them either and still uses his fingers but I know a lot of aspergers children have successfully used them, in the SN forum.

I also bought a decent electric tooth brush which was cheap in the sale so he can brush his own teeth now. He is still awakward and needs guidance but its a start!

It won't stop him chewing them ohforduck it will simply enable me to buy more school uniform and tops for him. He is already through the cuffs on the uniform and ruins the necks of tops by chewing them. I tried a chew necklace but he said it tasted "plasticy".

I'll have a look for the cutlery thanks for the tip. He already has the electric toothbrush (made a huge difference).

Oh God I wasnt questioning her need for it. I have a child on DLA. I was just trying to get to the point that has she explained all this to them? Written everything down. Added extra paper if needed.

OP does your son wake at night?

Also OP if you dont get the DLA or it takes a while could you make your own weighted blanket? Do you have a sewing machine?

I know it is a drop in the ocean of all the things you need but having the, calm at night or a way of calming the, during a 2 hour tantrum is paramount IMO.

Go to appeal. You have nothing to lose. Have you been to the citizens advice, they were very helpful when we appealed for ds1 and appealed on my behalf. I had to attend the appeal but, in the end, didn't have to say anything. Our appeal was upheld. A few pointers:-

Would ds's teacher write a letter in support of your claim. The school were generally unsupportive but his teacher at the time of the appeal wrote a letter outlining the differences between ds and his peers.

Is there anyone else who could write a supporting letter ie leader at Beavers, swimming teacher.

Is there any new evidence since your original application.

Get it altogether and speak to CAB. I was hoping for lower rate care and mobility and was awarded middle rate care and lower rate mobility.

Good luck

He can do but will now stay in his room. Having the cats helped as they like sleeping on his bed. Which keeps him in his bed. But the usual time he gets to sleep is 10-11pm. Which means he's exhausted n the morning.

I would pursue it because being in receipt of DLA can make access to other services easier and change people's perspective of your issues from the start. But I doubt you'll get very far without getting some more evidence. Can you get anything more from the school, OT, groups / people that know your son? (For us the money is a drop in the ocean against what extra things we pay out for compared to our other dc.)

Totally agree there. I sometimes feel guilty that my son is on DLA because our way of life has well, become a way of life. When you step back and think about it or write it all down it becomes depressingly stark what needs they have.

I bawled my eyes out after I re read through my sons DLA form and kts got significantly worse since.

OP have you also asked friends and family for their suggestions of what you should add, they might remember stuff you have forgotten.

But also going back to my questions above, did you explain exactly what you would use the money for and how it would help, as opposed to just stating what his issues were?

Did you explain that on the form? About the sleep?

It's pretty much the norm turn down first dla applications these days.

I get dla for my two who have Autism......in the surface you could say why do they need it ??

I use it for things like short breaks and holidays as they have no freedom outside of the home.

Replacing eaten clothing.

Meals out. - bonus as it saves on the washing up but also provides valuable social and coping skills.

Breakages (( 3 grand worth of flood damage one year ))

Lego - we must have around 1k wortg of lego, some say it's a waste of money as the boy builds it and then ignores but meh.

Do you have a CAB near you who might be able to help with yor appeal.

There used to be some very good posters who advised on appeals on the MSE benefit boards, however lately it seems to have been taken over by benefits bashers so I wouldn't recommend it any more :(.