asd and dla

[ladyhawk]

hi just joined ihoped someone could help my s has been getting dla for about 4years,he is now eight ijust got letter to say they are not sattisfied he meets the requirementsand dla has been stopped and so has the carers allowance.i just cannot believe they have done this isent in loads of information perhaps i need to give more detail.isent in letter stating he has adhd and asd that he needs constant suppervision .rang dla office they said someone else would take a fresh look at the claim which will take about 6weeks if they do not then change the decision i have the right to appeal.i am not going to give up on this they have no idea the ammount of supervision an asd child needs.this is just so stressful,any advice on what more i can do i have 6 weeks to send in anything else that i want themto take into consideration.thanks

Welcome to mumsnet.

I have a 4yr-old with ASD and we get DLA for him. There was a recent thread on here about another poster (Chocol8) who also had to appeal. Hopefully someone more technically-minded than me will come along soon and do a link for you.

I think you need to throw in as much detail about his needs as you possibly can. Write a full account of every single bit of supervision that you need to give him in a single day. He may only eat certain foods, for example, or need you to choose appropriate clothes for him/ warn him in advance that it's time to get dressed/ keep chivvying him along while he puts clothes on etc. Make lots of comparisons with boys of his age with no ASD.

If you give us some extra detail about things that he has trouble with we can hopefully help you with what to write.

Hi ladyhawk this link is chocol8's thread which should give you lots of general advice.

as Coppertop says - if there are any specific questions you are having problems with then post them and I'm sure someone will come up with something helpful.

Good Luck! It's a tiring, horrid job and we all feel for you.

thanks for your reply.just got mail today dla hav said they will look at decision again will now take 11 to 15 weeks,dont know if this is a good thing or not...he basically needs to be told how to sit as he will rock in his seat until he falls on the floorneeds to be told bottom on the seat and feel under the table this is done repeatedly throughout a meal,he will only eat certain foodsalso very very slow takes over an hour to get him to eat dinner have to stay with him or he runs around the house climbs on the units runs up and down stairs etc.this is not isolated behaviour he constantly runs climbs jumps of the furniture ther are constant arguments between him and his brothers i seem to spend 90% of my time sorting out his behaviours and trying to keep the peace.his outburts are frequent and bedtimes are a nightmare its 11 o clock at least before he goes to bed at night he shouts gets in and out of bed and wakens his younger brother so we have to get his b asleep before we can put him back to bed they share a room.this is some of the difficulties we have.sorry to go on this all seems very negative,

I think I would start by breaking down each area into little pieces and writing a full account of what happens in each situation.

For mealtimes you could start with something like:

18:00 Tell ds that tea will be in 5 minutes. Remind him again when it will be 2mins, 1 min etc.

18:05 Put plate on table. Ds's meal has to be prepared separately as he will only eat X.Y and Z. (also mention extras such aswhether he will only eat from a certain plate, with no food touching each other, only a certain number of chips etc)

18:06 Ds still running around. Tell him to sit down. Remind him to put bottom on chair, legs under table (and anything else that you have to tell him.) Mention if he has problems using a knife and fork. Add that a 'normal' (hate that word!) 8yr old would know how to sit down on a chair and stay there.

18:08 Ds still running around. Tell him to sit down like his brothers/sisters. Ds sits down but immediately jumps up again.

Use this kind of detail for the full hour or so. Include every single time that you have to remind him to eat or sit still etc.

thanks for the advice its very useful hav lots of ideas now of what to write.time to start putting it on paper will let you know how i get on

Good luck, Ladyhawk. Let us know if you need any other ideas or even just someone to read through what you've already done. Horrible though it is just remember to be as negative as possible about ds' difficulties.

hi been reading and reading over this thread picking out bits and pieces such a lot i can relate just started my reply to dla its already long this seams such adaunting process,not helped by the fact that even as i sit here trying to write this my boys are screaming ,fighting ds2 is being impossible sorry to moan its been s**y week.

my spelling gone to pieces

Don't apologise for moaning. This is where we all usually come for a moan or a rant. Rant away!

sorry just been seperating them all,have to have ds2 right here with me....ive done 3 rough pages and thats just mealtimes and being with him outdoors.. had a bad week at school as well so hes even more difficult than usual,just seem to be constantly going to SENCO they are not dealing with him very well,his teacher and i dont see eye to eye shes a rightbattleaxe..dont really know how to deal with school issues as up until this hes always liked school,

What a nightmare. Does he have a statement at all or any kind of extra support? Are there any particular issues we might be able to help with?

Sorry, I keep asking you questions all the time!

yes he has SEP classroom ass 20 hrs per wk gone intop4 teacher did not get off to good start punished him really harshly shouted at him in front of class,told us he should be on ritalin(twice)when we tried to talk to her about this she was incrediblly hostile.we had meeting with her and senco felt this was next best step...needless to say this did not go well,she suggested we move him to smaller school totally lost my temper with her told her she was not recognising his condition and was having detrimental effect on him,her attitude was/is that he will do as he is told .he now has a love hate relationship with her/school.SENCOis lovely woman very understanding had to go to her 2day he has been seated at the back of the class by himself which he hates i know that he is disruptive but surely it is their job to manage and control his behaviour.bit long i know but thanks for letting me rant

I would be furious! And what medical training does she have that qualifies her to decide that he should be on Ritalin???? And as for the comments about him moving to another school and needing to do as he's told....Grrrrrrrrr! It's such a shame that someone like her might be able to spoil your ds' whole perception of school. I'd be tempted to complain to the Head or whoever but I expect you've already got more than enough to deal with at the moment thanks to the idiots who decided ds no longer qualified for DLA.

ladies takes me awhile to reply keep having to referee/mediate/seperate may be awhile

i know coppertop every time i think about her my blood boils,been told to give her space to find her feetmy dh is fuming too..one question re dla what does night time mean does that mean when everyone has gone to bed or what..want tobe specific ds2 sleeps usually through the night but doesnt go to sleep untill 11.30 or later..all your help and support is greatly appreciated.

I think "night time" starts from the time that you would normally go to bed although I'm not 100% certain. If you would usually go to bed at, for example, 10pm then I think you could mention the late bedtime. In any case it won't hurt to mention it.

I've just remembered that there's a really good site that has a downloadable guide to all the little things that you might not think are important but that you should mention in your claim. I found it an absolute lifesaver. I can't do links but if you go to www.bhas.org.uk and click on the DLA section there is a guide on that page to download.

Even if it doesn't eventually count as "night time" I would definitely mention elsewhere something like "Ds is still awake until 11.30pm. A normal 8yr-old would be in bed by 8.30pm (or whatever time an 8yr-old would go to bed). This means that he requires extra supervision between 8.30pm-11.30pm to ensure that he doesn't endanger himself or the house/his room etc." It's a case of really hammering it home to them about what he needs and how he's different from other 8yr-olds.

Ask away if you need any more help/advice/hints etc.

thanksfor all yourhelp feeling better today ,more positive anyway

soory ladies me again,ive just had a thought(dont laugh) ive asked for a reconsideration not sure if this was right thing to do should i have gone to appeal instead re consideratio will take 11/15 weeks then what if they dont change the decision will have to appeal anyway.Should i include a bit about trouble he has at school his class ass has to be with him at breaktimes and playground because of his fighting ,loads of incidents lately finds it hard seperated seating arrangements in class because he is disruptive should i include the fact that he is taken out of class to be calmed down etc...sent his sep and letter from his teacher last year with the orriginal forms but they did not botter to contact anyone didnt even contact his dr at mental health team.if we go to appeal will they then contact school and doctors.. dont like the idea of appela i will be so nervous and probably blow the whole thing...what to do?????

Hiya sis, I dunno wot 2 say, just read your msgs and have sat and cried for ya, I know thats not very helpful and I dont know of any practicalities that'll help but these nice ppl in here do. Just wanted to say I love you and hope you get this all sorted soon. xxx

I think I would probably go for the re-considering the claim option first. Is that the one where you have a month or so to let them know? I think I would leave the appeal until later. I'm sure you can take someone along with you to an appeal for support so you don't have to be alone.

I would write down abs everything about the extra help he needs at school and how he needs to be treated differently to the rest of the class. It all helps to build up your case that you are entitled to some extra help because ds needs more help/supervision/intervention than an average child of the same age. Include all the details about the extra arrangements he needs. Make the person who has to read it all feel exhausted just from imagining it all as they go along. Remember to be as negative as possible even though it's horrible to see it in black-and-white.

When you finally get through it all remember to photocopy everything just in case you need to take it further or even to help if you are successful and need to re-apply at some point in the future.

coppertop thanks for your help it has been invaluable ,hopefully my next post will be a good news

crazymum iknow love you all the way to the moon and stars AND BACK.

will go now before i get people thinking.. oh no not that dreadful woman again....

Best of luck, Ladyhawk. I hope to see a thread called "Yippeeeee! Those [insert insult of choice] have finally seen sense and given us back our DLA!!"