Here some suggested organisations that offer expert advice on SN.
anyone else filling in dla form for first time at the moment?(28 Posts)
I am starting the form for my ds just recently diagnosed with asd and dcd, finding it a bit overwhelming and confusing in places so I thought if any one else is doing it too at least we might be able to help each other understand it a bit.
So far I've just gone through it and made notes separately for each question but I'm a bit confused about some things,
for eg as he is under 3 years shall I still fill in the mobility or not? he will be 3 years soon so is it better to just write it anyway? (i dont think he would get higher rate mobility anyway?? he can walk, does have difficulties but still can walk)
The school/ nursery qs, he is not in yet but will be in january so do I write details of where he is going or just leave it blank?
When did needs start do i just put from birth??
im also quite confused on the therapy question, where it asks you how much therapy they get and how often etc. because the amount he is getting and the amount he actually needs is not the same (im really unhappy with lack of slt etc he has got so far) - however, i do do stuff with him at home of course,but can i write that and how would i write it? portage were mentioning that i can put about how i have to spend more time and effort teaching him everything but not sure where I write this.
im just worried about that if i write how little slt he gets it will look as though he does not need much help whereas he is in reality not really verbal at all and desperately needs so much more than what he is getting.
he is also suposed to be having ot, but not got it yet so again cant really even write it??
portage will help me check it over but I want to get as much as I can drafted first but just finding it a bit difficult
im not good at forms at the best of times but just dont want to screw this one up and then ds ends up missing out
so would be nice to have some company on the thread if anyone is in same boat
yeah I am defo gonna appeal mine if they reject it, or give him lower rate
Fir - yes it is, but it shows how bloody wrong they can be, and why everyone doing this form needs support from someone who knows how the system works. It makes me so cross - so I'm determined to get everyone to know that the first decsion ins't always the right one!
Yes we ask now too - or stand and just give them 'the look' - so that even if they don't move they're not exactly 'comfortable' on their journey!
A bit like when you ask someone without a blue badge - to shift it out of the disabled parking bay....
I asked a bloke to move out of a disabled seat on the bus so that ds could sit down yesterday. I had a twinge of guilt for about a second, then I looked at ds and thought bollocks to that. Ds can't stand for very long, especially on a moving bus. He'd have been in pain all day if he'd have stood up.
And you really need to get as much help looking after your child as you can - I used to feel as you do - time has taught me to be more selfish I'm afraid!
Thank you. I may pop to the CAB. I feel a bit awkward though, I used to work there (not doing this though), they are really, really busy.
Hi we had ours sent back - unread by anyone in the medical profession - aparently this is first a 'tick box' paper-sift, giving us zero mobilty [my son is a wheelchair user], and low rate care [we catheterise 3 hrly, have to get up each night, he faints without warning etc, etc].
We then took all our reports and evidence to our local CAB they put in an appeal straight away - telling me we should have sat with them and they would have filled the form out to begin with.[We did write in eveyt box, give huge details etc - but having an 'official' stamp makes the DWP sit up and take notice.]
The final decision came back as high rate care and high rate mobility. So if you get a responce that you do not agree with please do as we did as its a crime that our children do not recieve all that they should, when their life is hard enough. xx
I'm filling one in. I used the cerebra guide (linked above). Ds struggles to walk (hypermobile joints that don't support him very well) and is in pain most of the time. The bastards turned him down last time. They didn't care that he's in pain or falls into the road because 'he can actually walk'. How many 13 year olds do you know who need escorting to school and hold their mums hand because they fall over otherwise?
firawla, i have a letter from psych confirming AS and a letter from neurologist confirming epilepsy , but thats a few years old . we have never seen anyone about the sleepwalking but have mentioned it at other appointments . I have to hang a windchime on his bedroom door so i will wake up when he gets up , hes gone downstairs and picked up the door keys before , so could have ended up in the street!
nostopping , thanks , good idea to look at my posts on here. i think i am struggling a bit because my brain just WILL NOT WORK at the moment. im wondering if i am depressed tbh , extremely stressed for sure !
apparently parent partnership helps out with filling out the form too.
Thriftychic, I have followed your posts about your DS. I have not filled out a DLA form as too preoccupied with other things at the moment but from your posts, you are so entitled to DLA. A friend of mine keeps telling me to fill out the form this is why I know a little about it, not to the extent to give much tips though.
You can go through your posts on here and write it down on the form, in essay format.
DLA is not based on diagnosis but on how much care your child needs compared to those of a child of his own age.
I think that is actually quite a lot to write, once you start explaining everything you will probably end up using all the space on the form and if he's sleepwalking at night too then they should give him higher rate??
Before I did mine I ended up doing notes on separate paper so I knew roughly what I'm gonna write on each question then just expanded on it.
If you have a report from when he got his dx then send that and anything else eg if you have anything from his school? I thought I wont really have any reports to send either but by the time you gather together what you've got it ends up more than you think. I highlighted key phrases on some of my dses, which is an idea someone told me on facebook group, cos sometimes the reports can be quite long so you want the key things to be emphasised and not to be missed
Good luck! The form really sucks, you will feel so much better once its finished though and a weight off your shoulders
i recieved my form the other day , so far i have wrote ds2 name on the front
i didnt think it would be that bad , but then i read a few threads on here with people saying they had written pages about their child and had loads of reports and evidence to send with it. dont think i will manage that
DS2 has been diagnosed AS and the main problem we have is his aggressive , destructive behaviour and not wanting to go to school , he is also very controlling and wakes me up sleepwalking ALOT . not sure this will be enough for dla ? he also has absence seizures but they have lessened and he isnt on any medication for them at the moment . the consultant is undecided as to how much they are affecting him.
what do you think ?
sorry , think ive hijacked
I've finished my form!!! so relieved to have it done and out of the way. Hopefully post it tomorrow.
Thanks so much for all the help everyone who replied here & pm, all the advice made it so much easier
Be as negative as possible with your answers
and if it asks time in mins, where poss put all day, or constant
Do not be positive.
Then when its all finished sit down and chill and think of all the funny things they do,I'm sure there will be alot.
Best of luck
I put a friend down as person who knows them.
I've heard people writing a list of the lovely/positive things about their child, just for their own benefit, to offset the bleakness of the DLA form.
thanks, think i will do the same about putting down what he's had and what he's still waiting for
im not sure either about the person who knows the child, those who have filled it in who did you put?? i was thinking either ask someone from portage but they havent known him that long, and hes recently changed to a different person? but they still maybe could do it? or one of my friends has known him from very young and she used to be our childrens centre person so shes known about all his developmental issues through all the stages of his life cos thats the person i always offload on and she used to see us pretty much every day - but dont know if you have to put someone with a strictly professional relationship, does it matter if its your friend
im sure we do have c.a.b round here so will see if i can get some help from there.
unfortunately i dont drink so cant even go down the g&t route! have to stick to
Hello, just wanted to second what EllenJane said about the Cerebra guide being very useful, and with Gorey about keeping a photocopy.
My DD is now 3.9 and I applied earlier in the year when she was referred for ASD assessment. I also filled in the mobility section (she lacks awareness of road danger safety and danger in general), more just as a marker for myself when it comes to renewal. In terms of the education provision questions, I noted that she wasn't attending yet, and provided the start date and address details etc. Regarding the start date of the needs, I said that they were first identified following her two year health assessment, but would of course existed before this.
I get what you mean about recording the therapy appointments! On my form, I recorded what DD had had up to that point, and what she had been referred for. For example,"DD has been referred to SALT and OT by X paed at X Child Development Centre. She has had X number of review appointments by SALT and is now awaiting dates for a block of formal SALT appointments. She has had a block of OT appointments and is waiting dates for the next block. She has also been referred to social communication group and is awaiting appointments" etc!
I provided the consent to contact my GP, noted on the form that I had never discussed DD's development with the GP at all, but that they had been copied into all the reports so the practice would be aware of the situation. I also left the page blank where you can get someone who knows your child to provide further details, simply because I didn't know who to ask. I sent copies of the reports that I had to date (paed and OT).
I phoned 10 days later to check that my form had been received and was told that it had, and that the decision had been made. DD was awarded middle rate care!
Also agree with rocket that you should check if there any organisations in your area that will help with completing the form. A colleague of mine completed hers with the assistance of the Citizens Advice Bureau and was very happy with their help.
Good luck with your form. I filled out one page per night, and would agree with Gorey that a G&T is a good help! All the best to your DS & you.
forms suck, I always need a moment with a g&t and a sniffle after cos it really spells out just how crap things are and is the total opposite of the upbeat pma that us mummies bang out the rest of the time. Just think of how much help that money will be to ds and get it done, he is never going to read them x
ah okay, i was thinking would have to wait til the dla one comes back before asking for the carer's allowance form but maybe will have a look at getting it sent now too.
thanks so much for the long reply, it's all really helpful.
yes he is still in a buggy, walks slowly clumsy etc even though he technically can walk so will just put it all down
will have to try and get started with it properly tomorrow
i dont know if it is just me being weird but i feel awful writing every little thing cos i feel like im being horrible to ds, as obviously you cant be too positive on the form! although its for his benefit, and maybe able to pay for some private slt. anyway sure i will feel relieved once its over and done with
I was going to PM you but am actually interested to hear how other peeps approach their forms too. I am a parent of sn but no special form filling qualifications just lots of practice! You should look up the advice on the website to get a professional opinion but here is mine too fwiw.
I work on the basis that putting as much information on the form as possible is more likely to give DLA a realistic picture so fill in every possible bit no matter how vague it seems. I use up the 'anything else' bits with an essay on how long it takes to do stuff or how hard it is for dc to socialise etc.
Definately fill in mobility section anyway. I always add a bit of a rant about how unfair it is that most kids walk well by now and mine aren't. Emphasise the difficulties there are don't make light of any problems. I know your lo is walking but if tiredness/ clumsiness/ safety is an issue or you need a buggy or whatever then put that down on the form.
I would put from birth unless sn caused by later illness or accident.
You could put the school details then a note next to it clearly saying not attending school yet but due to on ... start date. Make sure you also say something along those lines in the something else bit just to make sure ie "child due to start school on ... not sure how well he is going to cope because of x y z".
You can put OT as "awaiting assesment" in the appointments due bit.
I always put how much therapy i do as well, so if kid sees physio once a month but you do physio for an hour every day then put an hour a day with a bit in brackets after saying by you etc. So put in portage daily, SALT daily. Most kids don't get the actual amount of therapy they need from a therapist, the teams just rely on parents to be doing the daily therapy and it is this info that DLA need. If you do any extra stuff like swimming or music classes then put that in to because strictly speaking it is therapy that you are paying for to help your child.
Use a black ballpoint and write neatly in capitals if you can. Add photocopies of any letters or reports you have that can back up your case. Write all of the form from the point of view of the worst case scenario, be blunt about how hard it is compared to other kids, don't miss out any difficulties or things that make your lives harder - does it take ages to get dressed, does child fall a lot, do you do lots of lifting and carrying, do you have to help with social interaction, are there dangers you have to look out for - all these things are much harder and time consuming with sn. No matter how small a thing it seems write it down.
PM if I can help more (may be tomorrow eve before I can reply though) and please please please photocopy the form before you send it away so you have it handy for next time and it won't be such a headache, also sometimes the forms get magically lost in the post.
Sometimes DLA will leave you alone for ages and other times you just filled out a form and another one gets sent out for re-assesment. I have a specific folder for all dla stuff so I can just go look up the old forms since most of it is just repeating the same stuff over and over. I also make a note of the date I sent the form and start phoning them to check they got it after about 5 weeks. So it does get easier the more you do it! It's also worth getting all the other forms done now for anything else you may be entitled to like carers allowance, income support, tax credit etc because although the DLA hasn't been approved yet the system can keep track of the application iykwim and there won't be a delay when it all comes through.
Hope this helps, sorry for the long post.
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