Flora Report post Posted August 9, 2005 Just after my son's diagnosis of Aspergers Syndrome and Dyspraxia (my other son at this time hadn't had his dx of language delay and autistic tendencies) I applied on my son's behalf for DLA. I was turned down and didn't bother to appeal (partly because I was in the process of relocating and had other things to cope with). A couple of years down the line and I am thinking of reapplying. I think my main problem is that I'm so used to coping that I do cope but it would be easier with some assistance. So when I was filling out the forms I probably based it on years of coping so didn't record all the problems and difficulties we live with. (hope this makes sense!!) I was wondering if their are others out there who are so used to 'getting by and coping' that they forget/don't have time to seek the help they need? Also, as a divorced Mother of 3 children, two of which are ASD it's almost impossible for me to even find part time work (I did work part time last year and the effect on my boy's was that they were both constantly distressed by the disruption to the routine). What I'm trying to find out is if there is anyone who has managed to get over the dilemma of deciding what is a serious problem and what isn't, especially when you've 'coped' for years and years, filled in the forms and been awarded DLA successfully? Is it just a case of working hard to get your point accross? We're not house bound and my son is in main stream education; but his disability restricts all of our lives in a way that is very difficult to illustrate in the forms they send out. Any advice re this garbled message would be greatly appreciated! Lauren Quote Share this post Link to post Share on other sites
mossgrove Report post Posted August 9, 2005 Lauren I very simple terms if it is something you do that you would not have to do if your child was not autistic, it should go down on the form, it is not just for things that you are not currently able to do that you would like some help with, althiugh these should be put down as well. Also remember that you are NOT trying to provide a balanced asessment of your children's strengths and weaknesses, you are trying to get help, so grit your teeth and be prepared to make it sound grim! There are many threads here with some very sound advice, but tha fact you have coped somehow over the years should not hold you back from applying. Simon Quote Share this post Link to post Share on other sites
Lesley Report post Posted August 9, 2005 (edited) We are about to re-apply as its term runs out next Feb Have you considered contacting the carer centre? www.carercentre.com I have just had a carers assessment & not only is she (my support worker) going to support my claim, she's coming round next fri to fill in the forms for me! And she said that if they dare discontinue it she'll take them to tribunal on my behalf! L xxx Edited August 9, 2005 by Lesley Quote Share this post Link to post Share on other sites
forbsay Report post Posted August 9, 2005 Hello When we initially applied for the DLA we were turned down. We chose to appeal and there was a care organisation in Edinburgh called The Action Group. They helped us fill in the appeal form. If we were turned down again, we were going to go to appeal again. Seemingly, it is quite common for the DLA to turn down applications. To be honest, I didn't have the strength to appeal but this organisation helped us and we won! Elaine Quote Share this post Link to post Share on other sites
invent 10 things b4 breakfast Report post Posted August 11, 2005 Hi Lauren, yes it does appear very common to be turned down the first time, someone once told me about 90% of applications are refused. I applied back in May and was turned down because of the information the school gave in the DWP, but I phoned them and they asked me a few questions and I asked for it to be reconsidered and at the beginning of August I got it agreed So don't dispair, I know it's so time consuming and a complete headache filling in the forms but I'm sure that's why they make us do it twice After all we do these things for our kids automatically and it comes as second nature to us, don't give up, after all it benefits the kids! Oh and they backdate it Quote Share this post Link to post Share on other sites
LizK Report post Posted August 12, 2005 We've just been awarded middle rate DLA (first application)for my 3 year old son. He has yet has no formal diagnosis but is likely to be on the milder end of the autistic spectrum /or have DAMP or somewhere in between. He has a years speech delay too but will go to mainstream school, won't need statementing etc Like you I am just used to dealing with my son as he is and didn't know whether we'd qualify for DLA at all. However he does need additional help thorughout the day even if sometimes that is only for a minute or two. It's only if I compare him to other children of his age that it registers with me that he does need more caring for. If you've not already read this booklet have a look http://www.bhas.org.uk/freeguides/dla-chil...icalgrounds.pdf I found it vitally important when I filled the form out. It suggests you fill in each section by stating your child's problems, what help they need, how they would sufffer without that help and how they differ from othe rchildren of the same age. The booklet gives examples of the sort of help a child may need which was useful as there were fair few things we were doing that was additional help without realising and otherwise I wouoldn't have put them down. I filled in copious amounts of detail on the form including nearly 4 sides of supplementary pieces of paper! There is also some info about DLA on the NAS website. Filling in the form was quite a dperessing experience as it just focuses on your child's negatives and what they can't do. However it brought home to me how much I do do for my son which made me feel better about my parenting skills if nothing else! HTH Liz Quote Share this post Link to post Share on other sites
KarenT Report post Posted August 13, 2005 Well done on your successful claim, Liz. You will no doubt be very relieved now. I don't know about other people who were turned down for DLA on first application, but I'm finding the appeal process far harder than the original claim. It doesn't help that I haven't been able to find anyone in the Gateshead area who is available to help me with it (they all seem to have gone on holiday at the same time) and I'm wading through the mire on my own. Nor does it help that the decision maker seems to have focused his entire report on James' near-perfect behaviour in school while completely ignoring the aftermath of that, but I can't respond to it until I can get access to the teachers' report when term starts in September and I have to have the appeal papers in by 9th Sept. It's like an aptitude test, isn't it? Qualifying for benefit seems to depend on how determined you are to push your claim, rather than the condition of the person applying. Ho hum, onward and upward. Karen x Quote Share this post Link to post Share on other sites
LizK Report post Posted August 13, 2005 It's like an aptitude test, isn't it? Qualifying for benefit seems to depend on how determined you are to push your claim, rather than the condition of the person applying. That's exactly how I felt. I was fortunate to get a lot of help filling in the form but if I'd have filled it in as I originally thought I'm sure we wouldn't be in the fortunate position. It's like your driving test, going through the motions of looking in the mirror etc Seems to be fairly random too as to the award or the mood of the assessor on the day. A firend with a child with Downs Syndrome got turned down because the DLA bods said her child didn't need any extra help ??????? Liz x Quote Share this post Link to post Share on other sites
frances-mary Report post Posted August 15, 2005 Can anyone tell me how long it was before your got a reply after your submission for the DLA?. It sounds like I ought to prepare myself for the appeal process. As I am now currently trying to fill in the parental submission for my son's statement I wonderd how long I had before the next lot of form filling was likely to decend ??? Mary Quote Share this post Link to post Share on other sites
LizK Report post Posted August 15, 2005 Posted my sons on June 30th and found out a week ago that we'd been awarded so about 5 weeks I think. That included them asking the nursery for supplementary evidence. We got an acknowledgement week after we sent it and were further notified that they were contacting the nursery. Hth Liz Quote Share this post Link to post Share on other sites
Jeni Report post Posted August 17, 2005 dont forget to take a photocopy of ur form before u send it in and keep it for next time u need to apply, it helps u remember some of the things u do that r a part of ur normal routine. its so easy to forget these sorts of things. (i should really follow my own advice....) Quote Share this post Link to post Share on other sites
