clintess Report post Posted November 16, 2005 hoya lauren ive been sorting my sons out since april,sept they gave him low for care and nothing else so its in appeal so i should hear after the appealing hearing on the 15 of next month.They seem to like to draw it out and his previous senco done the same on the form which caused my orignal application to be rejected dispite the salt and paeds reports to them. It help and what decided to give him low was that he has a community nurse assigned to him in august.My hv is finding out about an ot for him to see if they can help as well, but if that happens to you hold in there and dont give up. The senco im in process of a complaint with her has didnt get anywhere with the chair im now taking it further luckily my sons have moved schools on the advice from the salt and his pead. good luck hope all goes well. Quote Share this post Link to post Share on other sites
Flora Report post Posted November 24, 2005 (edited) I've sent a huge pile of paperwork including a long letter with more information from me; all the latest reports from the child psychiatrist; a letter from my hugely supportive mum; a cd with video footage of my son in melt down; several letters from me to the school detailing his mental state and details of the nights he hasn't slept etc; and I've also had a letter from my MP who I contacted on Monday, telling me that he's written to the disability benefits complains department about my son. I really hope I've now done enough to convince 'them' to reconsider their decision and award my son DLA. If not then I will most certainly appeal. Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
clintess Report post Posted November 25, 2005 paperwork tell me about it,it just goes on.im sending off today all the paperwork to the chair of govenors saying im taking this further and to the lea as well as the local mp so now have to see how this turns out.Parents are complaining to me big time that she is useless so although my sons are at a diffrent school i still feel she should be removed from this privaliged job so have to wait now for results hopefully before they brake up for christmas. still waiting for dla appeal as not till not month but they will have a doc on panel so that should help. Quote Share this post Link to post Share on other sites
Flora Report post Posted November 25, 2005 (edited) They rang me this morning! They are awarding my son higher rate care and lower rate mobility until he's 16. This is the third thread I've posted this in but I'm must so pleased with this result I can't help it! Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
Tez Report post Posted November 25, 2005 Well done Lauren. I'm glad your persitence paid off. Quote Share this post Link to post Share on other sites
Mother in Need Report post Posted November 28, 2005 Great! And a great inspiration for everyone else as persistence can pay off! Quote Share this post Link to post Share on other sites
jewels Report post Posted December 2, 2005 Hi all, After having my son's DLA form here for over 4 or 5 weeks now, iv eventually dinished writing it out Ive got 6 kids and filled out a lot of forms in my time but OMG i found this the hardest thing ive ever done (apart from getting the dx for my son (30.09.05) I never even applied when he was a baby when he was dx with a VSD & PVS as i didnt know you could. Ive put this on the form now (altho his VSD was closed but they said he will still need surgery for the PVS. I was told that a lot of people dont get it 1st time round and you have to re-apply and i really dont wana go thru THAT again Ive scanned all the pages (got that tip from here, thank you) so hopefully it wont be so bad. How often do you need to apply anyway? Many thanx for being here <'> Take care Luv Julie xx Quote Share this post Link to post Share on other sites
Flora Report post Posted December 2, 2005 (edited) Jewels, I applied first time a couple of years ago and got turned down. I applied again this year and again got turned down, but this time I asked them to reconsider, and also got MP to write to them and within a few days they rang me and awarded my son higher rate care and lower mobility until he's 16 when he has to claim it in his own right. Good luck, and I'm no expert, but any advice please don't hesitate to pm me. I wrote a corker of a letter when I asked for reconsideration and sent masses of evidence from all sorts of sources (even got my mum to write something). Not sure if it was that or the letter from my MP that swung it. Remember too to think of the worst case scenario when answering questions. Good luck fingers crossed for you. Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
Brook Report post Posted December 2, 2005 (edited) Hi Julie, I know those forms are a nightmare aren't they. If they knock you back, then you can ask for a written explanation, when you recieve it you can then back up with more info to support your claim, you then ask for them to look at the decision again, there are time limits on this, but they send the info. Hopefully you wont need to do this. I was told that they usually refuse first application, but they didn't with my ASD son, so I really think it depends alot on who deals with your form first. If awarded it, they give the amount of time that the award runs, you only have to re-apply when they send new forms a few months before it runs out. HTH If you ask for them to look at the decision again, you dont have to fill in another form so dont worry. Brook Edited December 2, 2005 by Brook Quote Share this post Link to post Share on other sites
jewels Report post Posted December 4, 2005 Thanx for the reply Lauren & Brook, I suppose like everything else in this world everyone's different and everyone has different opinions to how they view things. I just hope i get someone who is understanding with my son's case as i dont want to do another form for a good while yet as i found it awful to do Ive sent the form off now and all i can do now is wait, keep my fingers crossed and hope it wont be too long. Thanx again for the advice and support and i will let you know the outcome. Hope you all had a good weekend. Take care Luv Julie xx Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted December 13, 2005 Well, it's taken me 5 weeks but I've finally finished filling in the DLA form - phew, that wasn't easy at all! Well, his peadetrician has offered to write the statement so that will help, now I've just got to get the wretched thing off before the 19th Dec deadline which isn't easy with Christmas post. Understand I can send part 1 off now and send part 2 later so if peadetrician signs that and gets it straight back I should be OK if I send it recorded delivery or something. Well, wish me luck! Daisy Quote Share this post Link to post Share on other sites
Flora Report post Posted December 14, 2005 (edited) Very very best of luck daisy. Got my fingers and toes crossed. Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
jewels Report post Posted December 15, 2005 best of luck daisy Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted December 16, 2005 congrats Lauren on getting the DLA award your son deserves. never heard of sending video evidence to support DLA form - impressive and fingers crossed to the others applying for DLA. we're in the same boat, Logan's form was due back couple of week's ago. I sent off the part 1, saying part 2 to follow. they phoned, and asked how long, and have been very reasonable about the delay. we've nearly finished the form - it's a bit of a emotional ride isn't it? Certainly made us see a lot of things more clearly, all those 'little' behaviours and interventions don't half add up to a lot ! L hasn't been officially dx (waiting for appointment for assessment), we've recently moved and changed to new GP, and doesn't go to school, so we've not got many professionals to write supporting letters. We paid for a brief private assessment, which wasn't much cop, but thinking of including the report as at least it does confirm there's something ASDish happening, and that extra help is needed. His dyslexia tutor is going to write a report over Xmas, and asking a couple of home educating parents who's known he's 'different' for years to write too. well that's our DLA story so far ! good luck to us all, as the money could help us to help our kids. - Katya Quote Share this post Link to post Share on other sites
stellasp Report post Posted December 16, 2005 hi there,yes i have been getting dla for 4 years for my son,it is very hard to get.one of my other children is adhd and i cant get anything for him. Quote Share this post Link to post Share on other sites
jewels Report post Posted December 16, 2005 Got a reply from DLA saying they're going to be contacting the school and GP. The last time i took Liam to see GP about his problems the GP told him "stop acting silly and maybe other kids will be more friendly with you and stop bullying you" And about his character voices (he likes to impersonate anyboday on TV especialy like copying shrek & donkey and also any films with jim carey) the GP said " you just have to stop talking like that and grow up and act your age" Soooo im a bit worried what the GP will say to the DLA take care luv julie xxx Quote Share this post Link to post Share on other sites
Flora Report post Posted December 18, 2005 (edited) Jewels. When I was going through the application process the same thing happened to me. They wrote and told me they were seeking information from the school. I immediately wrote back with more of my own information explaining from me. At the same time I asked the school for a copy of my son's school records (they are required to provide this). They gave me a copy and there was the form they'd filled in and sent to the DWP. I then wrote another letter explaining that the form the school had filled in in no way showed how bad the situation was. They didn't write to the GP (even though I asked them to because my GP luckily is very aware and supportive) which I was annoyed about because I asked them to on the original form. They still turned us down; but it meant that when I asked them to reconsider they could look at all this information I had provided over the weeks and it meant we didn't have to go to appeal. All in all from sending the application form to them I wrote to them an additional 3 times with extra information. I don't know if this makes any sense. (I'm a bit groggy this morning!) but basically keep sending them extra information, detail a 24 hours showing how much care you provide (even seemingly minor details like cutting up food and helping them clean their teeth etc). Don't give up. Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted December 21, 2005 It's in the post today - special delivery! All photocopied just in case they lose it, lots of supporting evidence and a glowing statement from his paedetrician It's actually a couple of days over deadline but never mind - at least its on its way Just the waiting now. Daisy Quote Share this post Link to post Share on other sites
Flora Report post Posted December 21, 2005 (edited) Daisy, best of luck. I'll keep everything crossed for you. Having done this recently myself I know how awful the wait can be. Edited August 19, 2006 by Flora Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted January 2, 2006 wish us lcuk please:) we've finally fisnished the DLA form, phew - what a relief. it was due in Dec 1 but will go in tomorrow's post ( 3rd jan ). still waiting on 2 supporting letters from a friend and his tutor, but they can follow. I almost feel sorry for the person who's got to read it, as it's an epic. We took all the advice from the celebra guide, it's quite an emotional journey filling in the form. It's not been pleasant facing up to our son's depressive episodes, which he easily slips into when our mangement is below par. Also partner has found it a strain, it's made him realise just how aspie he is. - Katya Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted January 4, 2006 Does anyone know if they send you any kind of acknowledgement that your application has arrived - ours would have got there on 22nd December which means it probably ended up in a big in-box during the Christmas party!!! Either that or it will have turned up between Christmas and New Year to be opened by the person cleaning up the empty wine bottles. How do I find out? Daisy Quote Share this post Link to post Share on other sites
fiorelli Report post Posted January 5, 2006 Daisy, I would suggest phoning up and asking - if they have recieved it, there should be a record on their computer. I think I recieved notification that they recieved the application, but I can't be 100% sure. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted January 5, 2006 You should have had an acknowledgement that your application had been received. It is possible you will get one in the next day or two as most Civil Servants will have been off between christmas and new year, but it is worth riningin up to put your mind at rest. Simon Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted January 6, 2006 I've just phoned them up and they say they have received it and are beginning to deal with the claim. Fingers crossed! Daisy Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 12, 2006 (edited) The last time we applied for DLA J didn't have a statement and there were precious little reports floating around about him. My question is - if we refer to the reports we now have or his statement do we have to send a copy into the DWP with the forms? Thanks in advance Eve Edited January 12, 2006 by MotherEve Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted January 13, 2006 Hi Eve, I would certainly say yes to that - send them everything you've got! I kept everything even compliments slips and sent copies off with the application - you can't have too much. Remember the people who assess these things don't necessarily know much about the condition and probably appreciate the extra info. Daisy Quote Share this post Link to post Share on other sites
nellie Report post Posted January 13, 2006 I know these are already on the forum, but thought I would highlight them again. DLA guides. http://www.bhas.org.uk/ http://www.cerebra.org.uk/ http://www.youreable.com/ Nellie xx Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 13, 2006 (edited) Thanks Nellie I've just come across this - from the DLA Advisory Board website There are others but this one [below] gives advice to the decision makers on autism [dated 2005] http://www.dlaab.org.uk/pdf/updates/WEBUPDATE4.pdf Interesting little proviso at the end of the newsletters: FOR YOUR INFORMATION Please note- the articles contained in this news- sheet are written for the benefit of Decision Makers, to help them with their job. The articles are not to be quoted in any decision or communication with members of the public or their representatives. Shouldn't have put them on the web then!!!!!! Edited January 13, 2006 by MotherEve Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 16, 2006 i have just completed indias DLA application our key worker at the child development unit has helped me with alot of it and filled in the bit for professional contact,she says that shes only had 3 children over the years who have had to appeal against a decision the main emphasis ive put down is about indias mental health,not sleeping and her lack of danger awareness,im worrying that ive read quite alot on this thread that the DLA have gone to the school instead of who you've asked them to approach because the nursery are quite against the idea of india being on the spectrum because she doesnt display her behaviours as much at school as at home,i will be posting it today recorded delivery,its taken me a bit longer than the date they gave me to have it returned(was due on 13th)will i lose money because of that?well fingers crossed,i will keep you updated. Quote Share this post Link to post Share on other sites
lisa Report post Posted January 16, 2006 We just got a decision for L's DLA renewal. We got high care and low mobility until 2010 . Last time they only awarded for just over a year. My son is also on high care/low mobility until 2008. Feel like I can breathe a sigh of relief at not having to fill in all those forms. Lisa Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 16, 2006 Good news Lisa Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 16, 2006 Hi Eve, I would certainly say yes to that - send them everything you've got! I kept everything even compliments slips and sent copies off with the application - you can't have too much. Remember the people who assess these things don't necessarily know much about the condition and probably appreciate the extra info. Daisy Hubby is fretting that DWP will pick up on J's IQ (140) and any good points and ignore the problems highlighted in the reports - he wants to send in parts of reports or selected reports ... any more advice? I've read the idea earlier about sending in information leaflets and that seems a good idea. Quote Share this post Link to post Share on other sites
dixie Report post Posted January 16, 2006 Hello all first let me introduce my self my name is shelley and I have two children one girl 11 and one boy diagnosed with aspergers who is 7, I found this board while googling, I have been receiving high rate care low mobilty for him for 4 years, I have just had to reapply and they have lowered his rate to middle care low mobility, I am astounded as he still has the same problems with needing help with bodily functions as he did when I first applied. He still wears a nappy at night he will be 8 in May, through the years I have given it all to get him dry at night. I have had the incontinance health worker/nurse give me advise which I have adhered to. The problem is he urinates that much through the night (with no drinks given after 6pm) that his nappy leaks makes the bedclothes wet which wakes him up that then starts a wakeup routine of tantrums etc difficult behaviour. When I phoned them and they read out the statement of his entitlement, it was written clinically he has no different symptoms than any other child of his age, and night terrors etc happen to all children and it would benefit him if I woke him up to take him to the toilet. Do they think I have not tryed that urgh!!!!! I was in a quandry as whether to have the decsion looked at again, but I am to scared to try incase they drop the middle rate seems looking through this forum that if you get anything these days your lucky. My sons symptons very in many ways some get better some regress, mostly it's the aspects of the outside world now. Blue lights in toilets can cause a violent tantrum, road traffic. I am really mad because they class my son as on par as any child of his age with the bodily functions, pah my son will never be able to participate in school overnight trips etc due to peer pressure. My son has had to fight so many things in life he had no words at 4 now he has a very good vocabulary though his usage is wrong alot of the time but hey I can hear him. How can they say after 4 years sorry your not disabled enough now when nothing has changed and at nearly 8 hey just walk him to the toilet my son feels frustrated enough by it, ripping up his wet nappys at night. Sorry all I just needed to vent, I am not even sure this post reads ok as I bearly have read what I am typing. Quote Share this post Link to post Share on other sites
phasmid Report post Posted January 16, 2006 Dixie welcome to the forum. Lots of useful tips and advice for you on here. First off - appeal their decision. Have a read through this thread and you'll see the sorts of things you need to say. Anything specific just start a thread and ask away. Quote Share this post Link to post Share on other sites
dixie Report post Posted January 16, 2006 thankyou for your welcome, I am so unsure what to do if I leave it as it is I retain my carers, just dropping a rate will effect our income, not only does dla amount drop but the child/tax severe disability element will be gone as well. Reading through the threads I think maybe I described his bedtime routines wrong or not the best, which really irks me because I knew the tips of photocopying, presenting the worst case seniario etc. I put down on the form he needs 7day care at night, twice needing someone to help him ( I meant changing the sheets and nappy) I also put it took 15-20mins per change, but what I ommited to say that wsa just purely for that not the hours awake after the fact. urgh I could kick myself. I got lost in the form and concentrated on his lack of awarement to danger. As I have just been typing this his specialist has just rang me (he is a brilliant specialist and I can ring anytime for help) and he has advised me to leave it where it stands as he thinks we were lucky to get the higher rate and with someone like my son he would expect just the middle rate and hard to prove so I feel relief now I am going to stay where we are on the middle rate. But he did say if things dramatically change reapply I think in these situations we get so much little help for our children, I am quite happy now that in the specialists opinion we are getting what we are entitled to. The one good thing to come out of all this is that I found this board I should imagine that I am going to be quite a frequent poster. thanks again shelley Quote Share this post Link to post Share on other sites
phasmid Report post Posted January 16, 2006 As long as you are hapy with things that's whats important! Glad yo found us but, be warned, this place is addictive! I am sure you'll beback no you have found us! Quote Share this post Link to post Share on other sites
OPooh Report post Posted January 16, 2006 I know I should get a form and apply but he's still not as far as a dx (just ed psych agreeing with me) and ever since a prof said he is on the ASD spectrum I've been in complete denial and just too upset to think about trying to get him the money (is this a normal reaction?) Plus he's borderline - so does that mean he shouldn't have it Quote Share this post Link to post Share on other sites
phasmid Report post Posted January 16, 2006 I think you'd be hard pressed to get it without a dx. That said they can only say no. If they do you can always appeal. Your case would be stronger with the dx. Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 16, 2006 I think you'd be hard pressed to get it without a dx. That said they can only say no. If they do you can always appeal. Your case would be stronger with the dx. agree with the case would be stronger,but my nephew didnt have a DX and got DLA Quote Share this post Link to post Share on other sites
phasmid Report post Posted January 16, 2006 As I say, the worst they can do is turn the claim down. Go for it and see what happens. Quote Share this post Link to post Share on other sites
