nellie Report post Posted June 9, 2004 Hi Kirstie It also helps if you take a photo copy of your application form when you have filled it in. Nellie Quote Share this post Link to post Share on other sites
Lisajb Report post Posted June 12, 2004 I have heard of this happening, so as has already been said, use recorded or special delivery! I knew of one lady who, if she had to use extra sheets of paper, always used really brightly coloured paper so it stood out on the DLA person's desk, thus avoiding the "oh yes its on my desk somewhere I just can't find it" scenario when you phoned up! Lisa Quote Share this post Link to post Share on other sites
kirstie Report post Posted June 12, 2004 Heres the latest!! I phoned my local authority office to see if i had sent the form there by mistake (i think initially they deal with the DLA claims then send them off to Blackpool after so many months)The man on the phone told me they had indeed recieved my forms and he would phone them to find out what they were playing at. Well, this mornings mail arrives, and lo and behold they've sent me more forms to fill out, for, wait for it,a child over 16. Needless to say i will be writing a stinking letter and then perhaps when they actually get their finger out once they realise my son is FOUR and i'm not going to put up with their s**t! Quote Share this post Link to post Share on other sites
niki Report post Posted June 13, 2004 you go girl! give em hell! Quote Share this post Link to post Share on other sites
lynyona Report post Posted June 13, 2004 its a big black hole dla, im debating whether or not to go for re assessment for kieran as when i renewed it , he hadnt got his dx of asd and they lowered his rate to low care and because of that i have now lost my carers allowance for him as you only qualify if they are on middle care lynn Quote Share this post Link to post Share on other sites
ksasnic Report post Posted June 13, 2004 I am fingers crossed awaiting my review. What procedure do they follow ? I don't understand how they give out lovely for the first application and then just when you get used to the extra money coming in they quickly pull the rug out from under you and take everything away despite the condition worsening !!!! I do not really buy into they do not know much about certain conditions I reckon they are actually quite well up on the symptoms/ drawbacks etc having dealt with loads of conditions they can actually spot the similarities and to which illness/ syndrome.... I decided to go for review without filling in the GL24 form I know this could take longer but my reasoning is that if I did they could then just throw my review into the appeal pile and not give it a second thought. At least with review my reckoning is that it isn't quite so formal its back down to the first link in the chain... Only time will tell. I just wish they would realise what they are doing when they take away the dla. Its not just our securities its our kids, lets face it how many of our kids like change and boy when they take away the dla change cannot help but happen I wonder if anyone has successfully sued the benefits agency for the stress caused when they just take it away. Anyway off to read some more Quote Share this post Link to post Share on other sites
nellie Report post Posted June 16, 2004 Benefits - Appointees and Agents. The Department for Work and Pension have issued this leaflet about how somebody with an illness or disability can get help to collect or deal with social security benefits. Link: http://www.dwp.gov.uk/publications/dwp/2004/gl21_apr.pdf Nellie. Quote Share this post Link to post Share on other sites
Gordie Report post Posted June 16, 2004 (edited) I always thought I was "not disabled enough" to get DLA, so I never bothered applying. Paid if you need help looking after yourself Paid if you are aged 3 or over and have severe difficulty walking, or aged 5 or over and need help getting around None of the above apply to me, even though I do have Asperger's, so I very much doubt I'd get anything. My best friend on-line (who knows a lot about these things) seems to think I would, but I've already lived independently on my own for a number of years when studying at uni. James Edited June 16, 2004 by Gordie Quote Share this post Link to post Share on other sites
CarolJ Report post Posted June 16, 2004 James, just quickly I know of people who are ex-addicts alchoholics etc getting DLA. Also people who are on anti-depressants and suffer from depression (and I know many aspies do suffer from depression) who get DLA. If you are on medication of any kind and need help with things like financial paying bills etc, or gentle reminding to take medication, if you suffer from confusion or have problems communicating with others (which many asperger sufferers do). I have heard that apies are more likely than the rest of the general population to be the victim of an attack because of this their inability to communicate effectively andpeople taking them the wrong way. Sorry, I hope I have not offended you here. Its admirable that you are independent but I know of people who get DLA and I cant understnad how they do. Perhaps its me being closed minded but when I had to fight to get it for my son and they turned me down for my daughter, it makes me angry that when they deal with a condition such as autism which is lifelong why they have to keep getting you to fill in those stupid forms. Autism is not cureable. Perhaps if they know people who have been cured of their autism I would like to know where they went to get the cure. I am currently fighting for DLA for my daughter as her understanding levels are of a child of 4.5 or less and she is 8. She needs a high level of care still but because she does not have diagnosis yet (I am pushing for her) she was diagnosed with behavioural problems which are not suitable now. Grrrr, sorry James, I think the system is so fraught with problems that people who genuninely need help are put off by the lenghty forms and appeal procedures whilst people who are more capable seem to win. Am I being unfair? I dontknow. Here is a link, let us know if you think it might be useful. You might want to call NAS and see what they recommend. http://www.benefitsandwork.co.uk/site/content/ms_dla.htm Quote Share this post Link to post Share on other sites
nellie Report post Posted June 16, 2004 (edited) James You may be entitled to DLA, but before applying I would seek out the advice of someone in the know. This person should have a good understanding of AS as well as benefits. Sometimes the benefits person at the Citizens Advice Bureau has the expertise. Your local autistic society may be able to help. It may help if you keep a diary noting times when you would need help and support. This is a link to NAS - Claiming DLA. http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=108&a=3330 Nellie Edited June 16, 2004 by nellie Quote Share this post Link to post Share on other sites
Elefan Report post Posted July 10, 2004 Just to let you know that I have today been told my little girl qualifies for the Higher rate personal care and lower rate mobility! I'm really shocked, but relieved too. it will make a huge difference. Now I will do the Carers allowance forms, which I was too scared to do at the time for fear of tempting fate!! Thanks for all your invaluable assistance!!!!!!! <'> Elefan xx Quote Share this post Link to post Share on other sites
nellie Report post Posted July 10, 2004 Brilliant news Elefan Well done! Nellie. Quote Share this post Link to post Share on other sites
Lisajb Report post Posted July 10, 2004 thats great news Elefan, I'm so pleased for you! Lisa Quote Share this post Link to post Share on other sites
pookie170 Report post Posted July 10, 2004 MAGIC!!! In my brother's words, it's a case of 'CHUFFED-THE MOVIE'!!! I think this means I'm extremely pleased for you! Well done, hen!! Esther x Quote Share this post Link to post Share on other sites
Elefan Report post Posted July 10, 2004 Thanks you guys! <'> It is such a lottery though, and I have been reading back on the posts in this and similar threads. There are so many deserving people out there, who have not been so lucky. It's simply unjust and not fair. I know I have been lucky. I hope anyone who has yet to claim this benefit is encouraged to do so. The dogged determination shown by you all was inspiring for me!! Elefan xx Quote Share this post Link to post Share on other sites
ksasnic Report post Posted July 10, 2004 Woo hoo Elefan.... It's like winning the lottery !! I hope to hear from my review soon. I hope I am just as lucky... hey up dla people can my boys decision be made by the one that did Elefans...lol Wa hay Quote Share this post Link to post Share on other sites
Elefan Report post Posted July 10, 2004 Really thinking of you, Ksasnic. Please let us know how you get on. Keeping everything crossed,...including Robbie's furry paws!! Elefan xx Quote Share this post Link to post Share on other sites
pookie170 Report post Posted July 10, 2004 Good luck, Ksasnic!! May the force be with you!!! Esther x Quote Share this post Link to post Share on other sites
ksasnic Report post Posted July 30, 2004 Well I just can't contain myself, today is a red letter day woohoo. Thanks you guys for crossing fingers and rabbits paws. I went out earlier on today and then the post came so when I returned I saw the dreaded brown envelope on the mat... the sweat started trickling down my face as I neared it with trepidation, did I want to open it ? could it be a reply so soon after the last letter saying that they were still looking at the claim ? ... gulp... shakily I picked up the envelope and then tore it open in an absolute panic. I read the first page then had to read it again... As a result we have changed the decision.... My God - They are giving it to Nick again middle rate personal care (as before) but then the bonus came they are also giving him low rate mobility and then another bonus was instead of 2 years he will get it for 2 years 6 months... Funnily just stopping it a day before his 11th birthday...hmmmm oh well just pleased he still gets it.. We are all so relieved as we have put in to buy our council house and now it will be alright as well as the fact that in 3 years we aim to sell and buy in an area thats nicer as well by that time Nick will be moving up to the big school which in our area is pretty c**p so I will find another one in an another area thats better.. Everything is coming together now.. It is really good we are all less stressed so myself and my daughter are celebrating with a bottle of wine... she only gets a very small glass I get the rest... and Nick is just happy that he hasn't got to give up on cubs and the other things he does so he is celebrating with a glass of pepsi with a slice of lemon and lime.... ( he usually won't touch fruit !!) Good luck everyone else who is and are still trying to claim I am crossing my fingers, rubbing the four leaf clover and chewing on a rabbits foot... woops well you know what I mean.... Love to you all and big thanks for keeping me going when I thought I was losing my marbles.... <'> Quote Share this post Link to post Share on other sites
nellie Report post Posted July 30, 2004 ksasnic I'm well chuffed for you! Hope you manage to shake off the hangover tomorrow. Thanks for sharing your glad tidings. Nellie. Quote Share this post Link to post Share on other sites
Gita Report post Posted July 30, 2004 Brilliant news. Quote Share this post Link to post Share on other sites
pookie170 Report post Posted July 31, 2004 Superb!!! Thrilled for you guys!! Esther x Quote Share this post Link to post Share on other sites
BuntyB Report post Posted August 8, 2004 I work for a CAB and fill out a lot of DLA forms for clients. If you order a form either as a new claim, or a change of circumstances, it will be backdated to that date. If your form goes missing, it's worth phoning customer services to check that they have a note of the date you asked for the original form and ask them to backdate it and deal with it asap- if necessary appeal the start date. A few weeks money is worth it! You should always get an acknowledgement within 2 weeks of posting the form; if it doesn't arrive, the alarm bells should ring! You can actually apply online (dwp site) and get an acknowlegdement straight away. The previous suggestion of sending posted forms recorded/special delivery is sensible. I would add: Keep a copy of your form- it comes in useful should it go astray. It's also handy when it comes to a renewal, or if you need to appeal. Always highlight 'care' and 'supervision' needs. Explaining behaviour makes a better picture, but you have to point out what you actually have to do for them. DLA forms don't necessarily lend themselves to non-physical disabilities- you have to be creative. Fill in every box that you can! If you have any medical reports/school reports that emphasise the difficulties, send copies with your application. Good luck everyone! Shona x Quote Share this post Link to post Share on other sites
Solaris Report post Posted August 30, 2004 When my nephew got diagnosed, my family thought of me and saw the symtoms in me too, I'm clearly showing all the signs, I've done all the tests that are available online. Can I claim something as an adult? [ I'm 32 ] I'll be going to university soon and won't be able to get a part time job and stick it [ I've had over 100 jobs and always get dismissed through no fault of my own, or if it is my fault, I can't see why ] Yet I need a part time job while I'm studying for the 4 years I'll be at uni, or at least an income to help me out in some way, is this possible? How do I claim it, do I need to see a specialist? If so, Anyone know of one in Edinburgh, do they cost money to see? If that's the case, I'm pretty much doomed as I haven't got a penny. Quote Share this post Link to post Share on other sites
BuntyB Report post Posted August 30, 2004 Hiya. Yes, you can get DLA as an adult, up to 65. The diagnosis isn't the issue, it's the amount of 'care' you need (or supervision) or for the mobility componant, whether you need help from another person to go out. That being said, the decision maker is likely to contact your GP, or whoever knows most about your condition. If you are losing a lot of jobs, if you haven't at least seen your GP I recommend you should. A sympathetic doctor should be able to confirm your difficulties even if you haven't got a full diagnosis. Although kids with asperger's is new to me, Adult DLAs and appeals is probably 90% of my work, so if I can be of more assistance, give me a shout. Shona Quote Share this post Link to post Share on other sites
Solaris Report post Posted August 30, 2004 Thanks Shona, I'll mention it to my Doctor tomorrow, I'm going there because I thought I broke my toe about 4 years ago, everyone I mentioned it to said I wouldn't be able to walk on it if that was the case, so I just left it, although it still feels odd and I still can't bend it.. OK, that was way off topic but what the... If i need any assistance, I'll send you a mail Quote Share this post Link to post Share on other sites
Lisajb Report post Posted September 8, 2004 Ohhhh I thought I had a few months yet b4 I'd had to think about it again but..... the DLA people have sent me a form to reapply for Chris's DLA! OMGGGGGGGGGGGGGGGGGGGGGGGGGGGG (will shove to one side for a week or two) Of course they'd stuck this bit in about please don't delay or we may not be able to process b4 your original claim ends, excuse me, its September, Chris is 16 at the end of FEBRUARY, will it really take them 5 months to process a claim? Oh dear! Lisa Quote Share this post Link to post Share on other sites
Elefan Report post Posted September 8, 2004 Oh Lisa!!! The very last thing you want to think about!! Shove it to one side for tonight at least!! Elefan xx Quote Share this post Link to post Share on other sites
bid Report post Posted September 8, 2004 Party on down, Dude!! Bid Quote Share this post Link to post Share on other sites
Lisajb Report post Posted September 9, 2004 Well, I've finally had a quick read, and it appears Chris would have to fill them in himself. GULP! The average parent I know struggles with these - he'll be at a complete loss. Woudl be interested to know what others think - should I write it out in draft for him to copy onto the form, or should I just fill it in for him? If I do this, will they fish out the original application and think "Hmmm, same handwriting, THERES SOMETHING DODGY GOING ON HERE!" OMG I really don't know how to do this for the best. But I can't hang about - if I wait they might not be able to sort it out b4 the original claim ends. OMG! EEEEEEEEEK! Lisa Quote Share this post Link to post Share on other sites
bid Report post Posted September 9, 2004 Hi Lisa, I shall be facing the same problem next year when my son is 16. There are some posts on the main thread about DLA (I think!!) about how a parent can get the power to fill in such things on behalf of a young person. Sorry, can't remember more precise details! Bid Quote Share this post Link to post Share on other sites
nellie Report post Posted September 11, 2004 Lisa, I think this is what Bid is referring to. Benefits - Appointees and Agents. The Department for Work and Pension have issued this leaflet about how somebody with an illness or disability can get help to collect or deal with social security benefits. Link: http://www.dwp.gov.uk/publications/dwp/2004/gl21_apr.pdf Nellie. Quote Share this post Link to post Share on other sites
tess Report post Posted September 21, 2004 Hi Iam new to this forum , i think its fab. I have an 8 yr old who is diagnosed with dyspraxia and aspergers, i applied for DLA and was turned down, i asked them why and they replied that they went to the school to ask how my child was at school and to ask the teachers about his disability.Now this school is the very school that i fought to get an assesment, so they wrote to the DLA people saying that they had no difficulties with my child and that he understands danger, yet in my form i told them that i have found my child in the garden shed at 2PM at night and he constantly runs away from me when we are out and about .he runs across roads without a thought.I also mentioned to the person at the DLA office that i have to change my son's bed three times a night , she told me to use incontinence pads.I am gobsmacked, that they did not talk to to the clinical psychologist or the occupational therapist or my GP.After all they are the one's who have an understanding of the disability far more than a stuborn, ###### minded teacher. Has anybody had the same experience and did the apeal work Cheers Tess Quote Share this post Link to post Share on other sites
bid Report post Posted September 21, 2004 Hi Tess, Sorry to hear of your problems with DLA. Years ago now I had a similar problem when I applied for higher care rate, with the school being contacted (was that the same school who was actively obstructive when we tried for a Statutory Assessment? Ooh, yes it was...) and basically saying that there was nothing wrong with my son!! We lost his DLA and my ICA, which we desperately depended on financially. I appealed and asked every professional I could think of to write to the DLA detailing my son's difficulties. My son's DLA was reinstated, and at the higher rate, too. I would definitely appeal, sending in as much written evidence from other professionals as you can. Good luck, Bid Quote Share this post Link to post Share on other sites
lynyona Report post Posted September 22, 2004 When i had to renew my sons dla i had to fill the forms in myself (as school usually helped)and he was 18 so he d left.I just filled them in how i thought and at the time he hadnt got his diagnosis of asd so didnt put the clinical psycologist in the form to approach for information and when it came back they had lowered the care rate hence i lost my carers allowance because in their opinion he didnt need as much care as he did before, and i didnt read it properly and not realised till the appeal date had gone that it was lowered but i am now thinking having a re assessment due to change in his circumstances and i am told because was renewed over three months ago now i can do this. But im goin to ring the benefit advice line up first. lynn Quote Share this post Link to post Share on other sites
Elefan Report post Posted September 23, 2004 If somebody is in receipt of DLA and are under 16, do they automatically get placed on the Disabled Childrens Register? Are they then covered by the Disability Discrimination Act? Elefan xx Quote Share this post Link to post Share on other sites
nellie Report post Posted September 23, 2004 Elefan There is a difference between being on the Disabled Children's Register and being on the SS Disabled Children's Team. The goverment would like all children to be on a disabled children's register, for different reasons. Children with disabilities have to fulfil the SS criteria before they get services from the SS Disabled Children's Team. Children deemed to have a disability have rights under the DDA. Nellie x Quote Share this post Link to post Share on other sites
nellie Report post Posted September 23, 2004 Elafan Link to topic on Disability childrens directory, Is your child on it? http://www.asd-forum.org.uk/forum/index.ph...st=0entry2423 Nellie Quote Share this post Link to post Share on other sites
Elefan Report post Posted September 23, 2004 Yup,..I remember that one. So, if your child gets DLA,..are they 'registered disabled',...as opposed to being on the disability register! Boy,..I'm doing a good job of tying myself up in knots!! xx Quote Share this post Link to post Share on other sites
Lisajb Report post Posted September 24, 2004 I'm sure some of you will remember a couple of weeks ago me saying that I'd had a claim pack for Chris's DLA, for when it runs out in FEBRUARY!!! Today I had another letter form the DWP stating "We have not had the claim pack back yet" The mind boggles! They send you the thing 5 months b4 your claim runs out, tell you you need to fill it in straight away, then enclose a leaflet which says they have an estimated 28 day turnaround on claims! Well, they're just gonna have to wait! My blood isn't bankable! Lisa Quote Share this post Link to post Share on other sites
