Aspergers and DLA

[Flora]

I was wondering how many people are in receipt of DLA for a child with Aspergers Syndrome. I have applied twice. The first time I got refused, second time I'm still waiting for a response. I made much more of an effort with my second application and I'll be interested to see if it makes a difference. If I get refused this time I will probably appeal, so also wondering how many people have appealed a refusal and what the outcome was.

 

Lauren

[littlenemo]

photocopy all forms so you can refer when you have to reapply (we had to reapply after about 18 months but then got 8 years, although I think there's a clause that says they can ask us to do it again just about any time!)

[mossgrove]

We got higher rate Care Component and lower rate mobility for our son with aspergers at the first time of asking.

 

The 18 months is up and we are waiting to hear about the renewal.

 

It is important to realise that the actual diagnosis is quite peripheral to the decision, it is based on an assessment of the amount of care required, which is in turn based on the answers you give.

 

Simon

[Flora]

Simon, yes the first time I applied I wasn't very thorough. This time (at your advice I may add!) I left no stone unturned. The whole form from start to finish took me the best part of a day, and I still added to it and tweaked it the next day before I posted it (by special delivery!).

 

Lauren

[phasmid]

Our local C.A.B helped us get it right.

 

Would also agree with photocopying form for future reference purposes.

 

Good luck with the application...should you fail - APPEAL!

[Helen]

I ticked 'Yes and was succesful'.

[KarenT]

Refused and appealing. I'm impressed at Lauren getting the form done in a day! My original form took six weeks of working on it every day and the request for reconsideration about the same. My CAB chap reckoned that my application was very strong and failure to receive benefit was probably due to DWP targets and rushed decision makers, not the quality of my claim. He reckoned he couldn't have done a better job himself. A lot of it is luck, probably most of it, because the DMs are just civil service pen-pushers with no medical training at all.

 

Karen

x

[Flora]

two letters slid through the door this morning. One addressed to me one to my son. In a nut shell they have requested a report from the school. Now this could be good or bad. Bad, because the school are not backing my request for statement which means they have a vested interest in playing down my son's problems. Good(ish) because the head teacher is often harping on about what a huge amount of support my son gets from me at home, all I can hope is that when she makes her report, her view of my level of support for my son translates itself in to something nearing the truth and supports the application for DLA.

 

Lauren

[mossgrove]

When we applied for DLA for our 5 year old, his teacher came to a meeting at the asessment centre he was attending for three mornings a week at the time. She waved the form she had received about his DLA in the air and said "Does anyone know what I do with this". The teacher from the asessment centre said, "you give it to me, I fill it in and you sign it!".

 

We got higher rate care component.

 

Simon

[Flora]

I rang them up and asked if I could submit more information and evidence as they obviously needed it hence them requiring a report from the school. I've had sent them extracts from my parental advice for statement, plus a bullet point list of everything he needs help and support with. I'm dertermined they aren't going to turn me down again.

 

Lauren

[KarenT]

The postman's been so I need to update my post on this thread. WE GOT IT!! Middle rate care and lower rate mobility (as the CAB chap predicted), backdated to April and running to April 2007.

 

Keep going Lauren, give as much additional evidence as you can gather and they won't be able to turn you down.

 

Karen

x

[lil_me]

Nice one Karen, very pleased for you, bet you are looking forward to the back payment, was the only bonus of it taking 6 months to sort my sons award out. Get your application in for Carers Allowance if you or your partner qualify aswell, they can backdate that to a certain point aswell. Edited September 28, 2005 by lil_me

[Kathryn]

Well done Karen Good luck Lauren, don't give up.

 

My daughter has DLA and I get carer's allowance. I would never have known about it if it hadn't been for this forum. The higher reate mobility has enabled us to get a blue badge, so I'm glad I put all the effort into filling those forms in.

 

K

[KarenT]

Carers Allowance done - I'd applied for it at the same time so just had the Reply form to complete. I don't think I'll get any more money for that as I'm on IB for myself, but I believe it covers NI contributions which will help.

 

Also applied for his cinema pass for free entry for carers. If you can think of anything else that DLA entitles you to, please remind me, I'm sure there were other things I've long forgotten!

 

Karen

x

[lil_me]

I am on IB also, you do not get it paid to you but they do pay the NI contributions, if you are income support you get a premium for carers allowance as you do with DLA.

 

It also helps when applying to the Family Trust Fund, I just got a cheque yesterday to help with a few costs.

[UltraMum]

I ticked 'applied and was successful'.

 

We applied when my son's diagnosis was ADHD, Dyspraxia and 'autistic tendencies' - they sent a doc out to assess J and he spent the whole time running from one end of the house to the other or bouncing on the settee - doc couldn't wait to leave!

 

Got to reapply shortly so now working on what to put on the form again!

[meemo38]

W had our appeal today, got middle rate care, but no mobility, but we never put anything to indicate he needed mobility as he is fine walking ect!!!!

So we are pleased with the outcome, back dated from april 05 to april 07.

Michelle

[KarenT]

meemo, mobility doesn't necessarily mean the child has problems with physically walking. J got low rate mobility for the amount of supervision and reassurance he needs when out.

 

Karen

x

[gvce]

Would you still ge DLA even if you work full time and your child goes to school?

 

 

[KarenT]

I can't see why not. There doesn't seem to be any stipulation about who provides the care, just that the care needs to be provided by someone. So the parent could work but have a grandparent responsible for care when they're not there for example, and lots of children in receipt of DLA attent mainstream schools.

 

Karen

x

[Malika]

Hi

I voted yes but refused. I did not go to tribunal but asked for a review.

Not sure however if I should have voted as my son has been diagnosed with ASD not AS because even if he developed language he had important language delay 18 months delay when he was 5 and this after 8 months speech and language therapy.

 

All the best.

 

Malika.

[skye]

I would have never thought of applying for DLA before my daughter received her diagnosis if I had not been told to do so on this forum. I am very grateful that I sent off the application. My DD was awarded higher rate care and low rate mobility the first time around!!

[Emma_74]

I ticked yes i was successful first time its about the only thing that we haven't had to appeal wait for

 

Emma

[cmuir]

Would you still ge DLA even if you work full time and your child goes to school?

 

 

 

 

Hi

 

Yes. I work full-time and my son goes to school. I'd also like to add that we were awarded DLA first time despite my son having no formal diagnosis at that point. So a formal diagnosis isn't crucial when applying for DLA. The main thing is that you can prove your child requires more care than a neurotypical child of the same age.

 

Caroline

[thomastank]

I was wondering how many people are in receipt of DLA for a child with Aspergers Syndrome. I have applied twice. The first time I got refused, second time I'm still waiting for a response. I made much more of an effort with my second application and I'll be interested to see if it makes a difference. If I get refused this time I will probably appeal, so also wondering how many people have appealed a refusal and what the outcome was.

 

Lauren

I ticked yes, my son has HFA. Luckily got it first time due to a lot of help, it took me months (even missed deadline) but got there in the end. . . .

[Sally44]

I rang them up and asked if I could submit more information and evidence as they obviously needed it hence them requiring a report from the school. I've had sent them extracts from my parental advice for statement, plus a bullet point list of everything he needs help and support with. I'm dertermined they aren't going to turn me down again.

 

Lauren

 

I've voted in error. My son is autistic not AS. And we were successful. Our local council has a department that helps with completing all forms for all kinds of benefits. I also sent a copy of my son's statement with the form. I have heard of parents being refused DLA when they have asked the school for their input (that is both mainstream and special school! - and the parent with a child at special school said to school that "if you think my son does not have these needs then I want him transferring to mainstream". Needless to say the school changed their 'opinion' on the level and areas needing support and the parents were successful the second time applying). Unfortunately these forms can sometimes rely on using the right kinds of words and interpreting the questions correctly. When I was helped to complete them I definately would not have understood what information they were asking for from the wording of the question.

 

I have also noticed that the forms themselves have changed this time. My son has been successful again. But I don't know how mine will go as I claim for something other than ASD.

[christo]

I ticked yes, my son has HFA. Luckily got it first time due to a lot of help, it took me months (even missed deadline) but got there in the end. . . .

I never for my daughter applied as only thought about Aspergers in the last 2 years and only diagnosed this year at age 19. She has had problems with communication as well as health issues, epilepsy, reading & writing, dyspraxia etc and hearing impairment and double vision. She had community care people come out and interview her then reported she was 'too high functiioning ' for them. When I look at the criteria I cannot see her fitting.

[Special_talent123]

I'm autistic and 19 and still get DLA. right how i was successful was because i was assessed that i need help in my personal care in my daily living as still have difficulties so i have middle rate. and i get lower rate mobility because i still quite vulnerable travelling to unknown areas and vulnerable travelling back home at night time so i use that to get taxi's.

[Sally44]

My son also has Sensory Integration Disorder, and so I had to explain how that affected him as well. For many children they don't have the sensory issues as a separate diagnosis, but you can still explain how they affect your child for DLA. For example my son might refuse to get on a bus because of how it smelt, or he might run away from smells, or he frequently appears deaf and therefore wouldn't hear my warnings regarding safety issues, or he can react with fear or aggression if suddenly touched by a stranger etc. And of course you have to explain how if they do get upset and have a meltdown that you just have to ride it out and wait for the child to become calmer.

[Special_talent123]

some sensory issues are linked into autism like i am sensitive to bright light the sun was too bright and it hurts my eyes and makes me stressed so i had to put my hand over my eyes until we are out of the sun.

 

second i have is loud noise it distresses me it even confuses me because i talk to one i cant block out what others say so im hearing a lot of conversations all at once that is why i work best in quiet areas, when this happens i would end up in tears and putting my hands over my ears not coping.

[MelowMeldrew]

I had a lot of support from schools he was in who provided background. It was so negative from their view, I had no issue getting DLA ! I am not sure if that was good or bad... As far as I am aware my GP has never been involved. Everything I have had done was via schools and their Dr. There is nothing here for autistics via the NHS anyway so what point the GP ? They don't provide access for the parent half the time.... I think I would get more back up if I was in a third world country than here.......... | We know the money is not the real issue here, but the doors DLA might open to real help.

[smiley1590]

i would get GP/fam doc or any other professionals inolved help support you when applying for DLA by helping you write what to put as has to be worded just right negative affects of ASD and any other problems have to be listed to show true reality! DLA is hard battle to fight alone try get back up for the systems get as many ,edical reports and get information from there cross reference to give you some ideas

 

hopes these links helps you!

good luck

take care

XKX

 

i know the questions are long winded,complicated and confusing go on NAS website there's the link for you:

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2210

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp...150&a=16490

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1561&a=7788

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1561&a=3773

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1561&a=3824

 

ring or email NAS epxlaining your personal situation with DLA and can they give you any more information or adivce that you don't already know!

 

 

[daniels-mum]

I have just been awarded DLA for my eldest son, 11 yrs. I have got middle care and lower mobility which was more than I thought to be honest, I would have been happy with lower care rate but i'm not going to rock the boat! Part of me feels very guilty for getting this to care for my son, but when I am still wiping his bum, holding his hand to cross the road and he's crying because he doesnt like his tea, then I realise he isnt like most 11 yr olds and yes he does need more care. I have been quite down about it all this weekend as it is really hitting home at the moment, I am usually quite positive but sometimes things happen with him and I just dont know what to do.

 

He hasnt got any formal diagnosis apart from Social and Communication Difficulties but I have requested CAMHS review their decision and am waiting to hear back from them. Am also waiting for a decision on statement any day now. It sounds mercenary but the money will really help aswell, even for things like paying my mum to do some cleaning and stuff like that as I work ful time and have a hyper 2 yr old.

[smiley1590]

do you think your son had AS/ASD? as social communication difficulties normally come as part of this! is the two year old developing 'normally'? good luck with CAMHS review your case sounds like you need it done!

[daniels-mum]

Sorry Smiley1590, have just seen your reply, I wasnt been rude!!

 

I dont want to sound like I have self diagnosed son but I do think he has AS definately, a previous Ed Psych who has now left the service told me he thought D had AS but he wasnt in a position to doadnose this and he told me to get a referral to CAMHS through the GP, or the 0-16 Team as it was known then. This is about 2 years ago now. Long story short CAMHS assessed D and said he didnt meet the criteria for diagnosis and he couldnt possibly have autism as he asked his teacher if she used to teach me (which she did) and apparently an Autistic/Aspergers child would never do that. At the time I just accepted their decision, although it was a big knock back but the more I have thouht about it since he does meet the criteria and I have asked them to review their decision and involve different people to who did the original assessment. I have also had D assessed by a private Psychologist who is approved by the NAS and he agrees that D has AS or Atypical Autism. I am still waiting to hear from CAMHS, Im going to give it another couple of weeks then chase them up.

 

With regards to the 2 yr old, he is a bit of a mystery. He does certain things which make me wonder, like lining his cars up and laying down on the floor to watch the wheels on them. He is also very possessive and aggresive with other children when they go near his toys, he came home from nursey with scratches all over his face yesterday from fighting and he was only 2 in March. But on the other hand I think he is sociable and has good eye contact and talks alot so on balance I think he is developing normally. Its just the rage that concerns me, my sister works at the nursery so I get an honest view of what he is like there and not some glossed over remarks at the end of the day. He also smacks people when we are out, for example if he is in the trolley in the supermarket in a queue he will just hit who ever is stood in front of us. I think he is more likely to have ADHD as he gets older than anything else but im probably also been a bit paranoid.

 

Im sorry I have totally digressed from the DLA topic, I have had a good experience with DLA so far but I know that not everyone is so lucky. I am waiting for a decision on statement anyday now so maybe I wont be as lucky with that, fingers crossed though!

 

[smiley1590]

my mum missed out on years of DLA for meas was hard and struggle to get even when diagnosed years after when we eventually recieved payment for my AS/dyspraxia/MH probs! XKL

[daniels-mum]

Its just not fair that people have to struggle so much for DLA, when they clearly need it, especially when you think of the current situation when MP's are claiming for getting moats cleaned out amongst other just as ridiculous things, yet people who really need it like Smiley1590's mum have to fight tooth and nail for it when they are entitled all along. It will certainly be a life line for me, whilst I am not living in poverty we dont have a high income by any stretch of the imgagination, to say we have 3 children, it will make a big difference for the little things if you know what I mean like going to the sea side for the day and treating D to a DVD, things like that.

 

Without a doubt the biggest struggle I have had so far and still, is with regards to obtaining diagnosis for my son. This has caused me more stress than DLA and statement put together but I know that for others it may be the other way round and that every situation is different. The DLA has been some good news for me though and I am so glad I applied.

[Sally44]

W had our appeal today, got middle rate care, but no mobility, but we never put anything to indicate he needed mobility as he is fine walking ect!!!!

So we are pleased with the outcome, back dated from april 05 to april 07.

Michelle

 

When you re-apply you can put in certain information and get maybe lower mobility rate. We had help completing the forms, which I think always helps because they know what kind of things apply. I too would not have thought he had any mobility problems because my son can also walk. But it is also about awareness of danger, would your child run off or hide, sensory issues etc, tantrums and lying down on the floor or in the middle of the road, lack of awareness of danger eg. walking off with strangers, or climbing high and attempting to jump off etc - Not that my son does all of these!!! But these are the kinds of things you can think about.

I know someone who managed to claim a car as their autistic child is incontinent, has sensory issues to the extent that he will not use public transport, and due to all the equipment, changes of clothes they need with them they need a car to be mobile.

[Sally44]

my mum missed out on years of DLA for meas was hard and struggle to get even when diagnosed years after when we eventually recieved payment for my AS/dyspraxia/MH probs! XKL

 

Sometimes in some circumstances, if you are wrongly denied certain benefits you can appeal or get your MP involved and sometimes these can be backdated. I was wrongly denied Incapacity Benefit for around 7 years. It took nearly two years of letters and involving my local MP, but they eventually paid me IB and backdated it to the original application and paid me compensation for all the years of hassle!

 

[smiley1590]

i think my mum's disappointed it didn't get backdated to her! but even if she did appeal she doesn't have time or energy to fight with anyone at the moment! bless her! my mum can't get carers allowance for my nan or me as she already seen as caring for my twin deafblind brother! my nans terminally ill and i have AS/Dyspraxia and MH probs (depression,anx etc) she been told she can't claim 3 times even though really she does care for all of us and support us in different ways for different reasons! tires her out looking after all of us! she has health probs herself and been told DLA being 'funny' about claims put in at the moment! she asked specialist he said she probably be refused! she put hard work and effort into every single day yet like any other job well i know doesn't care for the money but she should get something for what she puts in for love,sweat and tears she's a brilliant mother,daughter couldn't ask for anything more!she doesn't see it as a job but in a weird strange way it is we rely on her support and encouagement for independence and freedom! anyone agree with me? hope so! i'm so proud she deserves an magical award! but gets 'nothing' from government as a reward! i know wrong word sorry!

 

XKLX