DLA

[mum22boys]

Hi Blue-kat,

 

I'm very pleased you managed to get your son's DLA sorted out. It is always good when others on here get it and we do deserve it for our children.

 

I agree with you about keeping them informed. we are going for reconsideration and i am still waiting for the school report from the DLA. I have kept ringing them to tell them I will not be submitting my extra evidence until i recieve it. i ring once a week so they can't say they haven't been informed.

 

I have had my mum write up an account of the way m is and the extra time it takes us to do anything. I will also submit the shop managers report. Also just before half term M's teacher informed me he has been put on an IEP for his social and communication problems so I will be telling the DLA that they think there is a problem. I suspect it was their report that got M's refused and I have told the head that and also what I think!!!!

 

Anyway - good news for you.

 

mum22boys

[mum22boys]

Blue -kat,

 

Forgot to mention that I have asked a friend of mine who has a child the same age to write a letter for me. She has seen M in action! Also has seen the problems brought about if something has occured different to what he was expecting so i hope that too will help my claim.

[lindy-lou]

i have sent in a letter from our lollipop lady with my appeal!!she see's indy running away from me and into the road all the time,so why not,also had fantastic letter from my consultant,plus my own reams and reams of paper,waiting with baited breath now

[mum22boys]

Lindy-lou,

 

Sent my bits in too.

 

I considered asking our lolli-pop lady as she saw M in a huge tantrum the other week. When I approached her however I changed my mind as she started telling all about E numbers in food. She could see there was a problem but some people love to compare and all she kept going on about was her son when he was little and how changing his food was a miracle. Decided not to ask her.

 

Have got lots of good info and letters etc that i sent in - just hope I get somewhere.

 

Hope you also get the answer you want too and soon.

 

mum22boys

[ann11]

Hi There,

 

I suffer from Aspergers syndrome and find it extremely difficult to be organised and I am very forgetfull.

 

For a living I make dance music and sell it via a record label, however there is no work until late summer, the record label did give me a sub but i have spent all the money

 

So i've decided to claim job seekers allowance and housing benefit to pay my rent, however because i keep forgetting to go to sign on they have now stopped my benefits.

 

Is there any other benefit you can get where you dont have to sign on every 2 weeks? I also do not want to find another job, the benefits are a temporary requirement until i go back into music.

 

I know I should be asking social security this but I find it impossible to communicate with them.

 

Regards

Dave

 

The fogetting appointments/dates thing. Over the years Ive learnt to overcompensate. If its an important date like that then make lots of reminders. Notes on the front door BIG ONES so you dont walk out and forget if theyve been there a few days. If you have mum dad family (i dont) ask them to ring you up and remind you AS WELL as the notes EVERYWHERE, stick on walls whereever you notice them. Mobile phones use the alarm to remind you the day before If you havent fogotten. Leave notes in pockets. PCs if technically minded. GET A DIARY. I often forget even then and sometimes write dates in wrong days!! but with other methods to back the diary up it works -- I dont forget to Sign On or I would go hungry.!! Check and double check.. Try not to rush and take time going through Diary and paperwork so your not flustered and you are prepared at any interviews.

 

 

Its harder for us and it takes a lot longer to get things done and organised that ordinary people take for granted. Its just a fact of life.

 

PREPARE for interviews. If you have to talk to yourself /write down answers to all possible questions they WILL ask you. Dont just say you forgot.. Write out what AS is for others. Tell them the problem --- short term memory SLow recall etc. If you can get them on your side then your half way there - they will then be more willing to help you. Dont expect them to be able to read your mind. Its hard but just TALK TO THEM. If you have trouble here (I DO) Get an advocate ring up the local hospital any number and ask about ADVOCACY SERVICE. Tell them ' i need help talking to social services- I can not do this on my own' Go to the library explain what you want often they will do this for you. Someone will then support you in this. Above all DONT GIVE UP you are entitled to your money. Be quick dont delay. Dont stop after one phone call turns out not as expected or you dont get the right person or number. If you dont get the right number first time TRY AGAIN. Keep phoning asking different people until you get what you need. Its the same for all of use whether we have AS or not. Its a real effort to get through to the people you need to help you.

 

I have found the Disibility Advice Centre good Citizens Advice not so good. It just depends on who you get to talk to on the day. JUST KEEP TRYIN.

 

MAKE LISTS LOTS OF THEM put them in a bag by the door ready to go the next day.

When you see someone and fill in the forms at the Benefit office PHOTOCOPY that form at the library and keep it, so you know what to put next time. There will be a next time. GET A FILING SYSTEM/CABINET this is vital to getting by in life -not just for AS people.... spend an evening labelling everything eg House . electric , telephone BENEFITS. File away and forget about. Get a ROTODEX for phone numbers Then its there and you wont have to search for important phone numbers again. It doesnt even have to cost much.

Make a cv of your work life DATES you did things References where you lived and up date them. Or like me you will have to spend a day going through old tax slips to find out where you lived if you ever apply for a Criminal Records Bureau check!

 

Second hand shops or instead of metal filing cabinet. buy some big box folders and plastic pockets. Different colour boxes or stickers on them will help identify what is in the box. Sounds realy basic stuff but it works. And at the end of the day no one else will do it for you its a realy hard lesson to learn but its a great feeling when you get organised!!

 

 

 

[lynyona]

Ive had that many people telling me lately that i should look into the DLA s decision to have dropped kierans care from middle to low(hence i losT my care allowance) I am going to see the CAB tommorow.I still argue my case that when kieranwas at school all day he qualified for middle care and now he s left he soeant need as much care as he used to?If i ned to go out anywhwere(kieran doesnt do out) i have to have some one to babysit him usually his 16 year old brother which isnt fair on him he s got a life of his own and isnt responsible for kieran i am.also iwent out to work when i lost my carers allowance and with the current situation with kierans mektdowns etc i feel i cannot carry on doing so,i will aso ask her about any financial help available to us if i do

[UltraMum]

Just got our decision today - thanks for all the help on here

 

 

upped from middle to high rate care!

(must have been the 10,000 words I typed!)

... which is what I think - with hindsight - we should have had all along - all those nights ....

 

 

only for two years though ...

still - I've saved all the typed stuff so it'll be a case of adjust and then cut and paste next time ...

Edited March 25, 2006 by MotherEve

[Kathryn]

Well done, MotherEve, I reckon you've earned it!

 

One benefit of filling in the horrendous DLA forms - once you've done it, any other form filling is a complete doddle!

 

K x

[nellie]

I found this form recently when filling in my son's DLA form and found it a huge help. (He was awarded lower rate, which we think is reasonable for his needs).

 

My son, 25, has great difficulty relating his needs to others, this form made it easy for him. It's in a tick box format which makes it very easy to fill in, lists the difficulties someone with ASD might live with and it helped him focus on the important issues. It's meant for adults with an ASD but useful for parents/carers too.

 

DLA application - supplementary information (DOC)

http://www.nas.org.uk/content/1/c4/77/90/D...application.doc

 

You may have difficulty downloading the page, if so, you can find a link at the bottom of this page.

 

DLA - guidance for adults with an ASD completing the form

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=300&a=7788

 

I also used the DLA guide below and found it very useful.

http://www.bhas.org.uk/

 

Nellie xx

[westie]

My son is currently getting middle rate care DLA (was awarded for 2yr period). We have recently reapplied for DLA as the 2yrs is up at end of july. Got a letter today which said that from end july he is entitled to Middle rate care AND lower rate mobility - this time for 3 years

That is great news (glad the time period has been extended because the form takes so long to complete!

 

 

ps wanted to add that we sent in a lot of supporting info such as doctors letters and annual review/ assessment forms that were filled in as part of his statement as these clearly stated the problems he has, and it backed up what I had put on the form. Also we asked the school teacher to fill in the page in the form for someone who knows the childs problems. This saved them having to write to the school. I would recommend this to anyone else who is applying, if it reflects what you are writing on your form. They do not always contact the people you want them to but sometimes write to your GP (for example) who may not have even seen your child and have no idea what their day to day problems are!

Edited April 24, 2006 by westie

[lisann]

HI ANYONE WHO REAPLIED IN FEB HEARD ANYTHING YET WE SENT OURS IN BACK THEN BUT NOTHING.IT DOESN'T RUN OUT UNTIL AUGUST SO DON'T KNOW IF THAT'S WHY?????

 

 

lISA X

[westie]

Did you not get a letter saying that they had received your application and that you should hear again within 8wks?

We got a letter when we reapplied, which was Feb. we reapplied around that time and got decision within 8wks as promised. I thought even if they had not decided they should have sent you another letter saying they had some more chasing to do...

 

Also they send us form in Jan. and because we did not fill it in after a few weeks (actually a couple of days after we sent the form they sent us a "reminder" letter - have you had anything like that which would suggest they did not get the form???)

 

Perhaps a phone call to them would be appropriate if they have not contacted you at all

 

I sent the application by recorded delivery by the way so that I could be sure it had arrived - it took us ages to complete the form and I did not want it to get lost!

Take care

Debbie

Edited May 20, 2006 by westie

[lisann]

Hi Debbie

 

We got a letter saying they where looking at the application about 10 weeks ago now I phoned them and they said it was being processed.I didn't think it would take this long could it be because it's not up for renewal until August???

 

Love Lisa

[lisann]

Just been told off hubby DLA has been awarded today don't know what level fingers crossed for us !!

 

Lisa

[jb1964]

Hi Lisann,

 

Keeping my fingers and toes crossed for you - had mine through last week and I couldn't believe what they've awarded - I only sent it at the beginning of May thinking that we probably wouldn't get anything (not that money makes any of the problems lesser - I'd sooner have my daughter be able to manage as well as any 12yr old - but it definitely helps).

 

Take care,

Jb

[cmuir]

Cheers Jericho.

Trouble is,...with my little girls diagnosis being 'ASD' but not pigeon holed into any one condition on the spectrum it may make us illegible. She misses the criteria for Aspie because she does not have an obsessional hobby/interest.

Elefan

 

 

Hi

 

I applied for DLA and was successful even thought my son did not have a diagnosis at that time. I photocopied reports which said 'somewhere on the spectrum', but that was it. A few weeks later (just 05/05/06 we got a diagnosis). I had numerous other reports as well as character references, etc from nursery manager, care worker etc to back me up. But you can get DLA approvided without a diagnosis and with a general ASD.

 

Best wishes

 

Caroline.

[lindy-lou]

Well done girls on getting your DLA Dont forget to reapply for your carers allowance and inform tax credits of your award.

[shortie]

sent DD's DLA application on 4th of may,got a letter saying they recieved it on 8th may,then had phone call on friday26th asking about DD's sleep and was told she's definately been awarded,will get letter in 7-10 days,just not sure what rate yet but i was really shocked at how quick they were as i've heard alot of mums saying they wait months,will keep u all updated when i get letter <'>

[lotty]

my middle childs aplication was refused on the grounds that he should have sleep problems and incontinence problems....I applied because he had these problems. they had contacted school and school had told them he is fine and has no difficulties.

my eldest gets higher dla, with aspergers, but my middle is being assessed now, possibly bipolar. he is much more difficult and complicated than my eldest so i am confused. i dont want to go to a tribunal do you think that when he gets his dignosis i could apply again??? i need someones opinion please

[Flora]

lotty it's probably worth reapplying if you find that you are providing much more care for him than would normally be needed. I've got two boys on the spectrum but I haven't applied for DLA for the youngest one because at the moment apart from the usual I don't feel like I'm providing a great deal more care than the average 9 year old. When he's older I may feel differently.

 

If you think your son deserves DLA then you should definately apply again. I don't think it matters if they have received a dx or not when you apply.

Edited August 19, 2006 by Flora

[lotty]

yes i think your right, the school let me down i think because accademically he is fine, his dad has bipolar. its not that i am bothered about the money, its that they think he ok..i will wait a bit i have an assesment with social services coming up they might be able to help.thankyou x

[Flora]

lotty, if you read through the DLA thread you will see that almost everybody gets let down by their school when it comes to applying for DLA. When I saw the form that the school filled in for the DLA for my son you'd think he'd never had a problem in the world. My son did get turned down but I asked them to reconsider and sent loads of extra information; within 4 days they'd reconsidered and awarded him higher rate care until he's 16. They did tell me when they rang me that they'd gone by the information from the school when making the original decision. I don't know why they go to the school for information. I asked them to go to CAMHS but they didn't.

 

Good luck

Edited August 19, 2006 by Flora

[lucky]

Hi everyone. I've not posted on here before, although I've been a regular lurker for sometime! I felt compelled to add something to this thread now, because our application for DLA for ds (aged 5, diagnosed mild ASD last May) has been turned down and I'm absolutely stunned . I used the Cerebra guide to assist me in completing the form, and someone who has assisted others with the form looked through it for me. It seems like, in common with a lot of others on this thread, ds' school has let me down. From what DWP said, the school have made it sound as though he has no problems at all!

 

Although I've told the DLA helpline that I want to go for reconsideration, I don't know if I've got the fight left in me to do that. I've had a lot of problems coming to terms with his diagnosis, and this knock back has left me doubting things again. I've just started coming to terms with his ASD, I've started going to some local support groups, etc but now I find myself wondering where he/I belong. It's almost as if I've said "he does have ASD", but the school and DWP have said "no he doesn't"!

 

I have absolutely no idea where to start in gathering extra evidence - where do I begin??!! I need some help here - I just feel like throwing in the towel when it comes to getting DLA and crawl quietly back to my corner

 

Lucky

x

[lisann]

 

Just a quick update recieved our DLA got the high rate care and low rate mobility was over the moon. Doesn't change the fact Char has ASD but makes life a little easier and with the mobility can get around with him in taxi now without having to pay for it myself.

 

Lisa

[Flora]

I have absolutely no idea where to start in gathering extra evidence - where do I begin??!! I need some help here - I just feel like throwing in the towel when it comes to getting DLA and crawl quietly back to my corner

 

Lucky

x

 

Don't throw in the towel. Write a 24 hour snap shot of what life is like for you son. From the minute he gets up to when he goes to bed and through out the night. Put in every single detail of what causes him problems and the help he needs with them (even things like cleaning his teeth, cutting up food etc etc). Also if you have any family or friends who are involved in his care then ask them to write a statement of how difficult things are. Send it all to the DWP with a written request for a reconsideration. Don't give up.

Edited August 19, 2006 by Flora

[shortie]

got DD's DLA today,shes been awarded high rate,and it took less than 4wks to sort out so i'm really pleased

[lotty]

I phoned the dla today for an explanation of refusal, they said it was because of the information from school. i was shocked by what they had written and explained that my application was based on night time care, personal care. how could the school be so unhelpful. my son wont eat at school and its driving me mad i dont know how to make him eat at school. the headmistress said he doesnt need any extra supervision, there are only 24 in the whole school, thats the infants and juniors.. how can they not notice these things, especially when i have told them my worries. anyway they will look at the claim again based on the information i gave them today..

Edited June 5, 2006 by lotty

[jb1964]

Don't throw in the towel. Write a 24 hour snap shot of what life is like for you son. From the minute he gets up to when he goes to bed and through out the night. Put in every single detail of what causes him problems and the help he needs with them (even things like cleaning his teeth, cutting up food etc etc). Also if you have any family or friends who are involved in his care then ask them to write a statement of how difficult things are. Send it all to the DWP with a written request for a reconsideration. Don't give up.

 

Lauren

 

That's what I did too, it was over 5 pages long and I itemised as much as I could. I gave a brief description of her medical history from birth, and then a few lines on ASD (AS) and then broke it into headings of

• Communication/Socialisation and Behaviour problems
• Phobia's
• Motor Co-ordination Difficulties
• Sensory Issues
• School & Education
• Day to day care
• Day-time care
• Night-time care

Under each heading I gave a description of her 'difficulties' and then as many examples as I could think of of things that had happened in situations under all the headings, relating to school (breaktimes/homework/change in routine/fire-drills etc) and outside (doctors appointments/hairdressers/shopping etc) as well as at home (getting up/going to bed/dressing/eating etc).

 

I also enclosed copies of everything that I could think of - letters from the school regarding review meetings appointments - ed. psych. report for the teachers, all the correspondence from CAHMS which outlined in detail all her 'difficulties', appointments with the consultants/CPN/GP's and Paed. LEA correspondence regarding her home tuition. Together with a general information leaflet on ASD and Aspergers.

 

I only applied for mine at the beginning of May and it was approved less than 3 weeks later.

 

Good luck and take care,

Jb

Edited June 5, 2006 by jb1964

[allsetuk]

hello i was just awarded higher care and low rate mob which only starts in two weeks when he is five....im really pleased but i am constantly having to carry my son arond, cant go to town or anywhere for a walk, he either runs a short distance and then 70 percent of time needs carrying and there is no in between as is too long for standard pushchair and seems in pain physically so i am not sure the low rate mobility is right ..how do i go about getting a rethink of this ?

thanks

[mandyque]

allset, you can contact them and ask for them to look at your claim again, if you get no joy, then put in an official appeal.

 

If he is pain when he walks can you get a Major Buggy from occupational therapy or physiotherapy? It's worth asking, my dd had one for years, we've had to upgrade more recently to an Axiom 3 buggy but they wouldn't fund that so we got funding from a local charity to buy it.

 

My dd finally got awarded DLA until she's 16, got the letter last week, it's about time too, she's been diagnosed as severely autistic since the age of 2.5 years, she's now 10!

Edited May 28, 2007 by mandyque

[taggingalong]

hi all myself and my sons school are pushing to get him a diagnosis for aspergers. i have been reading all your posts and wondering should i wait for his diagnosis before i try and apply for dla for him. he is also waiting to be statemented in school. he has got learning difficulties and a lot of anger issues. anybody any advice for me on this one. thanks again for all your support.

[pragmatic]

The best advice I was given about filling in the forms - and I'll be perfectly honest, they are a nightmare - was "think of the worst day you ever had with your child for each criteria and write about that. The forms are very negative - use language that emphasises just how shocking/distressing/problematical/troubling/worrying the behaviour was to witness, and how difficult it is to find a solution. Don't hold back - it sometimes seems like a lottery whether you are awarded DLA or not, and dependent on who reads your form at the other end - make them sit up and think!

 

Lisa

 

 

This is sadly very true- I know a friend whose child is in the spectrum and I believe he's affected more than mine but she was very positive while filling in the forms and she didn't get it- while I followed the advice of another friend similar to Lisa's and we got it. It is not means tested as previously mentioned- we didn't apply for carer's allowance as both my husband and me don't work and the 'carer' needs to earn something less than �90 a week.

[pragmatic]

hi all myself and my sons school are pushing to get him a diagnosis for aspergers. i have been reading all your posts and wondering should i wait for his diagnosis before i try and apply for dla for him. he is also waiting to be statemented in school. he has got learning difficulties and a lot of anger issues. anybody any advice for me on this one. thanks again for all your support.

I think you may apply now- you can look at the forms online and see how you feel about filling them in.

 

Pragmatic

[smiley]

After months of trying to ignore the renual pack for Ms DLA... i finally sat myself down in front of the puter and got it done in a couple of hours!

 

Anyway - just found out today, DLA middle rate care and lower rate for 'getting around'. Which i think is right for M at the moment - plus..... It's until he's 16 - NO MORE BLOOMIN' FORMS!

[Matt J]

I got awarded the lower rates of DLA, but I want to appeal as I have been advised that I should be getting the higer rate, My Doctor hasnt seen me for a while and seems rather against the idea of helping and adding his comments.

 

They BA have sent out another form so I can ask them to look at it again. So I would like some advice on how I can do this.

I did put all this on my original application, they refused the first one, but I appealed and then they awarded the lower rate.

Oh the lower rate you cannot get the badge and that would be a great help to me as I would be to anyone on here.

 

Any advice would be appreciate, do PM me on here.

 

Matt

[pebbs10]

Just heard from DLA today and am happy to say I got it, middle rate care and low rate mobility, am really surprised as it didn't take as long as I thought it would

[di30]

Hooray !!!!!!!!!!!! Brilliant news and well done !

Bet you feel soooo relieved.

Now don't forget to tell Child tax credits where you will also be entitled to an extra premium for disability, this should be backdated from when DLA was awarded.

Oh and Carer's allowance, this will depend on your circumstances, if your other half works this does not affect the claim for this but I am aware there is an amount if you work they will work it by, others on here can advise you on that.

 

Anyway I am so happy for you.

 

All the best.

Di. xxx

[Kathryn]

Well done pebbs!

 

K x

[Nic m]

Well done pebbs,

really good news

Nic

[di30]

I also have some good news for a change regarding a review/supersession of my son's DLA This was for personal care.

 

He is now moved up to 'High rate care' and kept the low rate mobility, as most of you know he was originally awarded low rates for both in Sept for this claim made last DEC 06 now he will have a lovely xmas and a lovely new bedroom throughout when the electrics have been sorted out !

 

So my advice is please don't give in to anyone who have been turned down...........if you have been turned down........appeal, if awarded but feel the wrong rate was given, wait a month or so while they still get paid their given rate and ask for a review....especially if you feel things are worse than they were when you first applied.

 

 

I'm sure you will get there in the end............go for it, it your child's rights !

 

Di. xx