DLA

[MichelleW]

Smiley, how many years is that for? I recently sent of the forms for little one who is just 3, and wouldn't be suprised if he gets turned down - though I really focussed on his lack of speech and comunication, as he hasn't a diagnosis of ASD.

 

I'll have J's one up for renewal soon, and I'm worried he won't get it again, as he seems to have progressed so much over the last 3 years. OK, he still can't dress himself on school days, still has "accidents" . But he has made friends at school and can talk endlessly, he doesn't wake during the night, and if he does, can get to toilet and back again to bed. Even though he had night time needs before , he still only got medium rate care and low rate mobility from 5. He doesn't run into the road anymore, so I can see I'll lose mobility element altogether. Maybe I just don't recognise how different he is to other children his age as I don't know any well enough to compare him to.

 

 

It took me 7 solid hours to fill in little one's forms so expect it will take me even longer to do J's!

[di30]

Hi Michelle.

Good luck with the DLA .

Don't give up like I almost did when I first claimed and was turned down, we got there in the end.

 

My son will be 13 in January and I'm still doing things for him and he still cannot go out alone, I can go on and on.

 

When he was first awarded in Sept this year they were both low rate components originally awarded until 2011, now that they have changed his award due to a review they have now also extended it to 2013.

 

Fingers crossed to you hun.

 

Keep us posted.

Di. xx

[di30]

Michelle..........forgot to say, is there someone that can help you fill the form ?

Such as the CAB or similar, they are experienced at this and will take this burden from you, I had help with the review form and glad I did.

 

I would definately check this out with your local CAB.

Again good luck.

xxx

[westie]

MichelleW how did your claim for your 3yr old go? My almost 3yr old has just been diagnosed ASD (and he has hyper mobile joints and low muscle tone plus some motor skills delay) and they advised me to apply but I am unsure as he is so young I am thinking they will say all 3yr olds need constant supervision, and lots of help? Suppose I should just write as it is and see what they think. People who advised me said they would support me and they cannot get dodgy advice from school about him not needing any help!

 

My other son gets middle rate care and lower mobility too but he has no problems at night. I would think again about mobility component as it says they need to be supervised when out and about. Well even though he does not run on roads, does he get angry or mad or misunderstand situations which may mean he is a danger to himself or others> Could he get lost easily, and if he is really angry or frustrated are you sure he would not run onto road??

 

Hope if you have reapplied you get same rate.

Regards

D

[westie]

By the way if anyone has any tips on applying for someone of such young age with ASD/ motor problems please can you give some advice, or direct me to other threads which discuss same topic or other webs which may give advice though do have a number for local group who will come out and help.

[Storm]

My ds got dla at age 3yrs. He got middle care thats just for ASD. Now gets middle care , low mobility.

my other ds at 4yrs got high care,

However my niece aged 5 has ASD and hyper mobile joints, has been awarded dla high care and high mobility untill she is 16yrs,

Edited March 1, 2008 by Storm

[Caffeine Junkie]

It is possible to get dla for children under three - my son was awarded higher rate care at 2 years and 6 months of age. From reading all the threads on DLA, I know we where lucky to be awarded higher rate care immediately. When my son was 5, we then got awarded higher rate mobility - with help from a welfare rights adviser.

Edited March 1, 2008 by Caffeine Junkie

[westie]

Thanks storm and caffeinejunkie for your replies. I am still thinking about it, he has just been diagnosed and it has muddled my brain a bit so still not sure what to do. May leave decision till after next appointment at CDC when he sees consultant and OT again.

[westie]

Have just done "first draft" of the form and given it to a lady who is a family support worker who has a duaghter with AS and lots of experience helping people with DLA forms. I found it harder than filling in the one for my other son as yongest is 3 but wrote about his co-ordination problems due to hypermobile joints/ low muscle tone as well as autism and listed all the things he needs help/support/supervision with because of these conditions... waiting for feedback from her then will get the form filled in properly and sent off. I am also sending medical reports I have from CDC which are discussing assessment and difficulties they observe and recommendations they have made.

 

One question: it asks for your childs NI number. Did most of you find this out or leave blank. I don't know what C's NI number is, and not quite sure where to find out. I think you have to ring jobcentre or Social Security office, is that right? Does it slow down process if you don't put it in??

Thanks

Edited April 25, 2008 by westie

[clair]

Childs NI number, just leave blank if it is first time claiming. If it is second time then the number would be on any letters you get back from DLA.

[westie]

Hi, just to let you know I have just had a letter and we were awarded middle rate care for 2 yrs (until he is 5) so it was well worth filling in the form. I have put in a claim for carers allowance too as I gave up my job to look after him (and other son). If I get carers allowance, I should also be able to claim mortgage repayments insurance where they will pay 12mths mortgage, which is also very good news financially.

 

I am really pleased - have plans to take him to tumbletots and swimming etc to help his co-ordination etc with the money

[madmumof5]

well my claim for ds2 has been refused even tho the bits I did fill in (I filled it in online and sent it instead of saving it ,I meant to go back and fill some parts in with more info) show he needs more care than the average 10 year old. They are saying its not an hour or more when it blatently is ,I have spent 7 years fighting to prove he has a problem I really dont have any fight left in me to appeal against this ,dont knowwhy i even bothered applying

Edited August 13, 2008 by madmumof5

[Mumble]

I've decided given all the problems I'm having at the moment that I'd look into DLA, predominantly not for the money but because it will act as 'proof' of disability and help me get the support I desperately desperately need plus I'm going to be out in the big bad world all by myself in a year and I'm utterly utterly terrified, so getting anything in place now to cling to might help.

 

But I've hit a major stumbling block early on - all of their contact is made by telephone (or text phone for the deaf). As a direct result of my ASD, auditory processing issues, anxiety etc. I am completely unable to use a phone which is severely disabling - if it weren't for email/text I would be much more disabled than I currently am - if the internet/email goes down, even for a day, I am totally cut off from the world. So what do I do - the form asks for a telephone number and I'm terrified of putting anything in case they phone (ringing phones without me knowing who/why are a surefire way of sending me into meltdown), and what if I have to contact them?

 

Second question - when they ask "how long have you had this disability" is the answer "lifelong" even though I wasn't dx'ed at birth? - I've always been autistic, I just haven't had that label.

 

Sorry if these are stupid questions - the forms are hardly ASD friendly and I'm supposed to be a successful uni student :wallbash:

[ScienceGeek]

Second question - when they ask "how long have you had this disability" is the answer "lifelong" even though I wasn't dx'ed at birth? - I've always been autistic, I just haven't had that label.

 

Sorry if these are stupid questions - the forms are hardly ASD friendly and I'm supposed to be a successful uni student :wallbash:

 

Hey Mumble I'm not sure about the phone issue, they never phoned me at all if that helps. As for "how long have you had this disability" I put lifelong as it has always been there just nothing had been diagnosed before.

[JsMum]

well my claim for ds2 has been refused even tho the bits I did fill in (I filled it in online and sent it instead of saving it ,I meant to go back and fill some parts in with more info) show he needs more care than the average 10 year old. They are saying its not an hour or more when it blatently is ,I have spent 7 years fighting to prove he has a problem I really dont have any fight left in me to appeal against this ,dont knowwhy i even bothered applying

 

 

Hi, I would urge you to explain the situation with the DLA admin and express how it was a mistake to have sent it in as it was, that you had also sent it when you ment to have saved it, explain in detail the hours/mins you do give support, attention, supervision to your son, many of which are times at least 2 or three, and more if they require further assistance.

 

If it does go to tribunal, then go, the panel will have a number of doctors of whom will understand (hopefully) Autism/special needs and know just how many hours are going to be used caring for you son.

 

I would go all the way, it is your sons right, it will assist and support him.

 

JsMum

[madmumof5]

Hi, I would urge you to explain the situation with the DLA admin and express how it was a mistake to have sent it in as it was, that you had also sent it when you ment to have saved it, explain in detail the hours/mins you do give support, attention, supervision to your son, many of which are times at least 2 or three, and more if they require further assistance.

 

If it does go to tribunal, then go, the panel will have a number of doctors of whom will understand (hopefully) Autism/special needs and know just how many hours are going to be used caring for you son.

 

I would go all the way, it is your sons right, it will assist and support him.

 

JsMum

 

Thanks ,it just seems a constant battle ,do they think we do this for fun trying to dowhats best for our children?? I guess they dont have AS kids

[alisonatt]

can anyone give me some advice, my son is being assessed for aspergers and adhd,my partner is on a low income and though i would love to work its hard for me to get a job.jay our son likes to know i am at home and his school is always sending him home or excluding him for a week, so cannot see anyone who would let me just take the time off work that i would need, jay needs a lot of looking after even when walking to school, though he can walk ok, he does fall over a lot and we always have to go same way, he just has no sence of danger when he is out and about, i not sure if you can put in a claim for dla as they are only at the stage were he is being assessed and i know thats can take some time, if there is any advice anyone can give me i would be grateful <'>

[Flora]

Hi Alisonatt

 

Your child does not need a diagnosis to receive dla. To qualify for the care component you need to be giving care over and above what a child of the same age would normally require. A diagnosis of ASD does not automatically entitle you to DLA anyway, especially when the child is young and is of an age when most children need lots of supervision.

 

If you believe you are providing care and supervision over and above that normally required then you can apply without having to wait for a diagnosis.

 

Flora

[alisonatt]

thanks flora, i can but only try and see if i get dla, thanks for advice <'>

[JsMum]

Js DLA renewal forms have dropped throw the post,

 

Ive been working on them throw the week and its only 36 pages throw, and still a load more to get throw,

 

I was then awake into the early hours because writing about our childrens special needs and the changes throw the years makes it soo real!

 

J isnt in education, we have moved, and support is scarce, its horrible writing it all down because it hits you like an rough axe.

 

I wondered if anyone esle feels emotional when doing the forms, its really draining me too, I have to also print the pages twice now too because you cant save it on pdf, like I did a couple of years ago so its taking a lot more time.

 

I find the whole reapplication really worrying too as your worried it wont get reawarded or reduced, yet things are more complicated than before, its like your at there mercy, I wished we didnt have to keep raking up the past the present and woundering what the future is in these forms as they make quite bad, though we know it is at times when were staring on the bathroom floor tiles with splashes of tears because were in dispair and wondering how on earth were going to make it throw the night, so we know how bad the situation gets!

 

writing it all down made me feel quite alone too, as social services do very little now, and Js at home now until his education is sorted out of which I will have to get all emotional again throw sending him to residential school, that isnt easy either, nothing is easy, but these forms sure make you see and feel angry about your situation.

 

Well Im just sharing with you guys what its like going throw these dreadful forms, nearly there with it so not much longer to go to DLA and worry again for the reply, so its not like I can relax after sending it, however I will try.

 

 

JsMum

[zaman]

J's mum - yes, I know exactly how you feel as I've just done the renewal as well. I kept dipping in and out of it, until it was taking up too much of my head space, so I just blitzed it (but needed a packet of biscuits to keep me sat at the table).

 

It is really upsetting to share such personal, intimate issues with a complete stranger. Who may or may not translate those issues into money.

 

Does anyone know how often we need to do the renewals?

[JsMum]

It again depends on the disability and weather its physical, medical, mental.

 

Js DLA have been three years, then two and now throw renewal, I guess it depends on weather they can progress or get better, J is a long term disability so they just renew it every few/couple of years, I know some parents children are awarded DLA for four, five years, depending on the needs of the child and what level of the care and the level of the mobility they may award you, hence sometimes they reduce it or withdraw the award altogether.

 

JsMum

[brooke]

js mum <'> know just how you feel. I have just recently renewed my sons dla and i found it hard. I just did a little bit at a time which helped but i did cry at one point it makes me feel sad having to write down every stuggle my son has. The good thing was though that we didnt have to wait long before we got the result. <'> <'>

Edited September 29, 2008 by brooke

[Spike P]

Did anyone see, I think it was the news, the other morning where they were talking about unclaimed benefits and there was a boy with Aspergers and his mum and she was claiming an allowance for looking after him. They were saying that people weren't aware that they could claim for conditions like this. Is anyone else claiming benefits for their children with Aspergers?

 

Lisa

 

 

HI, If you claim for DLA you are better off asking a charity like MIND to help fill the DLA form in as you will invariably 'paint' a rosy picture of your child. We receive DLA for our ASD son and we also have applied for a ''cinema' card which allows us to get in the cinema cheaper, to qualify for that card we needed DLA, Also we get a leisure centre card for the same reason !! Oh and the best of the best !! We get into places like Legoland and get a special stamp and go through to the front of the rides so our wee man does not get stressed. Regards, Spike

[Enid]

J`s Mum. will you still get DLA when he`s at residential? Enid

[JsMum]

J`s Mum. will you still get DLA when he`s at residential? Enid

 

 

 

From what I already know, is that Js DLA, Income Support additional benefits, Carers allowance will be deducted the days he is at residential school.

 

Aparently I have to fill in a sheet with dates he is home from weekends and holidays as those days he will be given his benefits.

 

I am not sure how they work the rates out but carers allowance telephonist have reasured me that its easy to get use to the arrangements of residential school.

 

We sent off his renewal forms last week, we have a confirmation letter to let us know they have recieved his renewal pack so that is quick.

 

Just waiting for the outcome, as you really dont know how the claim may go.

 

JsMum

Edited October 12, 2008 by JsMum

[lynyona]

Agh no kierans DLA forms landed in the post box this morning do they send them that early because it takes you all that time to fill them in they couldnt have come at a worse time i have just been given a new position at work and have loads of course type work stuff to do so im going to have to juggle them both i think i ll write the dla out on paper first then transfer it in case i make any mistakes and i will photo copy it this time i forgot last time i wonder does anyone compare your answers from last time they must somewhere along the line.

[Aginoth]

Our son (KezT is my better half btw) E was diagnosed in January with AS/HFA, and I immediately applied and got him Medium Care Rate. He was 7 then.

 

Following discussions with our NAS Earlybird course leader we found we should probably be getting Mobility too as he can't go out alone safely.

 

Also I now think he should be getting High Care Rate as we do have night time issues. So I've slogged through all the form again today in hopes of a redecision. He's 8 now so hoping that may also have an influence on the decision.

 

Not a novice at this unfortunately, I myself get Medium Care and High Mobility due to Psoriasis, and Psoriatic Arthritis....at the 3rd attempt (1: nothing, 2: med care, 3: got what I am now on)

 

Here's hoping 5th time of DLA forms for me and mine in 3 years

Edited October 24, 2008 by Aginoth