[From what you have said, I can see no reason why you would not get any DLA. DLA has varying categories and the data on the forms is how they will proceed with your claim. The advise we were given, was to think of our daughter (who has severe quad CP) in between her best day and worst days. However also be honest with yourself and put everything down that is different (when we did this the first time it was realy hard for us as we were having to acknowledge how bad our Madi was) however we were initially given the medium rate (when Madi was 3 months) and as Madi grew and started to need care during the nights we appealed and the payment was increased to the higher scale. We now have a son who to date has no problems and it has really brought home to us how much extra care Madi needed (and continues to need).

I guess what I am trying to say is put it as it is - not what you hope it to be, not what you think others think it should be but how it is.

Hope this helps.

we are wondering if we will get any thing.
jessica was born 28 weeks & is a twin. her brother is healthy & so different to jessica.he runs round non stop & is full of life.
jessica can walk & starting to try to run but she falls over time & time.
she is wearing a splint on her left leg for the turning of it & they say she will wear it for about 7 years.
we got a blue badge for the car.
she does need extra help compared to her twin, she is slower than him in doing things but is very bright for her age.
i know from reading other posts we are very luckily.
i'm not worried of we do get DLA but we would like to have it for her to put by encase she needs extra help when she is older.
we also have to buy 2 pairs of shoes for her while she is wearing the splint as her feet are then 2 different sizes very expenisive at £30 a pair

I think it is worth applying for dla for Jessica as you have said there is a marked difference between what she can do and what her twin can do not to mention the extra cost with shoes etc.

I have filled out a number of dla forms over the years and have always been told to fill them in based on what a bad day is like. It might be worth talking to your gp or whichever medical person you put down on the form to tell them more about Jessicas condition and problems so that they know you are planning to apply for it.

Don't be afraid to appeal the decision if you don't get dla awarded first time round. Often it doesn't take much to get the decision to rule in your favour. I found my local CAB very helpful when I needed to do this once.

My only other advice would be to photocopy everything before you send it (both forms) then you have the forms there to use again when you have to reapply and also it helps to have copies if you need to appeal.

Good luck with it.
Helen

we heard last week that jessica will get the carers allowance until her 3rd bday & then the mobility allowance as well then for 2 years & then we will have to apply again.
it's great that we get it but on the other hand i was very up set to think she is classed as disabled.

It is really upsetting when you are advised that your child is classed as disabled. I know that when we first applied for dla, I honestly believed it would only be a short term provision and that Aidan would catch up with his twin brother. When the award was received at the higher rate I was shocked and upset. Having said that, the money is extremely helpful and goes a small way to helping with what is needed.

The care component continues until 3 and the mobility component can begin when your child is 3. Don't wait for DLA to contact you - they don't BUT it is backdated. The mobility component can also be used towards a motability vehicle - a small bonus. After we received ours earlier this year, my mum said how she was in her 40s before she had a brand new car - I obviously told how her how unlucky she was that she couldn't recoup the fantastic benefits of having a disabled child!! The black humour that cushions us all, I think!

If you haven't filled in the form yet or are just looking at it with dread, Cerebra publish an excellent guide.

Hope this helps

I have filled the forms in and am waiting, but it feels like i am wait to here if my son is alright or not - I don't think its about the money for me but it sayd if he is normal or not. of course hes not but i like to think that hes not that bad so won't qualifi i am sure i am setting myself up for a drop but what else can you do, i don't know how long it takes to get an answer but i sent them off middle of oct . do you get cares allowance too?? should i fill forms in for that? i have no idea about these things.... if anyone can fill me in that would be great, i don't understand about the change at age 3

also do you know what age you get a super buggy from??

it was nice to share what you are going throw, it makes me question myself.

thank you

Just thought I would let you know he got middle grade it came in the post today, it was horried seeing it in black and white but i guess its just another thing to get passed, i am not sure how it states how bad he is or is not... apart from getting money i am not sure what else it mans

Hi

I am in the middle of filling in the DLA forms but they have sat here for weeks because I can't make the decision if I am happy with what they say or not. I keep saying I'll sleep on it but i really should get them in soon. I had help from one of my daughter's therapist who painted the worst case but bit's are making me feel a bit uncomfortable.
I used to claim the carers allowance but recently had to pay some back because you can earn up to around £80 per week but if you go over you have to tell them. My employment was a bit erratic; changing jobs, only working term time, a bit of overtime here and there. Anyway i went over and had to pay back a few hundred pounds as i hadn't thought to check so i don't bother any more. If you try to work at anything like a normal job even school hours only it is easy to break the limit so either you don't work (i would go mad if i didn't !!!) or you claim. It's hard to follow the middle ground.

I agree, its so hard to fill the forms out in the first place, it almost feels disloyal, as i don't mind any of the additional support that he needs. but I am putting it by for him, if he ever needs any thing and we havent got the money then i know he will have it to fall back on, and we don't know what the future holds but when he is a billionaire and has a great career (Might be dreaming a little on his behalf) I can always give the money to charity. and thats how i cope with it, cos part of me really dose not want it.

has anybody else got a two year old that would like to chat it would be great to hear from you

dla forms are horrid, and you have to be prepared for them.

we spend all our time looking at our children and seeing all the improvements that are happening, however small, then this form comes along and wants to know how bad things are! No wonder they make us all feel so bad!

the thing to remember is, its a piece of paper that will bring o ur children what they deserve. We know they may be disabled but they all have masses amounts of ability. And that ability will get more as they get older ( i promise you it will even if its slight it will get more)

Dont be ashamed of the stigma of disabled, be proud of it. Yes my daughter has cerebral palsy, spastic hemapligia, and we are both proud of it. She has a special hand, which doesn't work very well at all, her gait is wobbly and her balance is rubbish. Her spine is curved, and her speach is slow and needs help. She still wets herself and she has trouble feeding herself and she cant dress herself. But she is wonderful and she can horse ride and she can ski and she has just started snowboarding. She can ride a 3 wheel bike and a scooter. She can use a computer with a mouse.

Every day she surprises me!

Dont let the dla forms get you down, they are a means to an end, even if you just put their money away in a bank account for them when they're older.

And always remember Disabled doesn't mean UNABLE!!!!

I have a 4 Year old son with mild spastic /diplegia who is now in full time education, Can anyone tell me if they have had thier DLA dropped due to being at full time school as Oliver needs have not changed much but he is ibviously not with me for a majority of the day. Oliver attends main stream school as he can do all things a child of the same age can do but alot more slower and awkward, he has daily physio, Hydro twice a wk along with various other appointments, also had Botox, The reason i ask is that i will have to go back out to work this i am not worried about its just fitting all of olivers needs in as well as my 5 month old and 7 yr old so dont know what to do for the best as my little boy comes first.

hi DLA only changes if the needs change.have you had to renew your claim recently,if so maybe you didnt write certain things that you put down last time..i know they write to the peds or profesionals that you put down on the form,and may-be they have put something on the form.if nothing has changed with your situation i would ask them to review it.its very strange but i only get midde rate,and my son still aint in school full time,and i had to give up work cos he was either ill or off school,but my friend down the road,her daughter is in full time school her only hos app is peds now and again she as got a illness but not as ill as my boy and she get the full wack for her daughter..which i think the system is wrong,but thats my opinion.I
THINK ITS GOT ALOT TO DO WITH PLAYING THE SYSTEM. i dont know if this is a help but hope it works out for you.. take care

Hi tjsmith

The situation you face relating to DLA is common as they have changed the qualifying conditions and the length of the award,

Which part of your sons DLA has been dropped? I have not heard of DLA being dropped because your son is in full time school?

I suggest you check you award letter from DWP it may explain the reason why the award has dropped and from when. If you are able to give more details it would be helpful. In the worse case it may have dropped as a particular component has ended.

I am willing to help in anyway i can,

Andrew

Hi ,My daughter has sdcp and wears splints cant run or walk as far as her peers and has recently hadbilateral femoral derotation on both hips and tibial derotation on her left shin,this was done 4 wks ago,she has been in at home non weight bearing,in a wheelchair,in 2 wks time she will be back in hospital having intensive physio for as long as it takes to get her walking again,she wont necessarily be as able as she was but she will be straighter.Before this happened we were reassesed for DLA,I have told them it as it is and we have been refused any at all,my daughter used a wheelchair before the op ,am I stupid or is this unfair? we appealed and were still refused,I have had to stop work to look after her,just a little would help,it is the principle that really annoys me,its as if my daughter has nothing the matter with her,she has struggled and struggled these last few weeks and will struggle some more. opinions appreciated!

hiya

DLA is awarded with a time scale. Daniel got his when he was about 10 months old and it will last until he's 3 years old and then it will be reviewed again, to make sure he's getting what he's entitled too.

Some children will get it awarded for life,it all depends on how the child is.

hth, wendy xx

Can anyone tell me if its normal to have DLA reviewed as oliver is they are writing to his consultant again as far as i am concerned nothing has changed although things a bit more difficult as he has got bigger, Oliver has spastic Diplegia he can walk but falls frequently and tires quicker than others of the asme age so we have now got a buggly board as bit heavy to carry.
Please can you let me know your experiences with DLA

Many Thanks

Hi

I would try and appeal the decision again if you can. I have had to appeal my dla once and I went to the CAB they were really good. I know it's a pain but get as much supporting evidence as you can as I assume even after all this surgery and intensive physio your daughter will still not be able to do as muchhas her peers. I'm still struggling to get back on my feet after surgery at christmas but then as an adult they don't give you very much physio at all as they don't know what to do!

Just because your daughter has had this surgery that doesn't mean she'd never use her wheelchair again things like that need to be pointed out on the dla form. And I assume this surgery although she may be straight it may not mean she can walk as far as she could or further again point this out.
Would the hospital, and the physio help support your claim it might all add extra weight to your appeal

Good luck

Helen

can you appeal again ...that sounds a bit unfair to be honest you should be getting it...have you tried to get careres allowance too..im sure you would be entitled to that and especially as you have had to give up work....

kate xx

Hi tjsmith

It sounds to me that the DLA unit is possibly contacting the consultant again to ensure that they award the correct rate of DLA for example if your son does not get higher rate care he maybe awarded it if falls quite a lot at the momemt, if your not sure contact the DLA unit to confirm there reasons for needing more info from the consultant.

Andrew