Filling in the DLA forms....need a little rant!!

[kelzyboo]

Well, my daughter has finally been diagnosed with ASD at the end of last month after a year of waiting and i've been advised to apply for Disability living allowance. The forms are so confusing, giving me a headache to be honest, it asks how often and for how many minutes she needs help each day and i'm struggling to answer! Anyone who has a child with ASD will know just how unpredictable they can be, they have good and bad days and its really hard to say in minutes.

At the moment my daughter can't settle in her own bed, i have to move her from mine every night and re-settle her in her own, but occaisionally she manages to fall asleep in her own and this is not needed so i cannot put on the forms that its every night, also sometimes it takes me an hour or more to settle her back down and sometimes it's only 10minutes, those questions are so hard to give a deffinate answer to.

Thank God i have an appointment with the carer's association to help me fill it in as i wouldn't be able to do it without help!!

Also, after spending most of the day making notes for the form and explaining in detail all the things my daughter finds difficult and will struggle with for the rest of her life, all of her agressive behaviour's and problems she has, i feel the need to say this; I love my daughter!!
I actually want to shout this from the nearest rooftop, after making a list of things she can't do i want to make a list of the great things about her, so here it is!

She's intellegent
She's beautiful
She has the most amazing sense of humour, she makes me laugh so much
She's loving and affectionate, when she wants to be
She's talented
She's creative
She's happy and smiley
She's unique and special
She has a fantastic personality, she charms everyone she meets!
She has the most beautiful sparkly eyes
She's incredibly well behaved

She is my sunshine, my rainbow, my heart and soul, my whole world!

Just needed to say all that, i feel disloyal for outlining her difficulties in the forms as she has so many attributes, so much going for her but i know its the right thing to do, she should have what shes entitled to and i know that.
Just wanted to say how amazing my little star was, thanks for listening xx

 

[natalies1982]

hi ya the forms are a nightmare but rememeber to put the worst days

this guide has helped me over the years u can download it or get it sent to you but i would not of been able to answer most of the questions withouth this guide

https://www.cerebra.org.uk/parent_support/DLA_guide

good luck

 

[kelzyboo]

Thanks natalie, i'm just looking at it now, i may actually be able to answer the questions now lol thankyou x

 

[Newt]

Tell me about it, I put unsure for the minutes and they phoned me and asked me how many minutes I spent doing this and doing that.....what the? I dunnow, I really don't....I look after Oscar all the time I am with him, cant break that down into minutes. Stupid friggin forms. Good for you listing the lovely things about your baby, It does help erase all the negitive that everyone keeps drowning on about.
Hugs x

 

[kelzyboo]

it does lol i felt i needed it, i had to list the things she can't do i felt i had to balance that out in my own head as i know how fantastic she is!!

Don't know what to put for the minutes, some of it im going to write all day every day and i think i will have to guess on most of them, its hard to say when you're doing it all the time you get used to it and don't really notice it anymore. Filling the forms in really hit me i think, because she has never been any different and i don't really sit down and consider all the things she doesn't do well and what i do on a daily basis, it becomes routine doesn't it.

just hope my answers are enough x

 

[AP]

The form is really negative I had someone from a charity ask me the basics and she did the rest .

 

[kelzyboo]

it is negative your right and i'm waiting for an appointment for help to fill it in but i can't have one until 1st december and thats too long, want to get it out of the way so i can relax.

Its hard to think of our beautiful children in terms of what they can't do, i know its to get them what they need but its still hard. I've made loads of notes and im about to fill them in for real, i've had a good cry, mostly because i don't see her as anything other than my fantastic little girl but i've managed it. Have to keep reminding myself how blessed i am to have her, despite the negative questions! xx

 

[Emmea12uk]

Contact a family are amazing at helping with dla forms. Someone can even come and do it with you. They are a lovely bunch of people and can help in so many ways. Google "contact a family".

 

[kelzyboo]

Thanks emmea am going to look into it now x

 

[Midnight_Fairy]

I used cereba. They helped so much. My sons claim took 6mths. An absolute joke! x

 

[kelzyboo]

OMG 6 months midnight, i was expecting around 4 weeks!! Thats utterly shocking if i'm honest, think i'd better prepare myself for a long wait then!

I honestly think at the moment, with the way things are, we will be turned down and have to appeal. I've heard of lots of children with ASD being rejected and having to go to tribunal where the DLA was eventually given (because they're entitled to it!) but i don't see her initial claim going very well. I have filled in the forms myself, couldn't get anyone to help as carers association and CAB can't fit me in til december and the form has to be in november so i've just followed the advice given on several websites for ASD and done it myself. I think i've done a good job truthfully, it's detailed and accurate but the forms are not written with Autism in mind and its very hard to answer questions about time etc...

Doesn't matter anyway i will appeal and go as far as i have to if she doesn't get it, not looking forward to more stress but if theres one thing i will fight for it's my daughter's rights. Wish things could just be straight forward, don't they think we have enough to deal with??? Rant over lol xx

 

[Midnight_Fairy]

It was awful honestly. I think they aim for 12 weeks xx fingers crossed and you have the best attitude. Dont give up and cereba will help x

 

[kelzyboo]

Thanx i will be getting all the help i can, will keep everyone posted....forms all done ready to send monday morning finger's crossed all goes as well as poss!!

Thanks for the support everyone, couldn't have even filled them in without it xx

 

[LoraLoo]

I struggled with the forms too, currently waiting on a decision xxxxx

 

[kelzyboo]

Hope it goes your way loraloo, finger's crossed for you xx