Is there any point in applying for DLA?

[emkana]

Before embarking on this, as I understand it, quite laborious mission I was wondering whether there is actually any point?

Ds has dwarfism, is very nearly 2, can walk, if not as well as others his age, doesn't speak yet.

I have it for my dd who is bedbound for ME, the criteria really boils down to how much you do for them in excess for what would be expected with any other child I believe. Why dont you take advice from the advice line at contact a family who have some quite good benefits advice. I am not sure that they would view speech problems as relevant at not quite 2, or the fact that he can't walk well because he is still very young. Not being dismissive but they are quite stringent.

No that's quite all right, I was just wondering because I went to this SN group today and they were telling me I must apply but I kept thinking really would there be any point? So thank you for your post, it just confirms what I was thinking.

It is laborious and pretty depressing but I'd recommend it. I didn't realise how much we were doing for ds and how diff he was from an 'average' 8 year old until I started the form, it was just normal life for us. Plus you might feel you need it more as ds gets older so might be worth starting now...

my friends little girl has a type of dwarfism don't know how to spell achondraplsia? and she gets the middle rate dla. She walks and talks a little but she is unsteady and needs to be helped. She also can't walk distances. Also needs to be ferried to lots of appointments - not the same as her peers etc. Because she can't hear very well and everybody is much bigger she finds play groups etc over whelming. My son has not been dx but gets the higher rate of personal care for his asd?/ social communication type stuff. It is split into two areas. Nothing for mobility. His special needs health visitor filled the form in for me. It might well be worth applying and does make a difference for buying extra stuff or doing extra activities or all the time and energy appointments take.

I don't think there is an easy answer other than whether you think his care raises difficulties that wouldn't have with a child without the condition. You do have to be very negative when filling out the form so if you're not ready for that, you could leave it for a while.

I agree it was very depressing and I found the whole process really hard I was glad that I had someone supporting me. It also made me realise how hard everything can be and it helped my husband to acknowledge the issues that we are facing.

thanks spacegirl that's very interesting, my ds sounds exactly like your friend's dd, so maybe it is worth applying after all.

There is a lovely lady at this group I went to today who said she would help me, which I'm very glad about.

How old is your friend's dd?

I agree with everyone else, do it with someone who has filled in a DLA form in the past (and was successful!). You have to lay in on with a trowel and it's very depressing. Have a stiff drink ready for afterwards!

You are entitled to DLA, you ds is not like a run-of-the-mill toddler.

FWIW, it's not always a nightmare. Dd2 has been getting the higher rate for the care component since she was a little baby without any problems whatsoever, and got higher rate mobility straight away when she turned 3. It's a lot of money over the years.

is there a charity for growth disorders? They may even have DLA application guidelines, or be able to help over the phone.

Def apply
dd has noonan syndrome whichbinvolves limited but within normal limits. She could walk but not well, muscle issues, communication issues.
you explain it as it is on your very worst day
and with a proper diagnosis of an actual disorder this makes it more awardable rather than a subjective condition ( rightly or wrongly)

Hi emkana! Contact a Family and Cerebra both do a useful step by step guide to filling in the form. You can download from their sites or they'll send you a copy. I think if you read it through and highlight everything relevant to ds you would soon realise if & how he meets the criteria.

My friends little girl is nearly two and a half and has been walking now for about two months. I think you should seriously consider it. My health visitor said you should see the money as 1)to help with the time, energy, cost of lots of appointments, 2) special equipment, extra therapy required, 3) for us to try and enjoy some quality time as a family and a couple. Knowing my friend's situation she does have to provide a lot of extra care, she topples easily and needs someone to help her onto a chair and help her not to fall off/ over different obstacles etc. Her clothing is starting to become an issue too. I have a similar age little girl who is much more able physically and socially (more independant just because she doesn't have to overcome the same obstacles) I don't mean any offense by that but just that life is more straight forward for her (minus having to deal with her social communciation prob big brothers) plus the little girl has some long distant appointments etc as well as many local ones. Needs to use some signs as hearing a problem but she can speak as well.

Forgot to mention the two girls are really good friends and that she is also really able developmentally she is not significantly different and she is fab and funny but was just doing dla speak so highlighting the negatives.

hello Emkana, (I also agree with others here) if you can, get someone to help with the forms, it is good to have someone who knows about the right way to word it all and keep you company.

I have applied for dla for my ds, who has no dx yet, at the strong encouragement from his early years support teacher and the team who support him, not sure he will get dla, and I feel like lots of people deserve it more than we do iykwim... it was pretty hard putting down in black and white stuff we have to deal with.

the early years support teacher came to my house and worked on it with me, I don't think I would have completed it otherwise.

hi emkana! We've just been awarded middle rate DLA and I would say it's definitely worth applying. I didn't realise how much extra work DD was until I started filling in the forms and realised mealtimes take an hour each and we spend loads of time every day carrying out suggestions from portage, SALT, OT and physio.
My portage worker added a bit about what she does but otherwise the form is fairly straightforward. You can't claim for mobility stuff until DS is 3 BTW.
Hardest thing was reading portage worker's statment that DD is likely to have significant learning disability. I'd never seen that written down before and found it hard to deal with.

Thanks all, very interesting to read your experiences. I will do it then.

It just goes back to my weird feeling of being "neither in Italy nor in Holland" - when I take ds to the SN group I think "oh I'm so lucky we have so few problems compared to some" and I feel so undeserving of anything then

Arabica, hi, nice to "see" you, x-post there. I can imagine that reading that must have been quite difficult. Sorry to see your ohter thread btw that the grommets haven't brought the change you were hoping for.

With ds we are still so much in limbo as to how things will develop.

They told me today that the DLA form was 40 pages long... not looking forward to filling that in!

It's not too bad really, as a lot of it won't be relevant. What's bad is the mindset you have to get into--describing all the things your DC can't do compared to other children.