Applying for DLA - how to spell out a baby's needs?

[Wispabarsareback]

There have been lots of developments with getting DD2 assessed and started on therapies etc since I last posted. Which is good, and makes me feel a bit more positive. (Even though DD has now acquired a neurologist - on top of all the other professionals - who thinks she's 'interesting', which makes me worry...)

Anyway, I've now got the DLA claim form and am working my way through it. I have an appointment tomorrow with our local branch of Contact A Family to discuss it - they said they'd take a look at what I've done so far and offer suggestions. But in the meantime, does anyone have any insights on how best to spell out what makes a baby with developmental delay 'different'?

DD2 is 15 months old and very behind on motor skills, has problems with feeding and isn't very responsive. But the questions on the DLA form could apply to all babies, couldn't they - help with dressing, feeding, communicating, etc. I know the form says to focus on what makes this particular baby different to others of her age, but it's still a bit of a challenge. Grateful for any thoughts or advice...

Well, my SNHV did mine which I have photocopied so I'll type you some spiel. It is very repetative. Any specific questions you're struggling with?

Thanks feelingbitfestive (wish I was feeling that way too, but it hasn't hit me yet).

I'm looking at sections on:

'someone keeping an eye on the child' - why the child needs someone with them.

'washing and bathing' - help in the bath (DD can't really sit up in the bath as she's too wobbly - will say that).

'getting dressed' - DD is difficult to dress because she's so 'floppy', so I guess I'll say that.

'moving about indoors' - well she doesn't, so I guess I'll just say that she can't move by herself.

And trying to work out how many times a day she needs help and how long it takes each time is baffling me too!

Hidden in an appendix to the medical guide the DLA assessors use is a list of what kids can do, when. Not totally helpful but gives you an idea of what they expect.

www.dwp.gov.uk/medical/med_conditions/dlahandbook-pdfs/children.pdf

I think that what you have to try and provide is an 'idiots' guide to life with your DD, pointing out how this differs from life with a typical 15 month old.

So, for instance, you could say that your DD isn't very responsive. But to get it across clearly, you would need to say something like

"DD2 isn't very responsive. A typical 15 month old would make it clear when they are uncomfortable, but DD1 is unable to do that, so I have to pay special attention to her environment and check that she is comfortable....DD2 is unable to alert me to her thirst, therefore I have to monitor her fluid intake to make sure that she has had sufficient fluids to prevent dehydration...DD2 is unable to move around independently, and has poor muscle tone, so I have to make sure that she has regular position changes throughout the day to prevent her becoming sore. I have to constantly supervise her when in the bath and give physical support to ensure that she does not fall over in the water....

Obviously these are not specific examples for your DD, but an idea of expanding what you intuitively know about your DD into a 'picture' for the assessor.

I think that is why it is suggested that a glass of wine is a good idea while filling it in, because it really places a magnifying glass over the limitations of your child. I am dreading DD1's, and haven't plucked up the courage yet to be sure that we are 'bad' enough to warrant it. Too worried we'll be accused of money grabbing or something

And in general, I think it is fine to put CONSTANT THROUGHOUT THE DAY for most things like supervision, etc.

r3dh3d, just read that list on the pdf, thanks I hadnt seen this and will help with the form filling, bit sad tho, when you realise your child cant to do it. Understand the need for wine now.

Sorry Wispa for the little hijack, I noticed on moneysaving that their is a thread from one of the actual assesors giving help to people. dont know if that helps at all.

well, I shall quote word for word and hope it helps.

keeping an eye: "DS needs constant care and supervision at all times. He is considered a highly vulnerable individual who is under the care of a multidisciplinary team. He has frequent spasms (know this poss doesn't apply, but insert what you deal with) and has extended periods of high distress".
At night she put the obvious: "He wakes often and needs soothing and reassuring back to sleep, nappy change and feeds. DS can be sick after every feed and will need changing during the night".
For the in minutesbit she put 'ongoing continuous support'. At night she also mentioned that DS has never slept for more\than 4 hrs.

Washing and bathing: "DS gets v upset at bathtime and does not enjoy the experience. He can have more frequent spasms and even be sick when distressed. He will tolerate a wash a bit better, and it can take a long time to settle him after a bath. He is bathed frequently as he is often sick and takes medication orally which can irritate his skin if not cleansed thoroughly".

Getting dressed: "DS is dependent for dressing and undressing like all babies. He has increased (decreased for you) muscle tone which can make him difficult to dress. He can be sick after every feed and needs changing. This is a particularky demanding aspect of his care and he needs gentle handling to prevent further increase in his muscle tone". Time: 20-30 mins 4-14 times daily.

Moving about indoors: blank as DS only 6 months, but above in the tell us about the childs needs with movement and co-ordination, she put: "DS has delayed motor development, he cannot roll over, or sit up and has increased tone. DS can only lie on his back".

I know a lot of this won't apply, but she put so many things that I wouldn't have even thought about as, like you say, all babies need looking after. Also, DS is my only one, so it is completely normal for me and diffucult to see where I do so much more. That is why it was so helpful for a 3rd party to look at it.
HTH xx
PS - not feeling festive at all, name changed to try and make me be!

That's really helpful - thank you so much for taking the time to give me all that info.

Also don't forget how much more stimulation & intervention your dd will need in comparison to another 15 month old.
Rather than just the child playing I am guessing you would need to lead the activities so even play is a therapy.

Sorry if this is repeating, lazily not read all the answers.