DS when to claim for DLA

[DizzyBlondeBexx]

Hi Can I have the benefit of your excellent advice please.

DS2 is 4 months old and has DS. He is a little delayed compared to his peers but not dramatically and at the moment doesn't require any extra input except for:
A bit more focussed play to help support development and for his physio
Attendance at portage sessions/
Monthly physio sessions
Tri monthly consultant appointments
He keeps getting poorly from coughs colds etc so more GP trips

It doesn't seem we'd be eligible for DLA yet. Am I right?

Also a friend with an adult son with DS suggested we get a social worker as they will be able to help access funding. Again is a it a bit soon for that?

Thanks Ladies x

You can claim DLA from 3 months of age IIRC.

There is a charity called Cash for Kids that has a service that helps with the forms, they are great.

It is worth applying for, no reason why you wouldn't get it.

Hi dizzy,
my son also has down syndrome and he has received DLA from 3 month. So yes, apply. Anything else you want to ask please do.
HTH x

OK ladies thanks for responding and good that you think we'll be eligible but now I'm a bit confused. I thought you had to prove that they needed extra help?

If we apply and are turned down does that preclude us from applying for a certain period of time?

xx

Hi Dizzy, sorry I have cut and paste,

DS2 is 4 months old and has DS. He is a little delayed compared to his peers but not dramatically and at the moment doesn't require any extra input except for:
A bit more focussed play to help support development and for his physio
Attendance at portage sessions/
Monthly physio sessions
Tri monthly consultant appointments
He keeps getting poorly from coughs colds etc so more GP trips

all this is more than an average baby would get, however you would need to add what physio, portage have left you to do on top of what they do etc...

Hi Dizzy

We have had DLA since 3 months as well or our ds who has ds. There is however definately a 'way' to complete the ridiculously lengthy form.

I remember asking on here for advice when I applied - prob a thread somewhere - and cerebra was suggested. I used their website and advice when completing.

Its about the way you sell it I am afraid, they will look to say that your child is the same as any other so he is not eligible and so you have to demonstrate clearly and bluntly why he is not the same - which is hard and not v nice.

Thanks for teh clarifdication ladies

Think I'm just trying to delay filling out the forms as you all make it sound so painful x

Hi Dizzy, you are doing the typical things that parents do in these situations. You downrate everything you do, and it seems 'normal' to you.

So "A bit more focussed play to help support development and for his physio"

No, you need to carry out daily programmes of play therapy to help your DS progress, and feedback the results to your portage worker/physio.

"Attendance at portage sessions"

No, you spend x amount of minutes at a daily/weekly/monthly portage session, then carry out the prescribed activities for x minutes, y times per day.

How is your DS's head control? Is it delayed? If yes

You have to provide extra support to ensure that your DS's neck is protected and his head is supported as he has delayed head control.

"He keeps getting poorly from coughs colds etc so more GP trips"

He has a tendency to pick up low-level viral infections so you have to be alert to the first signs of these, and take him to the GP for assessment.

And so on, and so forth. The assessors can only credit what you say, so you have to be explicit.

Decision makers have no medical training, they have no expertise in Downs Syndrome, they only have a manual of conditions, and a Decision Makers' Guide. And your form.

So, for example, if you have to give a medicine, you write down the steps you take to prepare it, how you prepare the child for doing so, the administration, the cleaning of the syringe afterwards, etc.

The actual 'taking medicine' may be 30 seconds, but by the time you have factored in all the steps above, that is easily 10 minutes of the day.

Do you see? It isn't just what you do, it is the time it takes to prepare, the time it takes to do, the extra thought processes, etc.

Keep yourself a diary for a week, write down every single thing you do for your DS. Then look at it and see if you would do it differently for a child who didn't have his delayed development? If the answer is 'no', that is care that arises from his condition.

My DD1 has a brain malformation. Some of her care is 'normal' for a child of 18 months, some of it is 'normal' for a 2 year old, and some of it is 'normal' for a 3 year old. But the fact that she is nearly 5 means that it is all 'extra care' for her, because at nearly 5 she should be needing the care that a nearly 5 year old gets.

Sorry, it is so long The forms do absolutely drain you, but they give you access to a pot of money that you can use to enhance your DS's development, and just being in receipt of DLA opens doors to other help.

Thanks Lougie

I see what you mean now teh e.gs are very helpful

Its hard as he actually is easier that DS1

Think I will contact cash for kids and cerebra as I think I'm going to need some help identifying the areas where we're doing extra but its just the norm for us x

Anyone got any other advice? x

Our hospital social worker filled ours in and he got it from 3 month. Is there no one you have who could do it or help?

Only really have physio, play therapist and consultant. Do you ladies think I shoudl self refer to social services?

Well I was dismissed by our social worker when ds was a couple of months old. she said there was nothing more she could do for us .

I didn't then and still don't now see a reason for having a social worker and at the time certainly felt nothing but being judged by her.

I appreciate that this is different for everyone depending on their own situation.
But in the past two years, all info and advice has come from families in a similar situation and not from the professionals involved.

My 6 month old DS2 has Prader-Willi syndrome. I got DLA from 3 months. Our physio helped us fill in the forms. It wasn't too bad.
We got it because we have to provide physical care (feeding, exercises, positioning,) very frequently during the day and night and for 'excessive' periods of time. That just means we have to feed him and it takes longer that it did with DS1 and we have to do the things the physio suggests. I kept my info on the form really brief and just had to keep repeating the same information. E.g. How many minutes do you spend during the night carrying out care etc etc.
Tedious but worth it!
Good luck