Down Syndrome and DLA

[Graciefer]

My ds2 is now almost 3 months and it is time to do the dreaded DLA forms.
Just wondered if you ladies could help with what to include.

He has billateral talipes so I am adding all that stuff but was just looking for any suggestions that you mums with experience of DS think I should add.

I know it sounds stupid but he is so much easier than ds1 that I just cant pinpoint anything that i think is applicable. TBH i dont know what is "normal" as I dont have any NT children to compare with. When I did ds1's (Non Verbal ASD)he was 3 and was significantly delayed (by at least 18 mths)so his was easy to do.

I do have the BHAS guides but was looking for the more personal stuff IYKWIM.

Also what rate can we expect to get??

Hi my DD2 doesn't have DS but another genetic disorder.

We applied from 3 mths and got DLA, probably because she had an NG tube (feeding difficulties), oxygen and apnoea (respiratory problems) and profound muscle weakness (so needed entirely different handling).

So I would focus on his needs that are particularly different to most babies - feeding, breathing, moving, health problems (heart defects?).

Also have you see Cerebra's guide?? Cerebra's guide to DLA

All the trips to clinics etc for his talipes is more than you would expect to do iykwim, so focus on that. I'd also focus on things like play - you know the bits where- help communicating etc- say that you'll need to use Makaton from early on - think about anything you'll be doing to help him develop and add that.

DIAC can help you fill them in (but waiting lists are huge) ask at your GP"s surgery as well- sometimes there are people there that help fill them in.

DON'T tell them how cute he is

he's gonna be a real charmer thats for sure fio

I've just filled the form in on-line. How depressing.

I am also investigating respite care.

Seems you need to get a social worker involved?

SW give me the creeps...

Hi, my DD3 is 7 and has Downs, and had DLA middle rate for care since 3 months, and higher rate mobility since 5. I put lots of stuff about the developmental delay in communication, the fact that we had portage and did their activities daily. Children with Downs have low muscle tone, so mentioned physio and doing their recommended activities and positioning daily. I was told to be precise and say for example that you did various activities for say 5 mins at a time, 3-4 times a day, which is not unrealistic for a baby. Also mentioned physio and use of MAKATON even from baby stage. And the fact that there's much more hospital checks - eg paediatrician, sight, hearing, and on top of that all the stuff for talipes in your case.
It didn't take long for us to get a response which was succesful. Good luck!

Incidentally, I ALWAYS end my DLA application with a mention of how beautiful my DD3 is! I don't care if its not relevant, after describing all her problems I just like to see it in black and white

Hi, I am very new to this site but just wanted to post as we are just going through the DLA process for our dd2, who is 8 months and has Downs. We submitted our first attempt when she was 6 months and in our case it didn't take long to hear we were unsuccessful....!! Perhaps we were at a stage where we had many referrals waiting to start, including portage, so it was difficult in places to be specific enough.

We had a very helpful booklet from the DSA on filling out the form specifically for the 0-3's. I also spoke to a very helpful lady there who gave me some guidance too.

We have just asked for a reconsideration and have sent off additional information as lots of things are now well under way. We also had some help from a local charity called carer's support who were fantastic and have done a covering letter. theheadgirl's post outlined exactly what we put. I just wish the process was more transparent. Best of luck. x

Dd2 (now 22 months) has Downs and we applied for DLA when she was 5 months old. We got lots of help from our Money Advice Unit which is part of the local Council - don't know if every council has something similar (we are in Herts). The woman came round and filled out the form for me as I told her everything and she prompted me. It was phenomenal in terms of the amount of info she wrote, very specific and lots of repetition about all the therapies etc. It was such a help and she obviously knew the types of things to write. We had a very quick decision and get higher rate.
If it's helpful, I'd be happy to photocopy it(I kept a copy) and send it to you as a place for you to start. Let me know and I'll give you my email id

Thanks so much for all the very useful suggestions, they really are appreciated.

I am feeling a bit more positive about tackling the forms now, although I have to wait for new ones to arrive as DS1 decided to fill the ones I had in for me

Nuru: that would be very helpful indeed, unfortunately I do not have the CAT facility, do you?

Sorry for not checking this thread sooner, DS2 had his tenotomy operation yesterday and although he was out of surgery by 3.15pm they kept us on the childrens ward until 10pm hooked up to some monitors.

Thanks again for all your help.

Glad you're feeling a bit more positive now - but we still shouldn't have to jump through so many hoops should we?
I don't have CAT either but I'm happy for you to email me your address on arprap26 at aol dot com (take out the spaces obviously).
Will get the copy done over the w/e hopefully.
Hope little one is ok after his surgery

oops, the first was supposed to be a obviously

Be strong, think of your worst days and get those forms done and dusted as soon as possible- they are like a huge black cloud hovering over you IME!!!

My DD is 6 and had DS...I am already dreading having to re-apply next year!!
I can only think back to how it was for me when DD was a baby. Even at a very early age she had failed a hearing test so I was signing with her to stimulate and communicate right from the word go. Physio exercises- the way I held her,carried her, laid her on the floor, propped her up...all to strengthen loose muscles..

Daily care, dry skin, waxy ears and sticky eyes all needed extra time and care...

Night time care was a big issue too because although you would still be getting up for any baby of that age, my DD was a very poor feeder and it took hours to get even a little milk down her...

Sorry just a ferw ideas, feel free to email me if I can be of any more help!

dingle dot del at hotmail dot co dot uk

Hey love sorry to jump on this dread jus bn struggling to fill the dla form in got no support at all. My daughter has dwn syndrome as well was wondering if u can give photo copy so i can use as a way to start thanks I really appreciate.

Safh786 this thread is 16 years old.