sorry, resurrected old thread about being turned down for dla for 1 year old, now starting new thread to ask...

[hazeyjane]

...should I ask for reconsideration, go to appeal or not bother with either.

(This is the post I wrote on the old thread about ds's application)

Ds (14 months) has just been turned down for dla. He is under a working diagnosis of gdd with low muscle tone and intermittent muscle stiffness, whilst we are waiting for further tests - an mri, videofluroscopy (to see if he is aspirating) and a referral to a neurologist.

He has physio, salt, ot portage and is just about to start sn nursery (which I will also have to attend as I am unable to leave him with anyone but dh). He has to be repositioned at night, often has chest infections/breathing dificulties, si is up for at least an hour at night and then is up for the day around 4.30/5am. He also had a 'funny turn' about a month ago, which could have been a fit/seizure - we are seeing paed about it. I do daily physio and oral physio with him. He started sitting at a year old, but if he falls (which is often!) then he is stuck, he can't roll or move in any other way. We are waiting for delivery of a standing support which physio has issued, and piedro boots, as these will help his legs and feet be in a correct position when he wants to stand. He has only just started showing an interest in toys, and his dev paed recommended play therapy, so we are waiting for portage, and nursery, but we also try to sit and encourage him with play. He has trouble eating solid foods so is spoonfed mashed food, as he has low iron I try and make iron rich purees for him, but he also has 3 or 4 milk feeds a day, he can't drink from a cup, although we have been told to try kapi-cups to help him drink.

I wrote such a detailed form, and included reports from salt, physio, paed, medical report, tac minutes and a sleep diary. We were rejected within 11 days, before they had even received the report from the gp. I just wondered if anyone on here has any ideas as to whether it is even worth us appealing. I have rung ds's keyworker, but have yet to hear back from her. We are struggling, because work for me is impossible, ds can't go into childcare, and the evenings are often a right off because of ds, plus I'm knackered!

Any advice or tips greatly appreciated - thankyou.

You definitely should be getting MRC if not HRC! Do appeal - I heard a piece on BBC news the other day that they are rejecting all applications without a definite diagnosis - probably with the hope that people won't appeal. But this really does sound like a mistake. Our DS's are very similar - I applied when my DS was 1.9 and we get MRC - we heard back in less than 2 weeks. I'm not sure how the appeal process works tho sorry!

Certainly phone to ask for reconsideration first - it costs nothing, takes next to no time and could be all that's needed.

I would also appeal if still turned down - sounds like you should be getting it.

Meant to say - I think you only have a week to ask for a reconsideration though, so be quick!

Appeal, Appeal, appeal.

From what you've said here there seems no way you shouldn't be getting MRC but I would have thought more likely HRC AND HRM!!

I'm horrified and feel sorry for you that you have to go through the appeal process, can you contact you're MP too?

Thankyou. I am seeing ds's paed tomorrow, and will ask if he will write a letter specifying ds's extra needs. I put ds's physio down as a reference, but there wouldn't have been time for them to contact her, so I will ask her to write a letter as well. We did include reports from both of them, but maybe they weren't specific enough. The HV I spoke to today said that maybe I didn't make it clear how getting dla would benefit ds. I wish his keyworker would get back to me!

Defo appeal. I got it for youngest as soon as he was being tested for FXS (his brother having it may have helped I suppose) and he was 10 months at testing anjd 13 months at diagnosis.
Go for it and keep on appealing if you have to. I've done appeals and latest was a trbunal which took 8 months and bloody stress but won it so always worth challenging them.

(Just a point, LunarRose, but he won't get HRM as he's only 14 months. No Mobility component will be paid till he's 3)

Definitely appeal... but just be aware that DLA is nearly always turned down for babies/young todders... it's not fair but it is often the case..so it'snot you, it's them!

The difficulty lies in that all babies need lots of care and supervision and night care, and while it is clear that your DS needs MORE than a usual 14m old, the decision makers know sod all about developmental delays/problems and just see '14m old wakes at night.. yeah normal... needs help eating.. year normal... repeat ...

Persist.. in the end they will give in but sadly sometimes it takes a while . My son was pretty much identical from what you have written, turned down at 13m, I didn't bother reapplying til he was 2, but then got HRM and HRM... because by THEN the fact he couldn't walk, didn't sleep, couldn't feed himself..bla bla was more obviously 'disabled' than he was before he was 2! Mad but that seems to be the case.

The HV is talking rubbish if she thinks getting it is dependent on how much you can say he/you would benefit from it however

edit... yeah HRM was at 3, not two sorry!!! They sent me that bit before he turned 3 and it was granted straight away!

Yes appeal. You may have been unlucky, and filled the forms in perfectly, but they didn't read them properly.

The other area people sometimes fall down on, is assuming knowledge of the decision maker. They are just people who read the forms, and they are looking for key words, and statements which indicate care needs.

When you write your letter, go through and pick out everything you feel hasn't been taken into consideration, and try adding the phrase 'a normal child without DS' difficulties would not need x, y, z....they would be able to a, b, c'

For example:

DS wakes frequently at night due to his breathing difficulties. Because of his low muscle tone, etc, etc, I cannot allow him to talk to himself in his cot and self-soothe. I have to sit with him for over an hour, supporting him, because he is unable position himself suitably. I have to do x, y, z to get him back to sleep, and this takes x minutes.

A normal child of his age may wake, and may need some attention to return to sleep. They would not need someone to sit with them for an hour, and would not need physical support to aid their breathing.

Obviously, you know your DS. But sometimes, it really does need to be spelt out.

Appeal. So many are routinely turned down, and then granted on appeal. Good luck!

Just saw ds's paed, today we saw the main man. On the one hand it is great because he said we should definitely be getting dla and he is going to write a letter specifying all the extra needs that ds has.

On the other hand we came away with a referral for an ecg, an eeg and a videofluoroscopy. He seems to think that ds's 'funny turn' was because he was choking, he then talked about the fact that he needs constant supervision day and night, just in case he chokes. He has prescribed patches to dry up some of ds's drool, which pools in his mouth at night. It was so grim hearing him talking about 'gross hypotonia' and 'severe developmental delay'.

I felt like I left with loads of questions unasked, some days are just shit aren't they.

((hugs))

It must have been grim today but you are on the road to more answers hopefully and it sounds like DLA which will ease things for you

I got HRC for younest at 13 months hAZEY SO IT IS DO-ABLE BUT ALSO DIFFICULT AS THEY SAY ALL BABIES NEED CONSTANT CARE (WHICH I8S TRUE) BUT YOU NEED TO PROVE HE NEED MORE CARE THAN ANOTHE BABY HIS AGE.
Oop sorry caps lock on, it's these freaking acrylic nails I hate 'em!

Thankyou, feeling a bit better after doing mundane stuff like sorting out school stuff for dds, and eating fish and chips and drinking a glass of wine (maybe it was just the wine!).

Dh is always so positive about this stuff, that sometimes I just need to crumple somewhere. I think there may have been an element of him, 'bigging it up', Justa, but the letter he was dictating was to the SALT, GP and a neurology and muscle specialist at John Radcliffe, who he would like ds to see. I think i was just a bit surprised that he suddenly wants to see ds every 2 months, and was talking about all these tests. Strangely he also thought we should be issued a parking badge (blue badge?) because of all the appointments.

I spoke to keyworker today, and she seems to think it best to go for a reconsideration, with new evidence from paed and physio. She said that most of her clients who had been turned down lately, were very young and with a more physical disability, as opposed to problems with communication and behaviour.

We used the phrase 'X requires extra encouragement, supervision and support' in every section of the form and were awarded HRC 1st time( in 2006) when he was 18 months old ( we live in the Netherlands til then) and HRM 1st time when he turned 3, both up til 2015. It can be done.

Get someone else to look at your form too if you need to fill it in again. I forgot to put in lots of stuff because DS was our 1st child and so lots of extra things we did for him we didn't actually recognise as extra!

Good luck. Def ask for reconsideration 1st. XX

hazeyjane the parking badge is likely to be a hospital parking badge, to save you parking fees. It's unlikely to be a blue badge, as the regulations say that a child under two is only allowed a blue badge if they have 'essential bulky equipment' (eg. oxygen cylinders, suction machine, etc.) - but if you do have that sort of equipment, that's more likely.

Ok, that makes sense, Lougle. I thought it couldn't be a blue badge (having seen some of the friskier threads about parking!)

Keyworker coming over to help with forms on Tues, so fingers crossed I can sort something out then.

If I ever see anyone on a thread saying that getting dla is easy, I will probably explode over the entire thread!

I spoke to someone from the dla today, and was told that ds's claim was rejected because he is 14 months old and all 14 month olds need 24 hour supervision (but obviously don't have to be fitted into standing supports, go to sn nursery, be held up at night when they are having trouble swallowing, do physio and speec therapy daily etc). The claim was indeed rejected straight away, (letter sent out next day) no references contacted.

I have sent a letter asking for a reconsideration, with a good letter from our gp, the consultant paed (who fully supports our claim and talked about ds needing 24hour supervision due to him potentially choking on pooled saliva) has asked that they contact him.

If anyone has a spare set of fingers to cross, please cross them for me-I don't think I can handle it if we have to appeal!

fingers crossed for you hazy We got it for dd3 when she was one so it's definitely doable, what you were told is just, well, absurd.

Fingers crossed here for you Hazey. It's so hard to get it early on. We were lucky in a way because DD is now at an age where the 'differences' between her and her peers are becoming more and more apparent. Here's hoping that when they actually read the form you poured your life and soul into, they realise that what you say is true!