is it worth even trying to claim dla for a one year old

[hildathebuilder]

My DS has a working diagnosis of gross motor skill delay/mild to mild end of moderate cerebral palsy (spastic diplegia), along with a possibly hypermobile airway and occasional breathing difficulties when he picks up a cold. Against that background he is doing well, he can sit fairly well, kneel fairly well and just about pull to stand. We have NHS physio and 10 hours of 1-1 in nursery which helps with his positions for play. I believe that he will probably "catch up" and end up clumsy or having a mild limp etc.

Until now I never intended to even think about making any claim for anything. My husband and I have a good income and can cover all costs (physio etc). As such we don't need any money as such although we may look at private therapy etc at some point, and expect costs to mount if we do. I don't want to look back in a few years and regret not doing or trying everything.

Anyway my real question is whether there is any point in even applying for DLA, we have several medical reports about DS, which discuss all the various issues. I think we probably spend an hour ish a day, split between morning and evening as both DH and I work full time, doing exercises with DS which a NT child wouldn't need but is that any differnt from spending an hour playing? Is it more than a normal child would need. DS feeds well but maybe takes longer with his illnesses.

where he's really behind is mobility, but of course he's not 3 yet. I am not sure I can face the time doing the forms if there is little chance of sucess, but I have no diffculty in claiming if we are able to.

Any views or experiences of claims for very young children

Hi - I claimed for my DD when she was 10 mths old (she has Down syndrome). Like you I debated a long time about whether to do it as it felt wrong to claim, but in the end I went for it as I was told that having her officially registered as disabled might help get her any additional services she may need later on more quickly.

The whole process only took about an hour to complete, thanks to the help of our lovely HV, and she was awarded mid level support. I'm putting her allowance into a saving account for her for when she is older and (hopefully) independant.

This should help the DLA decision maker to get a clear idea of your child's needs. Bear in mind that they are not medically qualified and are working according to a set of slightly arbitrary rules

we got it for dd3 when she was one. You include all the help he needs whether you do it or it's done at nursery, you may not realise how much extra you do until you sit down to do the forms. Do use the cerebra guide that maria linked to, it's very good.

DS's community nurse got us the forms when he was a few days old. He didn't qualify under special rules so we had to wait the three(?) months; but got it straight away. So yes it is worth claiming.

There is no issue about age generally for claiming DLA. DGS was 10 months or so and he got it first time. He had cerebral palsy spastic quad initial diagnosis and needed frequent repositioning during the night so got high rate.

You may have difficulty but I would certainly give it a go. The motor function you mention is not that much behind a NT one year old and the criteria is basically if the child needs help over and above what a child of a similar age would require. Most one year olds need play therapy and physical help from their parents, but dont need 1 to 1 in nursery to reposition, so that might be your best tack. Supervision wise all one year olds need to be watched like a hawk for falls/dangers etc.

I'd give it a try its not that difficult with the 'cerebra' guide (download it for free) they can only say no. There is certainly nothing stopping you applying at a later date when walking issues may be more of a problem, which is the issue with SD rather than sitting and kneeling.

I'd add that getting help is a good idea - ds's community nurse filled his in - as a first time mum I couldnt really see how to complete it to show that he needed more help than other children of his age, but she had obviously done the forms before and was a great help.

I know you will all think me a cow for saying this,but if I was in your situation and you baby only needs a bit more care than normal ,and you don't need the money,I wouldn't apply yet.
I really wish that I didn't have DLA.
I hope that she will improve and you won't have to go through the pain ful process of form filling,
I think you have to do what suits you.
All the best wishes.
sorry if I've upset people with this view

Not at all Ethel everyone is entitled to their opinion , I wish ds didn't need dla also and would give it back In A heart beat if it would make him ok.
If I worked full time I would not need dla, but ATM ds needs me to be at hone more dla substitutes my wage just enough so I can work part time and do ds's Physio.

Hilda - we applied for dd (also has spastic diplegia). She was awarded low rate DLA but we've asked them to look at it again. Her NHS physio therapy is now once a month, will drop further and we are having to finance costly private physio therapy every 1-2 weeks. She needs more than 1 hour extra care a day (compared with NT child) - much more than that in fact, so I think she should be eligible for middle rate. If successful, we will use that money for physio and other therapies. There won't be any extra to put away though!

Also, we had a disability worker helping us with the forms.

we got it for DD2 at 3 months old

Hi Hilda, I got it for 1st son at diagnosis aged just over 2. Younger son received it at diagnosis at 13 months. If they had been diagnosed earlier I'm sure we would've got it earlier, so i would say yes definately go for it. You never know when you're gonna need it...

BTW they both got High rate straightaway

Sorry to resurrect this old thread, I was just curious as to whether you had gone through with your application, Hilda?

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!

If you think I'd be better off starting my own thread, please say! Any ideas or advice would be great - thankyou.

hazy, do appeal the decision, it does sound as if you should be getting it. Did you have help filling the form in?

I would ask for reconsideration as apparently this is much quicker

Hi Hazey,

Ask for a reconsideration. You can do that over the phone and also ask that they write to you to explain their reasons for turning you down. They have to do that if you ask for it. You can then send more evidence in. My DS was turned down around the same age as yours, we had a whole team involved as well. I remember we had a meeting with them all and said we had been turned down, they all laughted until they realised we were serious. It just sounded so ridiculous. We asked for a reconsideration and not sure what changed but we were awarded HRC. I think they must have got a report from our paed. I would suggest you ask them to write/call your paed and SN school. It is very difficult first time around to understand how to fill the form and you may not express things in a way that shows the difference particularly if it's your first child. My DS is severely disabled, in special school, and has HRC and HRM. So don't give up they often get it very wrong first time around! Good luck

In answer to your question, yes I made the application at the beginning of July, but I haven't got the decision yet. I would ask for a reconsideration. If that doesn't work then appeal. I have had this twice with attendance allowance for my parent in law (and been told they are told to turn down all applications for attendance allowance at the outset) But that's off topic

When I sent my DS form off it had 9 reports from the CDC/development paed, listing CP, Asthma, reflux, development delay and hypermobility, a report from the nursery detailing the early years funding DS already gets for 1-1 funding and the extra support he needs, a report from the physio, a report from the hospital about the respitory issues, and action plan from the respitory paed plus the discharge info from the last hospital stay we had, and the most recent exercise programme from the physio shwoing the exercises we are supposed to do each day. It also detailed the othotics appointments which are coming up and referned the GP, two paeds and the physio as medical people. Apparently however they still need more information from the paeds. Quite what I do not know as obviously 9 medical reports from the paeds are no enough! I have had several letters saying they are processing it etc, but nothing else

Thankyou for your responses.

Blimey Hilda, that sounds a ridiculously long wait, especially as you had sent in all those reports.

I get the feeling from the letter that they hadn't even read the form, as one of the reasons we were turned down was because he had no extra needs at night, which was not what was stated in the form. I did have help with the notes I wrote, but think that maybe our keyworker could have read through the whole thing before it was sent off, so that she could have ok'd it.

Still haven't heard back from her, so I'm not sure the best way of going about it.

Do you think asking for reconsideration is a better idea than going straight to appeal?

DS received highrate DLA at 8months deafblind cp was not overly surprised but also got it for life which staggered me. Mind you in todays climate it does not mean a lot! Like most posters I would give it back if he didn't need it. Good luck

You shouldn't have just been rejected if there are no night needs(not that i am saying their aren't) but should have had a lower or middle rate award.

If you apply for a reconsideration and the reasons and still don't get it I think you can then appeal (we did with the attendance allowance for first FIL, then MIL) Others will know more about that than me.

Have you spoken to the paeds about the application, mine were supportive when i spoke to them, and in my view would be more useful than my GP (who doesn't really know DS)

one other thought just from your post has anyone suggested Sytron for the iron which may also help ?

We filled in our DLA form for DD and sent it end of July. So far we've had a letter saying they've received it, a letter saying they've written to the consultant and then a phone call (well, 3 answerphone messages while we were away which I returned when home...) asking for clarification of her night needs.

Hopefuly this means a decision isn't too far away.

We got DLA at 14 weeks - no problem, so yes it's worth applying. But then we got it refused on renewal even though things were worse. We have just successfully had a reconsideration. It really depends on who reads your form, and if you get refused you can try a reconsideration for nothing!