Can anyone help: Claiming DLA for 4yr old ...

Scattynat

Evening everyone ...

I have been reading through the posts on DLA on this forum for the past two weeks, hoping to get some insight into this flipping form. So far no luck, so gonna just ask and hope someone can help me!

My daughter is 4 (5 in November) and has vesico-ureteral reflux in her kidneys (inherited from me - poor thing), she also suffers from recurrent severe UTIs, damaging her kidneys more and more every time and asthma. She has about 20% function in both kidneys and has to have an op in September. She can't walk for more than 10 minutes without feeling tired, achy and sore in her lower back. It gets so bad that she wants to be carried or pushed in her buggy. She is not able to control her bladder in the night so is being changed about five times. She gets frustrated and lashes out, obsesses over the tiniest things and cries unconsolably if I mention doctors/hospitals - which is a lot because she has a lot of appointments. She goes absolutely nuts when she sees a bus - and not in an excited way! Has no energy, comes home from nursery and naps on and off until time for bed, which then takes her at least two hours to get into and settled, and then is up about an hour later, wet, needs to be changed and settled back down to sleep, only to repeat about 40 minutes later. Takes me a good 40 minutes to get her up in the morning, and motivated. Doesn't play with her toys, and doesn't really socialise with other kids apart from in nursery.

I was made redundant in March, and have been living off my meagre redundancy since. I finally went to see about what benefits I am entitled to because I havent been able to find a job which fits in with childcare, and was advised that I qualified for IS, and should claim DLA for little one.

Got the form home and I am overwhelmed to say the least. I went through the form and wrote down symptoms, behaviour and things that I thought were relevant and then broke down crying because the list went on and on and now I'm thinking that she may have other issues apart from her kidneys and asthma.

I went to the doctor yesterday to get a top up on my amitriptyline and tried to talk to him about little miss and the DLA form, and he just wrote off everything I was saying as "normal 4yr old behaviour" saying that she was manipulating me?!

Can someone please just give me some advice, some friendly words, anything because I really feel as if I'm going insane.

Thanks in advance ...

Nat

PS U should all be very proud of yourselves, this board is fantastic x

[Deleted User]

My advice would be to get help with the form from welfare rights(contact local council for details)or CAB,as far as DLA for children is concerned the big factor is do they need more care than other children of the same age?sounds like your daughter does.
As for your GP i`d find another one asap.
good luck

Scattynat

Thanks John, I was thinking that myself about the GP - as for WR I did talk to them the other day and the man in there wasn't particularly helpful, just said "I don't think you'll get anything at all, but send the form off anyway and if you don't get anything, we can help you with the appeal" ... Didnt fill me with a lot of confidence!

Another thing I am worrying about is that we only go to the GP really for her repeat prescriptions, it always seems that she gets infections out of GP hours so we have to take her to childrens A&E or out of hours, but her specialist at the hospital knows about her other issues (tiredness, etc). I've put him down as the person to contact.

Thanks again!

reillyhub

Hi scattynat. If you do fill in form youself large cuppa and answer 1 question at at time i dont mean that to be condescending dont keep looking at what you havent done. If you run out of space on a particular question add an attached sheet. Golden rule you never get deducted points for overfilling in i mean 1 particular question may be very relevant so add the attached sheet to explain all difficulties.Remember the awards officer doesnt know you from Adam so your application will be based on what difficulties you describe.Even if you go to Cab or similar write as large an account of difficulties faced so these can be highlighted when your helped filling out form.Perhaps write on a scrap piece of paper first then try to introduce facts into form while filling in.
Sorry for going on but these forms are such a pain the doctor or consultant will usually only confirm medical conditions and the like so list every difficulty even the ones you probably take for granted. good luck

Scattynat

That's exactly what I've been doing, and you weren't condescending, I'm just grateful for any advice. I think I am going to go to the CAB though to just get them to go over it with me.

mad_spaniel

Question: is your daughter dealt with any differently at nursery than any other child her age? Does she have additional care/support? if so get letters from the nursery confirming why they devote more time/ energy than other children- this can count as care/supervision thro the day.
Do you have any older children that you can compare your daughter to at the same age. Compare everything. Go to your local (large) reference library and look up Mosby's medical ( I think its an encyclopaedia ) for Nurses/ It's American or Canadian but at the back are some very useful pages on normal developmental progess for babies and children. Once upon a time they even gave these away on cd with computers so you could cut and paste text --check with any computing wizz if they have a Mosby's cd. Look at what a child your daughters age should be doing independantly and compare to what she can actually do. That is the basis for your claim to DLA. That she needs help/supervision to achieve x,y,z . Also compare the time it would take for her to do something. Difficulty/ danger.
Asthma ; you don't say how severe or if she has been hospitalised. Irrespective, it's unlikely she can inhale properly without help, and probably needs to use a spacer- so you helping her would count as help reasonably needed. How often does she need your help to use a preventer and inhaler thro the day/ night? Does she need your help/ nurseries help to avoid potential irritants? Mobility - 10 minutes suggests a reasonable distance: have you any idea about how far that equates to?,Regulations talk about the time it takes to walk, the manner in which a person walks, the speed, and distance they can cover before the advent of severe discomfort. Achy and sore suggests mild discomfort not sevwere discomfort. Try and get your daughter to describe the feeling more graphically. Is she on any painkillers? Type/ frequency? This might back up severe discomfort if the dose is frequent enough/. Or the need for guidance/ supervision in unfamiliar surroundings eg encouragement to walk might count. I wouldn't have thought carrying her / use of a buggy at 4/5 would be the "norm" but beware the possibility that DWP regard you as overly protective... explain why it is essential she is carried/ uses the buggy... if she goes out with the nursery... do they have to carry her/ use the buggy too. This would reinforce that you're not doing things for her that don't really need to be done Frustration / temper tantrums - all kids have these- in what way are these different/ worse than other kids?- more frequent? longer? louder? harder to placate?
Nightime incontinence can still be normal for some 4/5 year olds-- explain why your daughter can't get over the problem - why wouldn't drinking less in the afternoon/at night before bedtime make a difference? Or does she have to drink a lot of water to flush the kidneys- and you have no choice but to give her fluids! Are you so obsessed by keeping her dry that you are changing her more frequently than she really needs? Have you tried to leave her longer? What happens? Bedding / mattress soaked? Even more unconsoleable child? Crying/ going nuts - give graphic details on the form about frequency/ (un)predictability/ how you cope/ how much longer it takes to calm her down than say her friend/ sibling? Naps after nursery - not uncommon - perhaps a bit longer than the norm? But is that down to you not having a good regime ? or is it exhaustion?( you use the word tired- think about the choice of words ) (I sound horrible, but I'm playing devil's advocate - this is what DWP might think, if you don't explain properly) Not going to sleep - bad parenting -? explain why it's not!! The rigmarole you may have to thro to settle her.
Getting up for the morning - explain why it's not poor family regime/ poor parenting.
I must admit I've never come across this particular kidney problem and I suspect DWP won't either- try looking it up on the web and copy the symptoms onto the claim form. consultants - DWP usually avoid contacting consultants- it sosts them too much money as he can charge a fee- similarly they prefer not to send out an examining medical practitioner - that costs too much too. Writing to your GP is the cheap option that they normally take.... changing your GP might be a bit late in the day, as it takes time yo build up a relationship with a new doc. Any chance of a private letter / note from the consultant addressed to whom it may concern? The hospital should be able to detail the A&E dates - make sure you put these on the form - as life threatening illnesses/ need for prompt medical attention should count for a lot and backs up the seriousness of what you are saying . Hope this helps. good luck,

Scattynat

Lots to think about - thank you very much. I'm very grateful that you took the time to reply. As for the "bad parenting", nothing to do with the regime, we try and have tried since she was born to have her in a regime and she was until about 10 months old when these kidney problems kicked off, it threw her completely fror a loop. She doesn't just "nap" - bad choice of words on my part - she falls into totally deep sleep and is constantly tired. You make some very valid points and I am going to take your comments constructively. Looks like I'm going to have to get another form ...

aliballi

The form which is like writing a book, is totally over wheming when you are filling it out for your child, as not only do you you have to fill in the form but come face to face with each & every problem your child has & as so filling out the form can be very difficult & emotional.

While every page asks you how often & or for how long etc. If this impossible to say, say so. I've always had to say this on alot of pages & have never been asked to re-explain.

I would also keep a copy, then if you need to apply again in a few years time, filling out again will give you somthing to refer to even if their are changes, which tends to make it easier.

munchings-n-crunchings

Hello Scattynat,

On your application form, you only need to put the medical professionals that you consent for the DWP to contact, so you do not have to include the GP.
Normally the consultant would be first choice for the DWP, as they have an agreement to reply within 10 days.

I would suggest one of 2 things. Ether phone your consultant's secretary and ask if they could write a written report for you to use. Or, secondly, write to the consultant explaining all your daughter's problems and how it's affecting her. In doing this, if the DWP contact the consultant, they have an up to date latter from you to help.

Another point, to decide which level of DLA your daughter will be entitled to, the Decision Maker will look at the amount of help your daughter needs during the day and during the night, how much and for how long. You really need to put time to this help, it may be difficult, but without it how can the DM decide on the rate of your claim.

I was once given bad advice, and told where the form asks for 'How long does it take?' to respond with 'it varies' needless to say, the claim was turned down and I had to go to reconsideration.

One thing that is important is the terminology that the DWP use. If you understand it, then you can apply it to your daughter's needs.
Here is a link to The Decision Maker's Guide. It lists all the terms, such as 'attention', 'supervision', 'frequent', 'continual'. Listed there is also the guide to 'attention with bodily functions' which will be very useful in your daughter's case.
http://www.benefitsnow.co.uk/dmakers/default.asp

The DWP refer to a guide to medical conditions, which may also be useful to have a look at. Although, I can't see your daughter's listed there, there may be other kidney problems it would come under.
http://www.dwp.gov.uk/medical/med_conditions/a-z.asp#a

Lastly, if a claim appears to be over exaggerated, it will mean further scrutiny.
You don't have to fill the forms in a your daughter's worst day ever, to be successful in winning your claim.

Here, just read the first page of this link. It was placed by a DWP decision maker, so is worth taking note of.
http://forums.moneysavingexpert.com/showthread.html?t=1250001&highlight=thanatos

Good luck,

Regards
Munchie

tiannaleigh

Scattynat wrote: »

Evening everyone ...

I have been reading through the posts on DLA on this forum for the past two weeks, hoping to get some insight into this flipping form. So far no luck, so gonna just ask and hope someone can help me!

Hi ,my daughter was 4 last sunday and 2 days ago I received a letter from dla saying she had received higher rate dla,I was told by many people before I claimed that it wasnt worth it as all toddlers have extra care needs so I wouldnt be able to prove that she needed extra help .I understand how upsetting it is filling out the forms,I couldnt do it but ended up getting a professional to fill it in for me,she just asked me questions and filled form in in her own words then read it back to me to make sure i agreed.
you cant lose anything by filling in the form ,hope everything goes o.k for you
all the best,from tiannaleigh