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DLA for a child not sleeping

Jeanie_ZzJeanie_Zz Member Posts: 6 Connected
edited June 2020 in PIP, DLA and AA
I hope it’s ok to jump right in and ask questions.
My question is about DLA for a child. I tried speaking to cab but they weren’t very helpful and basically said not to apply because we’ll get turned down because she isn’t “disabled”. They’re probably right but I wondered if anyone here has experience of toddlers and DLA? 

A bit of history; I have 4 kids so this isn’t exactly my first rodeo. I know all kids are different but as a parent you get a feel for what’s normal and what isn’t.

My youngest daughter just turned 2. While she isn’t disabled as such I’m wondering if I can apply for DLA based on her extra care needs. 

She’s still yet to sleep through the night which I know in itself isn’t too abnormal. But the longest period of sleep she’s ever had is an hour. Then takes an hour of comforting and resettling before she finally naps for another 20or so minutes and start again. The reason for this is because of her allergies and reflux. She’s under a paediatric dietician and has a lot of food allergies and foods she can’t tolerate. We’re still having to eliminate things as although we’ve determined the key causes she’s still not right, often in a lot of discomfort and we’re also are working with an allergist to determine the environmental allergies that also are affecting her. 
All night every night she’s writing in pain with her stomach and reflux. To to mention (and sorry for too much info) her horrendous toilet habits. She poops around 10 times a day, diarrhoea. Sometimes with blood sometimes without. She needs so much extra reassurance with food, toileting and extra comfort generally, and obviously someone awake with her pretty much 24/7 comforting and massaging her tummy etc. 
We also have to be so careful with food and ingredients, and when we’re out as she’s contact allergic. For example we went to child’s play centre about 6 months back and she came up in hives in the ball pond, possibly to food or something someone else had brought in their or eaten before playing.

Cab said because she’s not disabled she won’t get DLA but I wondered if they take any of this stuff into account? Or would it be a case of “well all toddlers require extra supervision and don’t sleep well”.

I know in my heart she has care needs above and beyond what any of my other kids had/have but I don’t know how DLA works. All advice welcome! 

Replies

  • janer1967janer1967 Member Posts: 9,166 Disability Gamechanger
    Hi and welcome to the community, Im no expert on DLA for children but as a starting point I would look up what the descriptors are that they score against and see where you think your daughter would score points before deciding to apply. You should be able to find these on the gov website or through google.

    I hope someone else may have more information for you
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jeanie_Zz

    Good Afternoon & Welcome it’s great to meet you today😃

    I’m one off the Community Champion’s here at Scope.

    We are all here to help & assist any new members.

    Currently DLA is being fazed out & it will be replaced with a new benefit called PIP.

    We have got a “Benefit Calculator” on our site where we can put your child’s details in & it will let us know what Benefits are available for your child.

    Please please let me know how you feel???

    @steve51

  • woodbinewoodbine Member Posts: 3,751 Disability Gamechanger
    Hi @Jeanie_Zz and welcome to scope, @steve51 I haven't seen any current plans to faze out DLA for under 16's?
    some advice from CAB here>
    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/before-you-claim-dla/claiming-dla/
    my advice is given freely and is correct to the best of my knowledge.
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jeanie_Zz @woodbine

    I am very very sorry but I was under the impression that dla was eventually going to be fazed out sorry again.

    @steve51
  • chiariedschiarieds Member Posts: 7,983 Disability Gamechanger
    Hi @Jeanie_Zz - Welcome to the community from me too. Of course it's fine to ask questions straight away, & we'll all do our best to answer them. I'm sorry to read about your little girl's problems. A child doesn't need to be considered 'disabled' to get DLA. It certainly sounds like she needs more care than a child without her problems. To be eligible your daughter would need to be expected to have these problems for a further 6 months. It would be helpful if you could get some input from her dietician to corroborate if this is the case.
    & also use the helpful link woodbine has given, especially about filling in the form. The CAB might not have been helpful, but their website is!
    Kindly keep in touch, & let us all know how you get on. If you have any further questions at any time, please just say. Also do use this forum to just chat, as there's usually someone about. :)

  • woodbinewoodbine Member Posts: 3,751 Disability Gamechanger
    @steve51 no need to appologise,benefits are a minefield
    my advice is given freely and is correct to the best of my knowledge.
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @woodbine

    Many Thanks.

    Yes they don’t get any easier.

    Sorry again 😃
  • mikehughescqmikehughescq Member Posts: 5,980 Disability Gamechanger
    Mmm. Start again. 

    1 - your child clearly has a physical impairment. I suspect CA advice was based on you emphasising lack of sleep as the trigger for care whereas it’s actually the allergies and reflux which are the trigger. Lack of sleep can be a health condition in itself but here it’s the other things. Lack of sleep is a symptom not a cause. 

    2 - DLA for children is not being phased out and nor is it based on descriptors. 

    3 - DLA for children aged 2 is for the care component only and as well as detailing attention/supervision you need to show that’s what’s being done is substantially in excess of the level of care you’d give to a healthy 2 year old. Note that’s not just in excess as in “more than” but substantially in excess i.e. a heck of a lot more than. That’s usually the biggest stumbling block and it’s also obviously even harder the younger the child. 

    4 - DLA for children is one of the rare instances where I would say you will always need representation. I’m sorry CA may have not helped on this. Either go back and deal with someone else or find another advice service using https://advicelocal.uk/

    5 - I’m going to disagree with @chiarieds here. DLA for children is generally under served on the internet and the CA web site is just a poor version of very very basic info available elsewhere. It really won’t help at all in any meaningful way.

    This is out of date and also imperfect but it’s also more detailed than most. https://contact.org.uk/media/975632/claiming_dla_for_children.pdf. Again it emphasises  that you need representation. 

    6 - I’m not a fan of keeping a diary, which is very common advice for disability benefits. Detailing when you need to intervene with a child is helpful to a point but as ever what a decision maker needs to know is not so much frequency as the nature of the intervention. What happened? When? Why did it happen? How was it related to the health condition? Was hospital care needed? Who witnessed? Good luck keeping a diary on that!!!

    However, for children with tired parents just doing a diary for a day or two can be a real eye opener and will help trigger recall of stuff that’s easy to forget even when happening regularly. 
  • thejollyrogerthejollyroger Member Posts: 10 Connected
    Hi, your child sounds ill to me.
    can you let your doctor have a look at her? The doctor will be able to tell you if you stand a good chance of receiving DLA or not. To get your doctors backing for claim is vital, so get it in writing what her ailments are and how they affect her and you.
    hope this helps.



  • mikehughescqmikehughescq Member Posts: 5,980 Disability Gamechanger
    With all due respect @thejollyroger 52% of DLA claims succeed with no medical evidence at all and I’ve yet to meet a GP who could cite a single line of the DLA regs. Medical evidence can be helpful in such cases but it’s hardly critical.
  • chiariedschiarieds Member Posts: 7,983 Disability Gamechanger
    Apologies @mikehughescq , I was trying to be diplomatic here. I saw no need to say DLA for children wasn't due to be phased out, nor that it wasn't based on descriptors. I hoped by giving a link to the form this would of itself be self explanatory. I nearly mentioned only the care component could be claimed for a child under 3, but again, the form detailed this.
    I must admit I didn't read all the way through the CAB's website link, but did note it gave a link to Contact's info on DLA, which incidentally is just slightly more recent than the link you gave.
    I was in touch with Contact a Family/Contact a long time ago about my youngest daughter, hence why I noticed their link.
    I take onboard your advice as always, & that representation is needed in 'probably' most cases. Playing Devil's advocate here, but my youngest daughter had such severe breathing problems from birth that she needed a tracheotomy at 1 week old. I didn't claim DLA later however, as with my training I coped.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Jeanie_Zz, welcome to the community!

    I just wanted to check in to see how you were doing. :)
    Community Partner
    Scope

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    Complete our feedback form to help us to improve your community.
  • Jeanie_ZzJeanie_Zz Member Posts: 6 Connected
    Sorry if I caused some tension, I’m really grateful for all the responses as I know everyone is trying to help. 

    Where you guys say about representation being needed is that for help filling in the forms or because it’s likely to go to tribunal? Sorry if it’s a stupid question! 

    I must admit I do feel bad thinking about claiming DLA because while she has extra care needs and I’ve had to give up work because not only was she reacting non-stop at the childminder I just couldn’t manage it on so little sleep as I have health conditions myself too.

    @chiarieds your daughter needing a tracheotomy at 1 week old must have been a terrifying experience. Thank you for your warm welcome!
  • janer1967janer1967 Member Posts: 9,166 Disability Gamechanger
    Hi again 

    I think you should seek representation first to see if it is advisable for you to claim and also to complete forms. 

    You are not at a tribunal stage just thinking of applying 
  • Jeanie_ZzJeanie_Zz Member Posts: 6 Connected
    Thank you I knew that I’m not at the tribunal stage (I haven’t even got forms to fill in haha) but wasn’t sure if they meant representation to help fill in the forms or representation ready because it’s most likely going to be declined and I will end up at tribunal. 
    I have looked through the forms online and I really don’t think I can go through with it anyway. They don’t seem to apply to our situation and most of the questions are probably meant for older children because of course a 2 year old needs help with most these things. 
    I’m sorry to have wasted everyone’s time but I’m glad I found this place.
  • mikehughescqmikehughescq Member Posts: 5,980 Disability Gamechanger
    chiarieds said:
    Apologies @mikehughescq , I was trying to be diplomatic here. I saw no need to say DLA for children wasn't due to be phased out, nor that it wasn't based on descriptors. I hoped by giving a link to the form this would of itself be self explanatory. I nearly mentioned only the care component could be claimed for a child under 3, but again, the form detailed this.
    I must admit I didn't read all the way through the CAB's website link, but did note it gave a link to Contact's info on DLA, which incidentally is just slightly more recent than the link you gave.
    I was in touch with Contact a Family/Contact a long time ago about my youngest daughter, hence why I noticed their link.
    I take onboard your advice as always, & that representation is needed in 'probably' most cases. Playing Devil's advocate here, but my youngest daughter had such severe breathing problems from birth that she needed a tracheotomy at 1 week old. I didn't claim DLA later however, as with my training I coped.
    @[email protected] Nowt to apologise for. 

    Claiming DLA for a child is complex for many reasons, Lots of parents do it cos they were told to by a well-meaning medical professional (which often translates as them wanting to offer something positive at a point when they may have nothing else to offer). Some parents do it because they almost feel a need to be compensated. The dynamics of it are genuinely fascinating. I’m not sitting in judgement when I say that. Far from it. 

    @Jeanie_Zz I meant representation as in someone who can assist with getting the claim pack right but also represent at an oral hearing as a significant number of cases do get that far. Mostly because of the failure to address the “substantially in excess of” issue. 
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