My son has hereditary multiple exostosis - is he eligible for DLA? — Scope | Disability forum
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My son has hereditary multiple exostosis - is he eligible for DLA?

cookjade115
cookjade115 Community member Posts: 2 Listener
edited June 2021 in PIP, DLA, and AA
Hello.
I've joined today see if anyone can help, my son has hereditary multiple exostosis which they found when he was born my son is now 10years old and has had 9 ops so far and he is due another op the 15th July on his leg. To which with all the hospital trips and ops he has had ive just had give my job and the op on his leg is serious and is 2 week stay in hospital and then 8weeks bed rest for Riley. I did a dla form to see if they could help but they said no they wouldnt help due to they didn't know his condition 
Any information would be amazing 

Thanks 
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Comments

  • Emilyb81
    Emilyb81 Community member Posts: 530 Pioneering
    Hiya @cookjade1 ???
       I was under the impression that its less about the actual diagnosis /illness and more about how the person struggles with or can't do certain tasks? So I'm not sure how or why you can be turned down because they don't know about an illness?
    Do you mean you applied for dla or pip? Because the 2 may have different applications?.... But as I said I am not sure as haven't seen people be turned down for that reason before? I haven't been here long though so others probably have... :smile: hope you manage to get the help/advice you need! 
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hello @cookjade115 and a warm welcome to our community,

    @Emilyb81 is right in that entitlement to DLA is not based on a formal diagnostic label.  Rather, this government website on DLA eligibility outlines:
    ...the child’s disability or health condition must mean at least one of the following apply:
    • they need much more looking after than a child of the same age who does not have a disability
    • they have difficulty getting about
    They must have had these difficulties for at least 3 months and expect them to last for at least 6 months. If they’re terminally ill (that is, not expected to live more than 6 months), they do not need to have had these difficulties for 3 months.
    Contact, the charity for families of disabled children, have an excellent resource 'Tips on completing the Disability Living Allowance form' that is worth a read if you think the above criteria apply in your son's case :)

    Please ask away any more questions you might have.  Also, just to let you know - I've tweaked the title of your thread and moved it to our PIP, DLA and AA category to help other parents who might be wondering the same.  Good luck!
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  • Emilyb81
    Emilyb81 Community member Posts: 530 Pioneering
    Thank you @Cher_Scope  I understand now so dla is still used for children and pip for adults? Learning more each day :smile: I thought pip took over from all dla a while ago! But then I suppose I would only know if I applied for a child so I won't beat myself up too much lol! :smile: hope I haven't confused things more! Have a fab day peeps ?
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    @Emilyb81

    Dla is still the disability benefit applied for children 


    Dla also still exists for some adults who have yet to be asked to apply for pip 

    The process of getting them to apply for pip should be complete by now but like anything there are huge delays 

    If on dla they will be contacted at some time to apply for pip 

    However getting dla doesn't mean they will get pip as the criteria is different and they go through the same process as anyone else 

    All new claimants can only claim pip 
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  • Emilyb81
    Emilyb81 Community member Posts: 530 Pioneering
    Thank you @janer1967 that clears all that up :smile:
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  • cookjade115
    cookjade115 Community member Posts: 2 Listener
    Thank you much. Yes my son has days where he can't even get upstairs I have to carry him up to bed as the pain in his leg is quite bad  we are using ice packs or hot water bottles to ease the pain. And some days you wouldn't know he runs around plays football you couldn't tell but it's the days where he cry's cause the pain. Thank you so much for advise ☺?
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  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
    janer1967 said:
    Dla also still exists for some adults who have yet to be asked to apply for pip 
    The process of getting them to apply for pip should be complete by now but like anything there are huge delays 
    If on dla they will be contacted at some time to apply for pip 
    Just to add, those who were already 65 on 8th April 2013 will remain on DLA and will not be transferred to PIP. 
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
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  • Emilyb81
    Emilyb81 Community member Posts: 530 Pioneering
    Bless him @cookjade115 must be awful watching your child suffering! When mine used to have fits I remember feeling utterly useless because I couldn't do anything to stop them? And when your child's in pain you just want to take it away or have it instead? :disappointed:
    But Riley? Is so lucky to have a supportive mum that is getting him as much help as possible so he hopefully doesn't have to struggle so much!
    Also so many illnesses affect people like that as in one day they can do things and others they can't it's why I don't like it if people say they have seen someone doing things they shouldn't if on benefits blah blah blah? For example read about a couple losing their benefits because someone sent a photo of them taking the bins out??? Flipping ridiculous! People are so nosey and judgmental at times! Anyhoo nobody knows how people are every single day unless they live with them or take care of them? And it's a good thing he is able to still experience football etc even if not all the time? He is able to do things kids do! Makes me smile because so much emphasis is put on the things we can't do ???
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  • Emilyb81
    Emilyb81 Community member Posts: 530 Pioneering
    And thanks @calcotti that's good to know also! Until today I genuinely thought dla was gone! But like I said I'm learning lots here ??
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