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Financial support and care for my disabled 18 month old

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Wendy1986
Wendy1986 Community member Posts: 6 Listener
hi my name is wendy, I have a 18 month old disabled son he has a condition called arthrogryposis affecting his lower limbs and muscle tones, he’s a little charmer tho, from the day he was born I didn’t let his condition get to me instead I felt privileged to be given a son that needed additional care. Emotionally I have been suffering as my limited funds that I receive goes mainly on his medical care getting him to various hospitals up and down the country meaning I’ve had to neglect other bills to fund it. The support worker I do have at the moment is more worried about my financial state rather than helping me get the right stuff to fund his medical care where as I know that I just don’t have enough to pay for both especially when hospital appointments aren’t all set in advance. 
Anyway about my son he is truly remarkable how he’s so happy to do his physiotherapy and enjoys the interactions with children with similar health needs, his condition affects his lower limbs mainly legs but have also noticed that due to low muscle tone he’s got restrictions in his arms and shoulders too. Other than this he will charm the pants off anyone who meets him

Comments

  • WinstonSmith
    WinstonSmith Community member Posts: 1 Listener
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    Wendy, get your Support Worker, they sound good, and GP to get every possible medical aid for your son. Ask the SW about any benefits for a disabled child   Alsoinsist hospital appointments are set in advance.
  • Wendy1986
    Wendy1986 Community member Posts: 6 Listener
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    Ive applied for the dla for him and keep getting turned down I’m now waiting on a tribunal to get it, if that fund was there for what I’d use it for my other funds would go on my bills and getting me out of debt but my support worker don’t seem to understand that part
  • Glen76
    Glen76 Community member Posts: 13 Listener
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    Good luck with the DLA appeal, if you are successful you will look at the care component part only due to your sons age, if you do win and hopefully you do then depending on how much you earn you may be entitled to Carers allowance and if you inform HMRC about the award (if won) they will revise your tax credits award. Without the DLA award you are limited on getting additional financial support. Without our knowing the ins and out of the financial situation but here are some links  https://grants-search.turn2us.org.uk/ 

  • Wendy1986
    Wendy1986 Community member Posts: 6 Listener
    edited November 2018
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    Thanks for that this is what I have been saying to my support worker without the dla to support hospital funds all my other finances are short because there is nothing else I can get until that’s sorted out.
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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    Hi @Wendy1986 welcome to the community!

    Sorry to hear about your current situation, sounds very stressful! Have you tried our benefits calculator? It can help you to find our what financial support you may be eligible for!

    We do have lots of information regarding DLA which may be of use to you.

    I have also found The Arthrogryposis Group with lots of specific information and helplines!

    Do let us know if we can be of any further assistance! :)
    Disability Gamechanger - 2019
  • Glen76
    Glen76 Community member Posts: 13 Listener
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    Not sure when you appealed if you stated that you could attend at short notice. This can happen if people withdraw or can’t attend the allocated time slot, so if there is a space you maybe able to get seen be them. If you haven’t you could phone the tribunal service and say you are happy to have less than 14 days notice but only do it if you have all the information you need as sometimes it is better to wait to give you time to get any extra information (medical evidence) you
    may need. Not sure if you are claiming benefets or working, if you are in receipt of housing benefit, if you are and you are not getting full housing benefit then you could ask for a discretionary housing payment to top up the rest. If you are in debt for energy there is assistance https://www.citizensadvice.org.uk/consumer/energy/energy-supply/get-help-paying-your-bills/grants-and-benefits-to-help-you-pay-your-energy-bills/
    If not it looks like the council may have assistance https://www.turn2us.org.uk/Benefit-guides/Emergency-Information/Local-Welfare-Assistance

  • Wendy1986
    Wendy1986 Community member Posts: 6 Listener
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    Thanks
  • Richard_Scope
    Richard_Scope Posts: 3,636 Scope online community team
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    Welcome to Scope's community! It's great to have you here.  Just to get you started we have a How To Guide here, you can see all the latest posts here, jump in and get involved and don't worry we are a friendly bunch!  
    If you need anything, just let us know.


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  • Wendy1986
    Wendy1986 Community member Posts: 6 Listener
    edited November 2018
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    Glen76 said:
    Not sure when you appealed if you stated that you could attend at short notice. This can happen if people withdraw or can’t attend the allocated time slot, so if there is a space you maybe able to get seen be them. If you haven’t you could phone the tribunal service and say you are happy to have less than 14 days notice but only do it if you have all the information you need as sometimes it is better to wait to give you time to get any extra information (medical evidence) you
    may need. Not sure if you are claiming benefets or working, if you are in receipt of housing benefit, if you are and you are not getting full housing benefit then you could ask for a discretionary housing payment to top up the rest. If you are in debt for energy there is assistance https://www.citizensadvice.org.uk/consumer/energy/energy-supply/get-help-paying-your-bills/grants-and-benefits-to-help-you-pay-your-energy-bills/
    If not it looks like the council may have assistance https://www.turn2us.org.uk/Benefit-guides/Emergency-Information/Local-Welfare-Assistance

    I have ticked I am available to attend at short notice 
  • Wendy1986
    Wendy1986 Community member Posts: 6 Listener
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    Ami2301 said:
    Hi @Wendy1986 welcome to the community!

    Sorry to hear about your current situation, sounds very stressful! Have you tried our benefits calculator? It can help you to find our what financial support you may be eligible for!

    We do have lots of information regarding DLA which may be of use to you.

    I have also found The Arthrogryposis Group with lots of specific information and helplines!

    Do let us know if we can be of any further assistance! :)
    I’m a member of TAG I’ve also got a few arthrogryposis forums where I can speak to other mums with similar traits as my boy, as for DLA I was on a forum on Facebook I ended up leaving the forum as a lot of the mums were really unsupportive and instead of giving advice or help gave some very nasty comments so felt really isolated.
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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    I am really sorry to hear that Wendy :( I can assure you that our community is a supportive and friendly one :)
    Disability Gamechanger - 2019
  • steve51
    steve51 Community member Posts: 7,147 Disability Gamechanger
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    Hi @Wendy1986

    Welcome it’s great to meet you today.

    I’m very very sorry ? to hear about your current problems.

    Here’s some info for you below

    https://www.scope.org.uk/support/families/diagnosed

    https://www.scope.org.uk/support/families-hub

    Please please let me know if I can help/support you further???


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