5 year old diagnosed with spastic diplegia last year can anyone give any advice - Page 2 — Scope | Disability forum
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5 year old diagnosed with spastic diplegia last year can anyone give any advice

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  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    edited October 2019
    Hi @mum1490. Did you appeal the decision at the time? I've just had a quick chat with our benefit adviser @Joanne_Scope who has said it could be possible for you to both appeal the old decision and submit a new application. 

    Did you have any help filling in the forms the first time? There's a charity based in Essex called 'Families in Focus' that offer help to complete them which might be useful to you. If your daughter is successfully awarded middle or higher rate care component of DLA you'd then (assuming you meet the other criteria) be able to claim Carer's Allowance too.
    Community Manager
    Scope
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    Hiya,

    I didn’t appeal the last one I asked about it this time and they told me I have to fill in another? I would really appreciate anyone helping to fill in the form as I’m currently off with my daughter again at the moment because she is ill.
    ??
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    The Families in Focus charity can help you fill in the forms. I would ask them for help to appeal the first decision as well.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    @Richard_Scope @Adrian_Scope thank you I’ll contact them ?
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    That's great, please let us know how you get on. :)

    It's possibly a little far but Families in Focus also run activity sessions for disabled children in Chelmsford and a drop-in session for parents/carers in Braintree.
    Community Manager
    Scope
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    I will do. Thank you all so much absolute ⭐️’s 
  • ChristineHughson7
    ChristineHughson7 Community member Posts: 4 Listener
    Hello my lovely @Mum1490

    It can feel like a complete rollercoaster of emotions early days with all the paperwork and appointments. What I would offer as a reminder is that yes, diagnosis can give us an understanding of the physical limitations of our child and how that might play out. However, it is in no way a marker for what your child can achieve.

    She will find her way in life and it sounds as if she has an excellent support in you and your husband. I would hold that in mind as it can feel a bit of a bombardment at times in the early days with lots of competing information from professionals. 

    Our little girl on paper in all the professional documents is seen as “severely impaired” - in that she can’t walk, talk or sit unaided. However she is second in her class, full of lovel for life and learning, managing to keep up in mainstream and spelling out stuff using her eyes. Shes better at maths than I am at seven and has taught me more about strength and humanity in her seven years of life than I had learned in my previous 36 years. She’s a legend. So, listen to what the professionals have to say, take what’s useful to you and leave the rest in the room. 

    Yes, I agree that because of the complications of brain injury our children are more likely to be susceptible to developing epilepsy, but it is not a given. And can I say I think that’s a little bit naughty of them to have suggested that, though I understand the need for flagging that up. 

    Ah the joys of DLA I am in the process of redoing our form and we will see how we go with it come January renewal. Good to hear the dudes here have linked you in with support for that. Anything you want to talk about, please feel free to reach out. 

    Wishing you a peaceful day 
    Christine x
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    Aww good that’s wonderful to hear.. Amelie is always smiling and sooo bright nothing gets to her she gives everything a try and I love that! 

    Sophie is amazing I think maths has changed so much now ? nothing like it was when I was at school and I’m 29 

    Have you had to appeal your DLA Too? I’m pretty sure that form has a lot of the same questions but worded differently ?‍♀️ It’s helped so much talking to everyone here ?

    Xx
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    @Adrian_Scope I’ve sent a form into families in focus just waiting for hear back ?? Thanks again 
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    That's great @Mum1490, I hope you hear back from them soon. :)
    Community Manager
    Scope
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    @Adrian_Scope hi Adrian,
    spoke to families in focus but they cannot help me as I’m not in the catchment area 
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Hi @Mum1490, I'm so sorry, their website indicated they covered the whole of Essex.

    Have you ever heard of DIAL? They also help with benefit claims and the South Essex one is actually based in Grays on West Street: https://dialsouthessex.co.uk/

    "DIAL now offers its service between 10am and 3pm on Mondays, Tuesdays, Wednesdays and Fridays. We are closed to members of the public on Thursdays. People can drop in to see us, telephone or email us with their problems. One of our friendly staff or volunteers will be happy to help you. Appointments are needed for help with completing benefit application forms, blue badge application forms, housing applications, Mandatory Reconsideration Letters and Appeal Submissions."

    CAB can also help with form filling but there can sometimes be a wait to get in: https://www.citizensadvice.org.uk/local/south-essex/contact-us/?serialnumber=100353

    Community Manager
    Scope
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    @Adrian_Scope That’s brilliant Adrian thank you do I make an appointment via the link you sent? 

    I did look at the blue badge but is says you have to be in receipt of other benefits such as Disability Allowance. 


  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    No problem at all @Mum1490.  I've copied their contact details below and they'll be able to book an appointment with you and go through your options. 

    DIAL SOUTH ESSEX

    THE BEEHIVE COMMUNITY RESOURCE CENTRE

    WEST STREET

    GRAYS, RM17 6XP

    Tel: 0333 366 1045

    Mobile: 07786 088538

    Outreach Mobile: 07826 902087

    Email: enquiries@dialsouthessex.co.uk

    Community Manager
    Scope
  • Mum1490
    Mum1490 Community member Posts: 23 Connected
    Hi @Adrian_Scope I’ve emailed them. 

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