PIP, DLA and AA
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DLA

tori04tori04 Member Posts: 9 Listener
Hi, 

I have just applied to DLA for my son who has  a microdeletion of chromosome 16. I just wondered what other parents experiences and success rates were and how long DLA is currently taking to assess claims. 
My son is 7 almost 8 and cannot do many things that a child his age can - he struggles with his speech and struggles in school, he is receiving a lot of support in school, he needs supervision and constant promoting to wash and go to the toilet. He isn't aware of dangers either and will jump into the deep end of a pool without arm bands and will try to walk on the road and has had to be restrained as he will run across. 
Thanks for reading 

Replies

  • janer1967janer1967 Member Posts: 9,127 Disability Gamechanger
    Hi @tori04 Welcome to the community its great to have you on board.

    Unfortunately at the current time there are long delays in all applications for any benefits, as you can imagine with lack of staff and resources and increased number of claims to process
    Sorry tbis may not be very helpful but it is hard for anyone to advise length of wait as depends on area and workload of admin dealing with your claim.

    I am sure other members can give you advice on their experience of applying for DLA for their children
  • tori04tori04 Member Posts: 9 Listener
    Thank you for your response. Ges hopefully I will get some answers. Thanks again 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hello @tori04 and welcome to the community. Did you have any help filling in the application form? 
    It typically takes 8-12 weeks for a decision from DLA, but it can be slightly longer at the moment. I hope you're not kept waiting too long. Best of luck and please let us know how you get on. :)
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • tori04tori04 Member Posts: 9 Listener
    Hello, 
    Thank you 😊 no I did it on my own - I have just posted it. I enclosed a letter from my sons pediatrician stating he has a micro deletion and the challenges he faces every day, I said several times that he cannot do the same things that a child of his age is usually expected to do etc choosing clothes , he cant put his shoes on and he needs constant promoting with personal care etc I also said that his behaviour is very unpredictable when walking as he has been known to run into the road and he wouldnt be able to ask for directions due to his speech and language complications. My son has a lot of help in school  he has an IEP and a second educational psychologist.  It's not professionally written but yes I will definitely let you know the outcome. 

    Thank you 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    edited June 2020
    It definitely doesn't need to be professionally written so don't worry about that @tori04. My main thinking here is with someone helping with the forms they can help prompt and remind you of things to include. From experience can be very easy to forget some of the extra things you do and care you give each day because it's normal for you. It's important to give real world examples but it sounds like you've been very detailed and thorough in your approach. Fingers crossed for you. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • tori04tori04 Member Posts: 9 Listener
    Thank you so much, yes I was writing a lot as not to miss anything. Hopefully the outcome will be one that will benefit my son. 

    Thanks again 
  • tori04tori04 Member Posts: 9 Listener
    I have been reading lots about this today and completely forgot to write on the form what happens if he doesn't get help ☹ I hope this wont deny my application. 
    Are there any success stories for microdeletion? 

    Thank you 
  • tori04tori04 Member Posts: 9 Listener
    Hello! 

    Just an update. 
    I phoned DLA this morning as I hadn't heard to say they received my form.
    However not only had they received my form but they had made a decision with 10 days. 
    They have awarded my son low care, from what I put on the form I was hoping he could get low rate mobility and middle rate care. 
    I won't out in  mandatory reconsideration as I would worry they may take him off it and I don't want him to have an assessment or attend an appeal. 
  • janer1967janer1967 Member Posts: 9,127 Disability Gamechanger
    So glad you have a decision and quickly too . It may not be what you wanted but better than nothing 
     However do appeal if you think it is worth the fight 
  • tori04tori04 Member Posts: 9 Listener
    Thank you , I was amazed when she told me! Yes it is better than nothing. 
    Depending on what the decision letter says ( hopefully I receive it tomorrow ) I will put in a MR but if that is declined I wouldn't then appeal it. 
  • janer1967janer1967 Member Posts: 9,127 Disability Gamechanger
    Ok most MR dont change the decision especially if you dont put much different to application . I do understand your reasoning . 
  • katho31katho31 Posts: 694 Member
    Hi @tori04, happy you got a decision quickly, i hope when you get the decision letter you'll know a little better, good luck and take care  :)
  • tori04tori04 Member Posts: 9 Listener
    Thank you all 😀
  • tori04tori04 Member Posts: 9 Listener
    Hi all,

    I was amazed that DLA took 3 days to award lower rate care but I received the paperwork today and it didn't really say why my son didn't get it. But I did write a MR letter and sent a copy off email off my sons school describing all the help he gets. It is a lot. 
    I was shocked he didn't get low rate mobility as he would run in to the road, he doesn't understand the dangers and he wouldn't know how to get home in an area he doesn't know ( this is on the descriptors) most 8 year old would. He couldn't ask someone for directions as my son couldn't describe where he lives due to his speech. 
    He also takes his armbands off when swimming and jumps into the deepend as he doesn't understand the dangers. I have sent it off today but we will see. I can't see them taking the low care off him as they made a decision so quickly  but who knows. 
    Thank you for reading. 
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