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DLA stopped please help

tonibb Community member Posts: 5 Listener
Hey hope you are all well. 
Need some advise please if I could. So my son receives DLA and has done for 5 years and currently has just under 2 years before he needs to switch to pip.

so about 6-8 weeks I received a letter requesting information to see if I was still able to be the person who receives his dla never had this before so I rang them and was advised to just sign it and send it back. Did that and thought nothing more of it. On Friday I received a letter dated 17/04/24 the same form, I tried calling but could not get through. Today I have received another letter dated 23/04/24  saying his DLA has being stopped from 10/04/24. I’ve spent over 3 hours on the phone to them today and still no further forward with it. They basically keep saying I need to send the form and then they will go from there they won’t allow me to email it or anything like that. 

I have said that I feel the letters are too close together 6 days is not enough time from them posting, me receiving, competing and sending back to suddenly stop his DLA and they have agreed but still aren’t helping resolve this. 

I have now sent this form twice and did calm them when i got the first letter which they have a record of me calling them. 

I am so stressed as his payment is due a week tomorrow and we now won’t be receiving it and I’m not sure what will happen with carers and UC. I suffer with anxiety as it is and this has really set me off and don’t know what I’m going to do financially as it’s so much to lose 🤢🤢🤢


  • woodbine
    woodbine Community member Posts: 12,133 Disability Gamechanger
    I think all you can do is wait and see if it's paid next week, and if it isn't phone them and ask why. Usually best if you phone at 9 a.m before they get busy.

    2024 Election won

  • tonibb
    tonibb Community member Posts: 5 Listener
    Thank you, I don’t think my anxiety can wait that long tbh, I literally have all my money planned out etc and the whole uncertainly of what I will lose alongside the DLA is quite daunting and will leave me short of my main bills let alone food shopping and all the other bits 😢😢 

    Especially when I haven’t done anything wrong and sent them the info they requested the day I originally received it but I will try again first thing and hope and pray it can be sorted out 
    thank you 
  • bernadetta
    bernadetta Community member Posts: 14 Listener
    Hi, I'm sorry to hear about those difficulties. 

    I have seen the letters requesting to confirm if the parent still acts as an appointee for a child on DLA, as the child is a teenager and may want to claim into their own bank account, etc. 

    I cannot see how that in itself would give grounds for suspension or termination of DLA, given you sent the response. 

    Have you checked what was the end of the DLA award? Are you able to find the award letter, to be sure his DLA was in fact awarded for the next 2 years? DLA is not automatically given to children until they are eligible for PIP. It has its own period given in the letter, and as any other award, can be reviewed or simply come to an end, and sometimes needs to be reclaimed. 

    If he is still entitled, what the decision to terminate it said? Was there a reason given? The decision cannot be just changed without any grounds. It does not work like this. 

    I wonder if it was an administrative review following, what they understand, as "not furnishing information " meaning you not sending the form back. Which is, according to you, not correct. 

    I would advise you to read carefully all of the letters, especially the DLA award letter from x ago ( the most current) and the most recent one terminating the award. 

    If your son's DLA has been awarded beyond the current date and he is in fact still entitled to it, then I would write a simple letter (response to the most recent one), disagreeing with their silly letter, explaining that:

     1. Current award has not been changed by any official body
     2. You provided requested information on xxx date xxx times. 
    3. It sounds like maladministration and if the decision is not changed, you will raise a complaint
    4. You will further seek financial redress since this decision will have a knock on effect on all the other benefits.
    5. Finally, you seek the explanation of the decision. 

    Keep a copy, send via recorded delivery. Attach copies of the letters you posted (if you have them).

    CA, carer element and disabled child element on UC may stop, you are right, if the notice is sent between the departments. Good news is though, if the DLA gets reinstated, as it sounds like an official error, they will need to put all those elements back in place and pay back the arrears. 

    Which, I appreciate, does not make those things less irritating and I would be equally upset if I were in your position. 

  • tonibb
    tonibb Community member Posts: 5 Listener
    Thank you for this, I have actually managed to sort it, I was lucky enough to speak to an advisor who went above and beyond to sort it out. They all agreed that the timeframe for the letters were incorrect and they have reinstated his DLA. I have resent the letter and sent it recorded delivery so that I have proof it’s being sent. His DLA runs until 30/12/26 the day before his 16th birthday so knew it wasn’t anything to do with that. As it stands at the minute he won’t be able to manage his own money (as soon as he gets money in his account he spends it all on his friends rather than himself) would I still be able to be his appointee when he turns 16 so I can manage it for him? School are doing so work with him around healthy friendships and his TA is working on tasks around budgeting so I am hoping with that it will help. 
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