DLA- the result!

Oliver has been receiving the high rate for personal care since we first applied.  Nothing for mobility because his legs worked.  We had to reapply just before Christmas and I said to my husband “they’ll lower it to middle rate” and he laughed and said they couldn’t as he was no better in real terms- he still needed 24 hour supervision.

Fast forward to today and I got the letter- middle rate for personal care as he needs helping to toilet for a few minutes through the night and low rate mobility.  What happened to all the other pages of the form?  You know the ones where I wrote about his lack of sleep, his night time wanderings if not supervised, his lack of awareness of danger which means he will try to climb over the stair gate at the top of the stairs if it’s shut and he fancies one of his “lets turn all the lights on in the house and any electrical appliance I can find” nights, his screaming and wailing if he is left too long on his own which wakes the whole household.  The 2/3 hours sleep I am on with him.  The getting him dressed and redressed in pyjamas when he has an accident with trying to keep him calm and quiet in the semi dark, and it goes on.  I provided evidence from school, his doctor, paediatrician, provided numbers for therapists.  Do they actually get in touch with anyone?

Our GP has recently prescribed something that might be able to help with sleep, when we feel he needs it.  Why would it be prescribed if he was a good sleeper?  The mobility I expected, I don’t think it’s right but I did expect it.

Needless to say we are going to appeal it.  Along with all the other things we have to do we now have to put together an appeal- although the rules for this have changed since my last appeal, so I will first have to figure out the new system, no doubt put in place so no one knows what they are doing and the people who need the money get fed up and stop claiming.  How can people who aren’t medically trained make decisions regardless of what the professionals say- it’s absolute madness!

 

xx

7 Comments

  1. How frustrating! My son has a sleep disorder as well and we had the same fear of night time wandering into danger or out of the house. We turned the door knob to his room and locked him in at night to keep him safe. When we talked about it with his Dr., she said, “You have to do what you have to do to keep him safe.” I hope things go well with your appeal and you get the personal care Oliver needs!

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    • We have made his room nice with toys and lighting and now installed a double bed so I can lie with him. Really clingy at the moment with so many changes. Hopefully we’ll be able to leave him at some point but not while it’s causing him distress.
      Max used to be gated in and bars on his window as he got halfway out of it once. Now he needs nothing so hopeful in ten years or so Olly will be the same 😁
      You have to keep them safe, whatever it takes. Thank you for good wishes I expect months of back and forth now. Maybe I should send him to live with a assessor for a while

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  2. Oh I am so sorry this is what they’ve decided is suitable for you and your family. Do appeal it as you are all working so hard to keep him safe he should be getting something for that. As an aside I am in awe that you are able to function on that little sleep over such a long period of time – I would be ready to throttle someone at the slightest provocation at that stage!
    We had the same with Husband, everything we had evidenced and given examples of was just ignored. It’s as though they think we are making it up!

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  3. DLA applications are just evil. Ours is coming up soon. Did you put in that he has medication to help him sleep? I’ve quite often found that’s what pushes you over into the high care band. Does he require any sensory therapy in the night that OT have suggested? Go you for appealing. If they lower ours I will definitely appeal and will go all the way to tribunal if I have to. Sending you strength and hugs xx

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