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DLA Higher Rate

S

sjpgp

Newbie
Messages
2
Type of diabetes
Type 1
Hi, has anyone else gone to tribunal over the DLA? They have dropped my 14 year old daughters level to medium rate because they think that she is now old enough to check herself in the night? I'm outraged that we have to go to tribunal to prove that we as parents need to check her, this is a life threatening illness not to be messed with! Everyone I speak to even the professionals cannot understand why, I know they have got to cut back but they are doing it to the wrong people! So upset and angry!
 
Fairly sure it's normal, she won't receive any dla for diabetes after 16.

How long will you continue night testing for? I have to say I never had any night testing even as a 2 year old.
 
How often do you test her and how long each time? Any attendance has to be in blocks of 20 minutes or longer to get the higher rate - this is the info I was given when my son was on DLA at under 16 (not diabetes he has autism - but it's not the condition but the extra care that they need more than a child of their age that counts)
 
At the moment her levels are all over the show due to hormones kicking in. I checked her 3 times last night due to her levels running high.
 
sjpgp said:
At the moment her levels are all over the show due to hormones kicking in. I checked her 3 times last night due to her levels running high.
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If she isn't running low why get yourself up? Surely it's better for a good nights sleep?
 
sjpgp said:
At the moment her levels are all over the show due to hormones kicking in. I checked her 3 times last night due to her levels running high.
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Hi there and welcome to the forum
i know my reply does not directly answer your specific query and I am sorry that you have to join the forum because you have a child with Diabetes-- it is a life changer for the whole family.
Is your daughter on an insulin pump ? The NHS are pushing pumps at children as a much more effective way of managing diabetes and perhaps with your daughter wearing a pump -- you might not have the getting up at all hours to test and make sure she is safe.
 
You are entitled to the middle rate if,
  • MIDDLE RATE

    This is awarded if a child requires frequent attention throughout the day or prolonged and repeated attention at night for help with bodily functions. Or, a child needs continual supervision throughout the day to prevent danger to themselves or others, or at night they require another person to be awake to watch over them for a prolonged period of time, or at frequent intervals in order to avoid danger to themselves or to others.
    DLA allowance for children. A guide for parents.
    https://www.diabetes.org.uk/Documents/Advocacy/dla/0662A-DLA_Children's Guidelines_v5-1115.pdf
Read through the guide and see if you think you qualify for a higher rate. The information you have given so far looks as though it is the middle rate you are entitled to.
 
sjpgp said:
At the moment her levels are all over the show due to hormones kicking in. I checked her 3 times last night due to her levels running high.
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At 14 she is old enough to take the responsibility herself for testing if she needs to in the night. At some stage you are going to have to stop being over protective by doing everything for her. Even if benefits were available when I was a young child my parents would not have claimed, they had the attitude of I was their daughter not the states and they were responsible fr my well being and care.

Do also be aware that the tribunal can take away the award already given.
 
Whilst I agree in some part with what you say such as a 14 yr old if capable taking responsibility- it's harsh and unfair to judge someone claiming what they may be entitled to - none of us know or are indeed entitled to know the OP or anyone else's circumstances as to why they claim a benifit.
 
I was not judging at all, I was just stating my parents views on claiming benefits for me as a child regarding diabetes.
I will restate the mother should not be getting up in the night to sort her daughters diabetes out. Invest in an alarm clock for the daughter so if she must test her levels at certain times of the night she can do so herself.
 
Ok thanks for clarifying but it may be the written word it just didn't come across to me that way - anyway will leave it there don't want to derail the thread

I agree totally with you by the way on the part about OP helping her daughter to be more pro active and responsible for her testing but that's not always easy either - teenagers are breed all their own lol
 
My daughter has been type 1 for 10 years (from the age of 2) and hasn't had higher rate dla since the age of 10. My 13 year old son was also diagnosed with type 1 in December last year and has only been given middle rate. I shouldn't expect to get higher rate for your daughter. I live with hormones every day, it's something you just have to deal with.
 
My daughter who is 4 was diagnosed last November and she has only been on the middle rate, I never expected her to get the higher rate to be honest as even tho I have to do her checks etc for her and watch what she eats she's not disabled or visually/verbally/mentally impaired
 
Engineer88 said:
Fairly sure it's normal, she won't receive any dla for diabetes after 16.

How long will you continue night testing for? I have to say I never had any night testing even as a 2 year old.
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Really? I've never met a parent of a young child with type 1 that didn't test their children at night. Maybe you were lucky to be fairly stable overnight. I wish we were in that position but every child with type 1 is different so each parent has different challenges. Overnight BG stability is certainly ours.
 
Hi Hi Sjigp
Just read this post and wondered how you are getting on?
I hope you can ignore the ' your a parent just get on with it replies'.
We know loads of other children with type 1 and each one is different with different challenges so no one can know struggles you and your family face. Dla is there to support families with extra difficulties and looking after a child with Type 1 is certainly that. I don't care what anyone says, it can impact every area of your family life and most friends without type 1 in their family will not understand.
If your child is fairly stable or you have a strong support network that's great however it does other families that are struggling a disservice by putting them down and telling them to ' just get on with it'. I feel it contributes to the vast misconceptions people have about Type 1 and the lack of support in schools for our children who are expected to ' just get on with it' with minimal support or understanding.
I do check my son at night, always have and when he is a young teenager I will continue to do so if required aswell as teaching him to take responsibility. Seriously, what parent doesn't want to keep their child in the best health possible?
I wish you well Sjpgp and I hope you managed to get the outcome you were after. X
 
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No I wasnt stable overnight but its not something that was even thought of in the early 90's. It did however teach me to get myself up and deal with it and take responcibilty for myself.
 

There were no meters when I and many others were diagnosed, so nope no testing at night for obvious reasons Mother would check me by poking head around the door when she went to bed and that was it until the morning. Yes I had lows in the night but then hypo treatment was by the bed I wasn't expected to disturb anyone else end of story. I was diagnosed at the age of 4 1/2, from the age of 7 I was expected to sort my own hypos out at night.

I can fully understand a parent checking a very young child but nope not a 14 year old.
 
We can debate on whether a claim should be made but ultimately if you meet the criteria set out you have the right to claim.

Of course I agree with the fact that 14 is in my opinion a good few years past the point where a young person would be looking to take control of their BG management.....

I was 15 when diagnosed and was on my own from day one....and it was fine.....

levels of maturity will be a factor and of course the dependencies a child has formed growing up too...
 
Unfortunately for myself being diagnosed type 1 in the mid 60's just before my 11th birthday, I never woke up in the night to be able to treat a night time hypo so mum usually used her intuition, had one ear cocked and seemed to have a 6th sense to know if I was going low and get something sugary liquid into my mouth, massaged my cheeks and then as I came back to being able to mutter, then get me to drink some lucozade and eat a biscuit. I was usually dripping wet with sweat. I later found out that my alpha cells had been destroyed as well as my beta and this more or less stayed with me to this very day, so I for one understand why a parent checks on their kids in the night especially if they are not able to wake up to treat a low bg themselves.
 
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