DLA Higher Rate

[mcpound]

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.

Hi IHS
Thank goodness for your mum's sixth sense. Like you my son does not wake up in the night when going low. I checked his bg once and he was 1.8mmol. Thank god I checked on him. Someone I know thought their child was stable overnight but had cgm for a week to help with daytime issues. They discovered that although her bg was fine at bed time she dropped to between 2-3 mmols after midnight and stayed there for hours. Her bg would rise to an acceptable level before she woke up and everyone was non the wiser.

 

[Deleted Account]

Please excuse my ignorance: I was diagnosed with T1 as an adult so never experienced parental management.
I am finding it difficult to understand how the number of times a parent gets up in the night correlates to how much money you are entitled to. What are the extra costs? I ask because the government explains that "Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child".

 

[azure]

@helensaramay Some information here:

http://www.diabetes.co.uk/disability-living-allowance.html

Extra care is a feature.

 

[mcpound]

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.

My son is 8 now and if his hypos were infrequent and he woke up when low believe me I would be more than happy to leave him to it! Unfortunately that isn't the case for him and many others with type 1

 

[sprogno8]

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!

There is an excellent webpage for any of you having trouble with Benefits, whether that be ESA, DLA to PIP or Tribunals it's a brilliant site & well worth signing up to. http://www.benefitsandwork.co.uk/ Hope this helps good luck !

 

[azure]

This thread is here to provide help to the OP and others in the same situation. We do not know the full details of members posting here, and it's wise to bear in mind that we are all individuals, as are those we care for.

This thread is not the place for discussions on the merits of the benefits system nor for criticism of other members for receiving benefits.

 

[shivles]

Many of you are being horribly judgemental! If the OP is still around after all these replies I believe it's standard to drop it at 14 as most kids at this point are self managed to a degree however if your daughter still needs you to check on her in the night I'm sure you will be able to argue against the decision

 

[shivles]

On another note the amount of parents not testing in the night is astounding, I'm currently checking my 16 month old 3 times a night and will always at least once, must be nice not to have the worry of night time hypos

 

[novorapidboi26]

All parents are different, I am pretty sure most parents will be checking overnight until they reach double figures or even if they are happy their levels will stay steady overnight...which is possible, even with the unpredictable growth and hormones...

the worry of night time hypos will always be there, regardless of the number of times you test unfortunately...

 

[mcpound]

On another note the amount of parents not testing in the night is astounding, I'm currently checking my 16 month old 3 times a night and will always at least once, must be nice not to have the worry of night time hypos

I agree Shivles. This week has been bloody awful at night time. I finally got to sleep at 5am after correction after correction trying to get my sons bg down from 17. I feel so guilty he was high all night aswell. Hoping for a better night tonight and some sleep

 

[copepod]

On another note the amount of parents not testing in the night is astounding, I'm currently checking my 16 month old 3 times a night and will always at least once, must be nice not to have the worry of night time hypos

Many parents of 16 month olds have disturbed nights, even without a recent diagnosis of type 1 diabetes, but for the sake of parent and child, reducing number of night time tests is a wise aim. Comparison with a child who doesn't have the condition is part of the assessment process for DLA. Obviously, frequency of tests needs to increase during periods of illness, but that's not "most of the time", so an end of Higher Rate Care of DLA within a couple of years of diagnosis, or when child is able to test themselves. Of course, this often happens during teenage years, when hormones and rebellion tend to happen.

 

[azure]

Just a reminder to anyone having trouble that the CAB can help with benefits forms. Also, another reminder that every child is different and their needs may vary