Diabetes type 1 DLA (child) application

[Cocteautriplet]

Hi - I wonder if anyone could give a a few pointers. I'm helping a friend apply for DLA for her 4 year old daughter who was diagnosed with type one diabetes earlier this year. I have experience of helping families of children with SEN fill out the form (which is why I'm helping) but l've never helped someone with type 1 diabetes apply before - l've looked at general guidance but would really appreciate any pointers folks could share who've been there.

A bit of background: The 4 year old has an in arm monitor which links to a phone app with alerts of sugars get either too low or too high. She then has manual insulin injections although this will hopefully change to a pump soon.

Her moods can be negatively affected (particularly by low blood sugar) and of course diabetes is a lot for a 4 year to take on which can make her frustrated.
I'm asking the mum to compile a diary of the next week or so so that I can get a feel for how often the alerts come and whe her sleep is disturbed.

Care wise she needsto be near her monitor at all times and have an experienced adult administer insulin. This can limit accessibility to after school / holiday clubs ... she doesn't currently do any clubs but she'd like to.
Mobility - not sure if there's an element here but please do tell me if there's something l've overlooked.
Added costs - I think the family have to buy tape / jelly babies / accessible clothing out of pocket but insulin and sharps are covered on the nhs
There's probably loads I haven't thought of ... any suggestions would be so kind x

My child was just awarded lower rate. On the letter they said its down to her needing additional hour of personal care a day. (Not diabetic). I'd carefully look at all the questions about prompting to eat, administration of medicine. Don't underplay it and perhaps seek specialist advice.
I was a bit disappointed it was lower rate for my kid. (She got lower rate mobility too).

It can sometimes be hard to claim for very young children as they need constant supervision anyway. My daughter has epilepsy and I remember explaining how she couldn't queue places, how standing in line at a theme park was impossible, how she could become unwell and we would have to cut days out short (having bought tickets - theme park example again).

For those asking why Dla?, you wouldn’t leave a four year old with a monitor and an insulin pen and expect them to get on with dosing for their food. A child having a hypo needs rest and treatment and even when blood sugars are back up will be experiencing a cognitive lag and will not be thinking clearly. They will need an enhanced level of supervision in the home or out and about. They cannot apply their own sensors either and need continuous monitoring and support.

OP, the parents also need to think about how much they have to get up in the night to treat highs and hypos. My husband and I used to tag team at hourly intervals when our ds was on injections and when he had a pump which wasn’t managed by sensors (so setting the alarm for 2 hours each). We often worked into the early hours to keep him from crashing down or to get stubborn high blood sugars into range. There are inportant reasons for both, they can’t be left. Once the friend’s son has an integrated pump and sensors things will improve but until then, they need to be hands on for 24 hours a day/ night.

Our Ds has been diabetic since he was 7. I second the poster’s suggestion that the parents, OP, looks at some of the t1 Facebook groups.

Thankyou for doing this, OP. It’s about telling that little boys’s story so that someone who has never met him can see the challenges he is facing and the actions parents have to take so he can live as normal a life as possible.

T1 kids should get DLA. What’s the real kicker is that as soon as they hit 16 it’s unlikely they will qualify. Imagine all those things you have to do as a parent when they have a low in the night, wake up to the alarm, get the glucose tabs etc. Now imagine doing that in your 20s when you are the one with low blood sugar, and then you have to drag yourself up in the morning after low BS and interrupted sleep and get yourself to work. You face the same calculations for meals as an adult that a parent does for a child, the same worry, the same appointments but you are out on your own. You can’t always access the same things as someone without the condition. You are ruled out of things on medical grounds. You still face (to use the example above) becoming unwell and having to leave or not attend things you’ve paid for like the Theme Park. Depending on your skills your career can be limited/curtailed and work related stress and long days are terrible for your control compared to shorter easier roles especially from home so your earning potential would be limited. But apparently you no longer are disabled when you hit adulthood.

Good luck with the claim @Cocteautriplet!! Hopefully something can make it easier for the family, because although sometimes it’s not the worst thing to have, some other times it bloody sucks!

@JarvisIslandas someone who’s had type one from early childhood and is now mid 40s, I can’t agree with your post. I was always told that diabetes shouldn’t stop me achieving whatever I wanted in life and that is the approach I’ve taken. Yes there have been times when my sleep has been interrupted, but I’ve still managed to get myself to work and get through the day, just as anyone who has their sleep interrupted for any other reason has to. I’ve never had to leave a theme park or any other activity early. I’ve played a wide variety of sports at local level. Yes I’ve been hypo in meetings / matches / on days out but I’ve paused, treated it and moved on with the rest of my day. I’ve never been held back in my career choices because of my diabetes and I’ve been able to enjoy a normal life & a fulfilling career. My earning potential has not been in any way curtailed. If I’d been told, aged 6, that that wouldn’t be possible, I may well not have tried.

I agree my son was diagnosed two years ago whilst in DKA ,at 16 ,
He's adapted really well.obviously he's had to adapt his life style but it's not really limiting him anyway the only thing I can think is that he wouldn't be able to join the armed forces,but that's never been an ambition off his anyway.

Not everyone is able to coe with a disability in the same way. This is why you don't get dla or pip for the disability itself - it's for how it affects your life.

If you don't need the support, that's great, you don't need to apply.

Other families WILL need the support. In claiming for a child, it often comes down to the effect on the parent's life of caring for that child. My daughter has difficulties (not diabetes but epilepsy among other things) and I gave up work to look after her. The dla and my carer's allowance were an absolute godsend at the time.

Yes but DLA and PIp.have two very different criteria
I can fully understand why children with Diabetes get DLA particularly when they are younger and unable to manage their diabetes themselves
However PIP.is based on being able to care for yourself ,cook ,clean independently,navigate a journey from A to B independently and most people with Diabetes should be able to do that.

Again, it depends. Some people won't because they have other contributing factors. Maybe they have concentration problems, learning difficulties, other medical conditions, which mean they can't manage their own diabetes.

My daughter has epilepsy. Her seizures are controlled atm but only because of the drugs, and she needs help to order and take them because of her learning disability.

Someone else with her epilepsy wouldn't need help.

This is why diagnosis per se isn't helpful when it comes to claiming pip.

Which is why I said MOST people.

And also someone with learning disabilities,would be claiming for far more than Diabetes on its own
I do get it my youngest son has severe autism and learning disabilities and gets DL A at the highest rates
My oldest son has Diabetes but is fully independent in the management of it as are MOST people .

@Arran2024but that isn’t the point @jarvisislandwas making. Jarvis was suggesting all T1s should be able to claim, as children or adults. Of course, if there are other factors at play, related to diabetic complications or unrelated issues, that may affect eligibility. My disagreement was with the suggestion that all T1s can’t live a normal life / need to claim disability benefits.

@AgathaMystery
Thank you for all the helpful information on this thread. Am just looking at applying for DLA for my son age 11 who was diagnosed with Type 1 in June and wondered if anyone can guide please with how to ensure all his care needs are included on the form which seems quite tick boxy. Any guidance would be much appreciated please.

It's about what care your son needs above and beyond that of a child with typical needs
I will be honest though the older a child gets the less likely they are to eligible for DLA with diabetes if they are able manage the condition themselves.

does anyone get the HRC for their child? i was up 6 hours last night doing corrections and couldnt sleep due to the dexcom alarm SCREAMING. 2 nights ago I was up 4 hours with a bad hypo that just wouldnt stay up no matter what sugar & carbs i threw at it. They awarded my son a 7 year award on MRC and I didnt want to fight it at the time, but now Im thinking he does deserve high rate care for nighttime needs.