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

I would highly recommend you or your friend join some of the following groups where she can get lots of advice and help with the specifics of diabetes care in an application:

https://www.facebook.com/groups/18414742527/?ref=share

https://www.facebook.com/groups/266519340146193/?ref=share

It's so unbelievably overwhelming at the start but it will become easier for her.

Diabetes UK has some advice on this www.diabetes.org.uk/living-with-diabetes/life-with-diabetes/benefits#:~:text=If%20you%20have%20diabetes%20and,Disability%20Living%20Allowance%20for%20adults.

Hard to see how she would qualify here. Costs are minimal - you don’t need accessible clothing and you won’t get benefits for jelly babies.
going to clubs might be trickier yes but would money resolve that issue?

Topsy1976 if DLA has a similar criteria to PIP she could qualify if she can demonstrate that her daily living/mobility requires constant supervision beyond that of another 4 year old. If her illness means she is unable to access educational/ social opportunities without the extra cost of another adult present or if she requires nighttime monitoring for her condition or is unable to risk public transport and needs taxis etc.

The extra 'costs' of having a life long condition are in the adjustments needed for the child to have access to the same things other 4 year olds do, not as you dismissively suggested for 'jelly babies'.

Pip and DLA have very different qualifying criteria. I would contact diabetes UK and ask their advice.

Tell me you know nothing about T1DM without telling me you know nothing about T1DM. I could write 2,000 off the bat about this condition & what diagnosis means for this family but there is no point.

There are loads of groups to help with these applications. Most children with T1DM that I work with get the highest award.

OP it goes way beyond jelly babies etc. It’s about the algorithm on the pump having plasticity and the parents needing to preempt that for the first few years. Also things like mobile phone contracts. The child will need one with unlimited date and another phone for any caregiver who isn’t part of the family (teachers/ 1-2-1/ parent at a play date etc). The parents work will be severely disrupted too initially.

You're a great friend for doing this with them. DM me if you want a detailed list of things to add to the form.

I have worked in residential schools which included overseeing medical provision and have looked after three diabetic children in my time, including overnight. Each have had the in-arm sensor and two the pump....these make life so much easier for parents and the children concerned, as opposed to the old system of constant monitoring, injections at every meal and charts.

In addition, I had a child of my own (now adult) who had a hidden disability but we applied for DLA and got the higher rate, along with the motability element.

To my own mind, the two couldn't be more different. DLA requires you to demonstrate how the child doesn't live a normal life and where they have extra needs which impact on their daily life. Do they have problems getting out and about? Accessing school? Washing, dressing, feeding themselves? The usual diabetic can do all these things and is therefore not incapacitated in any way.

If you really wanted to write up the problems, you could mention the sensor (ordering new ones, having to change the sensor), watching the insulin levels on the app (alarms waking parents overnight), blood tests and ketone test stress (if she still does these as a double check), all the extra ordering and collecting insulin/needles/sensors from the chemist and when she gets a pump, all the extra equipment required. The pump needs constant changing and checking and requires some training to change the needles and insulin phials.
There is also the food element - eventually (if not already) the parents will be measuring carbs and adjusting insulin doses at each meal - on the one hand, this system means that there is nothing a diabetic can't eat (even sticky donuts, sugar-laden birthday party food, they just adjust the insulin dose to match) and therefore the DLA could argue the system makes them "normal". On the other hand you can argue that to be normal, most children/adults don't go through all this.
I'm not sure at what stage a 4 year old would be, the medical profession tends to teach parents one thing at a time so as to not overwhelm them and carb counting might not have been introduced yet.

You’ve sort of contradicted yourself. Your post is excellent but how can a 4yo with T1DM live a ‘normal life’ when you take into account the impact on the family - all of which you listed…?

This is a huge change and it’s okay to use money to support that change.

Also, I know it’s super fashionable to say there is nothing someone with T1DM can’t eat but that’s not my experience. I Don’t presume to speak for anyone with T1 but my patients have such individual manifestations of this disease that no two are the same.

I’ve a teen who I can pump full of insulin and they’re stable no matter what. They’ve done sleepovers since they were 6 yrs old. I’ve another who only has to sniff a dextrose tablet to go high. Another hypos in the cold - anything below about 11 degrees. Another will take 3 days to regulate after a pot noodle - no matter what we do! Periods, growth hormone, teething, emotional upset. Everything has a knock on effect. Everything.

It can be really hard for both parents to maintain their working lives. Often someone sacrifices their career for many years.

All T1 kids seem to get it. Then once you’re an adult you get nothing.

The criteria for DLA are not based on what costs you might have.

Sorry Topsy - I didn’t mean to be dismissive …I’m just trying to find out as much as I can do I can get the support my friend and her child deserve. I realise that there are greater costs at play than the juices and gummies my friend uses to help with low sugar but my friend mentioned them so I will include them alongside the more significant factors such as the fact she can’t work full time right now.

Thank you all so much for your help. really appreciate it.

Lots of young children qualify as they won't be managing the condition by themselves
Aa theu get older and more independent then theu are less likely to be rewarded

Well this thread is offensive. Especially @Topsy1976and her jelly babies. God give me strength. Thank goodness for sensible pp's. Not all diabetics are the same, some are easier than others. Mine still is brittle. Having been a diabetic since aged 1, ask my mum. I needed a lot of extra care. What does it 'cost'? FFS. On the form highlight the extra care at night because that gives many points. Getting up as the parent checking blood sugars, pumps, even if pump does alarm, the parent still needs to give / administer the lucozade (or famous jelly babies)🙄 . The constant thinking about the child, are they ok, planning extra food less insulin, because we are walking to school , or she had a big exam / test later , so best to run her slightly higher. The extra mental care needed is 24/7, 365. Try it! You'd break! It's relentless and intrusive. Hope that helps op. It's only when you have a normal child, do you notice the extra care needed. Write about everything. Appeal if needed. You should get higher DLA easily.

As a parent with a child of Type 1. Our Lives have drastically changed. We are on a set time schedule for meals. We have to check blood glucose and ketones regularly. We have to carry out emergency hypo -kits around with us everywhere we go - Not jelly babies but an emergency injection incase of fit/seizure caused by hypo. We have to deliver insulin injections 5 times a day. We have a whole cupboard full of diabetes equipment, needles, insulin, pens, lancets, glucose monitors, ketone monitors, hypo treatment.
We need to carb count every single meal, change insulin pumps canulas and glucose sensors.

We need to attend appointments every 3 months with the consultant for regular blood tests, alongside dietician, ophthalmology & CAMHS. We need to take time out of work for this.

The Diabetes team advised us that we parents are entitled to claim DLA. DLA isn't just for mobility, it is about the additional care needs the child now has.

My goodness - no one is saying having a type 1 child isn’t hard. What I’m saying is it (in most cases) shouldn’t entitle you to benefits . None of the things you’ve mentioned require benefits. Carryinb hypo kits with you doesn’t require extra money. Checking glucose doesn’t require extra money. Having cupboard of equipment doesn’t require money. Even a quarterly trip to the doctors etc doesn’t require money.
its hard - I get that - but how does extra money make the difference here.
im type 1 so I understand that strain but I don’t believe it requires benefits unless a child child can’t attend school or nursery.

Just as well it’s nothing to do with you then, isn’t it?

A child (especially at nursery or primary age) cannot adequately manage their own diabetes independently. They need help - with applying new pump set, replacing sensors, overnight care, treating highs and lows, planning ahead, mamaging PE or illness or a chamge to schedule. Qould you like thw class teacher to be cpnstant diabetes care duties as well as teaching? In a school setting, the reality is that it is notoriously difficult to get the care needed (often 121) and huge numbers of parents have no choice but to reduce working hours to support their child's schooling. This is not "buy a few jelly babies."

Then, everything costs. A phone for your 5yo to enable their pump to work, a screen cover, protector, a pouch so they wear it all the time so their pump functions correctly - all of that twice for spares - huge amount of hypo treatment.

It is nowhere near as simple as you claim.
T1 for 40 years, mum to a 7yo t1 child.

The children we have in school do not have a separate phone for school - they bring in the same one from home.
We receive some funding via their HCPs which we use to pay towards a TA to support their medical needs plus some 1:1 support if they’ve been absent due to their illness.

DLA isn't awarded only for extra costs. It's awarded if your child requires more care and time than any other child their age.
When my child was tube feeding the hospital advised me to apply because my child needed more care than a regular baby their age. I didn't incur many extra costs due to the tube feeding.

Dla is based on whether they need more care than a typical child of their age. Not all children with type 1 diabetes will qualify, my friends cannot claim for their DD who has a pump because she is stable and their additional care, whilst I don’t want to underplay it, is fairly minimal at age 8. Another young person I know does qualify but they have a second health condition and mild learning disability in addition which means that at 12 they are very dependent on their parents, far more than “normal” 12 year olds and need supervision at a higher level

It’s really kind of you to help with the forms, they are very time consuming and lengthy. Remember one of the parents may be able to claim caters allowance too depending on their circumstances. That’s pretty easy to claim for in comparison.
Most type 1 children would qualify for DLA until age 16. I claim both DLA for my child and carers allowance for me totalling about £600 per month. I don’t spend all of this on their care, not even a tiny fraction, but if we are eligible then I’m going to claim it. I’ve saved it all for him over the years and it’ll help him out when he needs something expensive as an adult, possibly a deposit on a house. But I’d rather he didn’t have the T1D by a million percent.

I would love some information about what to include, I’ve been trying to fill in the form for a while now but I’m really struggling to think of all the ways we struggle with this horrible condition. Thank you.

You're absolutely clueless. So the time off for work for all the appts. (More than quarterly with how many people you see though love). Who pays for the time off work and loss of earnings?
Who pays me when I have I have to take time off as my child is too unwell with ketones? Who pays me when I can't go to work as I've been up all night dealing with highs and lows?

You're absolutely entitled to it. A type 1 child needs extra care needs than a child with a healthy pancreas. They cannot be left alone. It is a life threatening condition!