To think this a fucking disgrace- 3 months wait for disability payments- why?

[HumiditySucks]

Son diagnosed with Type 1 diabetes last week. He needs tech that we have to fund ourselves.

Apparently when you apply for DLA, they don’t pay out for the first 3 months after diagnosis- can anyone explain why?

Its not like it’s going to go away within that timeframe and won’t be needed!

We can just about afford the initial £160 a month for his monitor but plenty of families probably won’t be able to, especially in the current climate with cost of living increases/fuel price increases.

This is tech that NICE guidelines say should be prescribed but they’re only guidelines. He will also need an insulin pump which will take it up to £400 a month.

Bad enough that you get a shocking life changing diagnosis for a child living but you have to shell out for essential equipment from your own pocket too.

You're thinking of something different - OP is complaining that in order to get DLA / PIP, you must be disabled for at least 3 months and not the time scale.

I actually think it's fair enough that you wait a short while before you can get payments - I mean, in those 3 months from when you've started having problems, (not diagnosis) things will change a lot.

You don't though, because you don't need a diagnosis to claim DLA.

Three months if your are lucky. My Father suffered a stroke which severely effected his mobility, memory and speech, he had to give up work and lost his driving licence. PIP eventually paid out 14 months after we submitted the application, 5 months after his death.

To do the care required to claim DLA for a child with diabetes you have to have a diagnosis of diabetes. Because otherwise that care would not be happening. Because you wouldn't know you have to do it. Anyway, I was just going by the guidance on diabetes.org.uk, who have a fair bit of info about it.

You do have to wait 3 months from the start of an illness or health condition.
If DC was perfectly fine yesterday and developed T1 diabetes there is a definitive date to give ...IE the date parent realized something was wrong and medical attention was sought.

You do have to wait until 3 months after the start of whatever difficulties you are claiming for.

DLA page here

Because it's based on need. Yes your son has diagnosis but when you fill forms in you have to detail his daily needs and what support he requires. You need evidence of this

Sorry I got confused with the 'has to have been present for 3 months' and needed a diagnosis. I see now.

You will get whatever your son actually needs free from NHS. DLA is to help with care/mobility costs. You may not receive it at all based on just having T1 diabetes

It doesn't work that way with DLA though the waiting time can be upwards of 12 weeks but once you have been told you are successful they pay you straight away.

I was on your last thread and I can understand how frantic and anxious you must be feeling (DD was 2 when she was diagnosed and was in ICU for 2 days) but you need to chill a little and give yourself to time to process everything. The nurse was wrong to tell you what she did about pumps and I think now all children are entitled to either a flash or CGM on the NHS, so you'll be able to argue your case with that one. However having said that and as someone upthread has said, you need to get your head around the basics of doing things manually in case the new technology ever fails at some point and it will also give you a good understanding of how diabetes affects him.

The 3 months for DLA will also give you a chance to write down exactly what care he needs on a day to day basis when it comes to filling the forms in, because you have to really make your case and describe in detail what you care you provide for your son that a so called 'normal' teenager doesn't need. It'll include things like meal planning and helping him carb count, but also ordering his prescriptions and going to hospital appointments and reminding him to check his blood sugars in the day, helping with hypos and hypers and getting up in the night to check to his blood sugars (there's so much other stuff but it's sort of normalised now for me after doing it for so long). Include absolutely everything that you have to do that you didn't before.

The other thing is, there's a backlog with processing the forms due covid, so sadly it might be be longer than 3 months before you receive the money but the good news is it will be backdated. Also, ask your nurse for the (I think) Diabetes U.K. form which will tell you how and what to put on the form which I found a big help.

Ignore people who say stuff like this as well. You will get DLA for T1 for a child who has it. It just depends what level

Initial diagnosis doesn't give you the full picture of how a condition can affect daily living and care - but three months in, it's more accurate.

Yep, it might be inconvenient but it does make sense. You will get the necessary equipment.

I go back to what I said before though about DLA, you don’t always get it just because you have a diagnosis of Type 1. It depends how it’s managed and if the person is able to manage it themselves.
OP hasn’t been back to say how old her child is, big difference between a 7 year old and a 17 year old. An older teen needs to learn to manage it themselves in time as it’s obviously a life long condition.

DLA stops for children with T1 at 16. If you have complications from diabetes like blindness or kidney failure, you may be able to apply for PIP.

I believe from the OP's previous thread, that he's 12, so he will be eligible. Anyone suggesting that a 12 year old can manage it entirely on their own doesn't know what they're talking about, because it's fucking relentless (and tbh, that goes for all ages).

If you ring the Diabetes UK helpline you can check any information you were given.

I have 2 children who get DLA, (although neither has diabetes), and I volunteer supporting parent carers to complete DLA forms for their children. When the DLA awards for my kids were first granted payments were also made backdated to when I rang and requested their forms, which is standard.

The link provided by a previous poster states: They must have had these difficulties for at least 3 months and expect them to last for at least 6 months.

So difficulties not actual diagnosis, and as also pointed out it's about demonstrating they having greater care and/or mobility needs than a typical child of the same age.

I would request the form and apply now anyway, and if you find the form difficult to complete contact your local parent carer group to see if they can help, or see if there is any support from diabetes charities. All the best with it

You are confused op it's not 3 months from diagnosis it's 3 months from symptoms so you use that date not the diagnosis date.

@ermagerdabear the op child will likely get a short award as he is newly diagnosed. Dla guidance is that by age 12/13 children should be able to manage their own diabetes and awards often end at that date if it's not recent.

And it's a wait time of months because that's how long it takes for the case to be looked at by the people who make the decisions

the 3 month delay in being able to receive DLA is nothing at all to do with having to wait for a claim to be assessed. The 3 month delay is about making sure that whatever it is you're claiming for is likely a semi-permanent/permanent thing rather than claiming for, say, a broken leg.

You will get DLA and you should get it at the middle care rate. There is a guide to making the application here: www.diabetes.org.uk/resources-s3/2017-11/Disability%20Living%20Allowance%20for%20children%20with%20Type%201%20diabetes%20-%20A%20guide%20for%20parents%20and%20carers.pdf

To be clear, you don't need to wait the full 3 months to make the application. You can apply today if you want to but a successful claim will be backdated only to 3 months after diagnosis.

You need neither a libre/dexcom nor a pump in the first instance. Just get used to checking levels and giving injections - you really need to be able to do this because pumps fail and the libre/dexcom also fails.

Take care OP and be kind to yourself. You don't have to get it all sorted today.

An, ok. I've just had my daughters DLA renewed for higher rate care for the next two years til she's 16. I'd better phone and tell them they got it wrong.

I'm sorry your son has been diagnosed with diabetes, it must be a really worrying time for you. To be honest, I didn't know you could get DLA for this - I have it and wouldn't say it has enough of an impact on my life to qualify for DLA/PIP It didn't even cross my mind to apply.

It's referring to when someone's disability first appears - you cannot claim for 3 months so that you have chance to find out how it affects you day to day

@ermagerdabear if you mean me, no way am I implying that a 12 year old could manage it by themselves, of course they couldn’t. No where though did it state the child’s age, you happened to know from a previous thread.
But I do believe an older teen does need to manage it themselves, unless there are other complications, to give them the best chance of an independent life.

i have been told that DS (12) is not eligible for any CGM for 3 months. Then he will be on a waiting list for for funding. They will only find a Libre not a Dexcom as NHS guidelines are just that apparently!

I have ordered a Dexcom G6 as obviously being newly diagnosed I want to be alerted at night of hypos (no way I will be able to sleep until we’ve got it up and running) and at school for PE and just general moving around school (big secondary so lots of walking up and down stairs, running wround in playground etc). This is all new to us and I’m still terrified.

I will not get a Dexcom funded at all apparently so that’s £159 a month plus an Omnipod in a few months which he’s not eligible for at £240 a month. Not eligible for any insulin pump between 12 -18 apparently. It’ll be hard to find that.

Who the fuck wouldn’t want the available tech. This is a life threatening condition!

We are all (whole family as we’ve been doing it) experienced at the finger pricks and insulin jabs now. DS is amazing and has hardly made a murmur but I’m sure he’ll be sick of it soon together with the MH fall out of being diagnosed and having reality set in that it’s forever. Why the hell wouldn’t I want to make his life easier as quickly as possible? It’s enough for a kid to deal with that he has it.

Those saying they didn’t think to claim disability benefit for a life changing, life threatening condition which is classed as a disability, did you get the tech for free?