DLA WAIT TIME THREAD 60

[zoeybrooks45]

Hello everybody, I have made a new thread please put in your scan date, hopefully we hear some good news this month. please be kind and feel free to share scan date, entitlement award and what child is diagnosed with as others in similar position can feel uplifted in these stressful times. 💐
New claims (NC) are taking ‘around’ 20 weeks.
Mandatory Reconsideration (MR) & Change Of Circumstances (COC) between 20-25 weeks approx.
Renewals between 15-20 weeks approx
tribunals: when you disagree with MR and are considered by a court
scan date (SD) date form was scanned on the system and counting weeks for decision
original claim date: date you called up for the forms and you will be backdated
UC : universal credit
DWP: department of work and pensions
DM: decision maker; the person who assesses each claim and awards/decline a case
number for an update 121-4600 0800 121-4600
currently we are in July/August for decisions! xx

Won’t be long for the letter. I’ve never found it to take 7-10 days they say. You’ve worked hard for this and deserve it.

What’s your scan date? Im
so happy for other people but when dates are coming are going gets harder just have to hang on in there 🤞🤞 we hear this week z

My son has a rare bone disease and I found out his claim was rejected yesterday, the bit that has annoyed u annoyed me with my sons because they said something very similar about him, he is in agony everyday, sometimes has days where he can’t weight bare at all, wakes up every single night in pain but really bad if he’s been quite active! He’s having surgery after Xmas to put metal in his legs as his bones are so weak but the way the dm worded it made it sound like my son is just lazy, I was furious! Really wish they could see they struggles our kids have to deal with 😢

Hoping the plan co and her line manager will issue them one. I’ve been blunt and to the point in my email. No way I’m doing another year like this one

Oh no that’s not ok. They’ve clearly no clue on your son’s condition. Does the surgeon doing his surgery think he’s lazy? Clearly not. Fight for your son, I know it’s deflating and everything else but you know what your son should be getting

Hi I'm new to this been reading for weeks and find this so help full my scan date is 6/8 NC and have rang up so many times think they might block me in the end but yesterday it finally made it to a decision maker how long is it with them normally till I hear back

It depends where you are in the decision makers pile. You could be number 1 or number 100. However I’ve seen a lot of your scan date being done so hopefully you’ll hear soon🤞🏽

I don’t blame you one bit. It’s not fair on your child at all. It’s so hard when you’re trying so hard and they aren’t helping!

I’m so sorry. It must be so upsetting and frustrating for you. I feel like I got lucky that they didn’t decline us! My son has completely flat feet and hyper mobility so his ankles have basically rolled in on him and he has short leg muscles. So yes, technically he can walk, but not with out terrible pain and due to the orthotics he needs to wear, it sends him into complete sensory overdrive whenever we have to go anywhere. As I said before, it’s not even about the financial support it’s knowing that we are able to say actually they are disabled and that needs to be recognised. We’ve had to fight for every bit of support our son has needed and it just should be like that, and reading everyone else’s stories on here just shows how wrong the system is for children who need help and support.

It’s so upsetting, my son has something called olliers disease, his body is riddled with tumours and is already showing discrepancies in leg lengths! My son has the disease quite bad, it normally just affects one side of the body but he has it really bad on both sides! He’s literally just turned 3, only got his diagnoses in April but already has a box file full of hospital notes, already had his first operation, at least two more in the very near future. He needs this but I’m exhausted and overwhelmed, it’s been so hard to deal with without having to fight for the help he is going to need for the rest of his life 😭

He is under several surgeons and tumour specialists and a tonne of other medical professionals who have all been amazing, I understand why the process of claiming is so strict but it’s so draining when you’re already trying to come to terms with a diagnosis and dealing with the struggles it brings

I rang again today I’m only 16 weeks today but I been cut of my phone due to it being Xmas and not paying my bill. I have 4 kids so I spent it on Xmas instead. I explained that I can’t recieve calls on the number I provided and was a bit worried in case they might need to ring can I leave an alternative number(my partners) answer it’s only been 16 weeks there isn’t a chance you will get called so if you putting your phone back on the new year then there is no point in putting an another number as you won’t be rung until 20 weeks. Anything else I can help you with. So arrogant and rude and they expect us to be polite

It makes no sense for them to have declined. A child wouldn’t be under a single surgeon unless there was an issue. At least the medical team for your son have been supportive, did any of them provide you with a letter? If not, it’s how I would proceed.

No I didn’t ask any of them but I have a file full of letters and pictures of his X-rays and mri scans etc so they will be getting everything when I put in for the MR

Who are you with for your contract if you don’t mind me asking? Some companies you can call them and make a promise to pay and give them a date that you’ll be able to pay by. They will then reinstate full service and wait for the payment by the agreed date. Agree some have been rude and it’s uncalled for. I think they are as fed up as us as all they’ve got it screens to read from but we can all still be kind

Really that should have been enough I would have thought. Give a number for one of your sons team for them to consult if they need clarification and good luck.

Thank you x

I’m more in a mood with them hun they have cut me off 34.80, completely, I been with them 4 years and my 3rd contract. I have had other contracts with them and everyone has left them because they are so rude and unhelpful. I’m with three. It’s the point that I rung and said I will pay double on 2nd Jan and they were like I’ll put a note on the account but can’t guarantee you won’t be cut off.
I won’t ring them again now sooner I get out of this contract the better. Sorry I’m just stubborn, all my kids phones pay at you go now and one contract with a different provider but as soon as I’m up which is next June I’m gone. X

I would be too. At a time where they can offer support and make adjustments they should. My hubby was with 3, he’s with a different one now as it was cheaper. I would call again and say you want to give a different number, don’t say you’ve been cut off or they will give same response x

@ProudZebra that honestly stinks! How is it they think a child could be under a vast amount of healthcare professionals but receive no additional care than others of the same age!?

make it make sense!!

@ProudZebra Just been reading through the thread and firstly I'm sorry you've been declined your child clearly is entitled to dla but I'm just going to offer some advice as you've said that you have a box of paperwork xrays and MRI scans ect and you will be sending it all in... So just to say, you don't have to prove to dla that your child is disabled, dla isn't a medical assessment, the DM are not medically trained, sometimes we get so caught up on feeling like we have to prove to these people that our children are unwell, disabled or have a disease and we don't, dla is a self assessment of your child's needs and isn't awarded based on the actual disability but on what care the child needs because of it, so sometimes we overwhelm the DM with medical paperwork for the MR you should concentrate solely on what care you give to the child and what care the child needs, try and keep it as simple as possible with bullet points of what you do for the child, how long it takes and why you have to do it.
For example : child can not bath themselves, or undress themselves so I need to undress the child, bath and wash the child, dry and dress the child after, I do this two times a day and it takes me 40 minutes each time.
Child can not brush their own teeth i have to brush the child's teeth for them, this takes me 5 minutes twice a day. Do this for every single thing through the worst case scenario day, then go on to night needs, needs outside the house, then if child is at school what school have in place or don't have in place and evidence to that effect. You can say your child has such and such disability and these are the symptoms of that disability, tumours, pain, mention what you have about the child's legs, mention about the child needing an operation and say contact details for consultant are blah blah when looking at sending evidence concentrate more on any evidence that states symptoms, needs, care, disability, any therapy in place things like that rather than, xrays and MRI scans these don't tell the DM much as they don't know what they are looking at, sometimes claims are declined because all the evidence is leaning towards medical evidence rather than evidence of the child's care and needs and mobility, so if you've wrote the child can't walk because of pain, send any evidence that the child is experiencing pain and how that's managed and if on any meds ( only if you have it if you don't that's okay) I hope that makes sense and helps a little with what to concentrate on for the MR 🤍

What was your outcome of your claim? My LO recently got diagnosed with hypermobility always knows something was wrong. It’s a nightmare trying to prove yourself on these forms xx

It boggles my mind it really does but I need to keep fighting for him and he will get what he deserves eventually

Thank you so much for this, makes things a bit clearer. I will spend the next few days trying to sort out the right things but I’m also going to contact CAB so I don’t get overwhelmed and send a load of things you don’t need! Thank you again

But wouldn’t X-rays and MRIs show them that there is an issue and therefore it’s safe to assume that child who is under a medical team would require more care than another child of the same age? They didn’t even call which is pretty crappy of them