New DLA wait times 2022

[Momof2soonmomto3]

Iv made this new one as the thread I was following along with others has now been closed mine was scanned on the 18th Feb and still awaiting decision, I'm currently been waiting 40 mins on phone to DLA trying to get a update

The list was a mile long! I have to be honest I burst into tears and said are you sure my son's claim has been looked at? I felt like every reason for decline possible was listed over the phone.

I'm still crying now. It doesn't help me son isn't sleeping well at all, therefore I'm not sleeping at all! He is literally throwing himself about in his sleep, last night he headbutted me 3 times. I feel so ill and drained how things have escalated since making my application in Feb.

Being told he apparently doesnt need care? I just dont understand. I have to constantly supervise him. He harms himself. Wishes himself dead. He cant dress himself, or undertake personal hygiene himself. His sensory is ruining his life. His ocd is out of control. CAMHS, OT and other therapy referalls made. These are just a few of the many things going on. My son sounds so similar to others ive read on here I just dont understand.

To be told he doesn't need any care or assistance I broke down. It's the complete opposite. I am exhausted from it all.

@Needanewadventure2021 what evidence did you send along with your application? Will you do an mr. It's so difficult isn't it when you know your child better than anyone yet strangers who don't even know what they look like can make that decision.

I sent off medical diagnoses which state sensory is adding to them, urgent CAMHS referrals, and referrals made by school and his medical records (they were huge) The latest CAMHS referral was so thorough. I remember sending it so grateful of the content. And then school got on board and starting putting support in place and making the referrals. I'm still awaiting appointments and I know it will be a while but it felt so good to get things moving after years of being fobbed off.

I have no idea how to do a MR. I'm exhausted. I actually feel insulted being told he doesn't need any care. I literally don't stop helping him or stopping him from hurting himself.

I think you have to call and ask for a statement of reasons and inform them you would like a mandatory reconsideration, I don't think the wait is too long for it but I do not have any experience in it as of yet anyway, I feel like my other child's claim will be declined because I had so little evidence for him. As stressful as it all is I really do believe you're entitled and should ask for mr. Hopefully someone on here can help you out with that.

I really hope someone can offer some advice on the MR as I have to ask them to reconsider. I really couldn't believe what I was hearing as I couldn't understand the feedback based on knowing what was contained within my DS claim and the information I sent and the updates on his referrals. There is absolutely no way they could decide he didn't need care when I clearly detailed every thing I do for him, his anxiety, ocd, sensory, learning difficulties etc. Im kind of shocked about mobility too because he has no road sense or stranger danger, he runs off and has to be restrained and held back from stepping out into danger. He has no sense when outdoors at all. I'd like to say him not wanting to leave the house over the last few weeks has been a relief. But its been awful as well. His fear of going outdoors is getting me down so then he trys to hurt himself around the house. But based on the fact they said he isn't missing any limbs or walking with pain he was declined

I find it upsetting that we know our children and what we do for them and then someone makes a decision based on some words on a abit of paper.

@Ltb17 sorry to jump in, hope you don't mind me asking but did you receive HRM under SMI or VUW? What sort of evidence did you send to back it up? (I'm just interested as I know it's rare they give HRM and I believe my little girl should be entitled to it under VUW x

I meant to add based on their reasons for mobility I can understand why he wouldn't have been awarded mobility anyway. But care, I'm shocked

@Needanewadventure2021 I completely agree with you, it astounds me you can send in as much as you did and a stranger decides it's not enough. And mobility doesn't just have to be because of no pain or loss of limbs either. I would defo mr because it sounds like you've completely lost out.

@Twinmummyanda6yearold he was awarded under vuw not smi. They did say they couldn't award under smi because of lack of evidence of restraint and also because he doesn't have his diagnosis yet (didn't think they needed one)

@Ltb17 thank you, I'm still waiting to hear back from my claim, scanned on 12th April so only 4 weeks so will prob be a while yet, I used the contact guide to fill out the Mobility bit and stated the reasons why I believe she is VUW so we shall see 🤞🏼 congrats though 🥳

@Needanewadventure2021 if you haven’t already look at the Cerebra guide.

@Twinmummyanda6yearold the first time we got HRM for DS1 we sent letters aimed specifically at HRM from a specialist nurse and a consultant, in addition to all the other evidence we sent about DS1’s more general needs. For the 2 renewals since we sent letters from the specialist nurse, consultant, psychiatrist, CAMHS specialist nurse and social care. Have you looked at this Contact information sheet?

@AReallyUsefulEngine oh thank you that's really useful! And I've literally just written I used the contact guide to fill the form out so hopefully I will have written something along the right lines thank you 😊 If she isn't successful in the HRM I will consider doing an MR as I believe she doesn't 'consciously' choose to 'refuse to walk' if you get me, I believe it is a direct symptom of her conditions..

@Ltb17 you don’t need a diagnosis to claim DLA but for HRM under the SMI rules you need to prove DC has “an incomplete physical development of the brain or a state of arrested development which results in severe impairment of intelligence and social functioning” which would be very hard to do without a diagnosis of something, although not necessary autism.

Thank you. I will do for sure.

Well I thought that too about mobility but their reasons were all to do with no loss of limbs or pain.

I'm going to have to wait for my letter to have something to work from. There were so many reasons. It felt like every reason for decline was read out to me so it isn't even like I can get anything together because I really don't understand what's bloody happened.

The MR is basically it going to a fresh pair of eyes I was told. I need to request it within 30 days of their decision either in writing or over the phone and it goes to a new handler.

The lady was lovely and said she could hear I was really upset but to get back in touch when I receive the decline letter to go through the MR with them

@Twinmummyanda6yearold x post. Contact’s sheet really helps to make sure you have ticked all the right boxes and used the right words.

@Twinmummyanda6yearold sorry I forgot to add, I had sent school letters, paed report confirming is referral and then a further letter from paediatrician stating why he qualifies for hrm under both vuw and hrm criteria. I updated them last week to say he had now been accepted by occupational therapists too.

@AReallyUsefulEngine yeah I think that's why it wasn't smi as without his diagnosis I guess there was no proof.

@Needanewadventure2021 from what I've heard other people say it's apparently best to do mr in writing. I would just re send everything you did. Do you have friends and family that could write supporting letters for you too?

@Ltb17 that's great thank you, I've included paed report, speech and language report, letter confirming DD has been accepted for an ASD assessment, sleep clinic referral letter... that's pretty much all I've got atm but I've also included a lot of my own handwritten notes just basically elaborating on each question about DD's care needs.. sorry I know this may seem a bit of a daft question but could you tell me what the OT is for? Only as DD has been referred to physiotherapist to check her physical development because she is very clumsy/falls at least twice+ a day and not sure if she has dyspraxia maybe 🤔 or something along those lines.. it's sort of like she knows what she wants to do, but then her body is one step behind in actually doing it.. does that makes sense? It's like her spacial awareness is 'off'.. sorry just this is all new to me and so confused about getting DD the right help etc.

Would those types of statements help?

I literally only sent DS' autism diagnosis report as evidence, a letter from his grandparents, plus extra pages with very long answers to the questions. We've had no input, other than for his diagnosis, so couldn't send anything else. Hopefully that's enough.

@Needanewadventure2021 it is unlikely statements from family and friends make a huge difference.

@Twinmummyanda6yearold OT is occupational therapy. They look at everyday life skills - from a physical, developmental and MH pov. If you suspect DCD it may be worth looking in to it. You can self refer in some areas. OT also covers sensory differences - although this isn’t commissioned on the NHS in all areas anymore.

@AReallyUsefulEngine that's great thank you I will definitely look into that, I know something isn't right and when she trips and falls it can lead to a 'refusal to walk' episode as she gets so frustrated and upset about it all

@Needanewadventure2021 I have read either earlier in this thread or the DLA thread posted earlier this year. That some ones application got declined and when they received the reason why.. they wrote back and asked if they had even read the form and highlighted why where wrong by cross referencing the original application to the reason dla declined. They were then awarded.

Might be worth looking for the original comments to get some tips. Because I'm not great at explaining, as you can see.
Also there are charities out there that support dla applications and appeals if you need a hand to get through it.
Sorry you've had such a knock back today, but don't give up. You've got this!

@leap1216 that's really interesting to know because that's exactly how it feels. Like they haven't even looked at his claim properly.
Last week it hadn't even been allocated and it was escalated by a supervisor because they were working claims received later than my son's. Only a week later its a decline for reasons I fully disagree with.

How would I find those comments?

@Ltb17 Congratulations! Mine was stamped Jan 12th so I’m on 17th week of COC, my case is very similar to yours, hoping for my Son to be awarded HRM as been on LRM for over a year now and sent more evidence of his difficulties with his COC, also read the contact.org website which gave loads of tips. I’m so happy for you and your family! I’ve become to know that we are our children’s voices and we will be heard, we just have to a speak loud enough and never give up until we get what our children deserve.