DLA WAIT TIMES THREAD 50

[HangryLimeBeaker]

Making a new thread as other one is getting full, come join the wait and drop your scan date 💜

Congratulations

same scan date . But still waiting 😖

I called yesterday and they said it would still be another couple of weeks so don’t lose hope! Wasn’t expecting a decision today that’s for sure!

While I'm happy seeing all the awards, it makes the wait bloody hard too!

@HangryLimeBeaker could I please ask how you secured an appointment with them and on what grounds? I just really need to push to evident his night-time needs as I get the impression that they will think why didn't I say anything before and am I just "trying it on"

Hi lovely, it'll be a long message! Sorry

My girl was supposed by a community nurse in order for her referrals to the original paediatrician for an assessment which they then determined she was suspected asd and put on to the pathway. In between the wait of seeing the paediatrician we did a tier 1 sleep, which is a strict bedtime routine set by a healthcare professional (her community nurse) this didn't work and we then moved on to PECS cards as she is non verbal. Still didn't make a difference and she was non-responsive to PECS so the community nurse then did the referral to sleep clinic. My girl is currently seen under CDC for asd and they also do the sleep clinic. The referral was there but they couldn't take her on until CDC accepted her under her care (asd pathway) obviously since being put on that she is now under tier 2 at sleep clinic for possible melatonin in September. I hope this all makes sense! The community nurse has been the one supplying me with evidence and referrals she's honestly been absolutely amazing throughout the whole process. I've just now sent off 3 details hand written pages about her sleep and a paediatrician report. I spoke to DLA today and they said any additional information you send can change an award alongs as it's sent before 8 weeks of the award being made - (incase you guys didn't know really helpful info!) the paed report also covers everything and night time needs. If you have any questions just ask, I know it's an extremely daunting process x

Supported by the community nurse*

And AFTER the award being made. i.e 8 weeks, sorry! i wish i knew how to edit a comment 😂

@HangryLimeBeaker Thank you so much for your advice, I'll contact the GP as DS has suspected ASD and ADHD but doesn't have a community nurse or medical intervention at this time. I will contact his GP to see if I can get the ball rolling on Monday. Also your advice about info sent after an award up to 8 weeks is gold. Thanks again x

Of course if you need help just mention me! I remember knowing nothing and having no support it's awful - I know all areas work differently but GP is good idea! Also try get video evidence that's what I did with my girl. Hope you get the support you need! 🤞🏼 xx

I did sleep diary got award HRC, it all depends on DM I think when it comes to this sort of thing I had a lot of evidence mentioning sleep to from professionals he's now on melatonin prescription but already won HRC before he got the medicine other you can send that in too

@Mommy2boys30 All our evidence mentions poor sleep but no idea about award. I have barely covered it in sleep so I mentioned it in additional 3 pages with paed report but again haven't been awarded yet! Congratulations btw 💜

Fingers crossed for you then and find out soon

For time frames for those waiting…

DC awarded MRC and LRM.
5/3/24 was the date it was back dated to.

Mid august when I called to be told the above. Backdate pay in mid August.

Applied for Carers Allowance on 28th August and the got a phone call the next day saying it was approved! Very happy as so many things are a struggle for children with SEN

Good luck all xxx

Hello 👋🏻
Could anyone please help me with an information? I just received a letter from dwp saythey have received the claim on the 23.08. Is this our scan date?
Thank you in advance ☺️

Yes it is x

Got a back payment yesterday and today got a letter stating my responsibilities as the person managing the DLA. Didn’t say anything about amounts etc.. Will I get an award letting stating how much and when it’s paid?

Yes, you will.

I didn't get the responsibilities letter for DS, I don't think. 🤔

@OnlyHope33 I'd seriously consider if it's worth appealing have you got proper evidence of night needs as they can look at whole award and lower/remove it.

By what you've said once asleep your child sleeps and doesn't wake so there's no night time needs there, just because you sleep in.the bed it could be a settling thing many kids want/need a parent to settle. Night needs is what cares needed once the house closed down (usually 11pm they say) so if child's asleep theyre not needing care.

Not trying to discourage you from appealing, just warning you could.lose award and what you've said.

I had to send in melatonin prescription, letter from camhs regarding sleep (they prescribe melatonin and a 3 week sleep diary I had that's being written for sleep clinic, school and my mum who filled out the person who knows the child mentioned night issues too.

thank you for replying. It says things like “the law states that customers under the age of 16 must have a parent/guardian appointed to act for them” “as you are an appointed person we need to remind you that you are in a position of trust”. “You must not take any fee or any payments for acting as an appointed person” “must report any changes in your own circumstance which may affect your ability to act as an appointed person”.

which all makes sense, just thought was a bit strange considering I’ve not had the letter confirming amounts or anything.

@CyanFawn This has been night in night out for the past 5 years. If I attempt at getting out of bed he follows not long after I've left. If he stays at his grandma's my mum has to go to bed with him. Even in the mornings once im up, his up. The longer you are up the longer DS is up.
The point I would argue is a child of the same age with no issues would go to bed and the parent would have the evening to themselves to socialise, clean, have some downtime, etc etc. However this is simply not the case for me. Every waking hour I have, is spent with DS. If I were to force him to go to bed without me it ends in complete meltdown.
I plan to record bedtimes over the next couple of weeks including getting up when i get out of bed, show the GP, get the GP to evident it, send that to DLA and hopefully in the meantime will refer us for help with DS sleeping without me. It is up to DLA whether or not they decide to change the award and if its sent within 8 weeks there's no need to apply for mandatory reconsideration.

This sounds exactly the same as our house!!
How old is your son, mine is 11 and still have this issue EVERY day xx

@Anxiouslywaitingmum My DS is 5 to be honest I thought it was just a phase as DS and I were separated for 6 months due to me suffering a brain injury and in hospital when he was roughly 7-8 months old. As time has gone on it's just never got any better and only started to suspect DS had issues from the age of 2.5 years, I do think this is not going away any time soon. It's only now I'm thinking how it impacts me and my own personal time. When I initially filled in the DLA for I ticked no bedtime issues as it is technically correct but at the same time it isn't correct because I accommodate for DS so there are no issues.

Yeah and on the flip side my 2 year old does exactly the same where he wants to get in bed with me and his dad, he'll wake up and get in the bed and has to be settled with one of us in our bed.

They are right in the fact there's no night time needs you don't get up and have to provide care, just because you have to lie with them so do many others and that's how.theyll most likely see it. As you said once they're asleep theyre asleep

Like I said it's up to you if you want to risk award and stuff but without being funny it does seem like you're trying it on, your child sleeps fine and you sleep too, middle rate care does cover some night time needs aswell. Also so you know sleep clinic will.take longer than 8 weeks sounds like separation anxiety if anything because of you being in hospital.

@CyanFawn Thanks for your input on this situation 👍 maybe you should apply for a job within the DLA Department, I'm sure you would be most successful x

I sent the forms off at the beginning of August. Not received a letter from them but when they called up they said they got the forms on 14th August. Is it an issue that I don't have the letter?

17/04 - 20weeks ! Nothing and called on Thursday & the man told me there will be no timescales and it’s not with dm 🫤🤷🏽‍♀️