DLA WAIT TIMES THREAD 51

[HangryLimeBeaker]

Last thread was getting full up. Drop your scan dates here!

@paperdove074 do you mind me asking how old your daughter is and what evidence you sent, I totally feel for you my daughters school is completely useless too I had to push for them to refer her onto the ND pathways 😔keep fighting for your little one I feel a decline coming too scan date 15/5.

Parking scan date 21/06 so I know I still got a way too go😐

Same as me! When I called today to add more info, she said it’s 20-22 weeks then said I had another 5 week wait. Either they make it up as they go along or her maths is terrible!

Aww thank you. It’s such a tricky system isn’t it. My 11 year old claims and my 4 year old is almost identical to her, but you never know.

Oh no they aren't responding to me after I confirmed DLA award date lol x

Scan date 2/5 and a decline letter for us today unfortunately.
12yr old Dd with Autism diagnosis, not huge care needs if I’m completely honest but certainly more so than a NT child of the same age, also attends a smaller out of area mainstream school due to not being able to cope in large local catchment high school, we’re not planning on appealing at the moment but will certainly looking into reapplying/appealing in
the future if things change.

She will be 10 in November, actually the previous senco and her old teacher assisted with autism evidence (she's firmly on the CAMHS ADHD list should be seen probably 2025 going on my wait with an elder sibling) they have all of this on file despite the new staff, they even in the last week had teachers sitting with her to try get in, social stories and use for disabled toilet and a wobble board provided, ELSA has worked with ither children to try and get her to maintain friendships because she cant keep any because of the way she sees the world, she has frequent bouts of refusing to work and theyre constantly working to find ways to get her to conplete tasks with constant fidgeting and obsessions and extra boxes to put her hoard of disorganised little bits if paper she obsesses over, but aparently "the parent has never reported any issues and she's a quiet, well put together girl with little friends" was all that had to say because they worked there 2 weeks and know her well enough to answer these questions according to their own conscience.

I do have a parent liason officer I've been working with for years who will write a cover letter for MR, my best advise is to find someone to vouch! Did you mention the masking in school in the forms? I don't think I did, I mean they still provide support they wouldn't need to for a NT child of her age but I think I should have.

Hi so while we are waiting for tribunal and for the Paeds to sort out the sleep clinic referral after our doctors sent urgent request and twice left message to chase up for us he has decided to try this for my boy for sleep as he says they can’t give melatonin that has to be through Paeds or sleep clinics but this has a mix of useable reasons and sleep aid is one … so my question to you lovely parents is has any of you tried this on a prescription for little ones before ? Does it work ? And do you think it’s worth adding on my online tribunal evidence? I know they send anything I add to Dla but I’m not sure if this stuff will count in their eyes as medication as it’s not melatonin.. they want him to try 10mg for two weeks and see how we go and make sure he don’t have reactions , he is 2.7 years

Sorry to hear that you were declined... U can try putting in MR ,you never know,and also,it won't cost anything. I know it is stressful process though but it seems we just have to fight for the kids..x

@paperdove074 I can not believe they refused you, it’s so frustrating it seems the teachers are in la la land and do not like to help at all quick to point the finger at parenting skills! But when it come to helping children that need it they just get brushed under the carpet, how are you supposed to send loads of evidence to support your claim when there’s years worth of waiting lists to get them on to the pathways! Soo soo stressful 😣

Re: sleep meds, my 12 year old is diagnosed ASD, SPD, ADHD (different child to my recent claim posts) he has melatonin, everyone has their own opinions on meds, if you choose to go ahead and they work and settle all night then the award you'd be looking for would be medium not high rate, which I'm sure isn't relevant to you guys as that's a really improved situation for your whole house, just means letting them know if it does work to adjust the award you are looking at 😊

I couldn't agree more, even when they are doing things just blankly lying is completely unacceptable too! When was your scan date lovely? It's absolute madness it's so difficult to get help for our babies, I'll look out for your outcome in the another 19 week wait for MR 😅 xx

messaged UC about carer and disability elements. They messaged the child not being verified yet and another department in DWP deals with this and that there is no timescale for this.
mum not sure what this means about verification, maybe they need to contact DLA and verify the information I have provided is correct? I didn’t get too much info even after calling the call handler didn’t know much about it either

ATM we have 0 award but I sent plenty of evidence about his care needs and support letters plus diary due to his non verbal ASD , global delay low communication and comprehension and PICA blabla bla … but the only two reasons they gave for not awarding is basically they say his care needs are same as all children his age because they all have high needs night and day and because no medical treatment for sleep …. So I wasn’t sure if this stuff we was given counts or if they only count melatonin which we can’t get yet as waiting for response to the urgent request from doctors to the Paeds for sleep clinic .

We waited a year to see peads and seen him 4 weeks ago now and the peadiatrician prescribed my son who turned 3 in August melatonin and it is helping my son not completely every night, there is a few nights we still up in middle of night or go to sleep 2am but instead of 7 nights of no sleep, it's about 3/4 nights so if you can get it prescribed by your peadiatrician then you should, I didn't have to go to sleep clinic or anything like that as I have hundreds of videos on my phone and just quickly shown them some random ones to prove it, if you can get videos you can take them to tribunal

My 3 year old takes 6mg of melatonin and 15mg of promethazine. I would love to tell you a success story, however it does nothing for him.
He sleeps on average 1hr 50 per night.
Awaiting the mattress being made for his safe space bed so at least I can sleep knowing I don't have to physically stop him from headbanging the floors radiators or child gates.
I shall keep my fingers crossed it works for you.

If your prescribed melatonin then you get high rate care. My son is prescribed it and on HRC due to the needs through the night

Is he 3ish? I went to tribunal when son was 3 with evidence they actually had thr audacity to tell me he could turn out to be a perfectly neurotypical person which even at that age he certainly was not! I tried again slightly later and got awarded 🤦‍♀️

If they're prescribed melatonin then sleep impeccably then there's no night time care needs at all and no HRC, if it's hit and miss/doesn't work then the option is there, to qualify for HRC you have to have frequent night and sustained night care needs, if they have melatonin then sleep all night there's no night element 😅

My son is prescribed it at 1mg due to his age, I sent in a lot of night time care needs proof in from professionals as well his prescription and got awarded HRC, it is hit and miss with my son even on the medication, as he still don't go to sleep till midnight which is an hour into night time, then wakes up from half 4 in the morning which is still in the night time criteria. It's not a sleep drug, before you go attaching me with your comments.

He was 2 and half when I applied, got awarded at end of May HRC and he turned 3 in Aug, I sent in a lot of evidence from professionals though,and assessment from EYSN, 2 lots of do and reviews from the EYSN, 2 lots of detailed reports from SALT, ASD pathway acceptance, Ophthalmologists report from EYSN, referral to hospital to see Ophthalmologists. Sleep diary, Dr's reports as they details of sleep problems, SEN health visitor referral, all reports were detailed in everything I was saying, he has a mind of a 9 month old, GDD, walks around with his eyes closed, no awareness of danger, sensory issues, non verbal.
Sorry to hear you had to go all the way to get your child's voice heard

I'm not attacking anyone, as you say there is a high night time care need and that's why our littles get HRC 😊

Hi all. I haven't joined the threads previously, but just wanted to update in case it's helpful for others to gauge timings.
Scan date was 15/5 and I've not had a letter yet but had payment into my account today. This was a first application for this child. I think that makes it 18 weeks.

That’s great news on your payment 🥰. I think although they are saying 20-22 weeks, 18 weeks is the average. It was with my previous claim in March. The lady on the phone the other day said I had about 5 weeks left when I said I was on 13 weeks. But also said it’s 20-22 weeks 🙄

Sd 13/5

Awarded 13/8 17 weeks 5 days !

My baby got what she deserved HRC I've been so negative and anxious waiting glad it's all over