Dla wait time part 2 2022

[Ltb17]

Set new one up as old thread ended @April202 @Nicky80catri @Leaf1216 can't remember any other names

At least if you ring bang on 9am, it's a nice short call.

I doubt I'll call again. She says! 🤣

@NoWordForFluffy I said I wasn't going to call again a matter of days ago - but I have free mornings on a Monday so why not ey?

I like to know where I stand with things, finances included. Always have to plan ahead and know what's coming up so knowing our finances could potentially change next month and not knowing how is writing my brain off. We have so much to sort out for my DS but we have put off doing anything until we know what we can actually spend on his things. I don't want to buy cheap and last 2 weeks if I know we will be able to spend a bit more on quality stuff. Obviously if nothing changes then he's stuck with the cheaper stuff though haha.

@Bizzlemizzle Okai that’s fine thank you

@Bizzlemizzle It's really interesting to read the DLA guidelines, especially around Autism. They appear to categorise into 'mild', 'moderate' and 'severe' - I was under the impression that we did not use categories in this country or the functionality labelling. DS has what would be described as 'mild' - that is, no intellectual or developmental delays. He still has significant difficulties with social interaction, alienation and bullying from his peers, sensory issues, explaining his emotions and becoming frustrated (meltdowns), though. His suspected ADHD makes him very hyperactive and impulsive, he constantly has to be watched or he will hurt himself, run in the road, run away, talk to strangers, do 'silly' dangerous things like leap off walls. If they are going off the guidance in that document, and categorising DS as 'mild', I don't expect he will be awarded...

So I've just phoned and been told they're working on claims up to 23rd March 😳🤦🏻‍♀️ I seriously don't think they know what they're talking about sometimes/just tell you anything.. makes me not want to bother ringing now 🤣 when I know people have been told they're working up to 4th April 🤷🏻‍♀️

@Lozin I agree - my son was diagnosed in February and wasn't put into any category. What some may be severe for one child might not be for another, but may have severe aspects in other areas so it makes sense not to as it is a spectrum it can get very complicated.

They do state in it somewhere that the terminology used is not current but they have included it as some reports from years ago or those using private assessments may still categorise. I think it's also why Asperger's and High-Functioning is used a lot through it just so they have an idea what to look for but I do think these terms are used way too much in that section and could become confusing to the DM when not presented with evidence of those terms. We just have "Autism" nothing else.

I had an old friend who would say oh its only mild, i'd want to rip her face off and say "live with it and say this is mild hun".
My son sounds similar yours, but mine is delayed in areas.

@Bizzlemizzle Really interesting. Especially as in their example of 'mild' they give the example of a child age 9 who bed wets twice weekly. I wouldn't categorise that as 'mild' personally...

Our application just states 'Autism and awaiting assessment from CAHMS for ADHD'.

It's fascinating how the spectrum differs. My son was ahead in all areas (language, walking, potty training, maths, reading) so although no delays, our clinical psychologist who diagnosed DS, stated that being unusually ahead is also indicative of Autism.

I've told myself that our DLA journey has sailed now. I just want the no to do the MR then I can do it then move on. I tried. I failed. I will try again in a couple of years. Can't believe how many children on this thread have been failed

Hi,

We are at 5 weeks awaiting decision on MR. When i called they did tell me around 4 weeks although it doesnt appear to he that quick.

Will update you how i get on & good luck.

@gemma1988 Don't give up. A lot of people on this thread seem to have got DLA awarded at MR. I think it seems harder when they are younger, as before school age I guess they are all quite high need and need lots of help, the differences become more obvious the older they get...

Yes I know what you mean. My son has just turned 4 and he's starting school in September but his nursery have told me one thing then another. I'm so stressed I feel like I shouldn't have applied until he was older.

@gemma1988 you can apply for an EHCNA (or equivalent if not in England) for school yourself you don’t need to nursery to apply. Have a look at IPSEA and SOSSEN.

Thank you I will look into that. They told me he had loads of autistic traits. One teacher told me to get him checked out so i did. Then he's new teacher told me at parents evening about all these things he does. Hospital asked for a letter to back it up and the letter doesn't state half of the things that she said!

@gemma1988 I know they say it is needs based rather than diagnosis based but I do wonder... quite a few on here pre-diagnosis have been declined especially for Autism. I do question whether or not that would have happened had they had a diagnosis in place.

It might have more to do with not having enough evidence compared to when they have a diagnosis and can use the diagnosis assessment and report as evidence of needs.

My eldest got DLA without a diagnosis 3 years ago and they didn't contact anyone. Seems they are a lot more strict now but my son was 7 I think there's a massive difference between ages 7 and 4!

My son has been assessed twice in the hospital and both say they think he is autistic but needs results off speech and language first then decide if they will diagnose or send for a ADOS assessment.

That’s what I mean, after diagnosis you have all the reports and evidence whereas beforehand you don’t. So it’s more about evidence than diagnosis, and if you can evidence those needs beforehand a diagnosis isn’t necessary.

I agree. I thought the speech and language report would have been in the post by now but they are blaming covid like always. Good luck to everyone with dates at the start of April looks like they working on first few days.

My daughter doesn’t have a diagnosis and we applied last year just before she was 3 and we only had one report but the paediatrician wrote it in a way that each section pointed out how her needs where different to children her own age. It probably helped as well that she highlighted in bold please use this report when applying for DLA as she does met criteria and shouldn’t be impacted whilst waiting her autism assessment. My son who’s only 20 months has the same doctor and she done the same report style for him earlier this year and he was awarded too without a confirmed diagnosis. His being for child disability payment as where in Scotland so now have to apply for that rather than DLA.

Hi Guys
I’ve been following for a while now, thanks to everyone for all the updates. My scanned date was 29/03. I phoned today and was awarded on 10/06 for my 3yr old twins who have suspected ASD. We’ve been very lucky that the girls nursery have been amazing since they started in September last year. We have regular meetings with the school Senco and she’s made every referral to help the girls. She’s also the one that mentioned to us about claiming DLA, she even sat with me to help me fill in the forms and got me copy’s of everything she’s done. It’s sad not everyone is getting the same support.
So sorry to everyone that hasn’t been awarded, it’s such a long wait and then to get bad news it must be heartbreaking.
Take care and all the best ❤️

My health visitor told me to apply wish I got her to write me something. I'm hoping I have an answer in the next week. Pleased you had the support of nursery. My eldest had great support off his primary school

I'm so pleased you had the support it makes it much easier.

@gemma1988 you may get awarded without having to do a MR as I was the same started to doubt that we would the nearer we got to decision being made. If it was refused I would definitely contact you health visitor to see if she could write you up a support letter to send to them.

Yes I will thank you. Was your claim recent? How long did it take ?