DLA Wait Times 80

[Kirstygingee]

MR- Mandatory Reconsideration
NC- New Claim
COC- Change of Circumstances
SD- Scan Date
LRC- Low Rate Care
MRC- Middle Rate Care
HRC- High Rate Care
LRM- Lower Rate Mobility
HRM- Higher Rate Mobility

It’s an absolute joke, doesn’t make sense to me why they are having MR and COC wait 31 weeks and NC 4 weeks, even you with twins are waiting longer for a NC doesn’t make much sense, I waited 26 weeks for my little ones NC last year, why can’t they meet in the middle and get things done in the time frame of 15 weeks for everyone so no one is stressed out and worrying for 7/8 months.

I only have the 1 kid so couldn’t imagine twins and I’m sure I’ve seen you mention you have more kids, I’m 1 of 7 and I don’t know how my mum done it, with it not being as known/common years ago almost all my siblings have been diagnosed with something while being adults and I wish my mum had got things looked into instead of getting on with it. I see so many traits in my older brother(hes 28) now that I know the things autistic kids do and I noticed these in my little one at 1, my brother has a really good job, drives, owns his own home so he gives me a little bit of hope that things get better, but it’s all a ticking time bomb at the minute and the never knowing of things regressing which they have over the past 2 years so I understand how hard it is mentally, financially and physically😭 Good luck and 🤞🏽 we get the outcome we we hope for😊

I do feel awful complaining about waiting 13 weeks but it annoys me when you are being lied too as there is nothing i hate more. I am happy for everyone who are getting their claims done, but it feels awful when you feel like you may be declined.

Honestly they do need to meet in the middle and all claims should be done in date order. Then it would also clear up some of the calls they recieve because people will be able to talk to each other on here and be like oh i should be next. It would also make it better if they had an online system so you could check the progress of your application.

7 kids wow how did she do it, i get what you mean though it definitely wasnt looked into or recognised very much years ago so it was easier for kids to slip through the net. My mum had 4 and we have all been diagnosed with ADHD or autism as adults. But i definitely get what you mean, it would have been nice to get the help and support as a child.
I have 5 kids, all of which have autism/adhd and multiple other issues. My twins have regressed so much, one went from speaking to completely stopping, and the other says a couple of words. They are very behind developmentally so i understand the regression all too much. Im the same as you too and noticed all the signs from 1 year old. But i didnt get any help with my oldest until she was 7.

My second daughter who im doing the MR has hip dysplasia, caeliac disease, bladder incontinence, ADHD and ODD. And i got a straight decline for her she is now 8. So this is why im worried regarding my twins and at the moment i get 1-2 hours sleep as im up all night making sure they are safe. As they nut walls, will eat their own poo and each others, smear it against the walls and will attack each other. They have all the signs of autism plus adhd, plus one of the twins has congenital torticolis, is flat footed and hasnt got any muscle tone in her upper body. She is having genetic testing when she goes back to paediatrics in January. Also my twins wont eat anything, except dry spaghetti, toast and bananas. They cant use a folk or spoon and wont even feed themselves finger foods as they have AFRID. So are under a dietician.

I have appointments every week with my kids and sometimes have multiple ones in the same week and even same day. So the stress is definitely all too real. Haha sorry for waffling on.

Good luck to you too and i honestly hope you get your outcome before me because you deserve it!! 😄

Just called them to make sure they had got my sons forms, she said it can take up to 6 months to get a decision.

Is this for a NC or COC?

A NC

NCs at the moment are being doing in around 5 weeks.

I just called about my renewal due 2 weeks today. A decision was made today but he refused to tell me what. I’m calling back option 4 instead. I’m hoping they will tell me either way as the post takes so long

Just to give everyone an update.
NC SD 14/10
Called yesterday and was told a decision had been made but not what...
Called back with options 1-5-1-4 this morning and the lovely lady informed me my son has been awarded MRC and LRM for 2 years!
Yes not a super long award but thats 2 years for getting diagnosis and treatments started, thats 1.5 years to gather evidence ready for renewal in 2027.
This award allows me to be present and keep my son safe and get him the support he deserves.
I am so thankful gor all the advice and support I have received here.
Thank you

Decision was made yesterday I mean!

My NC decision was made yesterday, called with option 4 and the lady told me. Good Luck 🤞

That’s so great to hear ☺️

I’m hoping if I can explain about the post. Altho the guy on the phone was so strange he was like only call back if you haven’t got the letter by 1st but the he said ‘I doubt you will be calling back’ I’m like what’s that about ?!!

Call and use option 4 at the end, I pointed out its the lead up to Christmas and black Friday sales so post is starting to go doolally and could they please just tell me to ease my mind incase the letter enters the void that is mid Nov to mid Jan chaos theory. She told me rates, start date, end date/ renewal time and how much backdated funds to expect in my account.

Just got off the phone to a lovely chap. Told me my son has been re awarded same rates , another 2 years which is a relief :) good luck everyone

You are seeing other people before you and it is frustrating and the call handlers don’t help the stress.

My little one is actually my nephew that I have had in my care since he was a few weeks old, his dad is my younger brother and he’s the exact same as my brother but x10😂 He went from being too bright and smart at 18 months to 2 years old, could count to 20, all the colours and could tell you all the construction vehicles and planets and was meeting milestones and potty trained but I could see the traits like stimming, flapping, walking on tip toes, no eye to eye contact and wasn’t interested in toys, I didn’t have a health visitor at the time because of custody things but when he was 2 and 1/2 one came to see us and she referred him right away to paediatrician after watching him, but after 2 he regressed so much now will only count 5678, struggles to walk, goes weeks without moving his bowels and back in nappies, stims to the point his body is completely exhausted and sore which then leads to meltdowns, sleep a few hours a night and that’s broken sleep, his speech is amazing and people always point it out but ask him what he wants for dinner or something like that and he’s goes mute and has limited communication skills🫣
In a way I’m glad I only have the 1 and no bio kids of my own(I was 21 when he was put in my care) as I have to have eyes at the back of my head and baby monitors on when I leave the room, baby gates on every room, and with how aggressive he can be sometimes i would feel so guilty if he was to hurt another child as he doesn’t know any better as simple things like going in his face you get a backhanded slap😂 he done it to his speech and language therapist and I was mortified, he’s under the dietician to as he only eats crackers, uncooked noodles, rice, bread, fries and nuggets and he’ll physically gag if it’s anything different, same here with the not being able to use utensils his whole body goes rigid and stiff and he just shakes, I’m having to feed him so he’ll eat🙈I don’t know how you do it, I wouldn’t change him for the world and love him more than anything but the bad days do outweigh the good sometimes😬 Sounds like you have a lot going on and really hope you get a good outcome and what your children deserve😊

It definitely doesnt help with the stress!

You definitely do have your hands full dont you. He sounds very similar to all my children with the regression, stimming, hand flapping, gagging at food. The constant supervision is the hardest as you dont get any respite or time to yourself.

You are amazing for taking on your nephew and by the sounds of everything your doing amazing at ensuring he is recieving the right help and support. It is super hard being a parent as it is and to have one with neurodiversities is 100x harder. You should be super proud of yourself 😁

It is hard having 5 with the same difficulties and some worse then the others. My third daughter has both autism and adhd but she doesnt require the care the others do.

My oldest also was a fantastic speaker but regressed in the same way as your nephew. She doesnt like to speak socially though and cant express her thoughts and emotions and it comes out in cat cries. She also hisses and scratches like a cat when distressed and will take chunks out of you. And i know the feeling all to well of being embarrassed with your child hitting, she takes chunks out of teachers thighs.

I have had social service involvement 3 times because my kids have all really hurt each other causing black eyes etc. Bite marks all over their bodies and its from each other. But they canr express who its from so have had them look into us. Obviously its been proven its not us. We live in a small three bedroom home and the three older share. Its only this time where the social worker has said its not our fault and she is pushing for us to get a 5 bedroom house as they have all the medical proof that all the children are physically aggressive to each other. And are unable to share a room as they all gey highly dysregulated.

Please let me know your outcome and il keep you informed of mine.

Hi, my daughters renewal has been successful, decision made yesterday, original end date 6/12,
She has been awarded MRC again, but this time LRM has been added,
Does the mobility part get backdated to when they received renewal forms, or does it start from scratch on next payment date?
Thank you.

I think his mobility start once his 5 year old . No backdate payment. That’s all I know thanks .

Congratulations, so happy for you and your child. 😁Im sure you said you didnt have any evidence, as it gives me hope my twins could be accepted!

My only evidence was from the answers to the questions on the form. I did specify he is awaiting practitioner allocation. Also his teacher the angel 😇 that she is also wrote on the form about how he is at school and that she has noticed its slowly getting worse compared to how he was when she taught him last about 4 years ago. His home behaviours are starting to show at school, could be hormones given his age. Stress as its sats year so there's more tests involved during school. He is needing more timeouts to regulate and she has notes it all for the form. Hope this helps x

Well im very happy for you both!! Thats good then, at least you had someone who wanted to help. As I have a few pieces, it gives me a little bit of hope they arent going to be declined. But then again they are only 3 and not in education yet as we are also waiting a practicioner to help get them settled into one.

I'll be honest I've been trying to get him diagnosed since about 2 when he stopped talking suddenly then started avoiding foods and things with certain textures. I went to what was supposed to be the health visitor known as healthy families team now, they messed me around for months with appointments not coming through. I then went to the GP, they refused outright to help and said either back to healthy families or waiting til he started school. I waited and waited and waited conversations with teachers at least once a month, interventions put in place multiple times. It took his current teacher to push once she had become qualified almost 2.5 years ago. He still isn't diagnosed but he will be and with her help he can now get the support he needs.

You can try different play groups especially those run by or controlled by your local/ county authority. They can write statements after watching your children during sessions on your behalf. The more who see and can state that the better.

Awww bless you, it definitely seems like you have had a right time with it. Im so glad you are now able to get the help for your son, as getting one person to listen can make a big difference.

Thats a good idea. I have speech and language referal, an initial assessment report for another. I have letter from disability worker, GP and Health visitor. She has also wrote that she has done the referals for autism, and we cant do an ADHD until 6. So i have a little bit of evidence for them both. **

If anyone can do statements about behaviours and extra support your twins need in comparison to others their age even better. My sons teacher stated things like needs adjustment time between changing tasks example child needs to be told 5 minutes before class changes task to allow him to process and prepare for new topic or he becomes agitated then withdrawn for periods of time up to one hour to regulate. Also that if she needed the whole classes attention that she has to state my son by name or he doesn't register the request to adjust his focus.
Little things like that showing a clear difference in children of the same age helps tremendously as it shows the additional support your children need vs others of the same age.

Ive got all that for my oldest and my second daughter, plus EHCPs, educational psychologist reports, road safety awareness course they both failed. Speech and language reports, letters from school and occupational therapists.

Just the twins its been harder to get as they are not in school yet. But they have detailed that there needs far exceed a normal child of their age so hopefully fingers crossed i have enough for now!

And if they get awarded then i should hopefully have their diagnosis and they should also be in a school.