Autistic child- dla mandatory reconsideration help ple

[ChronicallyFucked]

Hi.
I haven't been active on chat for so long but need some advice fellow mumsnetters (please)

I've posted in general chat for traffic hoping someone will see and can signpost.

My dc is being assessed for autism, salt have said he will definitely get diagnosis at his review as she's been working with him for some time now.

Hes up most nights, squeezing into little spaces, self harming by banging his head of floor or walls, shoving stuff in his mouth that he shouldn't be mainly stuff like tissue and he does this so fact and forcefully.
During the day he's non stop jumping off things and going round and round in circles stimming.
Hes still nonverbal, has just started nursery but due to how severe his special needs are he can't go the full 3 hours yet. He needs 1-1 which has been applied for as emergency.
He needs constant watching due to his behaviours, he's such a flight risk he needs physically restriaing when out and about.

We applied and got awarded middle rate care as apparently he doesn't need care at night which he does and I've explained well on the forms but feel like it's been overlooked.

As for mobility, he's not been awarded it as he can physically walk despite regularly having Meltdowns which cause the self harming episodes so he either chucks himself on to the ground and refuses to walk or he bangs his head of the floor.
It's so distressing for him and others around him, he's obv still in Nappies, can't communicate at all.
He can't ask for a drink. He can't say he's hungry etc.
Hes such a fussy eater too.

I was hoping someone can offer some advice of signpost me to some advice for asking for them to actually read the form.
The salt did a fantastic letter detailing how high needs he is and how he needs 1-1 all 24.7

Also
Please be nice. It's hard. Really hard to see your dc hurting themselves but can't explain why, what's wrong.
Thank you very much

Ps name changed as its been so long

@TurnUpTurnip thank you, just joined the group on Fb will have a look through fb too

@sirzy that's a fantastic idea! Will log sleep and even behaviour patterns or just self harming episodes during the day and night.
Thank you

The form and Mr letter has arrived.

I will be slowly writing my letter today .
He was up most of the night trying to harm himself 😔

The way the Mr is written looks like they just want more details explaining why more than anything

I am so sorry you are going through this. You definitely should have a higher award.

On our first claim my DD was awarded high rate for mobility, even though she walk perfectly well. This is because she had no danger awareness, and might run off and onto a road. Still, I was amazed we got high level.
Your son's problems sound far far worse than we have had with DD.

My approach was always to lay it on really thick. In each answer give as much info as possible, go over and above. Just because you've mentioned a situation once, don't let it stop you hammering it out again in another question. And always mention the very worst if what's been happening.

Good luck

Join this group -

www.facebook.com/groups/518450451568106/?ref=share

Even if you just join to read the posts you’ll learn loads.

My son has autism and learning disabilities and we get hrc and low rate mobility. For hrc they need almost constant supervision during the day and night. It’s not impossible to get - we get it and many others do! - but you need to really evidence why they can’t be left unsupervised. My son has a diagnosed sleep disorder and is on melatonin.

@ChronicallyFucked I volunteer for CAB doing disability benefits and it’s totally the sort of thing we help with.
It’s also really common for first applications to be turned down and have to do MR and full appeal.

A PP mentioned comparing what a child your DC’s age should do vs what your DC does, that’s what we do when we do MR and appeals at CAB.

Thank you all, I will hopefully come back with an update once I get a reply.
It's all sent off.
I did the comparing etc so here's hoping

hi i just come across this thread im currently waiting for a mr decision my son was awarded hrc no mobilty he is only 3 nearly 4 im aware he could only get hrm, just wondering has anyone been successful with an mr x

Hi 👋

A little update as its been a while

We are going to tribunal and dla haven't got back to the courts/tribunal people

He was seen by a orthotic recently for headbanging and protective head gear but she's refusing to write a letter to say he's been In to see her as he didn't headbutt there. He's done it plenty of times at school and even come home with a sick note.
She said there's 2 types soft and hard protection. Sounds like he needs soft protection as he's not falling from a height so his full body weight isn't behind him and if he gets any grazes on head he would need hard protection so I went on to show a mark he had on his forhead which was starting to heal a little.
She measured his head and gave us 2 options a beanie type or more medical looking one which was more breathable. I told her he likes his beanie hat at home so that would be more comfortable.

When she rang me she said she didn't advise me
So wtf was that I mentioned above. That's her advising me right??
This evidence is needed for his EHCP too as school have put it in as exceptional circumstances due to his needs.
Why do people have to be so difficult?

I asked the orthotic lady to do a letter/clinic report if we could have a copy of for school she said she's never had to do one for school before I said even to just mention he's been in for this reason but she point blank refused?
We normally get clinic letters sent home but haven't had anything from them??

@Jneill2021sounds like we are in the same boat but our Mr wasn't successful for mobility due to lack of evidence.
The Mr person on phone said if I gather the evidence and send it in he would be eligible which I did but they haven't responded to myself or to the tribunal people.

My word of advice is get lots of evidence in x

The Cerebra website has a fantastic page that goes through the dla form section by section. It’s very good at giving pointers about the things to consider about mobility. If you’ve contacted them already I’m sure you’ll find this helpful.

Also don’t feel you have to stick to the boxes given in the form. You can write as much detail as you like on separate pages and attach it. If you’ve already submitted it I think you can ask them to reconsider but not sure if you can send more info, but worth checking.

Oh just seen your update sorry! If I were you I would just include the name of the specialist, date of appointment and brief description. Dla should contact them if they need evidence I think.
Include everyone you speak to, with dates.

@ChronicallyFucked so sorry you have to go to tribunal i have sent of more evidence just a waiting game now but i have written a very detailed letter as i believe under the smi rules he should be entitled my little one also has autism, adhd but wont diagnosis him yet because of his age but has all traits , global development delay, also alot of issues with sensory, im hoping to hear any day im just hoping i dont have to do the whole tribunal thing as i find it all so draining, hopefully they change there mind before you go to tribunal as i have heard they have done this in the past xx

My daughter sounds very similar to your son OP in hiw her ASD presents.

I received middle rate and no mobility until she turned 5. Then she was reassessed and awarded higher rate care and low mobility. From my understanding the rate is based on a "typical child" of under 5 and how much more care they need. So for example it is not unusual for a child under 5 to have problems sleeping or toileting (according to them) or not understanding instructions.

It's a nightmare trying to get financial help from the government. Not to mention heartbreaking everytime you have to write down the negative things like self harm (DD slaps herself on the head) so you have my sympathies.

@TheRealShedSadie
Thank you! That's actually a very good idea! I will be doing that and can do that for the mobility pushchair he's been given too. However they did ring and have offered to send me a copy of their notes so I'm hoping that comes soon too.

@Jneill2021 our dc sound very similar. It's heartbreaking having to fight for support.
I've gone over the smi rule so many times and can confirm he meets criteria for extreme behaviour, surely self harming is classed as extreme behaviour? And destroying things/, chucking things at school at people when upset which happens a lot due to his needs.

In my letter I'm doing now I'm going once again compare what a child his age can do and what my dc is doing. Is this something you can do? To compare and show them the extent of everything

@ForTheLoveOfSleep

He gets hrc now and the dla Mr person did say from everything he's read he is eligible for hrm due to smi but there was no other evidence sent in.
Straight after the call I got an email from physio confirming everything as they've seen it first hand.

He needs protective head gear for his headbanging which he even does in the car/in his cot/ on someone/ floor/ wall

He also needs special footwear as his gait is off due to how much he tiptoe walks and his muscles are all tight at the back .
He needs special shoes with special insole. I know this doesn't stop him from walking but him walking unrestrained is a huge no no outside. Even inside he needs help at times. He's a huge flight risk, self harms and regularly refuses to walk chucks himself around. He has a lot of sensory issues too.

Fx it goes through a little smoother!

A huge thank you everyone

Hi sorry to jump on I've just been reading through your post. Going through something very similar now can you please advise how long it took once you asked for a reconsideration? Because I know again they will decline me so trying to gather some sort of time scale as to when they will get back to me so I can send another stack of evidence for the ma distort reconsideration. Thanks in advance

Can you ask your GP to refer to the child sleep clinic. And then use this referral to prove that he needs care in the night? Usually MR works better if you submit extra evidence along with it. Can you refer yourself to the children's centre for help with the night time waking? And then also use this as evidence?

I sent a weeks diary in when I had to do a mandatory reconsideration for ds giving details of everything I had to do for ds. I also sent his school attendance records as he was a persistent school refuser & was nearly always late on the days he did go to school because he was having meltdowns. He went from being refused DLA to lower rate mobility & highest rate care.

Sounds like my ds. We get high rate care and got low rate mobility at 5 (which I still believe should be high rate!). I wish I'd appealed that but I didn't have the energy.

Do you have any medical evidence of night needs. Have you ever talked to doc or health visitor about it? How much supervision does he need at night? How many times are you up and how long for?

I am really really shocked that you are having to fight so hard of us and all these barriers are in front of you. It's really shameful that our system is like this.

Big update incoming

I will reply to everyone

Just don't give up
We did it.
🙌

After a long fight we finally did it.

Every stupid excuse they come up with we replied with a counter argument while waiting for a court date.
I would add something online and they would try to make stupid remarks.

The judge took one look at the case, read through and he got awarded HRM
He already gets HRC .
HRM as he fulfils Severely mentally impaired requirement.
We added lots of reports from professionals including his griffiths test report.

Congratulations OP I’m really pleased for you and your son. I hope it helps and I hope he gets the support he needs.

You've had good advice already but just wanted to say, he's still so young, my now 9yo is capable of understanding now to an extent I never thought he would be. Basically, hang in there. It's never been easy but many aspects of parenting my autistic child have gotten a bit less difficult.