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

Should also add I have asked for a mandatory reconsideration and I've emailed the cerebra charity to ask for some help too.

Thank you

That sounds so tough ! Strange you haven't been awarded any motility, my ds has low rate motility and he doesn't do half the things your son does, I just explained he's got no road awareness or anything

My child is up all night and we only get mrc it’s my understanding that hrc is hard to get and I don’t personally want to rock the boat!

Did you put all the details on the form, as in the worst case scenario? One difficulty with very young children is that they all would need supervision at night to keep safe. What you need to put is - eg - that your dd is up out of bed hourly, is able to climb over the safety rail, climb over the safety gate, open doors with high handles etc etc. Ie, more than ‘he needs supervision to stay safe at night’.

I thought middle level did include some night supervision? How old is he is another question?
I know that for mobility, my friend was told while her (sounds similar) dc could go in a buggy that she didn't need mobility. I think she fought that and won, but I may be wrong there.

What she did struggle with when she was smaller as well was proving that it was more supervision (and it was, hugely more) as a lot of it sounded "well I'd help them get into the bath at that age" and didn't take account that it would take her 90 minutes to work her up to getting into the bath and 2 hours to calm down afterwards at times. (she hated the idea but got very excited when in)

Sorry, yes should have also added his age. Hes 3.

Hes always been different, very set in his ways and always had these huge Meltdowns.

He doesn't respond to his name either. Not scared of anything so lack of danger awareness.

He really does stick out like a sore thumb with 'normal children' his age.

@soontobe60 thank you. Yes I think I wasn't clear enough despite telling them how he's out of his bed at night and puts stuff into his mouth etc all the time and how we've unfortunately found him loads of weird things in his mouth, weirdest being rubber band, screw and at parents house he was chewing on wires. He's always chewing shoes too and towels.

@MargaretThursday it really is so much more than just supervising. It's the meltdown getting in, during and then getting out.

@whatagloriousthingtobe it's such a sad situation to be in. On the other hand hes obsessed with numbers and counting is something that calms him

We have asked for a special needs buggy as he's too big for his pushchair now but they have said that's just to be used for educational purposes if we do get it from physio department.
There's no way he would tolerate being on a bus/tram/train full of people, loud noises and all the other sensory overloading things.
In the car he starts headbutting the window when it stops at red light.

You won’t get mobility then if he is 3 you can only get HRM which is only awarded under the smi rules or VUW. I don’t think you will qualify for those so you need to wait till he is 5 and reapply for LRM.

If that wasn’t clear only HRM can be awarded under 5, which it doesn’t sound like he will qualify for, LRM is only awarded from 5

The benefits and work website have helpful guides for going through appeals etc. You have to pay to join but I think it’s only £20 and the guides are very good.

@TurnUpTurnip after reading the letter they have sent us it does mention a few conditions it can be awarded under the age of 5
Being VUW
Or severe mental illness.
As much as it hurts me to have to admit surely a child who regularly stops walking and starts self-harming by banging his head off the concrete floor meets this criteria? He has no awareness of danger, doesn't respond to his name but isn't deaf he's been tested.

I don't want that to come across the wrong way. It hurts to write that. My child will always have to fight for support and this scares me.

Will definitely have a look at that site thank you.
I have contacted a few helplines to see what they say. I know the autism charity have a letter that can be printed out to attach.

I don’t know too much about VUW but I know with SMI you have to meet every single one of the criteria’s which you won’t, maybe look into VUW as you won’t get it under SMI

@ChronicallyFucked
He sounds very similar to my friend's dc. Sorry to say but she had to fight every inch of the way. What was noticeable was every time they actually got someone to assess, it took about 5 minutes for them to say they'd give all available help. If they didn't send anyone then they said she was fine and didn't need help.
Don't give up and keep on fighting.

Can't imagine the physio would actually police that, but it might be worth seeing if there's somewhere near that refurbishes things like special needs buggies. There's a charity that does it, but I don't know if it's limited in area.

I second Cerebra and Benefits and Work to help with Mandatory Reconsideration.

For his chewing (pica?) it's a sensory need, have a look at chewigems or chewellery and see if there's anything that may help him.

His 'fussiness' with food could also be sensory, this booklet's very helpful
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Compare, compare and compare some more. What is different about him? What should a normal child his age be doing? Why does he need extra care in comparison to another 3 year old? Spell it out to them. I appreciate it's difficult with a young child though, as they could say it's within the realms of normal, and it sucks, but I've been successful at MR twice. I swear they deliberately make it hard to claim, in the hope you go away. Tribunal if you have to.

Best of luck.

You may prefer to wait til five when you can get more on mobility less than two years right?
Depends how much difference the £ would make right now and how much energy needed to go thru this
At 5 the differences will be easier to prove

At three they will argue that many three year old require night supervision and supervision by roads etc at five the difference becomes easier to prove

@peanutsandchilli
This I haven't done yet and I'm getting a list together to draft my letter will add this and look at the sites mentioned above thank you.

@blanktimes we've bought him so many but he won't use them.
Hes very impulsive and unpredictable.
My best friend has child a few months younger so I have someone to directly compare to as well as his siblings. He does nothing that a 3yr old does.
He doesn't play with toys, He lines them up if you touch his line God help you.

@embracelife I was thinking this too, will see how we get on with the MR and take it from there.

Thank you everyone

Will CAB be of any use?

@margaretthursday seems like there's a lot of similarities and the fact she won gives me hope.
Might be a bit of a challenge but it will benefit him.

Thank you

@turnupturnip he meets each one of those on the flow chart apart from hrc which I'm hoping does be changed once they review it.
Can I ask where did you get this from? Thank you very much

@TurnUpTurnip what's VUW? I've Googled but can't find the answer in relation to DLA claims.

Also what is SMI?

Thanks.

[quote SkepticalCat]@TurnUpTurnip what's VUW? I've Googled but can't find the answer in relation to DLA claims.

Also what is SMI?

Thanks.[/quote]
VUW is virtually unable to walk and SMI is severely mentally impaired.

It’s just from a google search op, are you on Facebook? There is a great dla group on their “dla for children advice and support” they will talk you through it all and help you to appeal if you feel he meets the criteria I would definitely post on there from some advice/guidance. So many knowledgable people on there that are use to dealing with MR and appeals. Good luck.

Thanks @TurnUpTurnip

I think at 3 the issue is it’s perfectly normal for them not to sleep well which makes it much harder to demonstrate their needs are more than their peer. It may help if you keep a detailed diary for a few weeks of every night and what happens to show its above the normal for that age?