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Here are some suggested organisations that offer expert advice on special needs.

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3 replies

ScottishTinydancer321 · 22/11/2021 18:29

Omg my head is a mess.
I have 3 children with asd, a new born, I’m going to tribunal for a ehcp, my mum/Nan recently passed away too. Now I want to on top of that fight Dla but I don’t think I have it in me.
My son who is in a sen school, 9 is still on eyfs curriculum, and has asd and adhd. He uses a buggy out (although doesn’t at school but if we could go out mid week in quite places we would be fine) but weekends and holidays are busy. We can’t take him to shops as he can’t cope and do parks early (8am-9am). We do try mornings out and always use the buggy for that, or he runs.
He also doesn’t sleep till 1 am and up most nights at 4am changing bedding and showering him although he wears a nappy.
We tried to put in a change of circumstance. For high rate care (his sleep has always been poor), also under vuw. I knew we prob wouldn’t get High rate mobility but tried. As we have just had to buy a bus as couldn’t fit a pram and buggy in the boot.
The high rate care I was expecting to get as had a Paed report and sleep diary .
But we didn’t.
I don’t know whether to do a mr. They turned high rate care down as the Paed had just increased his sleeping meds 🤦🏼‍♀️. So they said that should work.
I’m not sure what to do. Surely they couldn’t drop his claim as his in a sen school!
Please don’t judge by the number of children I have, first 3 were close in age before we knew diagnosis. Baby 4 was a massive surprise On birth control and have pcos and needed fertility meds to have the first 3. So is my little miracle. Hubby works full time in a good job.
This money is for my son. The extra would of gone on restbite. We have no family to help so never get any restbite only school.
I feel he should get high rate care. Would you fight it? I’m a bit worried as also fighting for a ehcp. (For my other child)

OP posts:
Imitatingdory · 22/11/2021 21:35

Unfortunately, although it is unlikely from your post, it is possible for the award to be reduced at Tribunal.

Have you had social care assessments? A carer's assessment for you and assessments via the disabled children's team for the 3 oldest. You may get respite that way. If you have appealing the EHCP have you appealed social care provision,

Have you contacted HomeStart?

ScottishTinydancer321 · 23/11/2021 14:59

Thanks. I have done it. Not sent it yet though. I’m hoping I have nothing to loose but you never know. His moderately autistic I would say, his def not high functioning but his not non verbal either. It’s complicated the spectrum.
Literally no way to get restbite here unless really severe. Not that I have tried but from what I hear. 😭

OP posts:
Imitatingdory · 23/11/2021 19:57

It is worth asking for social care assessments, DC don't need to be non verbal to have an assessment and receive respite, but you do have to fight for it. The perfect opportunity for sorting social care provision is via SENDIST when appealing the EHCP anyway.

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