High rate care question

Rin1472
Rin1472 Online Community Member Posts: 60 Empowering
edited February 2023 in PIP, DLA, ADP and AA
Hi all,

 We’ve been told that we ‘should’ qualify for high rate care and mobility for my 6 year old son, however, I’ve looked through so much online, and I find the wording so fuzzy around sleep. 

You need the high rate care to access the high rate mobility which he would definitely qualify for. 

A bit of background. He’s autistic with high sensory needs. He’s classed as ‘complex’. The LA are currently consulting autism specialist schools, and we’ve had 16, and counting, come back as ‘can’t meet needs’. Currently, he’s on a part time timetable with his original mainstream, but he is escorted straight to a ‘safe room’ where he spends the day with two TA’s. He has no access to education, and has only a tablet/Netflix for stimulation. He’s unable to access break times or lunch times. He just sits in this one room for the whole school day. 

He’s been excluded 3 times so far after attacking staff in crisis. The school are aware that this isn’t a legal reason to give a fixed term exclusion, but they’ve had no choice. The LA have granted them emergency funding to help them manage his needs better on the three days he’s in, but they refuse to support us as the family. 

They keep signposting us to support which requires high rate DLA to access, like EHIPS, but I think the technicalities around sleep will be a barrier for us. 

The rules around sleep are from 10pm to 7am. This can’t include the time it takes to get him to bed. But, every single night without fail, he will fight bedtime to no end. It can take on average until 10pm to get him settled. But you can’t just wind down after that and drop off to sleep. We need time to calm our own minds for our own mental wellbeing. So we sit up much later than we should just for some respite. 

Now and again he’ll get up and need supervision through the night maybe once a week, but he’s much more likely to wake really early and start demanding things. Like this morning he was up at 6am insisting on pliars. He was becoming incredibly distressed. It turned out he’d been up earlier than this and was cutting some cables in an old electronic. 

I think I maybe get around 4 hours of sleep a night with this pattern, which impacts my mental health too as I also suffer with insomnia. It’s a bit of a mess really. We could really do with the access to the high rate mobility too, which we can’t access without the high care. This is due to his sudden and extreme behaviour when out. So many potential doors to support are closed to us. 

I’m doing a sleep diary, but I really can’t see any advice online which would suggest we could access the high rate care as he’s not waking more than three times a night. Even with the fact he requires two adults with him in school to keep him and others safe, and those care needs aren’t just going to go away between the hours of 10pm and 7am. And the fact his sleep pattern of refusing to sleep until late and waking early have a knock on effect to everything else. 

I thought maybe the DLA gurus here could offer advice if this is even worth fighting for under the circumstances above? 

Thank you

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