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High rate care question

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Rin1472
Rin1472 Community member Posts: 58 Courageous
edited February 2023 in PIP, DLA, 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

Comments

  • poppy123456
    poppy123456 Community member Posts: 57,110 Disability Gamechanger
    edited February 2023
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    To be entitled to high rate care DLA he will need to have frequent care needs in both day and night. Unfortunately the affect it has on your health will not make a difference to his DLA claim. 
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • yanni
    yanni Community member Posts: 92 Pioneering
    edited February 2023
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    Whilst needing ‘frequent’ or ‘repeated’ attention is one criteria, the other is needing ‘prolonged’ attention. So your son doesn’t have to need attention 3 times a night to meet the criteria.

     

    The legislation for DLA states:

    (c)he is so severely disabled physically or mentally that, at night,—

    (i)he requires from another person prolonged or repeated attention in connection with his bodily functions; or

    (ii)in order to avoid substantial danger to himself or others he requires another person to be awake for a prolonged period or at frequent intervals for the purpose of watching over him.

     

    If you go here https://www.advicenow.org.uk/ and search ' DLA appeal' there is a free guide to download which has some useful information:

     

    It says that ‘ prolonged attention’ or  ‘a prolonged period’ means 20 minutes or more.

     

    “To get the higher rate for care, your child must need:

     • substantially more practical help, encouragement or prompting with daily living tasks than another child of their age frequently throughout the day, and

     • for either at least 20 minutes at night, or at least three times during the night, or

    • someone to keep an eye on them during the day and night to make sure they do not hurt themselves or other people.”

     

    Night time is defined as the time the household would normally be asleep e.g. 10/11pm to around 7am.  The guide says:

     

    “To count as needing help at night, your child needs to require a lot more help than another child of their age at a time when you would usually be asleep. For example, if you usually go to bed from 11pm–7am, it would only count as ‘night’ if it happens between 11pm–7am. If you would usually be up, it doesn’t count even though it is after the child’s bedtime.

    This can sometimes be tricky for parents to assess as if your child has always needed lots of help at night, you have probably got used to being awake a lot of the night. It might be helpful to ask yourself if you would have a different sleeping pattern if your child didn’t need your help over night.”

     

    “Bodily functions – The law specifies that entitlement to DLA has to be based on needing extra help with ‘bodily functions’. This is anything to do with the body and how it works, for example eating, drinking, washing, dressing, going to the toilet, sleeping, thinking and communicating”

     

    “Supervision – The law specifies that one kind of help that counts towards entitlement to DLA is ‘supervision’. This means where the child needs someone with them to avoid substantial danger. This could be because the child might need to be physically restrained to stop something from happening (for example, running into a road) or where they need to be watched in case something happens (for example, a seizure) and they need help afterwards. All children need some degree of supervision, so to entitle a child to DLA the child must need a lot more supervision than other children their age.”

     

    So if your son needs attention for more than 20 minutes in relation to his bodily or needs someone to watch over him (supervision) for at least 20 minutes to keep him or others safe from substantial danger between 10/11pm and 7am and this attention is ‘a lot more’ than other children his age then he could meet the night needs criteria.

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