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

Changes to the child’s care needs, conditions or mobility needs
7

Polly421 · 14/05/2022 23:56

Hi

My little boy has just been awarded child disability payment (Scotland’s version of DLA) he’s been awarded HRC until September 2025. They will plan a review on the mobility part next year when he’s 3 to see if he’s entitled to HRM and if not he will have full review September 2025 when 5 for both mobility and care needs.
So I’ve read through the decision letter. He’s a list of issues the now delayed motor skills, global development delay, sensory issues, dysphasia and constipation and does require a lot of extra care. Our doctor said he’s showing a lot of early signs of autism but just now as he’s so young wants to focus on getting his motor skills improved and further down the line we will looking at his behaviour, communication and sensory issue if needed.
He 19 months can’t sit unaided the now and can’t really move around like others his own age. We currently gets physio and occupational therapy sessions each week and exercise to do daily to help with his motor skills. They told me aim just now is to get him to sit unsupported then we will move on to crawling then hopefully eventually walking.
So my question is when he is then sitting unaided do I need to inform them of this changes like this? I don’t want to have a review years later and they go you never informed us he could do sit up etc . On the letter it’s says if the child's condition gets better or worse in the longer term to inform them. What do they mean by longer term? Does it mean once’s able to everything a child his own age can do when he’s no longer classed as having a motor skill delay. It also states you don’t need to inform them of needs stay the same as they understand conditions vary day to day.

My partner said I’m totally over thinking it the now but i don’t want to further down the line get into trouble for not updating them about things I’ve said he can’t do when he does manage to do them. As over 3 years is a long time for his next review.


Any advice is appreciated thanks

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roughtyping · 15/05/2022 17:14

Hi @Polly421 👋 I've been wondering this too so will be following. The most obvious one for me would be if my DS stops wearing nappies overnight (he's 6 and a half) although currently no sign of that - he's not long started melatonin and paeds said getting rid of night time nappies just now would be counter productive (makes sense!).

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Polly421 · 15/05/2022 17:51

@roughtyping I was surprised at the length of his award simply because he is so young the now I was expecting a full review next year when 3 to be honest. A lot can change between now and 2025. Just now he can’t sit up unsupported and I do think it will be a while before he does. His physio has stated they need to be confident that when he does that he can get in and out of that position himself safely too then they move on other aspects like crawling, standing, walking. So he’s got along away to go until he can do all that. I just thought to myself when he does sit unaided is that classed that his condition has got better? So I inform them. Sitting up is just one part of his condition as then we move on to other areas where he’s delayed. We haven’t even started on aspects of his sensory, behaviour and communication issues because their focus just now is improving his motor skills hence why now he’s been sent to see a neurologist. I’m happy our kids haven’t finally been awarded but now it’s got me thinking all the what ifs going forward.

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Polly421 · 15/05/2022 21:37

Have finally been awarded I meant on my earlier message not haven’t 🤣xx

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Polly421 · 16/05/2022 16:37

@roughtyping I spoke to someone over phone at child disability payment asking if they could give me more information on changes going forward because I’m confusing myself 🤣 She was lovely she said they wouldn’t need to know things like my son sits up etc unless it affects amount of care we give him and I would only need to update them on changes like his physio has stopped all together as that classed as change in treatment. She advised if something like that was to happen, to get something official from his physio to send in and they would relook at his award. She said a change in his treatment wouldn’t necessarily change his over all award as that’s just one part but means were making sure we’re keeping them up to date throughout. She totally understood why I was asking with him being so small and not being reviewed until September 2025 a-lot could potentially change but no necessarily impact his care amount.
Feel a lot better calling and double checking to keep myself right.

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roughtyping · 21/05/2022 17:36

Hi @Polly421 thank you for updating! I updated online, tried to phone but couldn't get through. It's such a daft wee change - DA doing a therapy in school 3 times a week instead of 5 - but so worried I'll make a mistake!

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Polly421 · 21/05/2022 18:58

@roughtyping I don’t think that change will affect much as he still get therapy just slightly reduced. Was it easy enough to update it online? Do you just need to update the one part and not the full form again?

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roughtyping · 21/05/2022 23:21

@Polly421 yes easy to update online, just need to write it in basically - more time filling in the info about who we are. Think I will try to speak to someone at some point when I'm not so rushed!

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