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monitoring health conditions and managing therapies of a young person

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10 months 2 weeks ago #286303 by Brenda
Apologies for the long message, this is not easy to explain without giving more details. My son's got 5 diagnoses - autism, sensory processing disorder, dyspraxia, anxiety and Tourette's syndrome. He's also been suffering from depression recently. Being autistic, he struggles to communicate about his needs and to engage with professionals. So far, he's only managed to connect with two professionals but funding for their support has stopped so he's in a vulnerable position.

I have been helping him manage his health conditions for over 10 years - monitoring mental health which has always been a big concern, arranging therapies & attending them with him if and when needed, helping him calm down when anxious and prompting him to implement CBT strategies; sensory regulation is another big area - he needs to do a particular type of exercise each week, prescribed by OT with specific intensity and frequency otherwise, as he puts it 'his mind goes numb' he can't function, concentrate or feel well overall. I have been trained in sensory regulation by OTs so proactively involved in helping him manage it.

Same goes for strategies for dyspraxia and social communication - he had Occupational Therapy sessions which I attended and helped him implement various strategies. I also help him with social skills/communication skills - he was getting professional support for communication from a psychologist who is also ASD specialist - he knows her well and is one of the few professionals he's comfortable talking to. This worked much better for him then traditional Speech and Language therapy which he had in school until couple of years ago but then didn't want to attend any longer as he struggled to connect with professionals in those sessions and they were generic sessions, not tailored for his needs.
I explained all of this in quite a lot of detail in answer to question 5 in PIP form and gave estimates of my time spent on monitoring and helping my son manage his health conditions and therapies. This takes up a lot of my time and I did my best to give estimates as it can vary a lot.

In the telephone assessment I had last week, the assessor was only interested in sensory therapy prescribed by a medical professional i.e. OT therapy. My son's been struggling to keep up with the prescribed exercise routine due to depression so I tried to explain that the he dropped the exercises from 4 times a week to 2 times but that he has to keep it up and that I am helping him get back to the prescribed routine. Listening to the recording, I don't think that the assessor recorded this properly so will follow up with the additional evidence from OT and explain exercises in more detail. However, it got me confused so didn't really explain much else in the assessment. The assessor pretty much ignored everything I said about my son getting better support from the ASD specialist he trusted and connected with rather than general Speech and Language therapy.

I found questions about therapy on PIP form confusing as difficult to explain all of the above. Seeing that the assessor also managed to confuse me, I'm worried if they will give us any points for managing therapy/health conditions.

On page 43 of your extremely useful online guide, it says 'If you need help with supervision, prompting or assistance to manage medication and monitor a health condition then you should score more than one point. How many points will depend on the length of time the help is required. It is how long you need supervision, prompting or assistance for that is the test, not how long the therapy lasts.'

My questions are:

1. Does the information I provided above about what I do to monitor my son's health conditions fit the above description and therefore does he qualify to get more than one point?
2. Does helping him manage other therapies rather than just the exercises prescribed by his OT count i.e. CBT strategies to manage emotions, social skills strategies and organisational strategies for dyspraxia - all based on following the advice from OT and a Psychologist and explained in their reports

Any advice would be very welcome as I would like to include an explanation in the additional evidence.

To make things a bit more complicated, the assessor asked me about which A-levels my son did in school. I told her that he did Maths, Further Maths, Physics, Chemistry and Psychology. Though he did well eventually, he received a huge amount of support from school, thanks to my relentless emails and meetings. He had 50% extra time in his exams, overnight quarantine so that he could only sit one exam at time and handwriting software/scribe in exams. He's a geeky kid, especially when it comes to his special interests, which is typical for autism but is also registered disabled and has over 50 special educational needs identified in his EHCP. He struggled a lot during A-levels, had debilitating anxiety and kept running out of 50% extra time he was given in exams. All of this was explained in PIP form in detail and I tried to explain it in the assessment too but wasn't given much time.

I am now worried that they might just assume that because he did the above A-levels he is fine about many other daily activities, which he isn't and I went in a lot of detail to explain this in PIP form.

My question is - would the fact that he needed 50% more time in his exams and kept running out of time count as not being able to do tasks reliably as needs much more time then other people? I can send additional evidence from school i.e. numerous emails about support he received for disabilities and educational needs during the exams in particular.

I've also got a question about whether software for time management, taking notes, structuring writing, proofreading i.e. Grammarly which he was awarded by Disability Student Allowance now that he's at Uni count as aid/appliance. This would only help with dyspraxia so even if it does, am I right in thinking that if other descriptors apply i.e. time taken to manage and monitor conditions and therapies apply than he should score more than one point for 3b, which you quite rightly call 'the almost pointless point' in your guidance.

really sorry about the long message, need to send the additional evidence soon so any advice would be much appreciated. finding this quite confusing, as trying to explain 5 different conditions some of which are not well known or understood, hence being given training as a parent.

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10 months 2 weeks ago #286342 by Gary
Hi Brenda

Thank you for your question.

We are not assessors or medical professionals, so cannot give a view on what your son will get and at what level. Two people can have identical conditions but be given different awards.

The first question I would ask is have you contacted DWP and ask for a copy of the assessors report called a PA4, you can ask for a copy 48 hrs after the assessment.

The report my alay some of your fears, it will also give you the heads up as to the likely outcome but not all ways as I was speaking to a client a few weeks ago and the HCP scored him (a)'s for every question but he received a text message informing him he had been awarded std for both components.

The benefit of the assessors report is that you can prepare yourself for the worse and put additional evidence together for the next phase the Mandatory Reconsideration. Which hopefully you will not have to go down.

Gary

Nothing on this board constitutes legal advice - always consult a professional about specific problems

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10 months 2 weeks ago #286348 by Brenda
Thanks for your reply Gary. I did ask them for a copy of PA4 report but they said they haven't received it yet and to give them a call next week. I will do that and also send them the evidence I've collected after the call i.e. emails from schools and psychologist with an update on my son's conditions and also the support he received during the exams. Fingers crossed it won't have to go to the next stage as it's an exhausting process. Didn't realise that they text to let you know what you were awarded, that's god to know.

Thanks a lot for your help and advice.

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