Petition: Create a virtual school for children too unwell to attend school

Not directly an ME petition but one certainly very relevant to those children with severe ME.

https://www.change.org/p/secretary-...form-for-children-too-unwell-to-attend-school

ETA: I'm not the creator of the petition, I stumbled across it on social media. Just wanted to clarify that.

 

This is a fantastic idea. I hope they have an effective campaign as well, not just a petition.

My daughter missed her final year of school due to illness and also had no special help for exams - she either turned up or didnt. I had severe M.E hthen and couldnt drive her to school fr exams, social services refused to help, they said she would have to go on the school bus and be in school all day. it was a disgusting situation and has impacted on her life since.

 

1,082 signatures.

 

TYMES Trust have worked with nisai to provide virtual classrooms see http://www.tymestrust.org/pdfs/succeedingwithme.pdf.
I was at a TYMES meeting in 2014, where they presented awards to several youngsters who had gained qualifications in this way. It included a girl from a small Channel Island (possibly Sark) who had got several GCSEs this way rather than having to board on a larger island. There are virtual lessons at specified times, but these can be viewed later.

The main emphasis of this meeting that I remember, was that youngsters who had been unable to access education at school due to a medical condition could get funding. Again from memory, this funding (presumably LEA), would be available until age 23/5?

I am sure a deeper trawl of the TYMES website or contacting Nisai would provide more info.

It sounded like a great idea, but sadly my daughter's cognitive function has not been up to Maths A level standard since summer 2014.

 

There's also the awesome "no isolation" robot that IiME tries to utilize for children with ME.

http://www.investinme.org/IIMER-Newslet-1711-02.shtml

 

Something like this has been around in Belgium for over ten years. It seems to be pretty successful. Children can follow classes in real time online, with live interaction, so they remain in touch with their classmates and teachers. Exams and homework are done online. (I'm not sure if any young ME patients have taken part in this. It says 'for every child with a chronic or long term illness', so it should apply to them as well.)
https://www.bednet.be/bednet-english

 

There is Nasai who run online lessons in the UK and have been used by some children with ME. They do live lessons and also record them in case the children can't make the lesson. But they are private and expensive. There are also on-line tutoring services for 1-1 tutoring. Both these options seem better that the limited options provided by local authorities which consist of occasional home tutors.

What is really needed is some good state on-line education. A few years ago there was a 'free school' bill that allowed parents to organize their own schools and get state funding. But that didn't cover on-line education.

 

Nissai is a good option. They " get" ME. ( They have a part time primary teacher who has it). I' ve met with founder and their development officer with tymes trust to try and get this option into scotland. Aiming to get a pilot centrally funded over a number if councils .

Here, over my local 3 councils, absence of 80% or more ( potential social work trigger), runs at 10-13% for secondary education.(FOIs are wonderful things as schools are good at presenting attendance , not absence) A few ill children in school can keep attendance overall at 96% , but looking at absences provides a more accurate picture. My council are now crunching numbers to determine those with illnesses who could benefit from help to help make a case.
I have recently developed a skill in " raising concerns"

Some kids don' t want to be in school but are made to ( child benefit stops at 16 if you don' t do 16 hrs week education), but many kids have mental health issues or illnesses, and are effectively being written off by a system that is not flexible enough, mainly due to defined outcome parameters, and the processes geared to delivering these.

Virtual lessons at Nissai are live with children responding via private message/ class message or via mic. If child is too ill they can catch up with recorded lesson and " attendance" is logged. There is a wider forum for friendships and non academic stuff - photography / art/ writing competitions to try and bolster social skills too. For ME this is ideal.

There are a lot of online providers and they have been around for 10 or so years.
The fragmentation of education in England has seen some providers run bases in schools.

In Scotland we have problems with a different curriculum and required teaching qualifications. I can't believe that when the " curriculum for excellence" came into being, that there was not at least a centralised online syllabus with ideal exercises etc that could be downloadable ( like Moodle in further education). With a widely spread rural population it would only seem sensible - but as we know sense rarely comes into things.

I now at least have acknowledgement that GCSEs are better than nothing, and it may be that some funding will be made available when my daughter is able to engage.

For something that should be easy, it is incredibly difficult- lots of disparate boxes to join together.

Petitions, such as this are a good way of raising awareness.
Most people think that lessons are sent home and work marked .
Home tutors here are for a couple of subjects for up to 4 hrs/ week. If your child has a fluctuating illness there is huge pressure to " use this resource" - often it is at the wrong time/ inability to engage a few times puts pressure on it being withdrawn as there us much demand and little funding.
For those partly in school anxiety is heightened when it us impossible to keep up.

Noone wants to look forward to potentially a life on benefits - sadly little is being done to enable potential to be realised.

I hope everyone signs

 

I think the Chad (child health and disabilities) social work team have funding up to 23 or 25 and can fund some education they did fund some online tutoring for my child. But it was impossible to get anything from the schools or LEA prior to that even when the had committed to on-line education being the right option.

 

That is what Bednet is in Belgium, it's part of the official educational system. Free of charge.

 

Here is a qualitative study on the communication robot AV1 and young ME-patients. Interesting read.
A robot-avatar: Easier access to education and reduction in isolation?

 

Do you have any links for this. There is more chance of scottish government looking to europe than England!

 

@Amw66 See my previous post!
https://www.s4me.info/threads/petit...-too-unwell-to-attend-school.2011/#post-36292

 

Thanks !!

 

The only thing I would want to add to this is that it would be wrong if the government took it over and then started to increase the expectations placed on these kids. The truth is that qualifications can be picked up later: education is a state of mind, not a bum on a seat in a school. Schools are ridiculously inefficient at providing what most people think of as "education" - it's amazing how little time someone needs to catch up. What they do well is to integrate youngsters into complex society, and it's that part that youngsters with ME really miss.

 

2,927 signatures - https://www.change.org/p/secretary-...form-for-children-too-unwell-to-attend-school if you haven't signed yet.