The end of placement 5.

Last Friday, I had to go and pick up Charlie’s belongings from his last placement. I was devastated, I really wanted this placement to work. That’s why I went to tribunal, so we could get the very best in education that life and our LA could offer. And is, it really is the very best for our local area. But, the school trauma runs deep. His challenges with education is far more complex than I could ever have imagined, and no one could of anticipated that this placement would not work.

But onto the next! As sad as it was to leave the independent specialist school behind, we are onto a new placement, a new challenge and a new way of educating Charlie and of course advocating. We are in new territory here, I thought SEN schools were new territory, this is like nothing I have ever faced before and I will be making sure I skill myself up as much as possible in order to support Charlie the best I can.

We are very close to finalising Charlie’s EHCP to include EOTAS, and I told Charlie yesterday that he was going to have a private tutor and he was so happy. He is over the moon to know that he will spend his days with me and have a tutor to support him with the more important topics. I just wish that they would hurry up. I can opened a new bank account with a separate bank, in order to receive the direct payment that we will need to finance Charlie’s new plan. There is so much to learn about this, I will have to keep the money separate (hence a separate account) I will have to keep receipts and invoices, a track of the money we spend and evidence how it all supports Charlie’s way of learning and development. It is a new way of education, a new way of learning, a new way of advocating.

Let’s hope placement 6 works!

Georgina x

A little refocus.

I have recently had the joy of being away for the weekend. It was my first full weekend away from home in 3 years. I have previously spent the odd night away. And a lot of the time I have taken a child of the household with me. However, this time, I was away all weekend Friday - Sunday overseas (Dublin) and this was the first time since July 2019. The time away has given me a chance to refocus and recharge and make sure I can support Charlie and his siblings to the best of my abilities.

Previous to the weekend, everything was so stagnant. Our plan for EOTAS (Education Other Than At School) had been stagnant for months, there was no clear plan or direction and I was starting to feel deflated and lost. I will admit, I had lost the fight. The ability to keep going and keep battling on to get Charlie’s education and mental health organised. For a long time now we have known that Charlie need medication to balance the chemistry in his brain in order to support him better so that he is able to do the things that everyone can. If Charlie was over 18, he could walk into any Doctor’s office and say, he is depressed and suffers from anxiety and he would receive that life changing medication. Because he is a child it has been kept from him. Those above us in positions of power, gatekeep this from us. Charlie tells me on a daily basis sometimes that he wants to die, hates life, wishes he was never born and is scared to leave the house. Why are these statements ignored? They wouldn’t be ignored in an adult. Maybe an adult would struggle to get support straight away due to the underfunded services, but they wouldn’t be ignored.

So for now, I have have picked up my phone - dashed off the emails that needed and drew the battle lines . I have begun to fight back and start trying to mend this impossible situation I see us in. I have written emails to the LA, school and the specialist community advisor. I did this on Monday, it is now Thursday and both school and community advisor have responded to say they will “chase” things up. But as of yet, no response from the LA. Our draft plan after annual review came out in October 2021, I refused it as Charlie was no longer attending and it was clearly established that he would not return because primarily he wants to be at home with me. This is the only place he feels safe, and unless he feels safe and secure he will not be able to learn. This is an issue of course. It will be April tomorrow and Charlie’s EHCP is still sat in draft, having been refused and there has been no progress in ensuring that the therapies in the plan are delivered and accessed by Charlie. Let me reiterate. It’s been 6 months since I refused to agree to the draft plan. After an annual review 11 months ago. It really is despicable that it has taken this long to get this far.

As always I will update with any progress but the lines have been drawn and we are now battling through to the next stage. Charlie will be entering Year 6 in 5 months and his academic abilities are still classed as reception. The level of things he can not do academically is stark, however, cognitively he can do it all. But in this life you have to walk the walk, not talk the talk. So that will not benefit Charlie.

Eotas here we come.

It’s no surprise that Charlie is struggling with school again, and in this holiday I’ve seen a positive change in him, with no school based anxiety. It’s nice to have my happy caring Charlie back and I love to see that. I have had a couple of opportunities to discuss school with him and he has got very withdrawn and become selectively mute and refusing to speak to me regarding school. When I did finally get him to open up about school he became very distressed and did not want to go back, he was very scared at the prospect. Deep down that’s all anxiety is, fear. Fear of the unknown, fear of the known and fear of what may become.

So now I have started to delve deeper into the realms of EOTAS. The letters stand for Education Other Than At School and that is exactly what it will be. Education that is delivered by the LA, provided by the LA, but not in an educational setting such as a school environment. I have included an article detailing the process below:

Education outside of school | Department of Education (education-ni.gov.uk)

Guidance for education otherwise than at school | Department of Education (education-ni.gov.uk)

Unfortunately our LA has not had much dealings with EOTAS so are not quite equipped to handle the process. This now means I will have to research all elements of education required, dissect the EHCP to address the outcomes and fit it in the plan for EOTAS and work out all the costings. As we all know, it’s always about budget. And I will have to prove that Charlie’s EOTAS plan will not only meet the outcomes but cost less than his current placement. Once again, more life admin that takes me away from my primary role as mother! And just intensifies the fact that working for an employer is so difficult whilst juggling these demands and trying to balance Charlie’s needs with life. It is not compatible.

I have another exciting project in the pipeline! I can’t wait to share it with you all. Fingers crossed I will be able to get it organised by the beginning of September and before the children go back to school and when meetings ect will resume. It will be a lit of hard work but if it means that I will be able to work from home more then it will definitely be worth it. The aim will always be to get an income that is sustainable and financially viable that works around the children and means my only demand is from the children’s lives. That would be a dream and I hope I achieve it.

For now though, EOTAS planning will take up the majority of my time as I need it to be built and in place before the next annual review and hopefully we will not need to go to tribunal court, however, I am fully prepared for that battle this time around.

Stay well all.

Georgina x

EHCP Annual Review is underway.

Last Wednesday we had the EHCP annual review. For those of you that don’t know the annual review takes place every 12 months unless there is cause to bring it forward to an emergency annual review. Since Charlie’s EHCP was finalised in July 2017 we have had two emergency annual reviews both of which was for the purpose of the placement ending.

On an annual review the LA can keep, change or cease an EHCP so pretty important stuff really. And it is there to enable the child to get the full potential out of the placement. This review though was the confirmation review. This is what happens 12 weeks after an independent specialist placement has began and Charlie should of had this review in December. However, he was not attending AT ALL in December (for those of you that have been following us for a while). So it was moved to February, but… Charlie had just moved class and had just done his first full time week. I didn’t want to pre empty the review by having it with not enough evidence. And he hadn’t been at school consistently enough to know how he would manage after a school holiday. So it was moved to 12th May instead. Overdue, but, it would mean we would have the right level of engagement and evidence to prove the school was working.

A confirmation review and paperwork like Charlie’s 12 weeks on, gives the LA the opportunity to see if the school is working and if their money is being “well spent”. If we had of had it in December, there would of been the possibility that the LA could terminate the funding as placement wasn’t working. And I’m sure there probably will of been instances that families will have had that experience. But, this is me! And I advocate hard. And I absolutely would not have let that happen. We would of gone back to court without a doubt.

This is not the end, we haven’t just had the review and case closed Charlie gets another 12 months of funded placement. There are changes to be made, recommendations by the OT. More OT provision to be introduced, and some assessments that the school will do to help with his writing and learning.

These changes have got to be done in 10 days. (I’m unsure if it’s 10 working days or just 10 days). Then it is sent to me to agree, then the LA to agree then a new version of the EHCP is produced. This will then be version 8. And then that is it for another 12 months unless something drastic happens!!! But let’s not think negatively.

Will definitely update you all when the new EHCP is finalised, yet again.

Georgina x