EBSA support thread 2

[Luddite26]

Hopefully this links to Brambley Hedges EBSA support thread.
A community to discuss the processes and support each other when children are experiencing Emotionally Based School Avoidance.

How's things this morning @Fedupofthisgame ? Have you had chance to speak to anyone?

Sorry to hear about your dd @Fedupofthisgame - how has she been yesterday and today?

Thanks everyone for advice re hospital school and other alternative provision. I had a conversation with someone at school yesterday who said they are happy to do the MNHES referral but just need me to send over the evidence of medical need, so I have been into the GP this morning and paid for a letter to be written. Frustrating that we have to do that, but needs must. We could have gone down the route of submitting a subject access request to get notes from our appointment last week, but it could take upto 28 days and the letter will be either done today or Monday so I am paying for the quicker option.

It may be that MNHES isn't suitable for her but she is happy to give it a go, so we will. I'm going to keep researching and seeing what else is available regardless, as MNHES is technically a temporary measure (although I know of a few kids who have attended longer-term) and it may not even work out for her anyway.

Hope everyone else has been doing ok this week!

@Leafywool in my humble opinion fwiw is time is of the essence. No point trying with current school right now and having friends already in the MNHES setting is more promising for her to rebuild her confidence.
Don't think of the future ATM just take each day as it comes. How has your DD been this week with the school pressure off a bit?

I agree and I am very glad I didn’t force school with her and dragged it out, and have acted as fast as I can researching and getting things moving. I bet school are sick of me emailing them but I don’t care 😆

Honestly this week is the best she’s been in a long long time. She’s still not really willing to leave the house but she has seemed quite happy and very minimal meltdowns. Night and day difference compared to the start of the year!

That's good @Leafywool . Minimal damage is the hardest because sending kids to school is what we are told is best.

Here's something I have just been thinking about. Children who struggle with attending school can still also get ill. Sometimes it seems like a dichotomy. Either the child is struggling with EBSA or they are ill. It can't be both except that it completely can.

And I am so tired of ringing school absence lines. Anybody else with me on that?

Sounds like a bad day @ISaySteadyOn .

It makes sense to me. These children and YP are working at their full capacity - beyond it, even - just to go to school on a normal day. Any sort of illness is an extra stressor and they just don't have the extra capacity to handle it on top of what they are already handling.

When DS was at his SEN unit they were super understanding of this kind of thing and he would get praised just for noticing he was ill and for telling us. It's hard sometimes holding that in your head alongside knowing that's more learning being missed, especially in GCSE years, when most other parents would be "encouraging resilience" ie packing them off to school. But what I come back to is the fact that ultimately DS stayed in school and sat his exams. I don't think he could have done that if he hadn't been treated with such compassion throughout.

@Leafywool sounds like you are doing brilliantly to have the AP sorted so quickly and find a way forward. I hope the next few weeks bring a bit more calm and, if not certainty, at least less uncertainty.

It's DS refusing today and I am so tired of being endlessly patient, calling schools and feeling so ashamed and embarrassed and stupid because I don't understand why it's so hard to just go to school.
I never did this as a child, but then I felt school was the only thing I was good at. Mine are all solid academically which is why schools want them there but yet they struggle.

First post on this thread. It’s been a long journey over 10 years and I’ll try and abbreviate it:

DC Y10. Long history of school-induced burnout/distress (since early years). Never managed FT school for more than a few weeks. Outside school mostly fine.

Able, motivated, ambitious. School leaves DC so exhausted they can’t manage full days or homework – all non-school time spent recovering. Difficulties escalate fast with fatigue/overload. If pushed to attend FT, DC becomes physically unwell (vomiting/shutdown). Psych suggests very fast cognitive processing → extreme fatigue/nervous system overload. Currently using anti-sickness meds to function.

Home ed works well but DC wants more GCSEs than can realistically be done at home. Adjusted timetable hasn’t led to any gradual return. EHCNA pending but delayed. Considering Section 19 but feels drastic.

DC wants to be in school and succeed, doesn’t dislike school – just finds the whole environment too much.

Any similar experiences or advice?

Taking prescription meds to prevent vomiting and to be able to eat in yr 10. Managing half days more than that and things start declining.

Home ed works well but DC wants more GCSEs than can realistically be done at home. Adjusted timetable hasn’t led to any gradual return. EHCNA pending but delayed. Considering Section 19 but feels drastic.

@Lelivre why do you feel s19 is drastic? Genuine question, I’m not being funny. It doesn’t sound like it is drastic.

When you say EHCNA is delayed, do you mean the LA is in breach of the statutory timescales? What week are you on?

Is it finances that would limit the number of GCSEs DD could do at home if you EHE? If so and you want to EHE, are you already in receipt of DLA for DD? Although I appreciate you may already be spending it on other disability related costs. It isn’t EHE, but if you get an EHCP for DD and it is inappropriate for provision to be made in a school or college, you could look at EOTAS/EOTIS. Among other things, that can fund GCSE/IGCSE exams.

Thanks!
I’ll try to respond to the points

So firstly sec 19. I get the idea this is a rare measure and…School seem to think that this is for severely ill kids and have told my DC that, indicating DC should keep going but things are not progressing well. DC presents extremely well in school engages deeply, participates enthusiastically and at a high level (masking?) only to crash at home.

No disability, has some health issues but school induces the worst of it and we are relying on the EHCNA for the diagnosis (keen for ed psych input).

Yes to finances and HE and GCSE but now we are so late to organise this. It may seem obvious now but we have all been so hopeful about the reduced timetable and we anticipated improvements. Until recently I was sure DC would develop resilience (we have had various interventions alongside the timetable ) but seems further away than ever as is an explanation. DC wants 8, 8’s and pathway to selective college.

Yes DIAS recommend EOTIS next. I don’t really know what to expect (if it’s hard to obtain? How long it takes?)

Yes LA in breach 6 month backlog on ed psych. They have been informed and seemed concerned but could offer no more help aside from LA escalation to inclusion team.

@ISaySteadyOn sorry to hear this. I can relate. I hope tomorrow is better. Mine is off today too but I'm not too worried.

@Lelivre hi. Why would they be able to do more GCSEs at school? What's the blocker to doing as many at home? It sounds like they could be a good candidate for online school.

Some GCSEs can be got through with a tutor in not many hours a week, especially with a motivated student. DS did up to an hour a week in one subject, skipped some weeks, never managed a scrap of homework or independent revision and got a 9. But, that ability to work independently is golden if you are able to keep that going.

@Lelivre section 19 provision is for any compulsory school age pupil who is unable to attend school full time and wouldn’t otherwise receive a suitable full-time education. It isn’t rare and isn’t only for severely ill DC.

If the LA is in breach of the statutory timescales and conversations with them are getting you nowhere, you need a pre-action letter. Then, if that doesn’t work, JR proceedings will.

Many have to appeal for a comprehensive EOTAS/EOTIS package. If you do have to appeal, you can request an expedited hearing.

Just so you are aware, be careful with DIAS. Some are good but too many repeat the LA’s unlawful policies.

You don’t need a diagnosis to apply for DLA. I would apply if I were you.

Mostly EHNCAs focus on needs/provision/outcomes rather than diagnostic assessments.

I understand sitting lots of GCSE/IGCSEs when EHEing being prohibitively expensive. Not cheap. There are routes if DD/you don’t want to EHE though.

Some great advice. I should have come to you before! Thank you.

Im now thinking some undiagnosed ND that would require some experience and expertise to ascertain because we’ve had three clinicians run through the criteria informally and discount it. I am also hoping for the WISC-IVUK as part of the EHCNA, am I being realistic?

Also would a notice of action letter bring her up the list, because she’s at the end of her schooling that would be okay, right?

A comprehensive EP assessment would include cognitive testing, including WISC-V (where appropriate). However, many LA EP assessments are poor and do not include any cognitive testing.

I think it would be wise to consider ASD and ADHD assessments. Who were the HCPs that discounted them? Full ASD and ADHD diagnostic testing is unlikely during an EHCNA, I’m afraid.

A pre-action letter often, but not always, prompts action from the LA. It isn’t about being Y10. It is about the statutory timescales.

Thank you.
Today we requested they initiate Sec 19 (agreed) and continuation of annexe R (further reduced) is also agreed - whilst EHCNA delays.
If full WISC isn’t included we will look to fund privately.
Thanks for all the advice so far.

How do you all manage your morale as parents?

@ISaySteadyOn awful time going through that process. And being threatened with fines. If I was going through it again I would feel more assertive and less alone.
There are lots of good podcasts for reassurance when you are feeling isolated.

@Lelivre sorry for late posting been hectic and only just seen your posts. I'm glad you have had some good support on here. Don't feel alone.
The only advice I can say is there is a very informative EHCP thread on Mumsnet and the help is amazing if you need to ask anything there
EHCP support thread number 5
Is the current one. The replies you will get are second to none.

Morning everyone and thank you for your support with my DD. I haven't posted for a while because it just got on top and when it started sorting itself out a bit I was so ill. I think the stress just kind of left my body and I gave up for a bit.

Anyway DD is now back in school. I found the school supportive. It was hard because the softly softly approach didn't work for her. We ended up giving her the hard the truths about the end result for us with school refusal. She's going everyday and apart from the usual moaning she's going in. I will take all I can get for now. She is still a very grumpy pre teen. I hope she will grow out of this.

That's great to hear @Fedupofthisgame. Glad school have been supportive too.
I am sorry that you have been so unwell too. It is a nightmare. I hope you can have some normality back now and in the coming weeks. Whatever it takes just keep going.
Or as Churchill said
When going through hell keep going!

Thanks for all of the input here, it’s been very encouraging to me as I’ve felt somewhat depleted and defeated. Also your guidance has nudged me forward on a DLA application and sec19. Annexe R is extended and now on 50% a day 50% home study. Baseline health improving. Unknowns still around the causes of the issues she has experienced over her school life across several settings. EHCNA delayed. Clinical investigation ongoing.

Sec 19 initiated now. Any suggestions around what to ask for with Sec 19 she just needs supported home study. She’s currently managing with books and YouTube and in year 10 and wants top grades for her next steps. I don’t know what’s out there. I’ve been asked to make suggestions.

@Fedupofthisgame Glad to hear she’s back in. Sometimes it’s hard to know what approach is best to take, and what would work for the child. I’m sorry you felt so ill - I totally get it! I was so stressed at the start of Jan and felt so unwell too. Hopefully things will keep improving for you all 😃

I’ve just had a really awful interaction with a member of staff from dd school. They have been doing a welfare check every 5 days, which I understand the need for, and she is usually very friendly with a quick hello and asking how dd is. Today the tone was completely different - asking if she is doing work at home and being very accusatory about the fact dd isn’t completing her online homework. I actually burst into tears when I closed the door as I felt so awful. She was really not very nice about it at all, saying dd might not get a place at MNHES then what are we going to do? Saying she’s going to massively fall behind and she’s seen kids who are a year behind because their parents took a too soft approach. I tried to explain repeatedly just how unwell she has been and why I have taken the pressure off but she didn’t seem to give a shit. I am raging about it. I don’t understand why they have suddenly switched on us?

@Lelivre section 19 provision comes in many, many forms. It depends on DD’s needs and where you live. It must be suitable. For example, it may be home tuition, online tuition or online schooling, tuition (either 1:1 or small group) in the community or at a centre the LA uses, (F2F or online) mentoring, an AP setting such as a care farm, forest school, outwards bounds AP, gaming AP…

@Leafywool it is irrelevant whether DD gets a place at MNHES. The LA will still have a duty to ensure she receives a suitable full-time education. You can push back on the welfare checks.

@2x4greenbrick You are right, and I am furious that she kept saying that because my dd was right there and there’s absolutely no reason why they wouldn’t accept her. Dd is so worried after everything this woman said and keeps asking what if she can’t get the help she needs.

Do I have the right to not allow them to come and see her at home? I am more than happy to take her into reception at school once a week if I have to.

The member of staff said I should be getting her up and dressed every day and ‘she needs structure’ even though she absolutely does not know my child at all beyond saying hello at the door to her maybe three times. Even getting her to leave her room and come downstairs is a huge positive at the moment so I’m not going to force her to get ‘properly dressed’ and sit and do maths homework which she hasn’t even been taught.