For those of you who have children with EBSA/school anxiety.

[SupportingEBSA]

I support families who have children struggling to access school due to SEMH. I am on a bit of a side mission to try and develop better support for families going through this.

If you have experience of this yourself, what support do you wish had been out there to support you and your family. Did you have access to support groups? Did the school provide any additional support? What was done well/what was done poorly?

Any support would would be good to be honest.

I’m 10 months down the line and my child is a hot potato have every agency I ask,and it’s me asking and often being rejected, just passes my child off to another agency, often an unsuitable one.

What I have needes most is support with SEN law and complaints because agencies have just not been fufilling their role.

Support for families would be nice, including young carers, but the biggest thing that would help would be schools following their own policies, listening to their own EP, councils fufling their statutory requirements and camhs not saying we have lots of children in your child’s situation and we don’t have any plans or way to help them but hopefully in a few years we will and here are some links to websites and ofd you go.

CAMHS rejected my child for support because I took the initiative to pay for private counselling. My priority was making sure she didn't kill herself while she waited for the extremely long CAMHS waiting list. They told me they wouldn't accept her because she was getting support elsewhere. I asked them to put her on the waiting list and told them the private sessions would be done with in 12 months by the time they get to her, but they didn't want to know.

Private support shouldn't block kids from going on the waiting list for other support. Especially when my funds are limited and won't last forever. They seriously expected her to go without help for 12 months when she was psychologically disturbed and threatening suicide. Unbelievable.

A really simple practical, maybe diagram based info pack on what all the acronyms mean, what's IPSEA, SENDIASS, EOTAS etc. What are the different pathways? I'm very well educated, a teacher ironically and until my dd developed EBSA I had no.idea about any of it. Then I felt extremely overwhelmed and unable to advocate effectively for her. I can't imagine how Impossible it might feel for people who are not used to dealing with a lot of formality and legal terms.

Massive school anxiety, no school refusal (yet) because she isn't aware that it's an option. School don't see anything because 'she is fine in school'

schools need a lot of training around autism especially in girls. Now that school have to do the Neurodiversity toolkit before you can get onto diagnosis waitlist they hold even more power.

dd needs support around anxiety, social interaction and perfectionism. The actually education bit she is excelling which feeds back into she is fine in school narrative.

We had no help. School offered a waiting list for counselling, or for my child to come and sit in the isolation room with children being punished for poor behaviour.
mine is mostly back at school because we we paid for counselling, and we were lucky to encounter a teacher who took her under her wing.
Biggest issues:
no support
Constantly told this is my child issue, ignoring all the school issues
assumption child must be choosing to be off school because no ND.
Extra support and adaptions only available if ND diagnosis
child scared of getting into trouble / refused access to medical room
obsession with uniform inspections - fear of getting it wrong
pastoral support with no psychological qualifications, so no awareness of how to offer proper help
no guidance about what might help e.g. friendships outside school, maintaining a routine for days out of school, parental support
child not seen in lessons as quiet, so assumed no one cared
no support at yr 7 transition despite it being asked for by primary

what did work
one teacher making a huge personal effort and another a slightly smaller but very welcome effort
hth!

Oh and we had no idea how to access help to start with

Sadly, none of this surprises me. There is a severe lack of support to school staff when it comes to supporting/being more aware of this. Relationships normally break down completely before it is flagged for support.

I was told by an attendance officer that my child was way down their list to worry about. Ridiculous, as it was at a point where some help would have prevented most of the issues.
I know this is partly a resources issue, but I do question use of them. There was a large team of support available to Ukrainian refugees (who I know needed it) but no one available to meet my child / check in with them when I asked.

I'd just like school to reply to my bloody emails or to have actually put things in place when they said they would before things escalated.

Practically, it would be helpful to have an idiots guide to what school should be doing, what other organisations should be doing and who to contact when.

As a moan, it would have been nice if they'd told me in October they need a GP letter to confirm why he is off and to mark absences as I rather than O. I could have sorted that easily and avoided the threatening letters. It would also help if they had provided any education at all (access to work at home) in the months DS has been off.

Realistically, I'm probably going to have to EHE and pay for online school. Which I don't really want to do and will have to manage around full time work. But he needs access to an education (and is very willing to work / learn - just can't walk into the school building any more).

Dropping all the parent blaming would be a massive start as it really is just kicking someone when they’re down.

Have you looked into section 19 request?

I've asked school about alternative provision for over a year, first they said they needed to do their own EBSA work (which they managed 2 session of, one in July one in Nov) now they have said they'll discuss it but were suggesting an alternative school (which is unlikely to work and depending on the place would be worse) and when I mentioned online provision said they'd never done this so didn't know how it would work and they're very clear it would need to be with a reengagement plan, which they don't currently have at all...

It's my current option, I'd prefer the LA to provide the education he's entitled to but I have 0 confidence it will happen, so I'm giving it until summer term and then will look to enrol for online EHE.

Apologies, not wanting this to become a whinge about my specific situation!

The school need to provide a suitable education while the child is on their roll and that includes provided support to access education at home while the child is unable to attend. Reasonable adjustments must be put in place. SEN support should be considered. A referral to CAMHS and the school nurse should be made. You need to build up a picture to show that the child is unable to access school, if the school are saying that they cannot meet your child’s needs, they must make a medical referral under Section 19 of the education act to the Local Authority. Professional support really helps here so go to the GP and ask for a letter.

Thank you, he has been under CAMHs previously but is now on the wait list for one of our local VCSE therapy providers. I have got a GP letter stating inability to attend is due to ASD + Anxiety, I just wish they'd requested it months ago!

To add: they have also now said they'll do a TAS but that won't be for another month and nothing in place in the interim!

The school need to make a medical referral. You have evidence that your child is unable to attend school. Therefore the duty falls to the LA to provide a suitable education.

No support or help. School just said I had to force her in and that everytime she didn’t come in I was making it too easy for her. It was so traumatic and I know now that forcing her in when she was so distressed was the worst thing to do and I will always feel guilty for it.
Eventually had an autism diagnosis and the school said she didn’t need any adjustments when she clearly did. I pulled her out and left my job and now home educate which has been the best thing for her mental health and she is doing really well.
My mental health has suffered as well as my income and I am still so angry 2 years on about the total lack of support and understanding.

Sadly, no, it's very believable.

Can you tell me more about your second paragraph please as I'm not sure I knew about this

(My child might have additional needs)

@purpleme12 https://parentcarerscornwall.org.uk/neurodiversity-profiling-tool/

this is from an organisation in my area explaining it. (I assume it’s nationwide but I don’t actually know cos I’m focused on my area) It is supposed to identify needs and put support in place at an earlier stage. From my point of view it just puts another massive hurdle in front of the diagnosis pathway to delay and make parents give up. There is no spare capacity in mainstream schools to help and support. Why are schools going to put anything on paper that gives parents a leg to stand on unless their child is so disruptive that they have no choice. The victims in this is children with asd that aren’t a danger to themselves or others (yes I’ve had that said to me recently my child with diagnosed asd isn’t a danger to anyone!)

I don’t blame the school because they are really trying but they can generate extra budget and can only stretch the current budget so far.

https://www.ipsea.org.uk/asking-the-local-authority-to-arrange-alternative-education-model-letter-22

You can download template letter to request section 19. I was advised by a SEND advocate to go straight to LA because schools are often confused by section 19 requests.

I'm wondering if this is what my school was talking about
I did speak to school about how I would like her referred for ADHD. They said they'd put out a round robin thing to teachers to see what they say if anything but if there wasn't enough evidence they couldn't really do it. She does not show outward signs at school though so I'm skeptical what will come out of this. They said they'd also speak to my child and see what she finds hard about school etc and then see if they can put anything in place and see how that works.

There is lots of theoretical help, as you have listed. However in reality, our GP won't even speak on the phone to me about my son's mental health issues, they just say do a parent referral to CAMHS. The school won't provide work to do at home and the LEA have said they won't make them. The LEA say they have no legal duty to provide education as my son is on roll at a school and they will fund 1 hour per week of attendance outreach support in school. If he could access it, which he can't. The Section 19 team won't reply to emails and can't be contacted by phone so the only option is a SAR and a formal complaint which will take months. Multiple times we've been referred to parenting classes relative to his specific SEN, all of which have been defunded and are not now running. The waiting list for an Autism assessment is at least 3 years, the ICB has defunded the RTC route, and at this point having a diagnosis won't really help anyway. A decision is due on his EHCP assessment today. I don't think they will grant an ECHP and I don't think I will get a decision today. My son hasn't been in school more than a few days this academic year, and hasn't been to a single class since early October, and its an escalation of existing difficulties which I made the school aware of before he started.

So yes theoretically lots of people should be doing lots of things but the reality is there is little to nothing. The nicer professionals express a lot of sympathy but tell me in various ways it's not their job to help.

The school and the LEA are just focused on protecting their limited budgets, and delaying support and forcing parents to go through multiple stages of complaints etc delays them having to spend money and makes it more likely parents will give up and deregister which saves them money long term too.

Meanwhile we have to decide whether both parents keep working, meaning it's a struggle to help and having a negative impact on his recovery short term but we are financially OK. Or one of us gives up work, which helps in the short term but we then can't fund private therapy or tutoring.

I don't think the help they'll give (if it happens at all) will be what she needs or what it should be

Mainly cos it's all towards me all of it.

They didn't seem very forthcoming on ELSA or when I mentioned things she'd had at primary

I just wish there was more appreciation of the fact that it is not a lifestyle choice or something that you could just be a tough parent and sort out. My child without SEN has 100% attendance. It’s not a parenting failure. I wish there weren’t letters from school about taking action because the attendance is low when they already know that we’re doing our best. I wish there was more guidance or a roadmap about the options for getting some education for your child if they can’t manage a mainstream setting. I wish mainstream schools would appreciate that just because a child isn’t flipping tables or threatening staff. It doesn’t mean they are coping in school. It feels like if the school can’t manage the child then it’s the school’s problem, but if the child can’t manage the school, it’s your problem Sorry that was a rant!

But this is the biggest issue, just because the LEA are legally responsible for doing things that doesn’t mean it happens.