school refusal and extreme ocd

[pinkw77]

I am desperate for some help and advice please! I have a child who is meant to be starting year 9 and at the end of last term just refused school,she is on the waiting list for an autism assessment,and goes to cahms because of extreme ocd.
she has sufferred with ocd behaviour since starting secondary school,she is now at the point that she never leaves her room,has meltdowns over germs,she scrubs herself so badly and washes her hands so many times a day,she refuses to go anywhere and has never had a friend visit and refuses to see people as she is so scared of being infected with germs,its very diffiult and sad to watch her struggle and the cbt therapy she has been receiving is not helping.
I have bought uniform this week hoping she would go back in to school next week but she refuses to try the uniform on as she thinks the clothes are going to infect her because they have been in a "germy"shop.
I feel I need to home educate and try this year to get her well again without the pressure of school,she is very willing to learn,my question is if I de register her then all learning is on me,or can i say to the school she wont come in as she is unwell and will they have to provide some online learning or will they just demand she comes in and start to fine me for her attendance?
I would really like to know if anyone else has been in a similar position to get some help and advice please.

DD3 is similar in terms of her OCD symptoms, but not so extreme, and they are starting to fade now that she hasn't been in school since November 2023. She is going into year 11. We applied for an EHCP for her and she has been offered a place in a specialist school.

I recommend that you don't deregister her. Report her as 'sick' on the basis of her mental health. Ask for the Local Authority to put in place Section 19 provision (they have a legal duty to ensure education if a child has, or will have, missed school for 15 days). Apply for an Education Health and Care Needs Assessment (you'll have to look at your Local Authority website to find out how). Do it today, because the EHCP process takes 20 weeks.

The minute you deregister, you are responsible for her education. If you report her absent from school, they are still responsible.

Read up thoroughly on Home Ed - there are excellent guides on the HEFA Facebook group. Don't deregister unless you know exactly what you are taking on! And be guided by your daughter too - learn about it together maybe. She may choose a gradual return if one is on offer.

Having said that, when my son had PTSD earlier this year and the school refused to support him (despite GP letters...etc), deregistering took a whole big layer of stress off our family, not just him. With the expectation of school removed, we ALL relaxed, and he recovered much faster.

There are days when I think "OMG what have we done??!!" but many schools are very toxic environments for kids who are sensitive to the stress of thousands of kids, academic pressure and endless rules/punishments. I know we did the right thing for my son's MH.

This. Don’t deregister. If DD is unable to attend school, the LA is ultimately responsible for ensuring DD still receives a suitable, full-time education. Request s19 provision and request an EHCNA. IPSEA has models letter you can use. For s.19 provision, the 15 days don’t have to be consecutive and provision should start by the sixth day.

An EHCP can also provide therapeutic support DD wouldn’t otherwise receive or wouldn’t receive without sitting on a very long waiting list.

Thank you for the replies,I really appreciate all the advice,its such a stress on our family and so hard to know what to do for the best in terms of going to school.
It seems most people just think because the 6 weeks holidays are over she should have had "enough time to get over her ocd" and that she needs to face school as thats life and she needs to get on with things that are difficult in life!!
I disagree with this and I feel she is in such a bad way that she needs time to get better and school is making her so much worse,I am so sick of judgement from family friends and the school who think they know best but do not live with this condition and really have no idea what its like!

She may well need time, but that doesn't mean you have to deregister her. I reported DD3 'sick' from November 2023-April 2024. Then the assistant head agreed that I didn't need to phone in every single day because it was clear that DD3 couldn't return to the school. She still remains on roll there, and her new school will take over in September.

Her new school is a specialist provision. They will gradually gain her trust. She will have a bespoke timetable. They are doing activities for the first 6 weeks but they've adapted them around her fear of germs and a particular need to be near to certain facilities.

It has taken months for her anxieties to ease enough to contemplate a new school.

Ok so your local education authority (LEA) has a duty to pick up on children who are NEET (Not in Education or Training). Let the school know your child is not able to attend school and ask for support. They should be able to put you in touch with someone in the LEA who works with families who home educate. The LEA should be able to advise on what you could be doing, how to get in contact with other home educating families etc. You don't have to "follow the curriculum as such" but there will be people who can advise you and give you help if you want it. They will also check that she is not just being neglected e.g. spending large chunks of the day alone.

Her school aren't obliged to provide learning materials/guidance/online options if she it not attending but the LEA is meant to provide support. Also be aware, that it is perfectly ok for you not to be teaching her like she would learn in school, provided you are providing education of some kind. I don't know if there is anything your daughter would cope with, but it is also perfectly acceptable to do learning through an activity, it doesn't have to be what she would learn in school. My dad was a Special Education Needs Advisor for years and worked with quite a number of families who were home educating. If you are struggling there might be some specialist provision she could access, but the LEA would help you with this.

Have you looked at the possibility of this condition panspandasuk.org/what-are-pans-and-pandas/

The LA does not have to provide alternative provision if OP electively home educates. If OP EHE, the LA is likely to say she is making suitable alternative arrangements thereby they are relieved of their duty to provide section 19 provision.

OP’s DD is not NEET.

If the LA can't see OPs daughter in their education records then she is NEET according to them, so they have a duty to follow up what is going on. When they make contact, they can then check what HE is happening and whether the family is on board with HE. They can then record her as HE not NEET and offer any support that seems to be wanted or needed. If the HE seemed to have broken down, they could then say she was NEET needing other alternative provision. More likely though, they would say she isn't NEET, but offer any support with Home ED, that OP or daughter wanted.

Again, OP’s DD is not NEET.

You are giving very bad advice. If a child is educationally complex (and @pinkw77's DD will be, by virtue of her OCD and possible ASD) then the very last thing she should be doing is absolving the LA of their duty to secure appropriate full time education for her child.

I know fully well the absolute sheer panic of having a child who can't attend school, when the expectation is that they do. I know how it feels to see their education spiralling into nothingness. I've faced it 9 times over the years. In none of those situations was the solution to let the LA off the hook by saying that I'll home educate her.

Whether my advice or yours is best, largely rests of how good the LAs understanding is of the child's needs and what provision is realistically available. Generally LAs will not mess with kids who they see are being well home educated, which yes means the parents have to take on the bulk of the education, but it also means that the parent will be allowed to do what is appropriate for the child.

If, the parent isn't openly home educating, then the LA should be actively on the case of finding the child a educational place, which, as you say is good. However if the LA find provision for a NEET child, but then the parents actually research the found provision and think (maybe very rightly) that it isn't really a good fit, they will HAVE to CONVINCE the LA it is unsuitable, otherwise they may be sanctioned for not sending their child to the place provided.

A child who is too ill to go to school is not NEET. A child who is home educated is not NEET. The LA have a duty to support a child who is unable to attend school due to illness.

If a child is unable to attend school and the LA proposes unsuitable section 19 provision, the parents can challenge it because section 19 of The Education Act 1996 requires LAs to ensure CSA DC unable to attend school receive a suitable, full-time education. Parents don't need to be scared by others telling them they will be sanctioned. Section 19 provision is not the same as EHE. The LA retains responsibility. They cannot say “parents are doing fine, we don’t have to provide anything”. That is not how the law works. Parents can force the LA to follow the law. That is realistic and available in every LA in England.

Not to mention NEET is typically only used to describe young people rather than children and OP’s DD is still legally a child. Even if a CSA child was in employment, they would still be entitled to a suitable, full-time education.

This has all got a bit spiky.

In our case, we chose life rather than endless battles. I battled with my first DS. A fight for the EHCP, a fight to get what was described in the EHCP. Then eventually a fight to get him to school, then to find another school, now to get MH mentoring….etc. He is still “in the system” and his provision has been 1.5hr per week, with nothing in place for September (next week!) even after all those battles. They won’t call him “NEET” because he gets the 1.5hr. It’s insane.

It was all very exhausting. I am really good at being diplomatic, finding allies, reading up on the law, crafting letters, emails and complaints. But years of “fighting” has damaged us all.

With my second DS (14) and his MH, and home ed, it has been about acceptance. Not fighting for “professional” help or special provision that he doesn’t even want, and school outright refused to provide. I could have started fighting again…. I had a lot of evidence stacked against the school and their poor treatment of him. And If he wanted to do GCSEs, go to uni, persue a particular career, I would have done everything possible to get him along that path, but he doesn’t. He can change his mind on that in years to come if he wants.

We home ed and he is recovering. I would even say he is well. This wouldn’t be the case if he was returning to school next week.

MH is much more important than school and exams. School is a social construct, not a necessity. You don’t have to be in a school in order to learn. Schools can be very stressful, unpredictable and controlling environments. Sometimes the “specialist” schools can be even worse than mainstream (or they can be much better, it seems to be pot-luck). I enjoyed school very much, but my sons do not.

Life is very short and, as a family, we have chosen to spend every day 100% living it, not reading up about our rights, having meetings and fighting Local Authorities. It’s all a choice, unique to each family, and there are no rights or wrongs.

No-one has said DC have to be in school in order to learn. There are other options where the LA still retains responsibility. There is a rapidly growing number of DC with EOTAS/EOTIS.

The benefit of pursuing at EHCP rather than EHE is an EHCP (via EOTAS/EOTIS if necessary) can provide far more than the vast majority of parents can afford to fund EHEing. That is not a criticism of parents who EHE, more a statement of what an EHCP can include. Although, yes, parents may have to appeal. It is brilliant for those parents who can afford to fund all of the provision needed. The majority cannot.

It isn’t just about academics. No-one has said that. It is about MH. EHCPs can include much more support than DC would otherwise receive and can be well beyond what most parents can afford to fund.

If anyone is in the same situation as Mumofteens4892 and wants to pursue support further, if DC are CSA, parents can email the DCS threatening JR for failure to provide a suitable, full-time education under section 19 of the Education Act 1996. Also, for those with an EHCP, if there is anything detailed, specified and quantified in F that isn’t being provided, threaten JR for breach of section 42 of the Children And Families Act 2014. If that doesn’t work, look at a pre-action letter. Alongside this, parents can appeal to SENDIST when they next have the right of appeal. And can request an early review in to try to get the right of appeal.

Of course it is a choice, but parents should make that choice aware of all the possibilities and the actual law.

Sorry to hear about your DD's problems.

Have you tried medication for the OCD? My DD started Prozac at a similar age and while it doesn't remove the OCD, it dials it down a bit to the point where her obsessions became a bit more manageable - eg her hand washing now takes 10 mins rather than 20.

Would she wear the uniform if you wash it with antibac first? I suppose then you couldn't take it back...it's tough, you have my sympathy!

What I am saying is I want to live.

Not spend months and years depleting my energy on meetings, emails, reports, complaints, Juducial Reviews and tribunals.

There is a wonderful sense of freedom about being outside of the (very broken) system.

No fighting, no “threatening” anyone with anything. Living, sleeping, cooking, resting, building a business, travelling, breathing.

I’m not saying it’s easy (it isn’t), and I dearly wish that both my sons had sailed through school without a bother, come out qualified and happy. But it wasn’t to be.

As I said, of course that is a choice, but OP needs to make an informed decision and she can’t do that without knowing the law/LAs duties and what is possible.

It is brilliant you can afford the extremely costly therapeutic input required or that your DSs don’t need that. Unfortunately, many do need that and it is well beyond the means of the vast majority of parents.

Many can sleep, live, rest, cook, build a business, travel and breathe and still pursue support. Others wouldn’t be able to do that whether they pursued support or EHE.

Just to add a few points to what others have said:

If you are exploring the two options of pressing the LA to provide suitable education or electively home educating, don't breathe a word to the LA about the idea of EHE. If they think you might be willing to do that, they may realise that all they have to do is drag things out and be obstructive until you let them off the hook by deregistering for EHE.

Many kids end up in EHE after a spell of EOTAS. Often there is an assumption on the LA's part that EOTAS is temporary and the ultimate goal is to get the child back to school. When children pick up on that expectation, it feeds their anxiety. Parents who have deregistered sometimes report that doing so lifted a huge weight from their child. The child's anxiety may immediately improve upon being told that the LA are now out of the picture altogether, and that the parent is done with trying to make the child go to school. To an outsider, EOTAS and EHE may appear similar, but the two can be experienced quite differently.

Many kids end up in EHE after a spell of EOTAS.

Do you have statistics on this? Because, as someone who support parents with EHCPs with a particular interest in EOTAS/EOTIS (with or without the C on the end), this isn’t my experience at all. Some do, but not ‘many’.

The legal criteria for EOTAS under section 61 of the Children and Families Act 2014 is that it is inappropriate for the provision to be made in a setting, and, just like all EHCPs (with EOTAS or not), the EHCP is reviewed as part of the EHCP annual review process. The AR process isn’t unique to EOTAS. It is a legal requirement for all EHCPs whether DC is EHE, has EOTAS or attends a setting.

I am reading through all of the replies,thanks to everyone for your suggestions,someone mentioned medication and this is something else i am looking at,I am waiting on the doctors in cahms to decide if they think medication is an option at her age as apparently its up to them if they see that the cbt therapy is not working.
On reading all of your replies I have decided that for now i am not going to de register and i will make the LA responsible for her education and see what happens,if i do this can i say she will only agree to online learning?this is the only thing I could see working at the moment as if they suggest a different setting or someone coming to the house she will not engage in the mental state she is currently in.
Also what kind of tuition will they give?a few hours here and there for maths,english?I am spending many hours looking at how to help alongside and came across things like £2 tuition hub,cpg books,twinkl etc.
I understand that i might in the future home educate ,i will see how it goes,I will apply for the ehcp but i was told by her school that i could not apply for an ehcp as she is not diagnosed with autism and i needed a diagnosis and i cant get an ehcp for ocd so there is no point trying......are they telling me lies?
This all feels like so much work and I totally undrstand that in a few weeks i might just think i am sick of fighting for an education and sick of emails etc and just want out of the system to home educate myself ...we will see what happens!

You do not need a diagnosis for an EHCP. They are based on needs. DC with OCD can get EHCPs. Request an EHCNA yourself and appeal if refused.

If online provision is what is suitable, that is what needs to be provided. Luckily, the LA is less likely to argue for home tuition instead because that costs more.

The provision, which doesn’t have to be formal academic tuition if that isn’t suitable, must be full time if DD can cope with that. Although full time doesn’t mean the same number of hours as school because 1:1 or small group provision is more concentrated.

My DS had severe OCD too. It started when he was 5, and by 11 he struggled to go anywhere where other people had been.
He was eventually prescribed sertraline for it which has really helped- he does still have it, but it's no where near as awful as it was.

He was unable to attend school so does online learning through Nisai. (Named in his ehcp)
I definitely think it's worth applying for an ehcp- OCD is a barrier to education and means that your DD needs extra support as she cannot meet her full potential without.

Unfortunately DS does not engage particularly well, but that's a him issue (asd) rather than Nisai (who are very good!)

Good luck with it all, it is absolutely exhausting. 🌺

Just wanted to reach out to you in sympathy- my son also experienced extreme pure OCD in year 9 - like your child, he had a fear of germs. We weren't fully aware of the depths of his illness as he kept much of it hidden from us - we just kept noticing odd behaviour such as the airing cupboard being disrupted ( he was looking for pillowcases to wear on his hands when he went to bed so that they wouldn't become contaminated). He would also scold himself in the shower after school to burn away germs. CAMHS I am afraid to say were utterly useless - my son is very bright and would mock his cbt counsellor without her ever realising - we eventually paid for therapy and this helped him enormously. He did drop out of school for almost a year, but did sit some of his GCSE's and did quite well considering! Happy to tell more if you want to reach out.