ASD and Epilepsy refused EHCna

[ShingleStreet1]

Found out today that my daughter has been refused a EHC assessment. We are told that the school should be responsible for her. However, she has not been in to school since November 2022 due to seizures and children laughing at her during her mock exams and a general anxiety of being in school due to ASD.

We asked to be referred to Hospital School in March when it became clear DD could not sit exams in Summer 2023 due to her illness and medication. We have heard nothing, except a very late request for consent to access medical files in June. We have just been told by her epilepsy nurse that she cannot access Hospital School as she is over 16 (she only found out because she kindly followed up an email we sent to the Children's Commissioner and we CC'd her) DD may have to re-enrol in Year 11 at her school in order to access Hospital School. We are still waiting for confirmation of this, four days before the start of term.

Anyway, reading between the lines of the EHC refusal letter, it seems that they have deemed that the school should take full responsibility. As the school had no formal measures in place to care for her needs while she was having seizures and anxiety, apart from sending her to Inclusion, it seems the LA has decided no assessment needs to be taken. This is despite DD having a diagnosis of Epilepsy in January and not having been in school for almost a year. It is extremely distressing for her that her friends all have their GCSEs and are moving on with their lives. She, however, has been left in limbo, not knowing what she will be doing on Monday when term starts.

What do we do? Appeal? Write to our MP? And how can we strong-arm the school/LA/Hospital School into actually providing an education for her beginning next week?

Would really appreciate some advice from others who have been in a similar situation. Thank you.

Appeal, the vast majority of appeals are upheld.

Unfortunately, there is no way to force the LA or school to provide provision other than via an EHCP. Because DD is no longer CSA section 19 provision now doesn’t apply. Not helpful for you now, but in case you or others find themselves in a similar situation in the future, you could have enforced provision, via judicial review if necessary.

Could you phone IPSEA and ask for advice? As @OvertakenByLego says, your daughter being over 16 may change some aspects (e.g. local authorities have to provide education once a child's been out of school for 15 days - but I don't know if that still applies at 16). Perhaps the MP could find out.

Have you asked the Epilepsy Society for advice?

Could you afford King's Interhigh or similar as a stop gap?

Unfortunately, s.19 provision only applies to CSA pupils.

@OvertakenByLego in English please?!

@Phineyj the provision you are talking about (provision under s.19 of the Education Act 1996) only applies to compulsory school age pupils (i.e. not before the term after a child is 5 and not Y12 onwards).

Ah OK.

I think the Epilepsy Society may be the best bet then. This is a very specific set of issues.

Thank you both for your useful advice. This system sucks!

@OvertakenByLego, we will definitely appeal. Apparently LA refuse applications to buy time/see if parents go private in desperation. Good to know that most appeals are upheld.

Still waiting to hear from school if DD can re-enrol in Y11. I can't help feeling that Hospital School has dragged their feet on this until now (DD turned 16 three weeks ago) Or am I just being cynical?🤔

@Phineyj, I will definitely be in touch with the Epilepsy Society and MP is a good idea too. We have looked at Kings InterHigh but I hate the idea of having to pay for an education that she should have just as much right to as everyone else. It is not her fault that she fell ill in her GCSE year!

Anyway, thanks to you both for helping me navigate the madness.

You aren’t cynical, sadly. LAs do lots of things to waste time. When you appeal don’t bother with mediation, just get the certificate and submit to SENDIST. LAs use mediation as a delaying tactic. If they are going to concede they will do so whether you actively partake in mediation or just get the certificate.

EHCP support thread - www.mumsnet.com/talk/special_educational_needs/4834986-ehcp-support-thread

Come and find some fellowship here, OP. We will tell you the annoying things councils have done to us.

If you can afford it, I think you should do Interhigh because it will give DD a peer group and something positive to do.

DH and I have spent 5 grand so far on stuff we really should have been provided by the public sector...it makes me cross but what can you do??

@OvertakenByLego, Sorry for the late reply - school battles and a serious reaction in DD to a new drug made me very forgetful. Thank you so much for this advice. It really helps to have someone help you cut through the cr*p.
Hospital School have now agreed that she can have provision but we are still waiting in week 2 of her GCSE year for them to actually provide this. Apparently they were confused by the fact that this is "a physical, not a mental health issue". We have been waiting since March!! And anyway, she has always had mental health issues in the form of school attendance anxiety and now she really does have extra issues due to having no formal education since last autumn 😡

@Phineyj, Thank you. I will head over to the EHCP thread. Good to have advice from people who are much more experienced in the madness.
Still considering Interhigh.