EHCP support thread no. 3

[Phineyj]

A new thread for when no. 2 is full up.
Link to thread no. 1: https://www.mumsnet.com/talk/special_educational_needs/4834986-ehcp-support-thread
Link to thread no. 2:
https://www.mumsnet.com/talk/special_educational_needs/4989146-ehcp-support-thread-no-2

I am the mum of an 11 year old girl with SEN and have spent the last 20 months battling for my local authority to issue an EHCP to support her transition from primary to secondary school. We are currently after draft stage after two tribunals. I've had so much useful advice and moral support from posters on here.

This new thread is here to help everyone, whether you're just starting out or are a battle-hardened veteran of years of this.

There is no such thing as a stupid question and there are many acronyms and technical terms so please ask for an explanation of anything that you don't understand.

SEN: special educational needs (sometimes SEND: special educational needs and disability)
SENCO: teacher at school charged with overall responsibility for students on roll with SEN
ECHNA: education care and health needs assessment - the process of a local authority commissioning reports to find out a child's needs
EHCP: the education care and health plan that details a child's needs and the agreed provision to meet them; a legally binding document
SENDIST: the special educational needs and disability tribunal - an independent appeal panel which considers parental appeals against Education Authority decisions about special educational needs.

Brum I’m sorry that your DS3 had a similar breakdown in ability to tolerate school. It seems like this is a common preteen age range in which school becomes too much, but then it seems the responses that individual DC need, adaptations schools make and the AP options that parents have to choose from are so varied and individual that it is so hard for parents to know what to do next. I feel so confused going through EHCNA because I don’t have a clear idea of what my DD needs or what would work for her. Other parents talk about fighting for schools at which their DC will thrive. Mine has always had a very bad relationship with school and terrible attendance. But I am nervous to change schools again to try out another placement that may not work. Has EOTAS been a success for your DS?

Now I wonder if it’s worth pushing in the ECHNA to try what you tried with your DS as a staging post to see if it works. That could be a combination of trying staying for majority of week in the current MS school part time for continuity, while working towards fewer GCSE subjects. Then minority of week being at an AP with 1-1 and some very basic academic content with very little pressure. So either that will work as a combination for my DD or it won’t, and if not then we review and try for EOTAS.

The whole process is supposed to take 20 weeks. I have no hope of this happening but does anyone know the answer to this.
If you/nursery submi a request for your child to be assessed, they reject it but then they change their mind and agree to assess when does the count of weeks start? I
Is it from the date it's submitted, the date they reject it or the date they agree to assess? I'm assuming the last one but would like to know for sure.

@Crystallizedring, the clock starts again at week 6. So if they're not going to issue, they must tell you within 10 weeks of when they changed their minds, and if they are they must finalise within 14 weeks of that date.

@EHCPerhaps DS3 was in a supportive and inclusive school, with an excellent EHCP. For him, the straw that broke the camel’s back was being assaulted by another child with SEN. The underlying issue was the sensory environment of secondary that was completely overwhelming, which all the support in the world can’t overcome. For the package DS3 had, you would still need an EHCP. You wouldn’t get the package of support he had with just section 19 provision &/or school support.

You don’t need to know exactly what DD needs now. The provision in EHCPs is taken from the professional evidence. That is why it is important advice and information from all the relevant professionals is sought during the NA.

Personally, I think you should continue. Especially when you consider between now and getting a watertight EHCP (whether that is full-time at school, package with part time school and part time provision otherwise than at school, or a comprehensive EOTAS package) you may have 2 appeals (refusal to issue and content/potentially placement). You don’t want to stop now, then realise in 6 months you actually need to request an EHCNA again, leaving you potentially still a couple of years away from a watertight EHCP.

I have 2 DC with EOTAS (or rather DS3 has EOTIS - amounts to the same thing and IMO there are more pressing issues to focus on than what vowel is used). It works very well for both. Teen DS1 has had EOTAS for many years. The package has changed over the years, but it is the best option for him. DS3 hasn’t had the package a year yet. It is working OK so far.

Does anyone know a good EP/Clinical Psych/other team who could do a decent independent ASD assessment? Around the Bristol/Cardiff/South Wales area.

Thanks!

@Alltheyearround South Wales Autism Assessments.

Great. Thanks Brum. Asking for a friend not on MN.

We have just had DS assessed over the summer and it was a yes.

I realised there were so many things we just took for granted and worked round. A little bit sad there is another disorder to add to the big pile, but it means we can support DS as best we can so that's the silver lining. Also means we can approach specialist independent to see if DS would be a good fit for Y11 and beyond.

Bloody LA have still yet to issue a correct final, despite us telling them they are in breach of the 5 weeks - tribunal was mid July.

Provision sorted for start of term? Dream on. They only began asking around for SALTs in mid Sept.

Anyway they have OFSTED in so I have made a full and frank account of the many ways they have failed DS over the last 8 years.

Hope OFSTED can see the deep cracks children are disappearing into under all the papering over.

Solicitor briefed and waiting for Final and then a PAP if no provision for SALT forthcoming (that was what tribunal was for mainly). Not messing around this year.

@Alltheyearround South Wales Autism Assessments was originally set up by Chris Wade, if you know who that is. They undertake some NHS work too, so the validity of any assessment is less likely to be questioned.

Sorry the LA is dragging it out further. It is too common these days. All to save them money, of course. Have you threatened JR for failure to finalise following the tribunal?

@BrumToTheRescue No, no idea, who Chris Wade is (I mean I read his bio but do I need to know more)?

DH emailed tribunal worker again today and she has promised to issue by end of today. She only works 3/5 days so if we miss Wed we have to wait for Monday to come around.

Ours was done with an NHS clinical psych with input from various other including 3 speech therapists we have on board - two of them are NHS consultant level specialists.

All done according to NICE guidelines etc, multidisciplinary, ADOS etc

Seeing NHS paediatrician on Friday. I would like him to write in his report to say he validates the diagnosis and on behalf of the NHS accepts it (we paid privately as waiting lists years long here on NHS ) but not sure how to phrase it to him.

Have emailed report to his secretary.

I don't want to give any chance for the LA to pick at it when we do AR.

We will threaten JR if they don't get Final out this week. Had quite enough now.

@Alltheyearround you don’t need to know who CW is. I mentioned it because he is quite well regarded by SENDIST, so if you knew who he was, you would know he knows what he is doing.

I would ask the paed to add autism to the list of diagnoses on the clinic letter. By doing that he will be acknowledging the diagnosis is accurate.

Great. Thanks.

@BrumToTheRescue
DD has been granted her EHC and a draft is being sent to me next week. I know I have to check for vague and wooly wording.
You provide so much advice and I want to send you a massive thanks.
I wish all of you the very best.

You are welcome @Onegentlepeer. Pleased to hear the LA is going to issue.

Another working document question: Is it a good idea to send all amendments to the LA at once? I have quite a few (recognising my own ND and hyperfocus on this!) and I'm afraid if I send them all at once the LA might think I'm being unreasonable, even though I can justify everything. So I'm wondering if it's better to start with the most straightforward ones and then tackle the possibly more contentious ones in a later version. How many versions are typical or acceptable during this process? Maybe it just depends on the person at the other end of the request?

@SpaceInvader321 make all the amendments you are pursuing. There’s no standard number of versions. Some cases don’t beyond v2 because the LA doesn’t engage. Others end up with numerous versions.

Sent all my final evidence yesterday including letter from the current head teacher advising they cannot meet need.

Copied in Sendist and asked them to review as the la have not engaged in the working document process as yet. Now I wait the evidence deadline is not until October

He is going to add it to his report but says he will have to note that it is a private diagnosis. Now, I get why, even though its NICE compliant multi disciplinary etc but given the wait times round here are years (I have been told 4 years by another parent), we just didn't have much of a choice.

School were asked to contribute but despite a named staff member being approached no on ever replied to the clinical psychologist, which did make me feel irritated.

How long are ASD waits generally around the country currently? (addressed to all posters on thread) out of interest.

@Alltheyearround I think that is sufficient. If the consultant didn’t agree with the diagnosis they either wouldn’t mention it or would mention it but raise concerns about the assessment &/or diagnosis. If the assessment followed NICE guidelines the validity wouldn’t be questioned by SENDIST just because it is an independent diagnosis.

I would be interested to know if there is anywhere that doesn’t have a waiting list of at least a couple of years for an actual assessment rather than just first contact.

@BrumToTheRescue cauldwell children did my daughter's referral went in may and was diagnosed in July. I wasn't happy with the report as there were inaccuracies and I also felt they give text book advice. But I have used the diagnosis to request an ASD specialist school.

I checked with the NHS to see if daughter was still on the NHS waiting list as cauldwell can only assess ASD but I have strong feelings my daughter is also ADHD gdd amongst other things they have confirmed she is still on the list however is taking up around two years for initial appointment

@Mummytodo I meant NHS. I think that is what @Alltheyearround was asking about.

@BrumToTheRescue sorry I was meant to add to that when I checked with NHS they said daughter is on the waiting list but is currently around 2 years wait for initial appointment... With a clause at the end saying the cannot guarantee wait times as they continue to increase

Oh I did write it haha. Gosh I better get to bed I don't know what I'm talking about.

I have checked with parents on a local EHCP FB page - at the very least 18 months to 3 years wait time for ASD assessment.

We just couldn't wait that long - he'd be 17 by then.

We are going to approach a specialist setting now we have a diagnosis.

Got Final on Friday and going to read it carefully tomorrow. Should have had ages ago as tribunal was mid July.

LA consulting with speech therapists - should have been in place from 5 Sept.

At least now we have the final we can stamp feet legally if nothing happens in the next week.

School still dodging proper provision of OT stuff - DS said he had intervention for 30 mins not 45, and only half the stuff he should work on (no gross motor only fine). We have emailed school but no answer for a week. Need to ask for provision map and ask LA to investigate.

School SENCO also trying to cover up the fact that he has made poor progression in literacy. Told me reading age was 8, no turns out that accuracy and rate = fluency is 6 years, only comprehension 8. A miracle considering how laboured his reading is. EP said reading age was 6.5 in Y4. DS is now 14 and in Y10 and seems to have regressed in some measures.

I had asked for the data last AR (May) as I was concerned that he would be on track to leave school without even meeting the reading age of 9 (classed as a minimal reading age to function in society)..
They are not doing what the EP said e.g. precision teach, phonics, paired reading. They are just doing their own thing. When I challenge they say well that report was for primary. Yes but have issues resolved? Is it still in the EHCP? Then it stands.

I think if we get a place offered we will throw the book at school/LA. Concerned if we do this right now then we might end up with no placement at all.

School have fought us all the way for 3 years now in terms of not wanting to provide what is in the plan. I have reached the end of my tether. It's a shame as as a school it has many good features and some excellent staff. But its been open hostility, cover ups and excuses for so much of the provision. They are happy to take the funding but then they just want to 'do what they do' without the needs of a particular child getting in the way. I really feel like its fraud.

I understand why people home ed their children with SEND. I could have spent all the hours I have spent on chasing people not doing their jobs on teaching DS and done a good job of it.

Its honestly soul destroying. I know you all know this. I just feel broken. I'm sure I'll be back up and at 'em by Monday. Takes its toll though.