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EHCPs, Schools, Autism...help please - very much appreciated

(26 Posts)
ShutUpEccles Sat 04-Feb-17 21:51:58

I have been reading the SN posts here for a couple of weeks and think you are all marvellously helpful and knowledgable...and I need some support, please.

Background: DS1 is 13. HFA/Aspergers DX (DX at age 4). Mainstream primary; very good with him as it was small and had family feel and they were good at using their common sense in their approach to any difficulties. Unfortunately this means that he was never even assessed for a statement. He has gone on to the local mainstream secondary school. Transition was ok. Some support in Year 7 (Key Worker, daily homework club, could and often did spend free time in the SEN area). Year 8; key worker removed without notice or discussion, can but won't access homework club, can but won't access SEN dept, more and more absences from 'feeling poorly' and now we are entering proper school refusal - it's only been refusal this last week, but faking illness surely has to be a similar thing..?

We have had limited support up until now as resources, services, funding etc is poor, waiting lists are soul destroying and DS 'copes' where I guess others don't.

Well I've properly had enough.' Coping is not good enough!! He ought to be thriving, that's what every child deserves!! I feel as though I have failed DS for leaving it until now to really push for what he ought to have, but I can't go back in time so it is what it is.

What I really want for him is to be at a school where he will learn about his ASD and learn how to live positively with it. This is NEVER going to happen in a mainstream school; it's not about setting up a social skills group that he can go to (which he won't), he needs immersing in a culture where ASD is as much of a focus as a traditional curriculum.

So I want him to go to an HFA specific school that has amazing pastoral care, not too big or too small and has a 'traditional' curriculum (he is bright and keen, but underachieving). Boys school would be ok, mixed might be better. Needs to be a day school, but occasional boarding option would be great for building independence in a less scary way. His behaviour at school has always been impeccable, but behaviour at home has always been fairly appalling, so i'm thinking that a school with a significant number of children with behaviour issues would not be a good idea (I feel like a right cowbag saying that...)

We are in Warwickshire. A move for a really great school is not out of the question (but we also have DS2 who is pretty settled here). I have searched and found Swalcliffe Park, Alderwasley Hall, Bredon School...others too but I feel like i'm sinking and can't focus on the important bits.

I know I need to start with an EHCP assessment, but then I start thinking that I am being stupid because everybody knows that LAs stand in the way of even the most desperately struggling children and we don't stand a chance.

Am I being ridiculous???

Melawati Sat 04-Feb-17 23:24:57

You do just need to request an EHCP assessment and get the ball rolling. The longer you put it off, the longer it will be before your DS has support in place, whether it is mainstream or SS.
You can apply yourself, although if his school are supportive that will help. There is a lot of very helpful information on the IPSEA website.
If he is unable to attend due to anxiety, you need to get him signed off by your GP, so that his absence gets recorded accurately.
On Monday ring the Senco and ask for a meeting to discuss DS's needs and how they propose to support him. It sounds like he was doing well with the previous arrangements - can they reintroduce the key worker?

FrayedHem Sun 05-Feb-17 09:51:52

Totally what Melawati has posted.

Also does your DS get any input from Autism Outreach/Specialist teacher team? Services vary from area to area, but there should be something like that available where someone from the LA can get involved and help with the current placement and hopefully also help with the EHCP process.

You're right that the EHCP process and school placements can be very difficult. But if you don't try you definitely won't get one. Everything was against my DS1 getting one for primary but he did. Everything was against him getting the placement I requested for secondary (I couldn't even get the Ed Psych to assess!) but he did. Sometimes, against all odds, it does just work out in your favour.

zzzzz Sun 05-Feb-17 10:27:19

Brutally honest?

Without dx and with a child who's support has been removed at school last year and who superficially copes at school, it is going to take time to organise. (Here it is 3 years to dx). It's likely that your request for EHCP assessment will be refused first time round (ours was and ds had full time 1:1 and is now in SS). If it is accepted first time it will take 25 weeks (so end of July) to be completed, if not add another couple of months for arguing to be assessed.

I think the reality will be much much longer and to get into an autism specific school you are going to need a dx, I think, as it should be part of their admittance criteria.

If he is school refusing I think in some ways that may help the process along.

I'm sorry to sound so negative. sad There will be a plan and it can all work. I think it's really important to understand exactly how long each step takes (and it will be different in your area to mine). Be mindful of when GCSE options are chosen and where people go on to from each setting you consider. If you are home and have the funds Interhigh is an excellent stop gap if you hit a gap.

brew

nb your ideal school sounds so lovely. smile

FrayedHem Sun 05-Feb-17 10:44:42

zzzzz The OP said her DS was dx aged 4.

zzzzz Sun 05-Feb-17 10:50:18

yikes! I missed a paragraph. My mother is coming for a surprise visit and I have to muck out shock [fuuuuuuuuck]
ignore everything I said and I will read it again with me real head on when I have tried to save our street cred.......

how are we supposed to do normal life as well?????

FrayedHem Sun 05-Feb-17 11:16:28

I have recently flounced from RL. It's working out great for me though not sure my husband is such a fan.

I do think it's likely the LA will push back with the school should be doing more. Melawati's suggestion to contact SENCo and get keyworker reinstated is a good one. It is hard when homework/SEN areas are available but your DC can't use them as the idea causes distress. I think you have to make clear it's not DS choosing not to, but it's a direct result of how ASD affects him (not able to ask/unable to understand the benefit to him/standing out from peers etc).

ShutUpEccles Sun 05-Feb-17 13:25:20

Thank you for your replies smile

I think you are right zzzzz. The LA will LOL and say school can do more, which is true, but it still won't be right (cos i'm going to be a proper fussy cow of a mummy!!).

Best case scenario in mainstream (as I see it) would be full time 1 to 1 with an autism specialist TA. But that's not actually going to work (even if he got it) because he will then be even more alienated from his peers. IMO he needs to be in a specialist school where the culture is ASD/SEN focussed for him to him to have any chance of thriving instead of 'managing'.

ShutUpEccles Sun 05-Feb-17 13:56:03

Melawati - I sent an email on Friday morning to the SENCO, Deputy SENCO, form tutor, Attendance Officer and the Outreach person detailing where I feel we are at and requesting a meeting. We didn't get anything back but i'm sure we will hear something tomorrow.

The Outreach in the area is IDS (Integrated Disability Service). They have an Autism Team and they have been involved with DS since Year 5 when I had a full on meltdown myself because I could no longer cope with him at home.

I am going to look again at IPSEA website for the templates requesting an EHCP assessment. Need to sort that immediately.

Regarding an Ed Psych report: primary and secondary both refused to buy in the service as he is not a problem at school and a was 'making progress'. Can I insist now I want him assessed? Or do I have to wait until LA agree to assess? Or am I better off sourcing and paying for a particular Ed Psych privately to get a head start? Are there Ed Psychs who are especially good with regards to securing a place at ASD specific schools?

FrayedHem Sun 05-Feb-17 14:21:32

The only way an Ed Psych assessment can be forced is as part of the statutory assessment for the EHCP. You could possibly make a complaint via the school's complaints procedure - making a written request to the Head and if they refuse progress to the Board of Governors'. The school may concede to getting remote Ed Psych input first - so by phone/email then seeing how that goes for x amount of time, then considering a request for Ed Psych Assessment. Not sure I would take that road personally.

I would suggest calling SOSSEN. They were able to give me details of private Ed Psychs who covered our area when I was having issues with my LA wrt to assessment and would be helpful in securing a specialist placement. The quote I got was ££££ and we decided against pursuing it, but many posters have had a very positive results with getting one.

Hopefully the people you have contacted will kick-start some much needed action for your DS. Maybe also try and get a referral to your local Child/Adolescent Mental Health Team if he is struggling with anxiety/school refusing? Here you can refer directly (though they rejected DS1's application as his anxiety is purely because of his ASD and they only get involved if beyond that. I was going to use that as evidence why he needed to be in a specialist ASD provision, but haven't needed to).

ShutUpEccles Sun 05-Feb-17 16:05:46

Thanks FrayedHem.

I will contact SOSSEN and IPSEA.

We have been under CAMHS before. First time when DS was 6 - kind of helpful. Second time - didn't get past the first meeting as they were horrible and DS ran from the room crying. Third time - was told they were def the right service for DS and they would investigate some play therapy and family therapy. Months later had a letter discharging him, but they had referred on to Primary Mental Health Trust. Months later had a letter from PMHT saying they do not deal with people who have a DX. Told to try IDS, which is where we started!! I know that these organisations have little money therefore limited resources, but angry!!

FrayedHem Sun 05-Feb-17 16:15:50

Do use all that carry on for your evidence of why he needs a specialist placement as you can't get the support he needs from outside agencies.

It's so infuriating when you get sent around in circles. All I actually wanted was a letter by a medical professional stating DS1 had anxiety to support his EHCP transfer, but I was told I wanted a service that didn't exist!

ShutUpEccles Sun 05-Feb-17 16:24:15

FrayedHem angry sad

What's the situation with your DS now?

FrayedHem Sun 05-Feb-17 16:39:15

He's in Yr6 and I found out on Friday he got the placement at the ASD hub I'd requested for secondary school in September. He is hanging on in primary by a thread atm - really gone downill since starting year 6. He was statemented (as it was then) from reception, so has always had TA support but he doesn't want that despite needing it, so it has all gone horribly wrong. As he's year 6 his statement was being converted to EHCP and it has been farcical!

There were 5 places and I honestly didn't think I'd get one. We're in a different sub-LA but it is our closest but still 20+ miles away. When we looked around it, we were their 44th enquiry and it isn't open yet so it's not advertised anywhere - the specialist teacher tipped us off on it. I had no Ed Psych report and the only other service he has is Specialist Teacher, so very little professional weight. His draft EHCP seemed to be mainstream plus support (said equivalent to 22hpw, all very vague wording) and I was certain that meant we hadn't got it. I cried down the phone when they told me! I had done a 3 page letter matching the school's provision to DS1's needs and really going heavy on why it was essential DS1 got that place, but I think we just really, really lucky.

Sorry for the me-rail I'm still in shock! But keep going. First step, try and get support increased where he is, so you can prove to the LA his needs exceed what a mainstream can reasonably be expected to provide and accommodate. Keep focused on what you ultimately want, (the specialist provision) but don't play your hand too early either.

I've always found it easier to get through to SOSSEN than IPSEA. They may both be v busy atm as the 15th Feb is a cut off for plans to be issued (to do with giving parents enough time to go to tribunal or something) so they will get a lot of calls. Do keep trying, just be aware it's one of the key times of year parents' of children with SEN are tearing their hair out.

ShutUpEccles Sun 05-Feb-17 18:28:31

I hadn't thought about 'playing my hand too early' shock

FrayedHem Sun 05-Feb-17 18:49:03

I've probably been a bit melodramatic there with my choice of words! I just mean from the LA pov, no support in mainstream to an independent specialist provision is a big leap.

ShutUpEccles Sun 05-Feb-17 19:40:29

You are right. I'm more than a little nervous about the journey ahead.

ShutUpEccles Sun 05-Feb-17 20:04:17

Right...
I have requested a meeting with school, I hope we hear tomorrow.
I have sourced a model letter from IPSEA. Will show DH this evening and get it sent.
Now I need to think and write down (I have no brain when sat in meetings) what I want to cover with the school.

I don't think they are going to want to support me in my quest. I don't think they have a clue how bad things are for DS and will probably think I am overreacting.

FrayedHem Mon 06-Feb-17 10:10:54

Sounds like a good plan. Make sure you send a summary of what was discussed and agreed at the meeting so you have the all important paper trail.

Hopefully the school will be responsive, but if not, it's further evidence he needs a specialised placement where staff have the expertise and skills to understand the complexities of how your son's ASD affects him.

tartanterror Thu 09-Feb-17 08:12:45

Just seen this as I catch up on threads.... hopefully you haven't just sent the standard IPSEA letter without adding lots of extra evidence to make the LA's job easy.....? My DS is younger than yours but has similar issues. Our LA agreed to assess but I sent in the IPSEA letter which I bulked up to 3 pages setting out all the issues and legal case for help. I attached all the reports we had and notes of school nonsense so it was >50 pages in the end. We are being assessed now so I'm only just started but lots of people told me to "just apply" and "get started". A nice mumsnettet sent me a blanked copy of her letter and I used that as a guide for mine. I'm sure I'd now been applealling if I'd just sent in the standard template - as zzzzz said to me on an old thread it is all about "evidence evidence evidence"! PM me your email if you want to see my letter and use it as a base for yours?

Userone1 Thu 09-Feb-17 10:03:43

You've already received some great advice so I won't repeat!

Just wanted to pick up on 'the faking illness' comment. Anxiety can cause physical symptoms, feeling sick, vomiting, stomach ache, head ache, aches and pains etc. So not necessarily 'faking'.

A GP to your Gp to get physical symptoms of anxiety noted, might be a good idea.

Userone1 Thu 09-Feb-17 10:04:37

'A trip to your gp' not a 'a Gp to your gp' doh!

Megatherium Sat 11-Feb-17 13:40:48

Check your LA's local offer website - they may have a standard form for requesting assessment. You don't have to use it, but it may speed things up a bit if you do. If there are questions you can't answer, e.g. about precisely what support your dc has been getting in school, just refer them to whoever can give the answers. Include copies of relevant reports etc with your request.

ShutUpEccles Sun 12-Feb-17 16:40:42

Thank you so much for all of your comments.

We have a meeting tomorrow morning with the school.

Nervous...

tartanterror Sun 12-Feb-17 20:21:10

Good luck! What's on your list to discuss? Remember to keep detailed notes and the email them to yourself/the school after. I got some very helpful quotes from school meetings and phone calls which supported our EHC application!

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