How did you survive the EHCP process?

[SinkGirl]

I honestly just can’t do this. I’m so far out of my depth, it’s ridiculous. I’ve had advice from different charities and places which I’m following but it’s just impossible.

I’m not asking for advice on what to do - I know that we are one meeting away from pursuing a tribunal and am trying to accept that because being assertive is not my forte but if I don’t push properly I’m letting my boys down.

I just want to know how you get through this in one piece mentally because I’m not doing very well at that right now.

If I'm honest, I barely got through it with my sanity intact.

I have NEVER shouted at anyone over the phone until I had to deal with the local authority handling DC's EHCP. It was fucking horrendous. I was lied to, ignored, given wildly inaccurate (crucial) information and catastrophic errors were made on their part. I need to make some changes to the document at the next review and I'm dreading it.

Just try and keep in mind that having that document in your hand at the end of the battle will make it all worthwhile (assuming the LA haven't generated a complete pile of shite that isn't worth the paper it's written on ).

It's good to hear that you're already seeking support and advice. I hope you don't end up going to tribunal.

Have you had support from SENDIAS?
I’m a Senco, and every EHCP I’ve applied for has been granted. How is school supporting the process?

All of it, getting diagnoses, getting support, getting the right(ish) school, getting the EHCP took a toll on my MH. Tipped my anxiety into full blown OCD. And tbf we had a relatively easy ride on the EHCP.
Could you refer yourself to talking therapy? Usually a long wait but might help?

Eyes on the prize. It’s a fucking nightmare but you CAN do this, and you will do it, and once it’s done the first time, you won’t have to do it fully again.

I found it helped to do it in small chunks, rather than running at it like a mad thing and then being overwhelmed by the size of the task. If you still have time before the deadline, tell yourself you’re going to spend (say) an hour a day on it, and don’t try to do more. (That’s also how I deal with DLA form of doom, btw.)

You really, really can do this.

Just realised it's you, so you're doing two and for little ones. Talk to your support team about support for your MH before you crack.

Find your tribe.

There will be Facebook groups for EHCP parents in your county as well as national ones. Also see Special Needs Jungle. You’re not alone, and frankly if you’re up to tribunal prep then you’re actually over the worst anyway.

If you’re doing two, that’s v tough - do you have to do them concurrently?

Lean in, stand firm. X

We are lucky that our senco and school are amazing. But the battle with the LEA is literally never ending. We have the next review in a couple of weeks to start battling to get secondary provision

Thanks all - will reply properly later, portage due in 3 minutes and I’m hiding in the kitchen in tears while the twins watch Duggee. Thank fuck for Duggee today.

I’m a Senco, and every EHCP I’ve applied for has been granted. How is school supporting the process?

Ime, the biggest problem is getting an EHC plan that is worth the paper it’s written on!

To answer OP, if necessary, go to see your GP and ask for antidepressants! Also try to get support from somewhere, whether it’s a SEN Helpline, a group for parents of children with SEN, a lay Tribunal advocate....wherever!

It’s all worth it, when you get the EHC plan you want - that accurately describes all the needs, specifies all the provisions by the minute/hour per week/fortnight/etc in the placement DC needs!

I would also recommend SENDIAS and also IPSEA. Just be aware that SENDIAS are part of the local authority set up - so not totally impartial and often the advice is as good as the volunteer on the end of the phone. IPSEA on the other hand are brilliant if you have a specific question/problem and will give you good legal advice.
I am thinking your problem at the moment is getting the EHCP rather than getting it right (an art form in itself). Also if your boys are having portage then they are very young? Consider posting on the special needs boards - chat or children - you will get some good advice from people who have walked the same road.

Ime, the biggest problem is getting an EHC plan that is worth the paper it’s written on!

This! It took me complaining to the top and quoting the code of practise to get a specific plan in place with hours of 1-1 specified not just “needs support”

In all honesty it nearly tipped me over the edge.
The EHCP wasn't too bad it was the fight to get school to listen in the first place, then the battle for the right school.
Like a PP I had never shouted at anyone over the phone before I had to deal with the incompetent twats at the LA.

I had to channel my inner bitch and stand firm in meetings, I vowed they would never see me cry, I did that when I got home.

Dig in, be hard faced and don't let them think you have any weaknesses. It seems to be the stroppy parents who get what they need, which is wrong but how it is.

And had I not had the misfortune to be involved in the SEN system I would never have believed how awful it is.
If I'd heard someone telling me what I was going through a few years ago I would have thought they were lying. It is a truly messed up system.

I am thinking your problem at the moment is getting the EHCP rather than getting it right (an art form in itself). Also if your boys are having portage then they are very young?

No, we have the proposed plans - one went to panel last week and I’ve heard nothing, emails to chase it up or just ask when I’ll hear have been ignored. The other goes tomorrow.

I’m not holding my breath, they are quite literally useless. Their needs are extensive - they are 38 months and majority of skills for one are birth - 11 months, the other is mainly 8-20 months.

Their needs are documented extensively in the plan - there’s just no specific provisions for 95% of them. There are outcomes with no provision, there are vague provisions with no related outcomes. There are needs with neither - eg extensive sensory needs and outcomes about learning to manage them and no provision whatsoever.

They forgot to request a SALT or nursery report for one twin, and refused to arrange a Vision Support assessment which I now know is mandatory as he has a VI (I’ve arranged one myself which is tomorrow). They refused my request for OT assessments despite the extensive sensory needs.

They’ve lied about taking advice from SENDIASS (which SENDIASS confirmed) in the lack of specific provisions - and they’ve tried to appease me by putting in a sentence saying that school should seek professional advice on frequency of provisions.

SALT made specific recommendations that clearly show he needs specialist provision - which they’ve conveniently left out.

I’m preparing an obscene amount of evidence for our meeting next week. Either the panels agree to a specialist early years setting and I let it go then push for an early review when I have more reports.

Or panel says no to specialist, in which case I tell them I’m going to appeal, at which point I suspect they’ll change their tune (and IPSEA agrees) because the plans are so woeful they can’t possibly defend them.

Have had a rant to our awesome portage worker today so feel slightly better. I know we will get there in the end, it’s just about the time we are losing in the meantime. Their needs are undeniable, so I know we will get there - there are two autism specific early years settings in our area and they should more than qualify for that help.

I’m just furious this is necessary. It’s not even like I’m disagreeing with their assessment of their needs - the needs are all in there, how can you not set provisions for them when that’s the entire bloody point?

I know I’m not alone and that this is absolutely standard, which just makes me more angry. What about the kids whose parents can’t put in this much time and work or who don’t understand the law? Those kids are absolutely screwed and it’s inexcusable.

Argh. Rant over!

Even though the process here means that draft plans are written before its decided a plan will be granted so it’s not guaranteed, I don’t think there’s any chance the plans won’t be granted.

They’re in a regular nursery part time right now and they are just overwhelmed with SEN kids to be honest - they are supportive but not the most effective. They’re doing their best. They’d been saying they’d start the process for months before I ended up doing it myself.

When I first got my DC's diagnosis I was told, in passing, by various people that I prepare myself for a battle to get him what he needs / deserves / is entitled to.

I had absolutely no idea just how much every single step of the process would test me to my limits, how much even the most simple of tasks would take multiple emails, phone calls and frustrated threats of escalation.

OP your situation is truly shit but I'm sorry to say it doesn't shock or surprise me. It's just a constant, unrelenting battle. You will get there, though.

To be honest we were so lucky with the ASD diagnoses being done so quickly (DT1 was diagnosed at his first appointment, DT2 at his second appointment for this but we already had a lot of consultants in place for him and it was only delayed while we waited on SALT assessment and genetic tests to rule out other things). I know how much of a battle this usually is for others plus portage were amazing and so quick to help us, and I guess it may have given me a false sense of security in terms of thinking maybe where I live things are better. I was waaaaay too trusting of the LA at first - the caseworker even came along on a portage visit to meet them and said all the right things. Ed Psychs were so thorough in establishing their needs I thought the rest would be easy. Now I feel like an absolute idiot.

I’ve had a weepy day today, and am really struggling with physical anxiety symptoms which are endless. Will have an evening off to try and relax and then get back on it tomorrow.

We've started the EHCP process for my DS, he's just turned 3.5 and on the asd assessment pathway. His needs are primarily speech and language, speech delay, behind in understanding instructions etc and preschool are saying he needs a 100% 1 to 1 to cope with starting school in September. He has no behavioural or sensory needs and no other medical conditions.

Everything I read says how difficult getting an EHCP is and I don't know if we live in an area where they approve them readily or preschool are being wildly optimistic/naive, we have been approved for the second stage so I suppose we'll see when we get to assessment shortly.

I'm worried sick about him starting school, making the wrong choice for him. I don't have any advice, it's exhausting.

Preschool my advice would be to read everything about EHCPs on the IPSEA website now - I started much like you, everything seemed to be going swimmingly but if I’d been better informed we wouldn’t be where we are now. I thought wow, this is much easier than I thought, I was incredibly naive.

Hopefully you won’t have to deal with all this but definitely better to have all the knowledge and not need it!

OP, are there any local WhatsApp groups you can join for SEND parents in your LA? There are several in my borough and they’re an amazing source of support and information about how to get stuff done in this LA.

And you’re not naive, at all. It’s appalling and mind-boggling that, as parents of children with such obvious additional needs, we have to fight for the most basic provision. As you say, it’s the children whose parents aren’t first-language English speakers or confident or bolshy who are really going to suffer.

Thank you. The local SENDIASS has monthly drop in sessions so I think I will go to one of those too to find out as much as I can.

I hope everything starts to go a bit more smoothly for you.

Just thinking of the kids whose parents can’t do this (which could be for so many reasons - language barrier, their own learning disabilities, single parents with no time, just trusting the LA to do it right etc) and the parents themselves absolutely crushes me.

It took a while for me to realise that LAs have literally no incentive to write proper plans. Either the parent doesn’t know any better and just accepts it, in which case they save cash. Or the parents argues it and they can delay for months (saving more cash) and then relent just before tribunal. That could be a year extra of not having to pay out. They’re in a no-lose situation and it’s our kids who suffer.

Once these plans are sorted, I’m going to see what I can get involved in to campaign against this awful process.

It's hard. I cant lie it almost broke me. I know it's not PTSD but in some ways that's how much it consumed my life for years.

However I won four tribunals four years in a row and I never ever ever regret doing it. My son is in a safe school until he is 18. I will never have to fight for his education again.

Plus I have learnt so much about myself. No regrets

I can't comment from a parent's point of view - honestly I had no idea it was so difficult. It sounds horrendous.

However, I am a secondary school teacher. I know your DC are a way off that age but I can tell you that our SEN register is huge, massive - my school has 1 in 4 kids with some kind of SEN. We do our best but the only kids who get consistent, proper support are the ones with EHCPs. Keep going.