To hate the whole SEND system and everyone in it and wish they would all sod off

@PocketSand and that is, of course, your choice. That is why I said for anyone else reading. Although it wouldn’t have to be an LA employee and the LA cannot insist parents are present for safeguarding reasons. It is not EHE.

I know that. I was tired of fighting but appearing to win but actually losing. It costs emotionally and financially and practically. Compromising was the least worst crap option. It was crap but less crap. I didn’t want an LA employee in my house for hours every day and for safeguarding reasons I had to be present anyway. And my son was disintegrating in his placement and it was constant stress for me. It was a cop out that allowed me to survive and my son to thrive (or at least survive with his mental health intact and achieve closer to ability and progress to 6th form and uni).

I fought all the way for DS1 and when his specialist failed. SOS!SEN started JR and he got 5 GCSE tutors, SALT, OT, community psychiatric teen support on a weekly basis. Made no difference. I’m still full time carer. He’s still unable to interact with anyone but immediate family.

I remember sitting outside my other child’s primary crying behind my sunglasses as I watched what should’ve been my disabled daughters year going off on a trip .

I had to be there and be unpaid LSA

For anyone else reading, the LA cannot force parents to do this. Parents cannot be compelled to organise, deliver or facilitate the provision. The LA is responsible. They must fund someone to do this role if it is required.

DS2 had an EHCP and LA funded internet school as well as tutors for English language and literature and history in addition. Plus therapy from SALT and OT.

I had to be there and be unpaid LSA and there was the weekly disruption of tutors/therapists but they were recruited by the family and not spies gathering evidence to use at the next AR to cut support. I actually enjoyed their home visits as I got time off and could speak with a supportive adult who had my son’s best interests at heart. This is far from the horror of being forced to deregister and HE a child with high needs without support.

Best of all the constant and often adversarial contact stopped. Once a year AR to rubber stamp continued support.

I won’t lie, on a personal level I became deeply depressed that my hope of any independent life was over, but the day to day stress was killing me. Coping with my child who I loved was a doddle in comparison once the constant stress of dealing with the system was removed but only because internet school reduced stressors and he received 1:1 support with areas of learning where he still struggled and with social skills.

And I know the LA only did this because they had already been forced to pay for specialist school at tribunal for DS1 and this was a strategic move to get a cheaper option.

Yeah, it’s shit. Endless tick boxing, endless worrying. You’d think the system would be there to support but seems there to hinder us more than help.

Solidarity, OP.

My 'child' is now 43 and I'm saddened that all the battles I fought for him are still being fought by those coming up behind me.

ETA: @Sahara123 Oh, I'm with you on the respite thing. I'm sure there are many people who think it's an easy fix, but I recall a parent saying that she felt it was much easier to adopt her son than it was to get respite care for her daughter...

I hear you. I just want to wake up in the morning and just think of ME, not someone I have to wash, dress, hope they’ll actually go out with their carer ( adult now). I want to not hear all the fantastic things people are going to do when they retire. Sorry if this all sounds selfish but I’m so tired. I don’t want to feel different to everybody else but I do.
And please don’t say “ have you thought of respite” to me.😔

@Kirbert2 1 hour a day is not a suitable full-time education. The LA knows this.

Send the relevant model letter from IPSEA’s website to the Director of Children’s Services. If that doesn’t work or you have already do it/threatened JR, you need a pre-action letter. SOSSEN can help with this free of charge. Although there is a wait, so you may want to look elsewhere if you can afford it or if you would be eligible for legal aid. Then, if the pre-action letter doesn’t work, judicial review proceedings will resolve the situation - for JR proceedings, DS can be eligible for legal aid in his own right.

Apparently, they will soon be providing a tutor for 1 hour a day.

I'm constantly chasing it up but nothing so far.

@Kirbert2 if DS is compulsory school age and the LA has refused to provide suitable alternative provision, have you looked at a pre-action letter for section 19 provision?

This is us right now. My son has been out of education for months now and the process is so incredibly slow, he needs 2:1 support and we're waiting for his EHCP to go through and then hoping he can stay in mainstream.

He is desperate to go back to school. He just wants some normality back.

I had my son with complex needs home for 6 months with no education or other support because despite legally having to the LA weren't providing anything. He is a child who now has 3:1 support. I love my son but it wasn't good for me or him. I had to keep going but it took me a long time afterwards to recover from the exhaustion.

IMO you really don’t need to “suck it up”, what you do need to do is do a sort of internal audit of what is helping and what isn’t so you can judge how valuable the process really is. It can be quite depressing BUT it also allows you not to become emotionally involved in every part. I’d really recommend asking for meetings not to be in your own home. It’s a cost saving exercise on the whole rather than necessary for your dc. The LA are perfectly capable of booking a meeting room, or renting one if needed.

@ASimpleLampooni totally hear you. It’s exhausting constantly fighting the system to get basic needs met and trying to advocate for our children. I gave in and started home Ed, it’s not perfect but has taken a lot of the pressure of having to deal with the broken education system everyday.

@purpleblue2 the systems that are intended to support often creat barriers for children and their families making a difficult situation intolerable. The attitude that parents should accept minimal help for maximum effort leads to children’s needs going unmet, because parents should just be ever so grateful, suck it up and get on with it.

You need to suck it up essentially it’s there for your child and to help.

Also my lovely senior colleague always reminds parents of children with EHCPs that they aren't compulsory and parents can chuck them in the bin if they want to.

Telling parents that is a bit misleading. LAs can only lawfully cease to maintain an EHCP if the LA is no longer responsible for the child or young person or it is no longer necessary (in the legal sense) for the EHCP to be maintained. This is set out in section 45(1) of the Children and Families Act 2014. If the EHCP is poor, it would be better to support the parents to appeal than to tell them what your colleague is telling them.

Hi OP I work in SEND in a mainstream secondary and I totally get you. I have lost my cool several times with non educational professionals who seem to have zero understanding of how intrusive and negative they are being.
I was so shocked at first, and I'm a veteran of really difficult schools in economically deprived areas. My perspective is different from yours but I understand what you mean absolutely. Once or twice I have been speechless at the combination of terrible bad manners and just unreasonable behaviour from people who should be helping!
Also my lovely senior colleague always reminds parents of children with EHCPs that they aren't compulsory and parents can chuck them in the bin if they want to. I've seen some that are so poorly written they have a negative impact.

MN is feeling increasingly hostile to families and individuals with disabilities in the last couple of weeks

I couldn’t agree more, @EHCPerhaps.

Some people forget or don’t realise in 99.9% of cases if you EHE there is no support from education at the LA when DC with complex needs require therapeutic provision the vast majority of parents can’t afford to fund themselves and the NHS don’t provide or don’t provide enough of. Even the rare minority who have a small PB for EHE don’t receive everything they need. It is usually limited to a tiny amount compared to the needs of the child.

I have 3 DSs with EHCPs. 2 of whom don’t attend school. But I don’t and couldn’t EHE. I don’t have the money to provide the provision they need. Their bespoke packages are very expensive. Not to mention other things like DFG funding, carers, respite. So we remain in the relentless system where every agency tries to pass the buck and argues among themselves as to who is responsible.

I had a similar rant just this week. It's our annual review coming up. I had to fill out a parent form. Then two days later I got asked to fill lut a form on my sons views with him. So that's two hours gone, when you see the form. Then when I asked for copies of any reports that will be reviewed, they won't be ready until the meeting day. Which makes the meeting day pointless as none has read the reports, only my views. So that's another two hours, then I have to chase and follow up the changes.

Someone on twitter has 'meetings aren't outcomes' as their bio, so I really think this resonates with a lot of people.

I agree about the case officer thing too. My LA, each case officer has so many cases it's literally impossible for them to do any meaningful case management.

If there's meetings going on, particularly the intrusive at home ones, that you don't feel are achieving anything, then speak out and tell them. Stop or reduce them.

Absolutely this, I made it clear that I didn’t have time to just keep talking about the same stuff over and over again so unless they actually had something helpful to offer I wouldn’t be attending meetings. So while I’ve had a lot of meetings recently, there’s some very clear goals and a wider plan to work towards. I can’t keep taking time off work for someone to tick a box.

I also have as few meetings at home as possible. I’ll either do them online, at the other persons office or at school - the only professional I see at home is the social worker because it’s easier for me.

I think the problem is with SEND (as with healthcare) that there's no "case management" so there's no-one actually in charge. Hence all the meetings and calls from people who don't speak to each other and don't know about any background or any details of other treatments/therapies/arrangements.

The LA is supposed to have a person allocated to each EHCP.

I have never met or spoken to ours. They're hardly going to be co-ordinating anything on our behalf! Especially as LA people don't last long in jobs and are constantly off sick or on leave.

I know how exhausting it is and I don't think our situation was as intense as yours.

Sometimes I think teachers, social workers, attendance officers etc are so focused on the system they don't actually realise the damage they're causing.

Do you really need all of the phone calls and meetings? Are they actually helping anyone?

It is OK for you to say that the quantity of contact is overwhelming and needs to be reduced.

Request school phone calls only if absolutely necessary.

Perhaps a short written summary of his day or week to come home with him that you can look at, at a time that suits you.

Are all the meetings actually achieving anything? Will anything actually change because, as we know, SEN doesn't go away just because they talk to "mum" about it. If there's meetings going on, particularly the intrusive at home ones, that you don't feel are achieving anything, then speak out and tell them. Stop or reduce them.

Our school once asked me what they could do to help. I said to leave us alone to deal with things and to know we will ask them for help if we need anything specific. It actually helped.

Remember you can only do what you can do. You can only control your actions not others.

I went through this years ago and I can totally relate.
I found it did get better.

But the invasion of any sort of privacy was awful to deal with.