SEND - children’s needs to be reassessed from year 6 2029?

[missbish]

Are they taking the piss? After the struggles parents have trying to secure support for their child, they’re then going to threaten to take it away once they’re due to go to secondary? Ds goes to secondary this year so I don’t think it will effect him but I am so angry for those it does effect.

No.

Many of them worked and coped ok until the ‘world of neurodiversity’ opened up and encouraged introspection and convinced them they’re immutably disabled.

Okay.

Well any parent of a disabled child will tell you that life isn’t fair, and it’s a fairly strange take to be jealous of our families and the reason they need those extra resources.

It’s really a horrendous way to live, at points, and you don’t actually want the resources because that would mean facing the challenges that warrant them.

I’m not jealous.

I’m talking about policy and public expenditure.

You’re not.

You’re talking about who you think is disabled or isn’t (nobody asked, btw) whether parents actually just need boundaries, and whether people with invisible disabilities should just get a job.

You are having a conversation about your views on disability, cloaked by “isn’t it expensive though!”

It's unfair that some children are disabled. Life is unfair, isn't it?

It's nothing about 'worthiness' otherwise you're saying the vast majority of children (who get no specialist support) are 'unworthy'!!! There will be millions of children right now who struggle like your son but perhaps not quite as much, so don't quite meet the threshold for additional support - are they 'unworthy'?? Of course not, that's just using emotive language to try and stir things up.

There just has to be a threshold, a line drawn to determine a point where a child's needs are great enough that they qualify for extra support.

No matter where you draw the line, there will be children who closely miss out on extra support, who would nonetheless have benefitted from it.

The question is where do you draw the line. Where is the threshold. Sadly this comes down to money - you draw the line at the point where you can afford to pay for the support for all the children qualifying.

Right now, the line has been drawn such that more children are qualifying for support than we can afford to pay for, so unfortunately it has to be repositioned.

You can’t discuss the expense without discussing the rise in numbers and the reasons for it.

With respect, a lot of parents are far too close to the situation to be able to step back and see the bigger picture. Everyone swears their child is very complex and in need of very expensive support and high level intervention, and that they’ll unalive themselves if they don’t (like with transgender) - thankfully suicide rates in young people are far lower now than the 1980s, so despite this apparent ‘mental health crisis’, thankfully it hasn’t actually resulted in that final worst case scenario.

All this endless introspection and complicated terminology for little understood conditions which are very nebulous and have basically exploded in the last 10 years alone is doing little good it seems. Teens and children had better outcomes before the advent of ‘neurodiversity’, and while this is probably also down to life now being more pressured, I honestly think this world of online information bombarding everyone with the idea that they’re different and disabled is not helping.

I acknowledge this is all controversial but we need to go back to basics. No bloody tablets for under 12s, dragging parents off their phones so they have to interact with their kids. Doing away with helicopter parenting which is making children anxious. Proper socialisation and firm but kind boundaries. Not hitting the panic button and phoning CAMHS every time their child is very unhappy.

It is all sickening. I've begged my council to assess, they have refused. It's over 5 years since I applied for the ehcp, no assessments were even made at the assessment stage. The ehcp was granted through tribunal, however the ehcp has NEVER been implemented by any school nor the la.
That's 5 years of no education, no provision no assessments.
I'm exhausted by the failures, you go to multiple tribunals, but anything they order doesn't get put in place, you complain to the tribunal, but they reply that they can't enforce their own rulings! You go to judicial review, but the la say "they are doing their best" so the judicial review gets closed! You write to your mp, the head of education etc etc, but they don't bother to respond. You make numerous complaints, you head to the ico, nothing gets done. It's a constant battle and fight, and you just get nowhere. They've stollen my motherhood and my child's childhood, and future. It is all scandalous, it will come out one day but I will probably have had a heart attack by then

You give yourself away putting neurodiversity in quotations.

It’s very hard to not “helicopter” parent a child who will throw themselves out of a window otherwise, or will die without your medical input. A child in my son’s class isn’t expected to see 12 years old. He’s 9. I’d be very surprised if his mum and dad ever sleep.

We try to give our son space. But last time school gave him some independence he threw himself into a lake.

I actually adopted my son, he’s not mine biologically. His bio-mum gave him up completely, because at 6 years old - she thought genuinely he was going to kill her.

A woman in my hometown killed herself and her autistic 8 year old, because (I’m assuming) she had nowhere left to turn.

People are responding to you with emotive language, because it’s an emotive subject.

I can absolutely acknowledge that the “line” a PP refers to needs looking at, and it may move, but being ignorant to the real world impact of that, doesn’t help anyone - certainly not the people it actually affects.

I can promise you that millions of children out there are not struggling like my son if they don't meet the threshold for additional support. My son wouldn't be in school without any additional support though I suppose that could very well be tested if his EHCP is taken away.

I was talking about it in a certain context with pp acting like only some disabled children with visible disabilities should be eligible for additional support. Of course the majority of children who don't require additional support aren't unworthy.

My child is autistic. They cope perfectly fine in school as long as there is a calm atmosphere. In fact they are extremely high achieving- it’s part of their autism. They understand everything STEM. Regularly get full marks in exams etc.

We are in Scotland which has heavily ascribed to the ‘inclusion’ mantra over the past few years. It’s been disastrous for my child. Violence and disruption are rife. There is no calm at all, and when things are calm there is the anticipation of the next meltdown from a classmate. So we got our child out of there into mainstream private school which has been excellent as they acknowledge that a calm, safe environment is vital for learning.

We need to acknowledge that ‘inclusion’ for those who cannot cope with mainstream is exclusion for the likes of my child who needs calm. It also damages the learning of the majority who just want to learn in a peaceful, safe environment.

I predict the move towards inclusion will be utterly disastrous for English education and they’ll join Scotland propping up the bottom of the international education attainment statistics.

So our young people self harming, overdosing, using ligatures, starving themselves, ending up in hospital over and again etc is ok because the worst case scenario hasn’t happened. Got it.

There has been a decline in suicides in young people since the 1980s, when these diagnoses were vanishingly rare and there was no ‘neurodiversity support’. I’m bloody glad nobody has died by suicide, or starved themselves to death, but how do we know if it’s a serious threat unless that happens? Threats of suicide seem to have become commonplace where the person wants a specific treatment.

My children go to a generic state special school. All children have low IQ. The vast majority of the students are very noticeably disabled (non-verbal, nappies, or severe language delays, rocking, running around screaming) and only a few physically disabled (e.g. PMLD). Having spoken to several people working in schools like this, the proportion of that physically disabled PMLD profile is actually increasing. Most of these schools say that 20 years ago they would have whole classes of verbal children with borderline LD (but still very low IQ, e.g. 70-75) and only tiny minority of PMLD. PMLD is now actually more common than it was but because at a population level it is still very rare it isn't seen very much in society.

These special schools have also said that the very dysregulated severe or moderate learning disabled children with high complexity is also increasing rapidly and so balancing all these different needs in state special schools is increasingly challenging.

These dynamics are never really discussed when it comes to this debate - the focus is usually on the (also rising) SEMH cohorts with broadly average IQ. It's not just SEMH that is rising. While something is clearly happening to cause all SEN to rise (so many factors!!), it's not true that special schools used to just have PMLD and Down Syndrome in / now there's just this surge of naughty SEMH pupils taking up all the special schools. There has been a huge rise in very severely (and pretty obviously) disabled children which cannot really be linked to parenting (no amount of screen time etc causes a non verbal 12 year old). It was much more normal for children with severe LD to go to residential schools whereas now that's actually pretty uncommon (even where these children need 2:1 or are badly hurting their parents etc).

Oh and all those SEMH pupils of the past - they were in borstals, or children's homes, then PRUs or had dropped out of school/ truanted/ worked for Dad and no one picked them up.

I think there needs to be an urgent enquiry into why so many children are ‘dysregulated’ that the only way they can be managed is 2:1.

DS1 has 2:1 because he has complex (not my word. The word of every report/letter written about him. The word of courts.) physical, medical, psychological and developmental disabilities. That includes significant SEMH needs. His complex MH needs means he is under a specialist CAMHS service. He takes a cocktail of drugs for his MH. Previously attended a tier 4 CAMHS unit as a day patient. Only avoided an inpatient admission his medical needs would make a CAMHS admission difficult and there were even fewer beds he would be able to be admitted to. He is profoundly disabled. Again, not my word. The word of every report/letter written about him. The word of courts. He needs 2:1 to keep him, staff and others safe. Not just in his education package, but as part of his continuing care funding, too.

DS3 has 2:1. He also has complex needs as recognised by every professional involved. Again, not my word. The word of reports/letters from professionals. The word of courts. His primary need is not SEMH. His primary need falls under the C&I umbrella. When everything is going well, the 2:1 isn’t needed. The problem is, it can turn on the flip of a coin because of the sensory environment, communication, interaction, and so much more. It isn't predictable.

Why? If they struggle with going into school, they get overwhelmed just by being in the presence of others, and want to do everything in a self lead manner, wouldn’t an online package be the best and most financially viable outcome for everyone?

This is why people are saying your posts are ignorant. You lack understanding of SEN and how it can present. Because online provision doesn’t work for all. It doesn’t work for my DSs. It would be no more accessible than school. Child-led doesn’t mean what you think it does. It doesn’t mean providing online (or in person provision) and leaving the child to it to work (or not) through it on their own.

Nobody has the right to an education that is the best that money can buy and meets their every need and preference.

This doesn’t happen now. Not matter how much you think it does and how many times you want to write it. The current law does not entitle DC to the best possible education.

we have to move away from providing specialist provision for what are ‘SEMH’ conditions

So not ASD then. Because that isn’t a ‘SEMH condition’. It falls under the C&I broad area of need, not SEMH. Many with ASD will also have some SEMH needs, usually as a result of unmet needs, but for the majority of autistic pupils, their primary need is not SEMH.

I’m sorry but I don’t believe an able bodied person of average intelligence is disabled. I just don’t. They may have a personality/mood/MH condition, but they’re not disabled.

You are wrong. And ignorant. DS3 is highly intelligent. He has autism, a range of co-morbidities and some medical needs, including an LLI, but he is able-bodied. His needs are so complex (as a reminder, as per my previous paragraph, not my word). it is inappropriate for provision to be made in a school or college. The LA consulted 41 establishments. He is also in receipt of a social care package. He is unable to be left alone. He needs help with many ADL. He has overnight enteral feeds. He has a blue badge. He is disabled whether you want to think he is or not.

DS2 is able-bodied and of at least average intelligence. He has ASD, ADHD and some medical needs. He has an EHCP in MS. He is also in receipt of a social care package. He is disabled. Every professional involved recognises that.

Many with personality/mood/MH conditions are disabled.

unfair

You don’t have to tell parents of disabled DC what is unfair. Their DC being disabled is ‘unfair’. Many (not all) disabled DC learn early on that life is not fair.

Teens and children had better outcome before the advent of ‘neurodiversity’

Not my DSs. They would be dead. On account of their LLI.

bloody glad nobody has died by suicide

Except they have. The Times ran an article yesterday covering 20 deaths of DC with SEN. There are more. They were just some case studies.

@Kirbert2 irrelevant to the discussion on the white paper, but if you haven’t already, please look at secondary placements now. Not many secondary schools have hygiene suites/changing places style toilets. You will need to begin discussions early because a school may well need building work to make it work for DS. Even if there is a school with such facilities, if it isn't your preference, you can push the LA to provide funding for another school. There is also a problem in some schools with them having lifts that don’t work and haven’t worked for a significant amount of time. If that applies to your preferred school, it will need resolving in good time.

Canada

I wouldn’t be holding Canada as the pinnacle of inclusion. They have significant inequality of SEN provision across the country. More-so than in England. I have heard some shocking experiences of how DC are not supported in mainstream.

@Changeusername1989 if you can’t afford independent assessments and you aren’t eligible for legal aid, which can fund independent assessments where necessary, have a look at charity funding. One example is Parents in Need but I have used evidence from other charities when helping others too.

Is alternative provision in place if DS can’t attend full-time? Is the part time timetable because DS can’t attend full time or is it being imposed by the school as a way of unlawfully informally excluding DS?

the la say "they are doing their best" so the judicial review gets closed!

Did you challenge this decision? Because the s42 duty is absolute and non-delegable. It is not a best endeavours duty. If the court erred, you could have challenged the decision. You shouldn't have to, but I wanted you to know it is an option in case you weren't aware.

I find the focus on independent SS but not NMSS interesting. Some NMSS cost far more than independent SS.

Thank you, that’s really interesting and well explained.

Yes I tend to agree

@ExistingonCoffee He has AP, can just about manage the independent reports but we shouldn't have to.
Like a lot of parents and children shouldn't have to.
But we should be grateful for a basic online provision and be done with it by the looks of it.
(I know you are supportive and I thank you for the help and support you have shown people).
Shame others can not be the same.

@playingvideogames And yes children have died because of the lack of support! And suicides are rising again.
But you know because they aren't at the level of the 80s then thats all ok.

Seriously Im actually blown away!

"I think maybe the fact it is going to be more centrally funded and independent specialist will be regulated are potentially good things?"

I think the independent specialist sector definitely needs looking at. There is a real issue at the moment with them refusing the most complex children because there is more profit to be made in the not so complex.

@Changeusername1989 you are right, you shouldn’t have to. No-one should. It is exhausting and relentless.

This I totally get! I have seen APs and independent provisions cost ridiculous amount of money and the government are in there rights to question it!

I don't think the word 'visible' was used actually, you've chosen that word. People have talked a lot about physical disabilities, it's not quite the same. Again you're using emotive language to try and stir up outrage.

That’s interesting. I think a lot of people have a vested interest in pretending that the rise in children with SEN is due to bad parenting or parents exaggerating their children’s needs, which is probably why they ignore the rise in children with more obvious disabilities where they can’t blame the parents so easily. Not that I think less obvious disabilities are the parents fault, just that it's easier for people to make out that they are.
Do you think the rise in children with PMLD is due to more children born very prematurely surviving, or are conditions that cause PMLD more likely to be genetic like Rett syndrome and things like that?

I definitely think the independent sector hold LAs over a barrel and often charge frankly obscene amounts. That said, the independent sector fills the gaps - that's why the LAs are forced to use them. Caps or restrictions on using the independent sector are not going to work if viable state alternatives (particularly in the form of all kinds of state special schools) are not increased.

Where will all these kids go? I guess it could be argued (as the white paper suggests) that these children can remain in mainstream with additional, inclusive supports but there's going to be one hell of a fall out when people have children in their own kids' mainstream schools.