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.

What do you mean by "able bodied"? Is someone fully able if, for instance, they are unable to get out of their front door, or if they have massive allergies, or if they have something like Tourette's?

Where is the space coming from for all these mainstream hubs. I work in a 1 form entry primary school, the hall doubles as a dining room at lunchtime. The original school when built had just 4 classrooms with mixed yr1/2, 3/4 and 5/6 classes. These classrooms were then split in 2 so there are now separate yr group classes. We do not have a library. We already gave 2 prefab buildings in one of the playgrounds used for SEN, 1 of them is a purpose built sensory room. There is no space to put a hub. I imagine we are not unique in that. One of our classes has so many children with need that there are 6 other adults in the class as well as the teacher. Each class has a timetable for the sensory room and other prefab building as they are so small, they can only hold max 6 children.

Do you think access to special provision should really be based on someone simply looking disabled?

My son is a wheelchair user, he doesn't automatically need to be in special school just because he is visibly disabled. There's multiple examples of 'able bodied' children on this thread who clearly need access to special schools much more than my son.

The idea that children will fit neatly into one of seven education packages is a weird one. What happens with, say, a child with Down's who is also autistic? How about children with extreme versions of very rare conditions which are not anticipated in any of the packages.

The other major oddity is the fact that, if parents win an appeal against the school the LA has named, the tribunal won't have power to name an alternative: they can only quash the original decision and order the LA to think again, What happens to that child's education in the meantime? What is to stop the LA naming the same school, or type of schooo, again?

"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."

Lots of adults require 2:1 or higher ratio support including my son. Nothing new there.

Then presumably they just choose the most ideal option.

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

No, I didn’t say that.

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

You just seem rather focused on if children look disabled or not.

What would the alternative be? If they can't manage in mainstream, they can't manage. Would you want your child to be in the same class as a child who needs 2:1 support and doesn't have it?

Would you like more of those SEMH children in your children’s school?

The ones I worked with set things on fire, daily. Climbed on the roof to throw things at people. Brought weapons on site because someone owed them money.

How long before mainstream parents start rightly saying their kids can’t be kept safe because there’s an influx of challenging children, in their potentially already difficult schools?

Not long, I’d wager.

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

I don't think you will be happy with those children being in your child's class in mainstream.

They may not be disabled in a way that you recognise, but I can assure you that those living with it find it every bit as debilitating as having a physically disabled child. Those mental health needs you reference are very often secondary to undiagnosed or misdiagnosed, unmanaged, unsupported neurodivergence.

Because brains are split into sections called lobes. Some lobes deal with motor function, some with sensory function, some with communication, some with speech and language, and some with intellectual function. There are crossovers between them.

Many, many children have developmental disabilities that don't have a physical origin. Take DD1. It took until she was 2 years 9 months for anyone to listen to me. Until then I was told that I was neurotic, that I was 'reading the text books' and 'being a nurse'. She was falling over for no reason. I was told she had inner ear infections, that she was wearing sandals which caused unsteadiness.

I couldn't control her. I had to barricade her room with two stair gates stacked on top of each other, then I had to add a plank of wood at the bottom to stop her sliding out from underneath it. I had to use reins at all times. I had to get an electromagnetic lock for the front door and mount the switch high up in the architrave so that she couldn't co-ordinate pressing the button and pulling the handle down, because she had learned to climb over the stair gates on the porch door and escape towards the main road.

When she got to preschool, they scoffed at my concern that the door to a ramp was open, and the ramp ran alongside the building, so she was likely to walk off the edge of it. When I returned from her taster session, the door was shut and they said 'I see what you mean'.

She was quickly assessed as needing 1:1 support in preschool and the LA funded that immediately. But she only got seen at the hospital when she had witnessed falls at the preschool that couldn't have been trips or slips. Bear in mind that I had been taking her to the GP, telling them this for almost a year.

Even when seen at the hospital, they weren't going to give her any scans. However, they did do an EEG which showed epilepsy. That EEG showed uneven discharges in the brain, so a scan was recommended. The CT scan came back 'normal' and the paediatrician smugly wrote 'as expected'. However, he also ordered an MRI, which showed her brain malformation.

My point is that DD1 was 'able bodied' (although developmentally delayed and wobbly). If it was not for her epilepsy, we would never have got a scan and we would never have known that she has a brain malformation.

DD1's geneticist is convinced that she has a genetic syndrome. Genome mapping was in its infancy when she was young and she was entered into the Deciphering Developmental Delay genome mapping project. They couldn't find it. Then she was entered into the 100,000 genomes project. They still can't find it. The Baylor Institute wrote to the geneticist, asking for her records a couple of years ago. They had found a handful of genetic codes that were similar and wanted to compare the symptoms. I don't know if that will go anywhere.

Ultimately, DD1 is hugely disabled. She has no independence. She has just 10 minutes ago come to me to confess that she 'poured too much cereal' - she has massive impulse control difficulties - at the age of 20. DDs 2&3 get frustrated that she 'gets away with' certain behaviour, but the reality is that if I told her off for everything she did wrong, I'd be telling her off all day.

My point, if you get to the end of this, is that being able to walk, being able bodied, is absolutely no marker of ability to function. DD1 does use a wheelchair and is physically disabled now. But it is by far the least disabling aspect of her SN.

No, if they are disabled or not.

I think pushing a narrative that a child who has SEMH problems is ‘as disabled’ as a child that requires a feeding tube and wheelchair is a false narrative that is becoming damaging to society.

At work I’m surrounded by adults who think their ND is a reason to give up on life and not work and claim benefits. And I mean surrounded. I don’t work in benefits or disability, so they’re wildly overrepresented. This will only get worse if we continue to embed the narrative.

Nothing - nothing - has improved under this current model.

They’ll have to be, whether I like it or not.

Then you need to educate yourself. It’s a developmental disorder, it is a defined as a disability

@Playingvideogamesi feel sorry for any child of yours that maybe be born with a spectrum disorder

PIP and the LA disagree with you. DD3 is one of the most intelligent young people I know. She decided to learn to knit and three days later she had knitted a complex jumper using circular knitting needles and two colours of thread, by watching a YouTube tutorial whilst watching TV. She was on course for grade 9 GCSEs. In fact, 7 months after she had completely stopped going to school, I was still getting emails from the school saying that she had been selected for trips because of her Oxbridge potential. She was trapped in her room with OCD, unable to leave the house. The OCD was a result of her ASD and ADHD needs not being met and bullying by another child with complex mental health needs. She is very much disabled by it. It took a year for her new school to gain her trust.

You are ignorant. I don't mean it as an insult. I mean it in the true sense of the word. Ignorance isn't the terrible thing people say it is. I don't mind ignorance if an ignorant person is willing to be educated. I do mind people who are ignorant who refuse to consider that maybe they just don't understand. Try meeting a few people who have the needs you refuse to acknowledge?

So it comes back to children simply looking disabled again despite you previously saying that isn't the case?

Those adults are unlikely to be the children we are talking about here who will likely always need some form of support, including my son. You seem to think he somehow 'deserves' it more because he's a wheelchair user and I disagree.

EHCP's are about need, not diagnosis. My son doesn't even currently have any diagnosis. A diagnosis can be helpful but when it comes to a child needing support, their diagnosis if they have one is irrelevant other than maybe helping to decide what kind of support they may need.

Well. Fortunately you don’t get to decide what disability is or isn’t, or if someone is disabled or not.

That is quite far outside of your place.

The reforms are heading in this direction.

That’s fine. We can agree to disagree.

You think the general public are going to get to decide?

edit - typo

"I think pushing a narrative that a child who has SEMH problems is ‘as disabled’ as a child that requires a feeding tube and wheelchair is a false narrative that is becoming damaging to society."

If a child is able to negotiate their physical environment in their wheelchair, is able to cope with their tube feeds and is able to learn, they are not as disabled as a child who needs huge preparation to step into a building, be able to engage with people around them, and learn. It's just fact.

Some people who use wheelchairs are unable to move themselves, some can play basketball in their wheelchair. Some people who are tube fed are completely dependent on others. Others are independently able to manage their tube. That is why we have EHCPs which assess the individual needs of a child.

I just wanted to say that i really hope your daughter is doing better now. We're currently at the 'unable to get out of the house' stage of shutdown. Still our 9yo dd isn't considered disabled enough for some people.

We don't disagree. You are ignorant of the realities of SEN and have swallowed the rhetoric without applying critical thought.