To ask for people's experience of SEN provision

[RhaenysRocks]

First of all I don't want this to turn into a thread about VAT and private schools. On those threads there has been lots said about SEN kids only finding suitable provision there after state / CAMHS / the EHCP process has failed them. People comment on "where is all the outrage about the state failings". This morning there's a thread about a non verbal autistic child not in school whose relative is concerned..she had no idea there was an issue with places for such children.

The SEN board is great but AIBU is where the traffic is. Could those who have battled the system for years to get help, provision etc please tell their stories to try and raise awareness about just how bad it can be. I know there are success stories, it varies so much, but maybe if people who have had no dealings with this system find out a bit more, there would be more pressure brought to bear.

YABU...we don't need to know
YANBU...It's important to get this info out there

Private schools don't have to give any child SEN support so it's very rarely a solution.

What I've seen happening in the schools is that parents who have greater means seem to get better help for their children than those who have social barriers. Sometimes they take away from a child whose parents aren't sure what they should be getting to give to a child whose parents do know.

There was a situation at the kid's school that really made me think about what's right. Of course we are in a situation where everything the things kid's are allocated on their EHCP cannot be funded. Most children are allocated some 121 hours with a TA and these are really meant to be 121. However, in most schools, this looks more like a TA providing support to more than one child, anywhere from 2 to 5 depending on their level of need.

Some parents are fine with the small group support because their child's needs can be met that way and they see other advantages to them being in a small group vs alone. Other parents insist that all support is 121 as allocated. If you're a robust enough parent, you can insist on this and the school will be left no choice but to give it to you at the expense of another child. They can't afford more staff.

Do you mean just experiences of SEN in private schools?

No sorry, not at all. I mean what's available to the vast majority who can't afford private or for whom that wouldn't work anyway. It is actually the case @JustAskingThisQ that many have found a small quiet mainstream private has been able to meet need but obviously that route is not an option for most. I would also include in this the necessity for seeking private diagnoses due to unfeasible waiting lists. I was at a workshop at the weekend for ADHD and all but one of the attendees had gone that route due to significant delays.

From my understanding, on the whole, private schools do not take "disruptive" SEN kids because other parents don't want their paid for education of their children to be disrupted like that. If you're one of those "useful" autistic people with an affinity for maths and an eidetic memory, then you might be welcomed.

Mainstream private schools are not an option for a huge swathe of SEN pupils - conflating the two massively simplifies an incredibly complex situation which has been utterly devastated by funding cuts. Most of the SEN kids I work with could absolutely not have their needs met in a mainstream private provider.

There are different sorts of Sen needs. What was previously known as Asperger’s (highly academic, socially awkward) and dyslexia needs are often met excellently in private. Dealing with these in mainstream is hard as the Asperger’s children need calm, and calm and mainstream don’t go together. School is just a distressing experience for these kids.

Dyslexia is often just ignored really, for all the extra time in exams given, and the use of a computer in class etc a dyslexic child will still not achieve what the could unless they have one to one personalised help. Private dyslexic tutors are excellent in this regard.

if your child is non verbal or having frequent violent outbursts you need to access a permanent space in a specialist school. This is an exhausting process of fighting for an education for your child. It’s exhausting.

its so true what was said above. The outcome depends on the resources of and effort made the parents. It shouldn’t be like this but it is.

For many autistic children, their primary need is in the area of SEMH (social, emotional and mental health) rather than learning difficulties, although subtle difficulties with processing language might be present (DD2 qualifies for 25% extra time but is reluctant to spend any more time in a test situation than is necessary). Rigidity of thinking, struggling to navigate social situations, the stress of ‘masking’ your condition and dealing with sensory issues (smelly canteens; classmate rocking their chair) can all be a recipe for anxiety that is often overlooked by teachers not because they don’t care (unless you count DD2’s Y6 teacher in Twickenham 😒) but because they are overstretched and have to focus any SEN capacity on those with more obviously presenting needs. Class TAs are fewer and farther between these days and are often supporting children with more obvious needs or covering for teachers. I can see why smaller class sizes (and a smaller school overall) as found in the private system, where teachers have more capacity to be alert to these more hidden but genuine needs (autism is a neurodevelopmental condition that can legally be regarded as a disability), would work better for many such children. Families shouldn’t have to resort to this but resources to support learning needs are inadequate and those to support SEMH needs are right at the bottom of the priority list in mainstream state schools.

I'm not year in... only months but the system is stacked against those who can't afford private diagnostic pathways and indeed it's also difficult to navigate what speacialist you need - I found it overwhelming and confusing. So it's stacked against those who can't navigate it for whatever reason

So far we have:

£850 - peadritician (local specialist in this area and practices in the NHS) to basically give us a pathway and reccomend professionals and services. Almost like a project mamagement / a gatwwaty and path for what's needed eg:.

£850 - Occ Therapist at home assessment
£650 - Occ Therapist school assessment
£600 - Speech and Language therapist school assessment

Then the peadatrician will read these reports and suggest what type of diagnostic assessment she will perform. I'm not going to be surprised if that is at least £3k

Then we also might be paying for ongoing in school therapy 1:1

All the above doesn't take into account the time parents and teachers need to fill in forms with examples to detail the child's traits / struggles/ history

The Sendco at school couldn't tell us what professionals we should engage and how and what type of assessment needed. The Internet was equally as confusing so the initial £850 was well worth it.

My point is... well before you enter into battling for ECHP or tribunals and finding funding for schools its an uphill struggle to just to kick it off and project manage it all. Nothing seems to be set up in a way to manage and direct the intake quickly and with ease (assume the waitlist issue then follows)

This is why many years ago LAs didn’t take private diagnoses because of the unfairness of it for those many families who can’t afford that route 😢. Demand is too much now so we have to accept them.

I hear you very unfair.

And I suppose this time it's me saying "but for my child thats ok"

I do have guilt when I send the money book the appointment but hope that at least it's one less NHS space being taken

Two tier ism is rampant in health and education.

The other thing to note that even if the LA didn't accept private diagnosis, the parent still going this private route are still well ahead with their own education about their child. They can advocate better, change parenting style, do research, therapy etc and generally not be so lost

I think you mean stories like ours where we couldn't afford private diagnosis or schools or lawyer

We had to wait 18 months to get a diagnosis from the point of referral. It was prioritised as he was out of school and it was pre-covid so lists were shorter.

The point of referral was 2 years later than it should have been as everyone wanted to wait and see if he grew out of things.

The ehc needs assessment was rejected once, then went back to panel..

The ehcp took 39 weeks. He was not in school for that time period.

They then couldn't find a special school to take him.

Then a school took him on a part time basis. That school said they couldn't meet need.

He was out of school for another year.

The ehcp was reviewed and we went to tribunal which took 6 months and gave my husband a breakdown.

He then started at the right school. Part time and built up to full time. Each annual review we have to fight to keep the placement even though it was beginning to work..

All in all he had no or part time education from school years 3 to 8.

His placement is private, but it special not mainstream.

I have a child with Down's Syndrome. A very recognised, very recognisable condition about which lots is known. People with DS have a common 'learning profile' and tend to have similarities in the way they need to be taught etc. Children with DS tend to thrive in mainstream when younger (with the right support) and the majority will been to be in a specialist provision by secondary - there are exceptions both ways of course.

I think it's fair to say that all kids with DS will need an EHCP and all will need some level of 1:1 (usually full time). None-the-less I had to go to tribunal to secure this for DD. DD who at the time was unable to walk and completely non-verbal. What a waste of tax payers money it was to make me go to tribunal? Obviously she ultimately got an EHCP with full time (32.5hrs) 1:1. Anyway she is doing fabulous now and completely happy where she is. Still it's clear to me, and her teachers, that the gap between her and her peers continues to widen both academically and socially and she needs to be in a specialist provision for secondary. Seems like the council are going to fight us on that and no doubt we will be going back to tribunal.

This is an important point that people need to realise and I have learned through my work support group

Each annual review we have to fight to keep the placement even though it was beginning to work..

That is shocking

Also the burden on parents and then knock on impacts to mental health like @Frowningprovidence husband. It's shocking but not surprising. I cry most days and can't get out of a vicious cycle of panic and anxiety.

Glad your son has a place frowing providence. 🎈

I have a child with SEN, and also work within a SEN school, and a governor at a mainstream primary.

Funding cuts are often mentioned, but actually there has been a year on year increase in SEN funding, and on top of that councils are now being allowed to divert funding out of their mainstream funding into SEN to try to help. But with some SEN places costing 100k plus, and a mainstream place costing 5k on average, the books are never going to balance. Mainstream schools are feeling the pinch as their funding reduces to put more into SEN. On top of that they are being asked to take children with ever increasing needs. My youngest used to have 2 TA's in her mainstream class, and her progress was rapid, she has some additional needs but not enough to need an EHCP, she was managing just fine with that provision. The reception class who started this year had 10% (5 children) still in nappies, and another 20% with additional needs, of whom only 3 had an EHCP. Now the 2 TA's frok my daughters class are often called to reception to help with changing etc, and her progress has stalled, we were called in with 1 days notice to help with a local trip as they couldnt take her if we didnt, the staff member who was due to support was off after being attacked by a child with high needs. It's not the schools fault, they are doing the best they can, but fighting a loosing battle against the wave of children being inappropriately placed in mainstream, and funding being diverted into specialist settings at the expense of mainstream. There is a huge focus on the needs of children with significant SEN bot being met, and rightly so, but the impact on mainstream also needs to be highlighted.

In the borough where I work, SEN specialist places have doubled over the past 5 years, therapy teams have grown significantly to try to meet demand and therapy managers are recruiting as fast as they can to try to bring down wait lists, staff are working unpaid overtime, and the teams are also paying for some children to have private assessments where they are unable to see quickly enough. Vast sums of money are being spent to support SEN, but the wait lists and needs keep going up, it does feel like an impossible challenge for those working within it, and for the parents trying to get support, and I have no idea what the answer is.

I'm in the early stages of navigating this for my 7 year old.

It's exhausting overwhelming and I feel lost. We were told it was the gp who we needed to see then they told us it was the school. I got told its the school that has to process the forms and move things forward. But they haven't it's been a year,so now I'm doing it myself. There doesn't seem to be a straight forward path unless you pay money. And even paying money it doesn't seem straight forward I haven't found the information very readily.

We are currently saving for a private assessment. Meanwhile we manage my 7 year olds behaviour as much as we can but I know he is exhausted from masking at school. The school only seem to do very little as they don't see much of the behaviour meltdowns we see despite us telling them and really communicating with them. They only see when he refuses to go to school. Thankfully he is going at the moment. I've joined support groups and so many mums mostly have just given up work entirely to homeschool and are struggling to survive as there just isn't any support.

Ideally mine would benefit from a school that was more flexible in its approach. If he could do more forest school that would really help. We don't have the money for private school but he would probably be ones of the ones that would thrive there. But unfortunately it also means he is one that falls through the cracks at state because he isn't "visibly struggling enough" to meet the criteria.

I am terrified of what secondary school will be like for him. I can see the potential of us having to homeschool if the right support isn't in place.

My autistic kiddo was off rolled from his mainstream in reception because he was too difficult and there was no help available. I fought for 2 years to get him an EHCP fit for purpose. He cannot access SEN schools either as he's too academic. So he has no school place. He has educated other than at school (EOTAS) and the LA just don't bother to provide him with any of the EHCP. Legally they have to but I e been told verbally it's too expensive so they won't. Only option is a Judical review to force them but I don't have the money to do that as I can't work because I care for my child full time. Even if I won what's the point the type of school he needs just doesn't exist

Thank you all...this is exactly what I am hoping to raise awareness of. I had no idea how difficult it is even for well educated and financially comfortable people to navigate the system and just how many ludicrous barriers are in place until it became relevant to me. The private system, whether diagnostic or education is propping up the gaps and delays in the state..and I should say this is not intended as a criticism of individual teachers, schools or HCPs but the system as a whole, especially where EHCPs are refused and then granted after lengthy and costly battles

. I wish I could hear any of the front bench MPs leading on this. I saw a letter sent by a local MP to a constituant who had written to him asking for support and it was two pages of the most generic, uninformed, blaming the parents waffle..supporting fines for absence, no understanding of EBSA etc. Depressing.

My son has always gone to a special school, he's in year 10 ,a private school would never have been able to meet his level of needs and neither can a mainstream
I
The level of provision is very variable across the UK but in my LA we have four special school, s two of which are primary and two are secondary
One primary school and one secondary school caters for children with moderate to severe learning disabilities and the other two cater for children with severe to profound learning disabilities
We also have several autism hubs.

It’s having the energy to fight for the education your child is entitled to, without really having a clear picture of what they are entitled to and what you should be doing, while having the anxiety and exhaustion of parenting a child with special needs.

YANBU

Identified needs in primary, EHCP by yr3, diagnosis yr4, interventions (small group work for English/comprehension), different spellings than rest of class, Lego group, comic strip (1-1), social groups etc.
refused specialist school even though 2 yrs behind peers all through primary as too academic.

started mainstream while we waited for tribunal (applied Jan, tribunal dec), vomited daily in class, in small ‘nurture’ class, missed more than half of every week. School offered every support but failed to comprehend the environment was not suitable (too big, noisy, too many rules and demands that child couldn’t make sense of m, not able to self navigate etc) Lost tribunal but LA told to get Education Psychologist in, they agreed with us and I found independent school who accepted. LA agreed to consult, then rejected independent school naming mainstream where he couldn’t attend. Even talking about going into the school made child vomit. Was able to do other things, just not that environment (child described the noise of so many people ‘moving’ about the halls, called it ‘hell’). LA and school told me ‘every yr 7 finds it difficult to- I told them not every yr 7 carries a vomit bag around school!’
EP and Senco went back to LA who agreed to independent school.

child lost a year of school, I lost 2 years of fighting.

child now in right environment, going into daily, no vomiting, no uniform, no homework demands, no sanctions, Autism specialists, movement breaks. Child loving school.
i worry about LA pulling it cos it’s pricey.

no rest for send parents

I feel lucky we had diagnosis and EHCP relatively easily/quickly and huge primary support.

i know lots of send parents still struggling with refusals to assess, diagnosis delays, no idea how much they need to do to find the right environment, no specialist placements, huge mainstream schools, parent blaming….

My experience of SEND is that it hugely varies. Not only in the diagnoses, but also in terms of your geography, wealth, class status and the parents tolerance.
Our story. My son is in his final primary year. Since nursery school he has had clear SEND needs, which was written in his “handover” letter to the school from nursery.
This was ignored. In fact my son was totally ignored for two years, whilst I pushed and pushed for someone to do something to help him.
Eventually he got a dyslexia assessment. Dyslexia came back negative but “highly likely to be autistic”. Which meant more pushing from me again.
3 YEARS after that we finally got him an EP and HomeHelp and FamiliesFirst workers. Because the school kept telling me I was bonkers and it was in my head, despite having a piece of paper with it on in black and white.
I pushed until we finally got a Healios diagnosis. DSM-5 - Autism matching all requirements for a high functioning autistic person.
I had to be threatened with a knife before the school would accept his diagnosis.
We are currently in the process of getting an EHCNA, because the school refuse to do an EHCP and claim they help with “LEGO therapy” which isn’t helping anyone.
They’ve not had a licensed SENDCO until year 5.
They claim everything is too expensive, then say my son doesn’t cost them enough to put through a funding request.
Im constantly fighting the school, making complaints and generally having a go left right and centre, to try and get something, anything to help. But right now, my son, my precious first born is being failed spectacularly because schools like ours just don’t give enough of a shit about SEND students.
The head has said to my face “it’s ok, he leaves us in September, so that’s one headache gone”. I will fight for my boy with everything I have.

We had EHCP for DD from Y7, a supportive and well meaning ILS - many accommodations for DD. Who has Dyslexia, dyscalculia, ADHD - psychiatrists suspects autism too - basically classic Neuro-diverse.

But they didn't actually follow EhCP or give interventions which would help her learn basically she'd need 1-2-1 specialist teaching.

I don't know what I think about it - some kids just aren't school shaped - I don't know how much mediation we should put in to making them meet the yardstick we have set (5 good GCSEs etc.). Including medicating them so they can do it. That seems a very middle class worry - DD did get this actually but it's much more about surviving with self-esteem intact and then having a plan about how to make way in world when you aren't following the GCSE/ a level/ uni conveyor belt.

I often hear about the rise in children with SEN and how the massive increase in need is a burden to local authorities. But people have short memories. When I was at primary school, students with SEN were around. But they were labelled stupid, or naughty. Or they were sent to special schools, which were actually mostly for physically disabled children. Or simply kept at home.

A push for inclusion was important for those with physical disability who could actually manage perfectly well in mainstream and needed to be with their peers, no shut away from society. But for those with learning difficulties or neurodiversity, it was much more challenging.
But then most classes had nursery nurses / teaching assistants, the curriculum was not so academic, the testing and measuring against standards was not a pressure. There were no league tables.

As pressure on schools increases, the workload increases, the staffing decreases, the need to measure up is constant. Those children who might have coped in previous decades can no longer cope with the demand placed upon them and the lack of additional support in schools, and the incessant paperwork teachers now have to manage.

Some of this change is good overall, but it has a disproportionate impact on those children who are "a little bit different".

I despair when I hear people complaining about the huge increase in EHCPs. IF schools were not the way they were, a large proportion of EHCPs would not be needed. But they are.

I have two children with additional needs. One was fine, until she crashed out and everything fell apart. The second time around I fought for more support so that didn't happen again. Yet the LA deemed she didn't need an EHCP. So we went to tribunal. They conceded and we got a assessment agreed. But the assessment was bare minimum they could get away with, including ignoring the EPs recommendation that she needed specialist OT / SALT assessment. So the draft EHCP was written without the essential assessments being completed. Then they agreed to SALT assessment, competed by someone with no experience of the phase of education she was in and no understanding of her complex co-occurring conditions. So mostly useless. So the fight continues to get the assessments she actually needs, with specialists who actually know something about her conditions (which are not rare at all!). Timescales do not exist in the world of the LA. My LA misses statutory, legally binding deadlines over 96% of the time. And no-one seems to care. They lose 95% of tribunals. But still they make the wrong decisions until pushed. Which means that those children who have parents with the education / energy / time to fight get better provision that those that can't. The LA is supposed to be the support for these children to level the playing field and they are the ones who are creating a two tier system. They are failing the most vulnerable children and no-one seems to think this really matters...

And parents are made to feel like they are asking for the moon on a stick. When they just want the opportunity for their child to be supported in the same way as those without additional needs. The equality act is clear that adjustments should be made to remove barriers that are there due to disability. Yet this basic expectation is deemed ridiculous by those who are unaffected by it.

Fundamentally flawed and inherently unfit for purpose has been my experience. And having btdt, I would VERY strongly advise any parent of any child that has any form of SEND need to stay well, well away from private schools. The reality is often a lot different from what is presented.

And if you're trying to get an EHCP for your child in my local authority then you've got more chance of riding your pet unicorn up the street first. The latest figures for EHCP's being granted within 20 weeks is now in single figures. Oh, and you'll almost certainly have to take the local authority to a tribunal even to get them to agree to assess.