To ask for people's experience of SEN provision

Thank you. Sadly, I am familiar with the EHCNA process, having worked for the LA and submitted a parental request for my DD which was refused, even with multiple diagnoses and reports.
Whilst 'officially' you may not need a report from an external professional the reality is that in my area there is zero chance of acceptance without one. School are happy to have an Ed Psych or Specialist Teacher assess DS to obtain this evidence but they have been honest that he is in for a long wait. I now work in schools and some of the applications I've seen refused recently are genuinely mind-boggling, the LA are determined to cut down the number of EHCP's.

Months out of school and no education at all.

This is another example of what I mean about DC whose parents know the law and can advocate and enforce their rights. Anyone in ^this scenario can enforce their DC’s rights to a suitable full-time education under s19 of the Education Act 1996. They can do this via judicial review if necessary.

We had to really battle to get DS 1-1 support in his EHCP. DS had had the support all through primary but secondary didn’t want to provide him with the support.
The LA finally agreed to write it in and DS was allocated a 1-1. DS had one person 80% of the time and other people the rest. The other people were great and understood how to support DS. The main person was really resentful of DSs support as she felt there were other children who needed it more - DS was in year 8 by this point so could feel the resentment. Ultimately the placement broke down and DS was on an ever decreasing reduced timetable, the lack of support from this one TA played a large part in that.

We hired a solicitor to help us get DS into a specialist independent school which the LA agreed too before we got to our tribunal a DS was lucky that he started his new school at the start of year 9. This cost us a lot and the LA, not only did the LA have to pay for school fees but also transport and therapies.

Even if you get support written into the EHCP the people delivering it may do more harm than good.

OP I agree the single most effective main thing here is for all of us to contact our MPs. They are the only ones who can help here. Central government funding for local authorities has never been restored after dropping by about a third in austerity. As a country we have an ageing population to support yet we constantly point fingers at the expensive kids with SEN or sick or disabled adults who can’t work (which is our kids’ likely path if they don’t get support) and say they are the problem. This disablist scapegoating of one group over another is totally unacceptable.

I have DC who it’s well established can’t have needs met in state mainstream school due to autism, ADHD and sensory disorders, SEMH needs. All formally documented yet there is no capacity for a specialist place from the local authority. Months out of school and no education at all.

It’s ruined our earning capacity, physical and mental health, family finances, relationships, obviously worst of all impact on the DC wellbeing and education. We’re among the very luckiest in being able to scrape up money for a much smaller class even just temporarily so they now get in theory some form of schooling. But this is nothing like what going to a specialist school appropriate for their needs could do for them- small class sizes is only the start of what they need.

It’s very depressing seeing rampant illegality by local authorities who are up and down the country desperately trying to avoid spending money which they by law are obliged to spend to meet children’s basic educational needs, but they don’t have the money to do it.

The Tories just ignored it all and then said that ‘sharp elbowed’ parents of kids were ruining local authority finances.

Labour’s response so far is just to say almost all kids should be back in mainstream. Obviously this approach will backfire massively for the NT kids as well, so there may be an uproar. But we all know as parents of kids with additional needs that parental outcry doesn’t always get listened to. So instead of causing predictable parental division and failure of children in mainstream schools, there should be long term and impact-assessed thinking being done on this. Where is that coming from?

My experience is DC whose parents know the system/law/don’t believe the myths perpetuated, can advocate for them and enforce their rights get better support. It shouldn’t be that way and fails the most vulnerable, but it isn’t going to change in the foreseeable future. My DC have the provision they do because we enforced their rights. They wouldn’t have anywhere near the level of provision they do if we didn’t.

@Burntt you don’t need money for JR. JR proceedings themselves are brought in the child’s name for breach of section 42 of the Children and Families Act 2014 and section 19 of the Education Act 1996 so DS can be eligible for legal aid in his own right. That wouldn’t cover the pre-action letter. For that, you may be eligible for legal aid in your own right. If you aren’t but can’t afford a pre-action letter, you could wait for SOSSEN’s waiting list to reopen (it is shut at the moment).

@neverbeenskiing you don’t need a diagnosis or report from an external professional before submitting an EHCNA request. You can get EHCPs for academically able &/or masking DC. Although you may have to appeal. They are myths some LAs/school perpetuate. You can request an EHCNA yourself using one of the model letters on IPSEA’s website.

My experience is out of date as DS is an adult now (diagnosis and EHCP rates have gone up massively just in the last few years). He went to mainstream state primary and had signs of autism & ADHD from age 4. He was academically fine but had many sensory issues and became disruptive in class, leading to violent meltdowns. He was excluded and sent to PRU. Diagnosis and an EHCP took a long time, requiring many assessments, multiple tribunals and input from a specialist education solicitor. But the EHCP was eventually awarded when he was 10, and when he went to secondary an independent residential special school was named. He stayed at that school until he was 19, with all fees paid and a taxi and escort for transport. The school provided all the input set out in the EHCP, they had in-house therapists and all staff were trained, so once he was in the school I didnt have to keep fighting for provision to be made. It cost over £150,000 a year, and that was over a decade ago, so fees must be much higher now.

It was never an option for me to simply pay for a mainstream private school myself - I was a single mum on a low income, and I relied on benefits for quite a lot of his childhood as I needed to stop work to be a caree. And by the time he got an EHCP, his behaviour had deteriorated so much that he needed more specialist provision, not simply small classes sizes and a bit of extra pastoral care, so only special schools would offer him a place. I think if you have money and perhaps a less disruptive child, then it must seem easier to try a mainstream private for the small class sizes and calmer environment rather than dealing with the stress of getting an EHCP and a special school placement, but for more severe cases or when parents have limited finances, then that isn't really an option.

My eldest child is in Year 6 and diagnosed with Autism, ADD and Dyspraxia. She is academically bright but needs a lot of support with social communication, sensory needs, and experiences very high levels of anxiety. She can easily do Maths that I can't even attempt but needs support with basic self care like toothbrushing, hair washing and choosing appropriate clothing for the weather. She finds the school environment completely overwhelming. She won't eat anything in school and drinks as little as possible to avoid using the toilet, resulting in frequent UTI's. She will pick her skin until she draws blood. She will have explosive meltdowns after (and sometimes before) school where she will scream, shout, throw things, bang her head on the wall. But in school she appears quiet, compliant and just looks like a deer in the headlights. Because she's making progress academically and her behaviour doesn't impact on others in school she doesn't qualify for an EHCP. Her primary school is small, nurturing and behaviour is generally good but she still finds it overwhelming. The smallest state secondary in our catchment has over 1400 kids, and all the schools we've visited have been big, busy, noisy and so overwhelmed with SEND needs that without an EHCP there's little chance of any real support. We fear she would either end up in Mental Health crisis or simply refuse to go. We have reluctantly made the decision to send her to a local independent school for Year 7. It's small (smaller than her primary), calm, and they have an excellent reputation for SEN support. If that wasn't an option I would probably have to quit my job and Electively Home Educate her, which would be devastating for me personally as I love my job but I would of course do it if I had to.

Our youngest child also has an Ausitm diagnosis, he is in Year 1 and already struggling in school. He is also bright but really struggles with hand-writing and ideally needs 1:1 or small group support to stay on task as he is so distractable and cannot stop moving, but with a class of 30 children with various needs and one Teacher supported by one TA this isnt possible. He was having Fine Motor Skills support in school but the TA who was trained to do this left and has not been replaced. School are convinced he has ADHD but in our area there is a 4-5 year wait for an assessment. If we pay for a private ADHD assessment and he needs medication down the road then we could potentially be in for years of expensive private prescriptions and medication reviews as the GP may not be willing to do a 'shared care agreement' and we know other families who have fallen foul of this. The senco at school has said they need "a report from an external professional" to submit as evidence for an EHCP application, but they have 20+ other kids on their waiting list for time with the Ed Psych and no money in the school budget to purchase additional Ed Psych hours. Because his behaviour is not "unsafe" in school and although he's not reaching his potential he's not massively behind (yet) he's not high priority. His Teachers do what they can, they give him regular movement breaks, he has access to sensory equipment, they've referred him for Play Therapy and done a lot of work with him on social communication. My concern is that as he gets older the gap between what he's achieving and what he's capable of achieving will get wider as he gets older. We may well end up sending him private for Year 7 as we have with DD, which I don't feel great about morally and I know it's incredibly unfair for children who don't have the option. His Teacher has identified that he is "easily led" and "very suggestible" due to his Autism, he hates being in trouble but is very trusting and if another child tells him to do something he'll do it. I worry about how vulnerable this could make him in future.

I was ‘lucky‘, though it nearly did for us as a family. DD is early 20s and diagnosis of primary condition was from birth. She had support at nursery that translated into statement at primary. We were on the process of being managed out of LA school that catered for affluent and high achieving primary so we moved.
At Second primary in totally different area, she was diagnosed with SpLD v easily in fact I didn’t know until they asked permission for an Ed Psych assessment.
Then came austerity and move to secondary and all hell broke loose. I fought and fought for what was on the EHCP to be done, for Camhs, for EOtas when she was out of school for a year. The special school she attended eventually was private and boarding but 80% of kids were LA funded.
It worked but every time DD met targets the LA tried to change placement back to mainstream.
I’m a naice middle class person whose job involves complex research. I ended up with time off and a breakdown. DD’s siblings lost out on time I had to spend fighting.

What got me was fact of a medical diagnosis and extensive reports of how conditions affected DD but LA disputed every which way they could.
I have volunteered for the charity that helped me and to see LA and Sendcos lying and refusing to see what’s in front of their faces makes me 😡😡😡. They deliberately try to ignore parents who are struggling themselves to understand the process and have v low expectations for children ie they judge the parents’ class and level of education.
I wear my smartest clothes to meetings and enjoy every moment I can show when LAs have got the legislation wrong.

My son has autism and learning difficulties he's in year 5 and he's working around year 1 level. He has an EHCP

Personally for DS/me i feel it depends on the TA year 3 DS had Mr S he was excellent build DS confidence helped him was always sitting with him helping him with his work adjustments etc . He's TA to the class as well but it seemed to be a good balance.

Year 4 a different TA she did next to nothing with DS very rarely helped him. Never spent time with him for the help he needed. He hated school. Used to get really upset and stressed. He learnt nothing . Its like the EHCP was ignore .

Year 5 he's now back with Mr S he's need are being met again. He's learing. He's building confidence again.

All that is to say - our school geographically is in a naice area, most parents are wealthy enough to afford private school, but don’t bother for primary. They are in a higher tax bracket than my family. Much higher. The other SEND parents simply send their children to a local SEND private school/after school activity centre that I cannot afford, so we are stuck trying to provide what we can with peanuts in our pocket.

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.

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.

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.

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.

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….

YANBU

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.

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.

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

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.

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.

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 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.

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.