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

If you think any professional is acting unprofessionally, have you reported them?It isn’t common. Professionals wouldn’t risk their reputation with SENDIST.

The fact you write “And then gets the LA to commission it from her company at £100 an hour” suggests the provision is then commissioned so it isn’t over provision, otherwise the parent wouldn’t have secured it in the EHCP.

Many years into this, and essentially have been lucky enough to opt out of the system.

Got ASD diagnosis when DD aged 7. Paid for privately, diagnosis accepted by NHS.
School said ECHP unnecessary.
DD had serious mental health crisis, far beyond what the school had any expertise to deal with. CAMHS support for parents, not child, and not forever. School timetable reduced because of mental health.
Secondary school things get worse. CAMHS state that DD needs urgent help and given all the therapy (paid for privately) medication is only step. However, they have long waiting list and cannot say when we will be seen, as urgent list is months long.
Get private psychiatrist. Medication. Bills.
Covid. Nuff said.

Phased return to school.
Fight for ECHP. Hurrah.
Teachers refuse to follow ECHP in some lessons. DD having to self advocate to 10+ different teachers.
Bullying starts.
Admit defeat. Pull DD out of school.

Now pay for
Online school
Private therapy
Private psychiatrist.

Latest ECHP update - woman told me they won't help as it was my choice to home school. Nice.

This does not cover the day to day - meltdowns, isolation, working additional hours to pay for everything. No family support. No holidays.

But we are lucky because we have had the finances to have options.

@HorseAreBetterThanHumans have you thought about pursuing EOTAS/EOTIS? That is different to EHE. With EHE the LA is not responsible for the provision in the EHCP. Whereas, with EOTAS/EOTIS, the LA is responsible for the provision in F and for ensuring DC receives a suitable full-time education. It can fund things like online schooling and therapies and so much more. EOTAS/EOTIS can fund far more provision than the vast majority of parents can afford to fund themselves. You may have to appeal, though. (And some LAs are now naming some online schools in I because some are now registered institution.)

I think we all know that EHCP's do not always accurately reflect need! They are only as good as the person writing them, and these are rarely therapists or education specialists, its often a 'cut and paste' job from a multitude of professional reports. Often the need is underestimated/under provided, but there are examples where provision is excessive and not in a child's best interests, with too much focus on therapy and not enough on their social/emotional/learning needs. But the private therapist convinces the parent, then we are left with devastated parents when she has promised the parents that the child will acheive things which are completely unrealistic. I'm all for aiming high, but it's unfair on both the child and the family to push for the unachievable.

This lady is extremely smart, knows how far she can push the boundaries without getting in trouble, and those that cross her regret it! What she is doing is immoral but not illegal, the phrase 'professional opinion' is the magic get out of jail free card.

EHCPs often don’t reflect a child or young person’s needs. But it is very uncommon for EHCPs to detail, specify and quantify provision that isn’t reasonably required. LAs don’t agree to provision that isn’t legally reasonably required and neither do SENDIST order it if it isn’t reasonably required.

If the physio is doing as you have suggested she is, it is unprofessional and you should report her. It doesn’t have to be illegal for it to be unprofessional and deserving of reporting.

Therapies in F can focus on social, emotional and/or learning needs.

DD went to small village primary school, anxious child but no obvious issues, went to large grammar school and things started to fall apart, barracading herself in her room, stopped washing, eating, refusing school, self harming, very depressed, stopped talking, school suggested autism and she was after lots of triage and a waiting list for waiting list was aceepted onto autism assessment wait list, and aa separate pathway CAMHS support waiting list.
By this time we had reached crisis point and got private ASC assessment and private psychiatrist who prescribed meds and counselling.
Eventually DD was diagnosed with autism, generalised anxiety, selective mutism and tics.
All privately as nhs/CAMHS are crap-long waiting list and then when she got to top of CAMHS list she as told they couldn't help as she wasn't ready to engage!!
School were kind and understanding but had 3 LSAs for 1000 pupils and LSA didn't have training, time or expertise to help.
DD had 60% attendance in year 8, 19% attendance in year 9and zero attendance in year 10.
Neither LA or school provided an accessible education /any education during this time.
If she went in she sat in library and read a book, she got further and further behind. It was beyond stressful trying to get her into school and to her any help or support.
We applied for EHCP, a process that took nearly a year, rather than statutory 20 weeks, LA said her secondary school could meet need even though the school clearly told them they couldn't meet her needs, eventually an EHCP and as issued with no school named but mainstream placement type. LA could not find a school to meet needs so she had no school.
We appealed to tribunal, a process that takes a year, originally trying for specialist school but could not find one with a place or could meet her need so eventually changed appeal to education other than at school (EOTAS)
LA did nothing during this time, did not respond to tribunal orders, offer any education and they did not even turn up at tribunal hearing.
Tribunal awarded EOTAS but then LA took a further 3 months to put provision in place, 6 months later LA held an annual review and reduced provision which left her with inadequate provision and she had to drop GCSEs subjects , we went back to tribunal with another 12 month wait for a hearing and tribunal reinstated original provision.
The whole process is traumatic, adversal and the LA deliberately act unlawfully as it saves them money.
Whilst Young person and their families life falls apart. Had to adjust my work to try and support her and it's taken a toll on me as well as her.
She is about to turn 18 and is sitting her GCSEs this summer due to no education for such a long time.
There is continued anxiety and uncertainty, we can't be certain LA will support funding of ALevels despite her being bright, the whole system both CAMHS and SEN Education has let her down badly and it will probably have long term consequences for her future.

We received no support from school as she was "fine" in the classroom. She masked heavily and was a shadow of her former self at home. Either blank and unresponsive all evening or crying and angry. After months of pushing for the most basic of adjustments (allowing her to use the loo during class as it was too busy and noisy and she was bullied if using them during break) they told me I was just expecting too much.

She is now home educated and doing online school. Her results have improved and she is fun, lively, engaged, silly, rude.. a proper teen. The difference is night and day. She also put on a stone (she was clinically underweight) as she could finally eat lunch (she can't eat packed lunch and couldn't cope with the school dinner hall).

There is ZERO support or understanding unless you can pay for it. We are trying to get dental treatment for her and have wiated 4 YEARS for an NHS referral. I have finally paid a private provider to try and treat her and it is costing 1000s and we don't have access to some of the treatment options she'd have in a hospital but those aren't available privately so thus far we are still unsuccessful. The GP are inflexible about treating her.

Thank you all for your lengthy and detailed responses. I really hope some posters will read this out of curiosity and star to become more aware of just how impossibly broken this sector is .who knows, maybe even a government minister or two might have a look!

The system is awful. Incredibly expensive and poor value for money. I can't help thinking that if schools had more flexibility to have small groups and kids not following the national curriculum, there would be less need for individual plans in the first place. I remember them trying to teach ds2 about expanded noun phrases when he couldn't even read!

I am going through ehcp hell at the moment and frankly their plan to make things so difficult that we break and home educate has almost worked. I can't put ds1 through another year of hell while we wait for a tribunal date because they wouldn't issue. God knows how much they paid for the 45 minute EP zoom with him to write up a sub standard report that states things like "trained staff", without mentioning what sort of training, and completely ignored all of his physical disabilities. Ds2's was issued, but didn't meet standards and we didn't understand enough about it to know that. How on earth parents with no background in education law (us!) Are supposed to be able to push back in a 2 week deadline s beyond me.

It does seem like an independent body to issue support needs documents would be less biased than leaving it to the people who have to fund the support.

I knew my child was ND from age 3 and his reception teacher agreed and referred him to paeds. We got our first diagnosis when he was 7 (ASD) and had another two diagnosis (ADHD/dyslexia) in the year that followed. That’s with us paying for a screener so we could understand which pathway we needed to follow and then a lot of pushing to get him through said pathway.
Despite doing everything we could to support his learning in lockdown (which is how I noticed the dyslexia that had been missed until then) and still trying bery hard to this day, my now 10 year old still cannot read and write fluently. We only just had his EHCP finalised after a two year battle and a ton of evidence. He is still in mainstream with support (he is socially able and highly intelligent if only he could read!) but there is no way he can go to a mainstream secondary. Ideally, he needs a resource base rather than a SEMH school but our nearest one has only 5 places and their SENCO told me he’d received over 120 consults last year for those 5 spaces. In any case, he’s already told me my child’s needs are too great and they can’t meet needs. The next best option is 40 minutes away and has 9 places available per year. They can meet needs but the LA might well decide to allocate those places to others, the odds are stacked against us. This is in a large city by the way but we have a shortage of 250 special school places across the LA and nearby LAs are in the same predicament. I don’t know what we’ll do if they can’t find us a space, I don’t feel able to home educate, he really needs specialist support, and we can’t afford for either parent to give up work. So we’re gearing up for a fight and hoping for the best. It’s exhausting and I am not surprised to see so many SEN parents completely burnt out. It’s relentless because the system lets you down at every opportunity.

I wouldn't hold your breath sadly, they all know about the issues, but knowing about them and solving them are 2 very different things.

A few years ago I did NCT with a lady who was a backbench labour MP at the time ( she is now minister for pensions)and I spoke to her about trying to prevent closure of specialist nurseries for children with SEN in the area I work in, and which at the time we both lived in.

Her response was very negative, she didn't see the need for them despite all the evidence around early intervention, there was absolutely no willingness to help although it was in her power to prevent these closures.

My son was off-rolled from his independent age 5, he barely attended a term full time as the teachers could not cope. He was never a school refuser, they shortened his hours so they could get the rest of the class to hit their targets. I knew he was ND from age 2/3, he's like the rest of his paternal family who are all extremely successful. I've paid for diagnosis, private tutors, ehcp etc. There is nothing that suits him as he's too academic for SEN education, unwanted in private and shoved to the side is state. I'm lucky, well he's lucky, that I can home ed. I'm not a teacher, I don't want to be a teacher. I'm having no help and when I ask the home ed community they don't really believe in teaching much at this age. My son wants education and is now getting on well and will clearly thrive under my care and tuition. I wish I could get someone else to do it/help! We're just finding our feet and we are so blessed to have my husband to support us through this both financially and emotionally. He was educated elsewhere and hadn't set foot in a school at our son's age, I really think the UK system is extremely damaging and limiting for our SEN children. My son is differently abled, not disabled (academically) and I fully expect him to thrive in life. Thank goodness he has me and his dad, no-one is helping or advising us. I could have applied/sued for EOTAS but frankly I couldn't be bothered to deal with this dire system any more when we (completely unqualified) can do far, far better.

@RhaenysRocks you are completely right, it is 'impossibly broken'. SEN spend last year was over £10 billion, but outcomes if anything are getting worse. It cant be a case of just throwing more money at SEN as its just not there, every service from nhs to social care to emergency services is competing for funding. There needs to be some creative thinking about education as a whole in this country, with more accountability, tailored provision to prevent children reaching crisis point, both SEN and mainstream children are being failed by this focus on inclusion and teachers are at breaking point

My DGS has recently been put in a Special School by his local authority. All his diagnoses came from his last authority. It took 10 weeks and I took holiday and compassionate leave to enable his DM to start her new job.
The school is not ideal because it deals with children who can hardly read and write but, at least, it is school. My DGS has a higher than average IQ. His DM is hoping he will have access to a more appropriate school in September but she will need to start asking about this now to ensure the LA take her concerns seriously.

For us in our situation we have a 3.4 year old boy who despite saying many words is still considered non-verbal from a speech POV, and is going to be assessed for autism at some unknown point in the future. NHS SALT has been both useful and not so useful. Useful in that it’s a box ticked and the referral for the autism assessment was made through them, but useless in that there’s no actual active therapy from them with my son, who is clearly in need of it. I as the parent have to do it, of which I am ill equipped to do. Of course I don’t mind doing some degree of ‘homework’ but he clearly needs regular contact with a flesh and blood therapist who also gets him and his learning style. Outside of that obvious issue there are absolutely zero specialist provisions in our area…not just our area but the entire county. So my son has to go to a mainstream school, of whom are not equipped to meet his needs. I am currently considering private if the school will admit him, pretty much for his safety and wellbeing. He’s a bright, curious and happy boy, and he doesn’t deserve this absolute failing. The ironic thing is that the professionals working in these early intervention fields got into the career to help people, but the government are ultimately to blame for making it near impossible for early intervention to happen. It’s only going to cost the taxpayer more money down the line which is ironic.

2 children with SEN
State primary refused to accept there was any such thing as an SEN

Eventually drove all those with children out when they got rid of 121 and any SEN support.
His teacher suggested that DS needed to go to a Special School because he scored 0 in his year 3 English exam (he couldn’t read or write)
Said he was unteachable and he would need 24 hour care.
(DS is now learning Mandarin, has a manager position job and has grown his investments 20% per year for the past 3 years, even taking into account the AI issues of this week)

Gave up trying to get DS the help he needed and home schooled him.

Tried CAHMS who were useless
Said DS didn’t have ADHD within a split second of seeing him.

DS diagnosed with ADHD in later teens

All I knew is every time he started a school year I would ask about getting him referred but first of all they did a wait and see and said they needed to get to know DS then when talked about referring him they said as he would be moving up a year in the next few months it would be better if the next years teacher saw.

They had no intention of referring him. They would rather see your child struggle and wash their hands of him after a few months

If your child has an SEN then either be prepared to give up work and home school or work and spend all your salary going private because from where I am standing there is no help

Dd had similar issues to DS but went to a private school that specialised in a certain area of activity (academic schoolwork was only for 1/2 the week)
They had a wonderful Sen department. Dd had a 121 session, a joint session with another child and a larger SEN session with children of all ages where they openly discussed their issues and others in the class would talk about their little tricks to overcome them.

Dd said she learned so much from these sessions

I don’t think there are too many private schools that would do this

I think what is missing in education is that middle way between Schools for those who are always going to need care and mainstream education especially at senior school level

DS found it difficult to cope in senior school yet was not at the level of the school where full time care is needed

In my experience - teacher - provision in special schools is fabulous. Provision in mainstream state schools is tokenistic and a waste of money. Often simply having a poorly trained TA sit next to a child in class. Even great TAs struggle to be effective as there isn't the time to work independently with the child or to meet with the teacher for regular catch ups and guidance. Money would be better spent on whole school provisions which would benefit all - and therefore also the SEN student. Smaller class sizes for example.

My children are older, dd still has her EHCP. She was dx the week of her second birthday, as part of the multidisciplinary assessment they also involved education and so the statementing process began alongside. This meant that she had a statement of SEN (EHCP predecessor) before she set foot in any educational establishment. It worked really well in Primary although we changed schools in year 1 largely to avoid her spending two years with a really poor teacher.
Secondary was a different matter, too big, too noisy, too many changes coupled with her having no behavioural issues and being academically very able led the school to believe they could take liberties and not make the provision in the now EHCP and dd became less able to cope. Attendance dropped, part time timetable and eventually she stopped attending.
LA provided tutors, I started an appeal to SENDIST, LA named a special school with no GCSE curriculum (mainstream predicted 7 to 9 at GCSE) and no peer group. After a battle dd attended out of County independent specialist very happily until 19. Back to SENDIST again, LA conceded day before to a large and expensive EOTAS package. Dd is now almost 22, package remained unchanged at last AR. She loves it, me less so, LA are yet to work out how their EOTAS students can sit exams so it's all a bit rudderless and of course it means the objective to sit level 3 exams can't be met so the EHCP continues.
27 years now I've been in the system, numerous formal complaints to LA, pre action protocol letters, appeals to SENDIST, one date for Judicial Review, complaints upheld by LGO, lots of compensation, I'm counting down the days until the EHCP ceases and I never have to communicate with the LA again if I'm honest.

DD1 - SEN identified within 6 weeks of joining preschool. 1:1 support given in preschool for safety and then special school. Primary fine. Secondary was a disaster. 2 colleges disastrous. Now at a third college and doing well. Currently with 1:1 support. Suspect they may try to reduce that at annual review.

DD2 struggled at infant school 1, moved to primary school 1, struggled and left primary school 1, moved to primary school 2. Primary school 2 finally saw that she had ASD traits. Diagnosed in year 7. Limped through secondary school until falling apart in year 10. Completely unable to attend school. EHCP put in place and specialist independent school place awarded. Didn't cope. Given EOTAS package but very poor provision. Now in a specialist provision that gives bespoke education 1:1 for 25 children.

DD3 did ok until year 8. Limped through until year 9, until falling apart in year 10. Diagnosed with ASD and OCD. Now in a specialist provision that gives bespoke education 1:1 for 25 children, but can't attend, so teachers come to her.

I don’t know why, or what can be done about it, but there seem to be a huge swathe of children who struggle emotionally and socially with large mainstream state secondary schools. Many of them will have underlying diagnosed or undiagnosed ASD or ADHD.
Those environments just don’t work for them, and the children will not/cannot attend.

But the state special school provision isn’t designed for them either, there are some schools around but many are for children with learning disabilities and higher physical and intellectual needs.

as the OP said, many of those children might find they can manage in a small nurturing private school.
there are also specialist private schools with a mixture of EHCP funded and privately funded pupils.
Many others end up being home schooled.

But what’s the answer? Round where I live the local secondary school is 12 form entry. The next nearest 9 form entry. There simply isn’t a choice of a smaller environment. And financially smaller schools are doomed.

Is it that school environments are larger/more daunting/less flexible? Is it that kids are less resilient? More neurodivergence? I just don’t know.

thats one end of the spectrum and then therr are kids with even more complex needs who are out of school on reduced timetables or at home with no education for years while a placement is found 😞

LA are yet to work out how their EOTAS students can sit exams

A clear case of strategic incompetence. One thing LAs are good at.

My child has been out of school since September 23. We have now spent 2 years fighting for a ehcp. 2 tribunals for a child not able to be in school. A child that was on a 4 staff to 1 ratio and reduced timetable for 1 hour a day. But far as the la was concerned school could give more staff.

Finally got a ehcp after conceding before hearing.. only no mainstream will take him. Though we recognised it wasn't suitable.

No maintained special school will take him because of his PDA profile. We are now consulting independent special schools. But even they are generally saying no.

We may get EOTAS in September if there's still no school... by that point he's missed 2 full school years. And part of a previous one.

However my youngest is thriving in a mainstream with a srp. 6 months ago she was non verbal and had never spoken a word. Now she's chatting away (albeit more like a 2 year old then a 5year old) but her provision is making such a difference considering nhs SALT discharged her and basically had the opinion she will never speak.

From day 1 she has had the support and help required. But her year alone has a very high level of SEN which has meant a higher ratio of staff in the class as well.

@BrightYellowTrain I asked about any help and they kept saying I choose to homeschool so no option. And insisted needs could be met in mainstream. I should have fought when I took them out of school - but we have one year left of school now so the fight would take as long as the time they have at school. And if I am honest I am out of fight, I don't have it in me.

I lucked out with my son's school. Excellent sendco and they have pastoral care. Standard city centre school. He has ADHD and possible autism. He has fidget toys, wobble cushion, his own desk and space in the classroom, movement breaks, school paid for edpsych, indies, sensory review, family support worker, 1:1 when he needs it, reward chart and visual aids, behavioural evaluation, etc etc. School are incredible to the point that we don't need an EHCP where in other schools he might.

I have friends whose children have higher needs than his and they get very little support.