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

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.

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.

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 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.

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 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.

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?

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.

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.

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.

After 2 years and thousands spent on private diagnosis and reports/OT, autistic DD mostly ahs the support she needs. I say mostly as she is in a large mainstream primary (they're all large where we are) which is really too much for her even with 1 to 1 support but is the best of the available options. Private schools won't take her as when she wasn't supported she had violent meltdowns, special schools only cater to those with at least some degree of learning disabilities, the autism bases that on paper meet her need actually take children with higher support needs (and usually at least a year or two behind) as the special schools are full, she doesn't want to do home education.

Watch this space, matters are likely to get harder for families of children with autism and Adhd not easier.
There are moves to remove the right to appeal. Headed off by largely, Labour controlled , local authorities.

This , with the increased VAT on private schools which can accommodate the needs of many high functioning autistic students who are better placed in quieter / smaller settings, feels like a bit of an assault on neurodiverse children.

I am glad that my two are through the system. They ended up with funded EOTAS and have exceeded expectation.

https://www.lawgazette.co.uk/news/council-bodies-demand-end-to-send-tribunal-role/5120460.article

My son has pretty severe learning difficulties. I am incredibly proactive and had his Ehcp in my hand with a named primary ( ms ) before his 3 rd birthday after one appeal where his difficulties were blamed on me 🙄. (He has a genetic condition which causes his problems )
Prior to this I viewed around 30 schools and eventually found one I knew he would flourish at .

He spent 3 great years there and then moved to a Sen school. Again I looked at lots and found the one I liked and secured it . He has been there since year 3 and currently in year 9.

None of this was easy , it took time , dedication and a thick skin to get everything he needed. I found it traumatic deciding to leave his MS school I loved but it was the right thing for him .

I'm very glad he is settled in a lovely school and has what he needs . We wanted to move last year and moved to the same town as my sons school so as not to risk losing his place or transport so I have always put him first because my body made him like that so I have always felt the need to fix what I can . I think this is what makes me so determind

I'm a bit bitter and mines not as nearly as bad as others. My children have statements of sen with allocated 1:1 assistants full hours NI so still statements. Fine primary school.

Secondary school wheels came off. In NI they can't get people in secondary here who want to work as classroom assistants. The school have all these hours given by EA but they can't get people to fill them.

Why you ask:
poorly paid,
term time only,
no holiday pay as usual 1 year emergency contracts,
only 30 hours avaliable a week or less if kid doesn't need lunchtime supervision.
Teens with highish needs they aren't trained for.
No training given

They want to have special classes in mainstream schools instead of special schools. Great but how on earth are they going to staff them

Yep, secondary in NI is a disaster zone for SEN kids. DD16 (ASD, OCD and PTSD caused by school) crashed and burned in first year, school were useless and the Education Authority were worse, and hasn't been in school consistently since. We tried the small private route but that didn't work either, so currently she's at home, trying to just get her maths and English GCSEs out of the way. Support is non-existent.

That’s why I said you might have to appeal. LAs act unlawfully all the time, but that is not the law and they know it. It is why the success rate of appeals is so high.

You need legal representation to JR though. Which costs ££££
Local authorities know this

More like because private reports state what is actually needed by the child and the LA can't control the professional who writes the report.

LAs don’t like accepting private reports because they can’t control what’s written in them.

My DS was assessed my an NHS OT and she stated that she had to send the report to the LA to get it approved before sending me a copy. The OT used a large part of her report to attempt to discredit my private OT report without actually having a focus on DSs needs.

Utterly frustrating. Mine can function amazingly well on mainstream with 1:1 lesson support which why the TA situation makes me furious. I wish they would pay more to the high schools (not the grammars) that have to deal with the high sen rates that the 11+ weeds out for grammar schools. If we had high school classes with smaller sizes and support assistants there could be so much better outcomes.
Saying that iv been massively impressed with my kids high school. They teachers go above and beyond and completely get sen kids.

I have 7 year old AuDHD twins; twin 2 has concomitant learning difficulties.
Moved them to a 2nd primary in Terms 5 & 6 of Reception (Twin 2 got a place 1st, then Twin 1 followed in Term 6).
I did the EHCNA for Twin 2 in the summer break before Term 1, Year 1. She was awarded an EHCP in under 20 weeks (unheard of in my LA!).
Fast forward to Year 2...I'm actually fucking scared about what secondary school is going to look like for both children.

JR for failure to provide section 19 provision for those unable to attend school does not have to cost parents ££££. This is another myth that plays into DC whose parents know the system get better support. For failure to provide provision under section 19 of the Education Act 1996, JR proceedings themselves are brought in the child’s name so DC can be eligible for legal aid in their own right.

That doesn’t cover the pre-action letter. For that, if the parents are eligible for legal aid in their name, that can fund the pre-action letter. Where the parents aren’t eligible for legal aid for the pre-action letter, they can look at SOSSEN who provide them free of charge. Their waiting list is closed at the moment, but it is an option when it reopens.

My eldest is 7 and is currently on his fifth named SEND worker at the LA in 3 years. They are swamped with work, there is no money and so they keep leaving. Same with TAs at the school - you get paid more to work in Aldi and I bet it's a damn sight less stressful.

Throwing money at the issue as a parent only gets you so far, you can secure a private diagnosis and private therapies, but for some behavioural issues there just aren't the staff qualified or willling to work with children with SEND. Wraparound care and holiday childcare are big issues.

PP are right that its the parents that have the education required to understand the process and the forms and the time, energy and assertiveness needed to fight who get the furthest. It's incredibly unfair.

Glad to hear you've got teachers who get it - worth their weight in gold.

You're absolutely right, the grammar school system is a big part of the problem (and I say that as a parent with kids in two different grammars, neither of which has lived up to their marketing, in fact the teaching has been downright poor at times).

The challenge with many private reports is they are biased. A private children's physio I know recommends an insane level of provision in her reports, way beyond that which is actually needed. And then gets the LA to commission it from her company at £100 an hour, so it's in her interests to inflate need. I went for an interview with them and they were very open about how they 'worked the system'.

One child seen by her company was recommended an hour per day of hands on physio, and same for OT and Speech therapy, on top of this an hour in sensory room, and 2 hours using specialist equipment, so total 6 hours. The child got to school about 9.15 on school transport, left at 3pm, if the LA had agreed to these recommendations the children wouldn't have time to even go to the toilet, let alone eat or socialise or learn! Co-incidentally, this ladies husband is a lawyer specialising in SEN tribunals and appeals.

This is an example, but definitely not isolated. Unfortunately unscrupulous practice like this makes LA and NHS very suspicious of private reports. There are of course many responsible honest people working in private practice (including myself, alongside my nhs role) but the dodgy ones give us a bad name.