To ask for people's experience of SEN provision

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.

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.

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.

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.

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.

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.

@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.)

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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

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.