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

I see this quite often. Some parents are saying they think it's because it saves a lot of money to stop providing provision just before year 11 because by the t'aime the parent gets it to tribunal the school year has past. Then without GCSEs kid can't get onto college courses etc Eltham would require the LA to fund support longer term.

Its absolutely disgusting a child's whole future is impacted because it saves the LA a bit of money

I appreciate your last sentence. In case you change your mind in the future, because EHCPs can last until 25, or 26 in some cases, the LA is lying to you. You can inform the LA you are no longer EHEing and they must make arrangements for the provision in F (and whilst DC is CSA, a suitable full-time education). If this isn’t forthcoming, it can be enforced, via JR if necessary. And you can request any appeal is expedited. Although as I said, I appreciate your last sentence. Just giving you all the information so you can make an informed decision.

Former SEND teacher here - have worked in mainstream ASD unit in primary, generic special primary and in an independent all-through special for high performing students with ASD. The latter was entirely funded by four or five local authorities who had lost appeals after placing these (mainly boys) students in generic special where there was no specialist ASD/PDA/ADHD provision or training for staff. Now in NI and horrified at the fact there are zero specialist independent schools, no mechanism to start one or pathway for appeal / referral. And zero post-19 provision that in any way comes close to what exists in the rest of the UK. Most parents I speak to are just beaten by the lack of a system / solutions / opportunities as even if they had the fight in them, there’s nothing to fight towards accessing. I thought it was crap and failing in England, this is like taking a step 50 years back in time. No understanding of EBSA, no real EOTAS provision and a backlog of 5 year waiting lists if you even manage to get a referral. Shocking.

Oh and we still have “statements” that seem to be cast in stone from issue to age 19, no updating happens at AR that I have seen.

Both my children have attended special schools.

DS has been in a LA special school for children with ASD and MLD since he started in reception.

My DD attended a special school for children with complex needs between years 8-11 after her transition to secondary school was a disaster and she was out of school for about 7 months. This school was an independent specialist school.

For both children we got various diagnoses on the NHS (ASD, ADHD, DCD and developmental delay). We waited about 12- 18 months on the waiting list but this was before covid. Both EHCP applications were accepted without a fight, again this was before covid. But I got an legal advisor to help with EHCP contents and placement.

I fostered a DC who had SN and attended a special school. This school.was rated as outstanding. We found it poor. For DC with very large needs they were good with additional TA's in already small classes of about 8. For the slightly more able the provision was poor. Teachers seemed reluctant to offer differentiated learning for a student a little more able in one subject. The DC we cared for arrived at this school having already passed his exam in Entry Level Maths level 3. We expected he would be learning Functional skills level 1. Instead he was made to spend a whole term learning Entry level 2 which he had passed the exam 18 months before. Once we realised we complained and were told this is the level the class is working at and we can't expect the teacher to have to prepare separate work for DC. I was furious as a teacher myself who prepped differentiated lessons for my students needs. I had a class of 27 and could manage it yet this school thought it almost impossible. The rest of the year was spent relearning Entry level 2 and also the first term of the following year. He only started Functional skills level 1 2 terms before his exam. I got him a tutor 3 times a week 1 hour English, 1 hour Maths and 1 hour of Science. I got social worker to complain too and got virtual school involved and school were told to let him sit the Functional Skills 1 or they'd let him sit it at another local school. He passed the exam. He then left at 16 to go to a local college and they have been 100 times better with him. They have given him a 1-1 support in the classroom. They have encouraged him and supported his learning and in just one year he managed to sit his GCSE and get a level 4 pass which would have been unheard of at the special school. DH believes they deliberately stopped DC from progressing onto harder exams because the funding they got was much higher if the DC seemed to be less able. Another parent was in the same position but left it to the school to decide what their dc should sit. He who had been on the same level as our foster son ended up with just Entry Level 3 which he'd already got 3 years before so had in fact made no progress at this school whatsoever. I saw this child's Mum last year and she asked how my foster child had done at college because her son stayed at the special school until he was 19. I told her he'd got the GCSE in Maths level 4 and she was shocked because her D's had been better at Maths than my foster son at the point they started the special school. I've formed the opinion special schools are probably good for DC who have very low ability but not so good for DC with a little more ability in one or 2 subjects. Obviously that's just my experience of one school but I've heard similar from other parents.

Oh gosh same here. Are you in Suffolk? Or is it the usual National problem!

In summary, to get appropriate Sen provision for two sen children I've done 9 appeals via the special educational needs and disability tribunal, had around a dozen upheld local government and social care ombudsman complaints and been forced to pay a small fortune for a pre action letter for judicial review. All in the last 7 years.

I wasn’t having a dig at you going private - Hope you didn’t take it as such. The system is fucked and there’s no judgment from me re paying privately. I’d do the same x

@BananaNirvana didn't take it as such. I am fortunate and I am angry that a parents personal and / or financial circumstances so very much Influence the child who deserves the same oppertunities as the next child.

It's abhorrent how long NHS takes.

I thought more and more parents want their SEN kids at home because clearly the mainstream schools are staffed by awful miserable individuals and kids who are vile and not compassionate; you can put supports and treatments in place and still a child with SEN to hate the whole social side of it. Agree that the mother kept the mentioned child at home and the relative who reported the mother should be ashamed and hope she gets the justice she deserves

I have two DC with autism. The second crashed as soon as she hit secondary. It's taken two years of attendance below 50% to get as far as the Local Authority even agreeing to assess her. School have made many adjustments but she still can't manage.

I also teach in a mainstream primary. In my class alone I have two non-verbal autistic children with one adult between them, two diagnosed with ADHD who are violent and aggressive, two with significant learning difficulties who are working at Reception level or pre-Reception level. Only one of these has an EHCP. There is no specialist support, no training, nothing. One of the parents wanted special school for her DC but the LA wouldn't name it despite the fact my school clearly can't meet needs. The parent has their own needs and can't access the appeal system although we have tried to support her (eg she won't make phone calls, but won't come into school to let staff help her make them).

The system has completely failed my DC and many of the DC I teach, not to mention the impact on other students in the school of having a high level of pupils with significant SEND and not enough support.

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

exactly, I am not rich but studied in a law department ages ago in my country; Had a child who needed some provision but also saw how many people have not got clue what they are talking about and kept sending a child with sensitivities to mental health ( nothing to do with her case! ) and people giving us always the opposite advice of what we really needed. My SENCO was amazing and very intelligent and I kept working , chosing and chosing the relevant services , wether NHS or private and all the child's issues got resolved and she got taken from the SEN register.

Would have I been walking around with an open brain and a mouth wide smiling at everyone, who knows

My son is in Year 6 and is in a SEN school and thriving. When he started after Feb half term in year 3 he was at Pre Key Stage level - he's now working at Year 3 to 4 levels which may not sound that great but it really is!

In the mainstream school nursery his teacher asked SENCO to observe which she did twice and said he was just a hyper boy. In Reception it was the same. Finally 1 week into Year 1 his new teacher refused to accept that and SENCO spent time with him. She quickly realised she'd screwed up. She put a CAHMS request in and he was accepted onto the Pathways for ASD (Not ADHD as he was 5 at the time and our area you have to be 7).

She started all the paperwork for an EHCP and then Covid came along so then she had to start again. An Ed Pysc did her assesment when he was in Year 2 and she said he was PKS and wouldn't get further than Year 1 level by the end of Y6.

When I got the report I was heartbroken but refused to accept his fate. Once his EHCP was agreed I rang ALL of the private schools within 20 miles (Yorkshire) and out of the 7 all 7 turned us down as 'its not what the other parents pay their fees for' (we would have scrimped and saved every last penny to get him there).

I fought with the LEA and his mainstream school for 18 months as they were insistent they were meeting need despite so much proof that they weren't (age 7-8 soiling himself and being left all day that he came home bleeding!) and not doing what they said they were and had timetabled for. We took them to tribunal but before that we had to have a mediation hearing with the head of the LEA and a judge which was on Zoom. Within 5 mins she said she wanted to speak to him privately and she forgot to mute herself but OMG she was tearing him a new one - she then realised and muted herself. 5 mins later they came back on and he apologised for all we'd been through and said he'd be delighted to offer our DS a place at our requested SEN school.

It was an awful few years and such hard work but totally worth it. DS was diagnosed in Y5 (4 years after the referral was accepted!) With both ASD and ADHD.

He was meant to be going to a SEN high-school but we managed to find out about a hub within a mainstream which will suit him better. He will still be in a separate building to the mainstream but, as and when or even if he's ever ready, he can go into some mainstream lessons like music or PE so he will get to mix with NT kids - thankfully the LEA contacted us this week to offer him a place.

My child has been on a waiting list for assessment/diagnosis since spring 2023. School are very understanding of him though despite the fact he's not diagnosed, as it's fairly obvious he's on the spectrum.

I hate to say this but my experience is that children with behaviour issues seem to get diagnosed more quickly and if your child is well behaved and on the spectrum they seem to slip through the cracks and not be a priority.

Derbyshire, their latest inspection was pretty accurate "widespread and systemic failings"

Strategic incompetence is a national problem, sadly. I say problem, but I suppose that depends on your PoV. LAs certainly don’t see it as a problem. I doubt those members of the general public who are of the opinion SEN DC cost too much see it as a problem either.

I'm in Scotland so the system is a bit different.

DS had a terrible time at primary for 3 years. Spent all day, every day dissociated and learned nothing.

Then COVID hit. We saw a huge improvement in mental health and academic ability. So we kept up the home schooling for the next 4 years. Living off disability benefits to make it work.

Now he's in a hub within a mainstream school which is working out well. Except that they put his academic ability at low primary level. Whereas at home I have him doing secondary level work, no problem.
I suspect what school are seeing is problems with processing speed and focused attention. Rather than a lack of ability to do tasks.
At home this is less of a problem since we tailor everything to his attention span and just sit out the bits when his "brain stops braining" as he would say.

So far he has an NHS ASD diagnosis but I'm considering an expensive neurodevelopmental assessment to get a better idea of his cognitive profile.
I'm very lucky that I've not had to "fight" the system as such.
Partly because the Scottish system is less bureaucratic (which has pros and cons. Less barriers but less accountability as well).
Partly because of the home education, I think. It meant we had no school gatekeeping the request for a specialist placement. The home education officer we were dealing with was actually motivated to help us in order to get a kid back into school.
Not that I'd recommend home ed as a way of playing the system. It only worked for us because we were genuinely prepared to home ed all the way through! And we may simply have got lucky.

I work on an advice line for parents of disabled kids. And I totally agree with the PP who said class is a big factor in what you get. Its often possible to correctly guess at the level of support, from the callers accent alone.

The lowest level of support is genuinely horrific. Think of kids left in soiled nappies, kids repeatedly restrained, kids losing years of their lives to school trauma.

Pretty similar journey to mine only for two on a longer timeframe. I'm exhausted from it if I'm honest. Latest complaint now 18 weeks, sent to LGO refused as no stage 2 and they allow LA 12 weeks. Asked them to clarify how 18 weeks doesn't satisfy the 12 week criteria.

The wait time is terrible, but it's not for a lack of trying. My borough has doubled the number of speech therapists and paediatricians doing ASD assessments in the last 3 years, to try to get wait lists down. Now they have stopped speech therapy treatment blocks for children with speech disorders such as stutters, to focus on assessments and get wait lists down, and they offer the option of funded private assessments, and paediatricians are delaying reviews for children with complex medical needs, again to increase ASD assessments. But what is the point of doing all these assessments and then not being able to offer treatment, except to tick the box for an EHCP. It does feel like an impossible hill to climb for professionals and for parent's.

Horrendous system I’m just over 2years into the get a EHCP that’s fit for purpose fight and out of 9 tribunal court dates my LA missed or ignored 8 of them causing delay after delay through a combination of utter incompetence, short staffed and systemic lies to avoid paying for anything. No one holds them to account, there seems to be zero consequences eve being judged inadequate by ofsted twice doesn’t make a difference, everyone seems to ignore the fact that vulnerable young people are in the centre of this storm. We have been forced into home education as a result, like 1000s of other parents.

Lots of LAs use a secure system to email parents on EHCP matters, called Egress. This system blocks parents from being able to view the messages from the LA that have been sent to them, after about four weeks.
When so many LAs get into dispute with parents or ignore them for weeks/months on end to save on budget spend, and parents are already in challenging situations, blocking them from being able to see their own email thread with the LA is appalling.

I’m shocked if it can even be legal, given that parents have to appeal their LA’s decisions so frequently, which has to be done within strict legal time limits.

Thank you for this. I didnt know that about the legal aid. People with experience who know their stuff and who take the time to advise each other is what has kept me sane

I have seen it from both angles.
Two of my sons have/ had ehcp's/ a statement.
First son was initially turned down as he was achieving above average regardless of diagnosis (autism) He used legal aid to challenge and was granted a statement. He attended a special ed school and specialised education for those with severe mental health problems. He had help until post uni.

Second son became a school refuser. Was at a local grammar and they gave in with no fight. Have paid for private sen education until 19 and gets help at university. (Autism)

I am in Kent.

I also teach at a pru and see how awful it is now regarding dragging of feet over assessment and counting down the clock to avoid help and responsibility. Some children desperately need help and will never get it. I believe my boys were given what they needed as I knew my way round the system. For the parents of the children I teach they realise too late and are badly advised. It is no use chasing diagnosis at secondary level. Certainly not in my area. Our senco is methodical and writes detailed reports for ehcp's and they are generally turned down until appeal. She is utterly brilliant at what she does.

This is of course my opinion and is specific to my area which has a large amount of specialist private SEN schools that cost ££££.

My son has an ASD diagnosis but I haven’t found that changes much practically in terms of help. His teacher says he is about two years behind the rest of his class in terms of the level he’s working at. He sits next to a TA but she is actually meant to be a 1-2-1 for another child. The school have been saying for years they want to apply for an EHCP for him but there are always more urgent cases. I do see what they mean - there are a handful of children (all boys) with more significant behaviour issues from what I’ve seen on school trips just in his class.