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

Again, thank you all for your posts. Im so sorry to read them all. The posters who have had good service it seems are v v lucky in the postcode lottery and in their ability to navigate and persist in the system. It should not be this hard. Every time someone pops up and says "there is free education for all in this country" I want to point them here.

@Hugmorecats you can ask for an Echp though you don't need school to do it. Write and ask for statutory assessment. They then write to the school as part of the process

@EHCPerhaps you can also request (tell!) the LA does not use Egress (or Microsoft Purview or similar) to communicate with you. Ignore the ‘not secure’ party line. It is rubbish. LAs use email for SENDIST. LAs use Royal Mail (yes, my LA went through a spate of hand delivering communications when I pointed that out to them).

@Hugmorecats I second requesting an EHCNA yourself. You can use one of the model letters IPSEA has on their website. Whether other DC with SEN also need EHCPs is not your concern.

If the other child has 1:1 detailed, specified and quantified in their EHCP, I hope their parents know the support is being shared and know they can take enforcement action.

I'm not sure i could do our experience justice without writing a novel. I'm chomping at the bit to campaign for better though. If only my local (Labour) MP was interested. Sam Carling, I'm looking at you.

I haven't read the full thread.

I have two children with Autism and ADHD. Both are academically bright, but just cannot cope with the noise/demands etc of secondary school - Both would probably thrive in a small private school, but I can't afford that - especially now they have added VAT to fees.

The state secondary school that they both attend/have attended have done their best, although we have gone for the smallest secondary school in our area, there are still 1500 pupils! - This is just too much for both of them. My son has now left school, but my daughter is only in year 8 and currently on a reduced timetable - she was out of school completely for most of October/November, so they eventually agreed to the reduced timetable, which is working really well - dd is visibly happier and less stressed and is attending every day. She is gradually increasing how long she stays in school for, but they are constantly putting pressure on me and her for her to be back full time.

Attending full time just doesn't work - Everytime she's tried it, she's become so dysregulated, anxious and distressed that she's ended up not attending at all.

Surely 60% of every day is better than no school at all, but they can't seem to see this? Today is the first full day she has done since October. After that full day in October, she told me she was never going to that "Hellhole" ever again, refused to eat anything for days and was really anxious and low.

Now, because she has worked up to it gradually, knowing her limits, she is actually OK and happy about going tomorrow. I can't afford Private school for her so I am stuck with doing the best we can manage in this school - and they do try, but they really don't "Get it"

Regarding private diagnoses - surely these take pressure off a completely overloaded system and allow children of parents who can't afford private assessment to move up the waiting list?? If everyone waited for an NHS assessment, the waiting lists would be longer than they already are?? Schools are supposed to put reasonable adjustments in place without a diagnosis and children who need an EHCP should get it with or without a diagnosis, so why are private diagnoses so frowned upon?

You can apply for an EHCP as a parent. Look at the Ipsea website for guidance. https://www.ipsea.org.uk/

@Jadebanditchillipepper thanks for contributing. My kids are v similar to yours in that all they really need is a much smaller, quieter haven. Fortunately I've been able to find this for them with the help of grandparents and debt and 0% credit cards but it shouldn't be this way.
Private diagnosis I think is more acceptable now to CAMHS etc as they acknowledge that it's such a mess that so many are opting for it but the point I'm trying to raise is that children shouldn't be waiting years for help depending on their parents' bank balance. And often, even once a diagnosis is achieved it doesn't help anyway. 🙄

For years I looked for an alternative school. Asked my LEA specifically if a school that wasn’t mainstream, as DS would struggle with that sort of teaching and environment and wasn’t for children who were never going to be able to live independently existed and was told categorically that none existed

Imagine my disappointment years later, during Covid to find that this wasn’t true.
Dd signed up to a TA agency that provided cover for schools that had TAs off sick.
Dd was told one morning to go to a school about 40 minutes drive away

The state senior school was for children with ASD/ ADHD/dyslexia When dd came back that evening she was describing the school as exactly what I had struggled to find for DS.

This type of school does exist or this might just be a one off but this model of school and teaching methods should be made to be more common. For those who fail to thrive in mainstream senior schools especially who have recognised learning difficulties can we not afford to have this type of school to fulfil the potential of a significant swathe of what will be the adult population in 7 years

I know DS feels he missed out on qualifying in a trade or going to university because he didn’t get the GCSEs he needed because the teaching methods used and the lack of provision for someone with ADHD and dyslexia and possible ASD was not there.

@Jadebanditchillipepper if DD has an EHCP, independent schools can be named in there if necessary and therefore funded. As can part time school and part time other provision.

If DD doesn’t have an EHCP, you should request an EHCNA. IPSEA has a model letter you can use.

Alongside this, if restarting to attend full time doesn’t work, you should request alternative provision from the LA. This can either be instead of school or as well as part time school. It depends on DD’s needs. IPSEA also has a model letter for this.

@Jadebanditchillipepper echoing what @BrightYellowTrain has said. They do exist. They can be funded and it is possible.

@stomachamelon @RhaenysRocks @BrightYellowTrain

Thanks. Unfortunately, we're in Wales where EHCPs don't exist and the school are very reluctant to give her an IDP (individual development plan) which is what we have here - probably because it's too much work. I've even had an outside agency (SNAP Cymru) write to them and they still won't budge. They say she doesn't need it because she doesn't struggle academically. The fact that she's unable to attend school full time doesn't appear to matter because that's my fault according to school. I will keep trying though

@Jadebanditchillipepper if the school has decided not to prepare an IDP, they must have decided DD doesn’t have ALN. If that is the case, have you requested the LA reconsiders the decision? Then appeal to the Tribunal if necessary?

@BrightYellowTrain No, I haven't done that yet, but I have been meaning to if they didn't respond to the latest request. They have put reasonable adjustments in place so I'm assuming they accept that she does have ALN. I'll ask them one more time, making it clear that I'll contact the local authority if they still don't comply.

@Jadebanditchillipepper if you ask the LA for a reconsideration, on their website, SNAP Cymru has a model letter you can use. If the school decides DD has ALN, they must prepare an IDP. You should know if the have judged DD not to have ALN because they should have written to you notifying you.

@BrightYellowTrain Thank you, I will look that up. No, I haven't had any communication to say that they don't believe she has ALN. They accept that she has ASD, but they don't believe she has ADHD and have declined to refer her

@Jadebanditchillipepper it is worth looking at this page because either way you should have had something formal from school.

I guess it's how you define additional learning needs really isn't it and I think this is the problem with the school. Dd doesn't have learning needs if you accept that she is bright and doesn't have any problems with understanding/reading/writing etc. BUT, she does have problems that stop her from accessing that learning by giving her school anxiety and leading to school avoidance.

To my mind, because she has problems accessing the learning, she does have ALNs, but the school's perspective is that she doesn't because she is bright and doesn't need any help to learn. The fact that she can't access that learning, as far as they're concerned is my fault because I'm "pandering" to her anxiety

@Jadebanditchillipepper the definition of ALN is set out in the Additional Learning Needs and Education Tribunal (Wales) Act 2018.

“(1) A person has additional learning needs if he or she has a learning difficulty or disability (whether the learning difficulty or disability arises from a medical condition or otherwise) which calls for additional learning provision.
(2) A child of compulsory school age or person over that age has a learning difficulty or disability if he or she—
(a) has a significantly greater difficulty in learning than the majority of others of the same age, or
(b) has a disability for the purposes of the Equality Act 2010 (c. 15) which prevents or hinders him or her from making use of facilities for education or training of a kind generally provided for others of the same age in mainstream maintained schools or mainstream institutions in the further education sector.”

There is more to consider than academic ability. Being academically able does not prevent a child also having ALN.

@BrightYellowTrain Thank you. I agree, but I'm not very good at putting it all I to words. I am really grateful for everything you have said and I will get back onto the school

@Jadebanditchillipepper both my sons were above average academically so not failing there. I totally understand it's a fight. Just think though that if you manage to get anything acknowledged and on paper this can help her until her twenties. Post school and into college/ university.

Sorry, but this may be how local authorities justified it to themselves, but it isn’t why they didn’t take private diagnoses. The didn’t take them to keep demand down - it was a 1-2 with NHS trusts refusing to refer you in the first place. That way, your SEN child had no diagnosis and had no costly support in school. And without a diagnosis they were invisible to the local authorities so no other help either.

My children are at a state primary and a huge number of children receive support with SEN - especially for neurodiversity and behavioural/emotional/sensory related needs (rather than for learning difficulties). It's far more than when i was at school or when my parent was a teacher (retired 10 years ago). On here our county has been mentioned as not good for EHCPs etc but a friend has just got one within the 20 weeks for her DC with autism. Our school gets the same grumbles all the local schools do that they don't do enough for SEN but they seem to do loads.

Trying to keep it short.
My son (Asd and adhd) head teacher in year 1 told me to put my son's name on waiting lists for SEN schools (after already giving him fixed term exclusions age 5) as he knew there would be a wait. But a head of 20 years in a 3 form entry school seemingly had no clue of the process and that I couldn't just put my sons name on a waiting list and had to navigate the system myself to learn what an ehcp was and start the application process.

Son ended up with a 1 to 1 and staying in the same school as his needs weren't significant enough for the special school, it was a struggle and full of conflict with a school who's head didn't want my son there and had no clue or want to understand SEN. Some years the teacher got him and it was ok other years not so much.

Local authorities didn't take private diagnoses because:

• when there's money involved there's an incentive for overdiagnosis of borderline cases
• private providers don't prioritise cases the way NHS services do. If you can pay you can get assessed. This means you get an uncapped number of people seeking diagnosis based solely on ability to pay and not severity of need.

The NHS tends to have no choice but to focus its limited resource on those who have (or appear to have) the greatest levels of impairment.

The state cannot afford to provide the level of individual, tailored educational experience to vast numbers of pupils the way a lot of parents currently expect. I'll get immediately flamed on here for saying it but someone with kanner/level 3 autism who is incontinent, non verbal, totally unable to interact socially, needs a greater level of resource than someone with what would be termed "level 1 autism" (eg DSM 5).

My son was 'lucky' he got his EHCP on need and not diagnosis so got the ehcp in year 1 and not diagnosed ASD and ADHD until year 4.
My son didn't do masking and when his needs weren't met the whole class knew, as that meant he was disruptive he got his EHCP, it was an awful time pre EHCP of me trying to get them to understand it wasn't bad behaviour for no reason , he wasn't making 'bad choices' but looking back I'm glad he didn't mask as he wouldn't have got the support.