Woman's Hour - Is the SEND system working for children with special educational needs and disabilities?

Episode Date: September 10, 2024

In a live edition from the BBC Radio Theatre in London, Woman's Hour examines how children with Special Educational Needs and Disabilities, or SEND, as it is called in England, are supported in school. In Scotland the system is called ASN, Additional Support Needs; In Wales it's ALN, Additional Learning Needs; In Northern Ireland it is known as the SEN register, that is the Special Educational Needs Register. The programme is about children and young people who need extra support to learn, and the mothers trying to access it for them. The children may be autistic, have ADHD, or be a wheelchair user. Some may have learning disabilities, or be blind, deaf, or dyslexic. They all have a legal right to an education just like any other child. Woman's Hour had an overwhelming response from the mothers of these children to say that the system is beyond broken. That has led to a crisis in their, and their children's lives. Carolyn Atkinson, Woman’s Hour reporter, shares the results of a poll specially commissioned for the programme. Nuala McGovern talks to Kellie Bright, an actress in EastEnders who is also mum to a child with SEND; Katie, a 17 year old girl with SEND who feels she was let down by the system and is now campaigning for a better one; Catriona Moore, Policy Manager from IPSEA (Independent Provider of Special Education Advice); Catherine McKinnell, Minister for School Standards; Marsha Martin, the founder and CEO of Black SEN Mamas; Chloe Davies, a SEN teacher in a state special school in the Vale of Glamorgan and who previously worked in a mainstream school; Children's Commissioner Dame Rachel de Souza; and mums of children with SEND Samantha and Kirsti.Presenter: Nuala McGovern Reporter: Carolyn Atkinson Producer: Carolyn Atkinson and Rebecca Myatt

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Hello, this is Nuala McGovern, and you're listening to the Woman's Hour podcast. Good morning everyone and welcome to Woman's Hour. And to the Woman's Hour classroom, I have a very important programme for you today as we take a look at support for children with special educational needs and disabilities. This is part of a BBC-wide focus on provision for these children. Rachel Burden kicked off the discussions on Radio 5 Live this morning and from 11am, Naga Munchetti will be discussing special educational needs and school attendance. Here on Radio 4's Woman's Hour, we are live from the Radio Theatre in Broadcasting House in London.

Well, today's Woman's Hour is all about the children and young people who need extra support to learn, and the mothers trying to access it for them. These children have special educational needs and disabilities, or SEND, as it's called in England. In Scotland, the system is called ASN, additional support needs. In Wales, ALN, additional learning needs. And in Northern Ireland, it's called the SEND register. That's the special educational needs register. The children may be autistic or have ADHD or be a wheelchair user. Some may have

learning disabilities or be blind, deaf or dyslexic. They all have a legal right to an education just like any other child. And we have had an overwhelming response from the mothers of these children who contacted us here at Women's Hour saying they feel the system is beyond broken. And for some, it's led to a crisis in their and their children's lives. It is a huge and a complex area. We're going to tackle some of the issues it raises this hour and it is, I want to stress, just the beginning of a conversation that so many of you care about so passionately. So there is much more to come on Women's Hour in the coming days and weeks. I want to begin by introducing who is in our class today. Listening to every word is the Minister for School Standards, Catherine McKinnell.

Welcome, Catherine. We're going to be speaking to you a little later in the programme. What are you hoping to learn today? So I would agree with the premise of what many of your listeners have said, that the system is broken and I really want to take this opportunity to listen and we want to change it, we want to fix it. Well, let us talk to some of the people on my register who are thinking about these issues deeply. Kelly Bright, an actress in EastEnders but also a mum to a child with SEND. Welcome. Thank you, Nuala. Lovely to be here. Katie is 17 years of age and said she was completely failed by the SEND system and is now campaigning for reform. You're very welcome, Katie. Yes, hi. Beside Katie is Marcia Martin. She's founder and CEO of Black SEND Mamas. Good morning. Hi, morning. And to my left, yes, so just to let our radio listeners know,

I'm at one desk in the middle. There are some of my guests to my right. To my left, I have Chloe Davis, a Senn teacher in a state special school in the Vale of Glamorgan, who previously worked in a mainstream school. Good morning. Hi, good morning. And Katrina Moore is also at your desk to share her expertise. She's policy director at the Independent Provider of Special Education Advice, that's known as IPSE. So it helps families get the education their children are entitled to

by law. We're going to also get top tips from Katrina later. I think you will all have your notepads out and be scribbling those down. We also have the Children's Commissioner Dame Rachel D'Souza, a former head teacher herself, joining us on the day that she has published a report about children missing from class and many of those with additional needs. Welcome. To help us go through this hour is my colleague, the reporter Carolyn Atkinson, who's going to be speaking to mums with children who are here in the audience and I have to say in this packed BBC radio theatre. Welcome Carolyn. Do get involved at home.

You can text the programme the usual way. The number is 84844 on social media. We're at BBC Women's Hour or you can email us through our website for a WhatsApp message or a voice note. That number is 03700 100 444. In our audience today is Charlotte who got in touch to tell us about her three autistic children who have complex needs. I want to read just a little of what she wrote. I used to run a business employing other people. I used to have a social life. I used to be able

to go out and exercise, volunteer, take part in my community. I've given up any semblance of independent adult life to be my children's carer, advocate, lawyer, therapist and more. This is my life now. The pattern from the local authority? Deny, delay, misdirect. Our family is in crisis mode, struggling to survive. Charlotte, just one of the mothers bridging the gap in the SEND system. Thanks, Charlotte. I want to start with Kelly Bright to my right here. You may know her as the East Ender actress who plays Linda Carter in the middle of a very dramatic storyline at the moment, I should say. But off screen, Kelly also has a very important role, and that is as mum of a child

with special educational needs. What is your experience, Kelly? Oh, goodness. It's such a big question. It's such a big topic. My experience, like many other send mums, is not a good one. I feel like I'm letting my son down most of the time. I feel frustrated. I feel fearful. I'm full of worry. I always question if I'm making the right decisions for him and his future. I think there's a huge responsibility that you feel as a SEM parent. And mostly I sort of feel like there isn't a place for him, that somehow he sort of falls between the cracks of what is actually

out there on offer and he is in a mainstream school at the moment he is he's year eight of a mainstream state school and what are the challenges then that he is going through on a on a day-to-day basis well my son is lucky enough to have an EHCP which was not easy to come by and let me just for people who are not familiar with that, that is an education, health and care plan, as it's called in England. It has different names in the different nations. And that is a legal document that follows a formal assessment.

And it means that legally, your local authority must provide the provision agreed in your child's plan. That is it on paper. It's a legal document effectively between the local authority and the school um and although he has this really and truly every day is still a struggle for him because unfortunately or whichever way you look at it the way education is set up it's not set up for children with neurodiversity it just isn't and so it does affect his mental health he does you know it's a constant stream of tests

and you know unfortunately he's that's never going to serve him um and and i worry the worry for me is that i'm sort of putting him through this in a way. I can't sort of sit back and watch him struggle for the next four years, but then what do I do? Because actually I don't think he's suited to a special school either. But even if I did decide that we would try that, I probably wouldn't get a place for how many years, I don't know, but the waiting lists are endless.

So what then? I just, I would love to see an education system. I don't think you can talk about SEND without talking about education as a whole, really, truly. That's my sort of standpoint. And I think we have to look at making big, bold changes to the whole thing. If we're going to make education more inclusive

and we're going to make it work for everybody, and I want an education system that nurtures all children, then those changes need to happen. You know, you've mentioned him, I think I've heard the word worry a number of times from you, just even the past couple of minutes. But what toll has it taken on you? Because we're trying to understand the experience of mothers

that are trying to bridge this gap. It's funny i don't think you think about yourself as a parent really very much all my energy goes into my children all three of my boys and i think um i'm exhausted i mean i think any send parent is exhausted and it's not really you know new neurodiverse children may bring their own challenges but actually it's the it's the fight that's exhausting it's the debt it's the absolute fight and actually we all probably have jobs and um looking after our children just raising a family trying to we're on the treadmill of life aren aren't we? We're running faster and faster just to stand still. And on top of that, you're trying to fight for your child. And I, you know, I definitely feel like I have days where I think I can't, I can't do it anymore. I'm overwhelmed. I can't do anything anymore.

We're going to come to this in a moment in more detail, but have you ever thought about how do I manage my career with the support that I need to give my son? I've definitely considered all options. I've definitely thought about all options. I've thought about homeschooling. And obviously, if that was something that we felt was the best option for him at this time then things would have to radically change and there's no way I would be able to do all the

things that I do now there's just no way but I mean I'm not alone in thinking that I know that many parents feel exactly the same way. And we're going to hear a little bit more on that in a moment. How have you found the process of navigating the SEND system? So I'm talking about the admin or the process of getting your son the support that you want him to have? Well, I mean, the application process for an EHCP is ridiculous. I mean, it's completely and utterly, I think, designed to make it difficult at every stage. I was really, we were facing tribunal. I'd really got to the point where I thought, I just cannot. If this doesn't happen, then I'm done, which is terrible because you want to fight for your child. Of course you do do but then even with the EHCP I have to say you're still fighting a lot of the time you're still pursuing the the things that have been set out in your EHCP

making sure they're in place at school a lot of the time there aren't enough there aren't enough staff on the ground to fulfill the needs of children with EHCPs, let alone the children that don't have EHCPs. So it doesn't end just because you have an EHCP. Have you ever considered giving up work? Because it sounds like you have a full-time job already. I do have a full-time job. I mean, I don't think I've ever quite got to the point of thinking, that's it, I'm going to have to. But I wouldn't not that I think that's the thing I my my children come first of course they do so ultimately if that's what it came to and that's the road I had to take then that's what I would do and you'll understand why I'm asking that question but thank you Kelly for that perspective as we

move on to our next item because Women's Hour commissioned an opinion poll to try and find out more about the impact the SEND system is having on them. What do mums, for example, think of the SEND system in general? In particular, what is the impact on their working lives and their work-life balance? Our reporter Carolyn Atkinson has been looking at the findings and carolyn tell us a little more yeah well we commissioned the polling company called opinium to carry out this research and just in case you are interested all the data will be publicly available on the woman's our website shortly now it spoke to a thousand mothers across england scotland wales and northern ireland

over the past fortnight who have one or more children with special educational needs and Cymru, Ysgolion, Cymru a'r Iwerddon Cymru dros y chwefn diwethaf, sydd â un neu mwy o blant gyda angen addysg arbennig arbennig a disabiliadau. Mae'r canlyniadau yn dangos bod nesaf 3,25% o'r mamogiaid wedi dweud wrthym bod y system SEND ar draws y DU wedi'i brechgu. Roedden ni hefyd eisiau gwybod sut mae mynd i'r afael â'r system ALN, ASN a SEND yn edrych ar eu plant neu blant gy nisgwyliaeth arbennig, yn effeithio ar eu gallu gweithio. Ac fe wnaeth y gwybod bod nesaf 60% ohonyn nhw wedi rhoi gwaith ar gyfer eu gwaith neu wedi codi eu haws

er mwyn cefnogi eu plant. Nawr, pan fyddwch chi hefyd yn cynnwys y rhai sydd wedi ystyried gadael eu swydd neu codi eu haws, ond, er enghraifft, efallai nad ydyn nhw'n gallu cyflawni, fe gynydduwyd y nifer hwnnw i 73%, felly felly bron 3,25% o'r cyfrifion ymchwilwyd gan Sen Mum. Mae hyn yn cefnogi'r hyn sydd wedi'i ddweud i'r gwrandoedd gwmni sydd wedi'u ddweud i ni. I lawer, mae'r cymhwysoedd yma yn ymwneud â'r holl hynny, yn ceisio gweithio, yn ceisio ceisio cefnogi'r plant gyda angenau arbennig, yn arwain y system fel y mae Kelly wedi siarad amdano,

system y maen nhw'n ei ddisgrifio fel nid yn ddibynnu ar ddylun. Mae'r holl hynny'n ddifficil. Ac yn y bôn, mae rhywbeth yn rhaid i'w roi. Felly, i lawer o bobl, fel y dywedodd yn y cyfrif, they describe as not fit for purpose. It's all just too difficult. And basically something has to give. And so for many people, as was indicated in this survey, it's their paid work outside the home which puts families under additional financial pressure. And we have Kirsty who WhatsApp to talk about her business. Yes. And just one other thing to point out first. The reasons why women gave up their work was basically just over half of those who'd quit or cut their hours said they needed to do that to dedicate more time to their children.

About a third cited the absence of a support network. And the number who put it down to not coping emotionally was midway between the two at about 40 percent and as we've heard almost three quarters think the system is broken so let's speak to Kirsty you what swapped a woman's hour to say that you'd given up running your business how did that make you feel I mean I before this happened before I found myself in a position where my child couldn't go to school I would have described myself as a workaholic like my business my career was such it was my second baby really you know and I come from a very working class background so I had you know

I've always had to work and it's just been really important to me to have my own financial independence and you'd been running that business for 10 years. It was a brand consultancy, wasn't it? And it was your baby. Yeah. And I used to consult for brands like Nike and Google and Samsung. So when your child couldn't go to school, what decisions did you have to make? Well, the spiral, the downward spiral is so swift that it sort of gives you whiplash unless you've experienced it you can't quite compute how you can go from a child that's sort of struggling in school to a child that can no longer attend at all so their mental health your child's mental health goes first then they they can't go to school at all because you wouldn't send force your child in if you're going

to choose between an education or your child's mental health you're going to choose your mental health and so he started to not go to school and that turned into one and a half years of not going to school absolutely it did yes um so not only then have you got one and a half slash two years of lost education for my son but one and a half two years of of lost income for me um and also know, my mental health took a huge dip because your financial health is so linked to your mental health. I'm a single mum as well. You know, things have been really, really, really bad. And you presumably felt very isolated, but also you've told, you've explained that there is a stigma to this, isn't there? That you, you know, you were paying your mortgage, you were a sort of routine member of society and suddenly you're on benefits yeah and

you know i mean it's a really tough one isn't it because i know they're there to be claimed and they're there to be used but it's not something that i feel like i shouldn't have been in that position where i had to dip into that sort of public purse um i think there could be you know there needs to be a solution around this. But it's horrific. Yeah, I'm only just holding on to my house by the skin of my teeth. Okay, Kirsty, thank you very much indeed for sharing your experience. Well, another thing that many listeners have been telling us going into the new academic year is that their child has either no school place or no suitable school place. And that word is important. Carolyn, what did the poll tell us about this? Well, that certainly resonated with some of the mums who told us they'd given up work or lle y mae unrhyw ysgol neu lle y mae unrhyw ysgol sy'n ddefnyddiol. Mae'r gair hwn yn bwysig.

Caroline, beth yw'r pôl? Mae hynny'n arwain â rai o'r mamau sydd wedi dweud wrthym bod wedi rhoi gwaith neu wedi codi eu hamser. Mae 7% wedi dweud bod eu plant ddim yn gael lle ysgol, ac mae 13% arall wedi dweud nad oedd yn ddefnyddiol. Mae'r teuluoedd yn dechrau dweud wrthym bod nhw wedi cael eu llwyddo i'r hyn sy'n dechrau fod yn brwtol, fel maen nhw'n ei ddisgrifio, gyda'r awdurdod lleol. place. Now this is when families start telling us that they got locked into this quite often brutal battle as they describe it with the local authority and they may end up at tribunal where a judge

makes a very legally binding decision. What does this feel like in reality? Well we asked the Disabled Children's Partnership which represents more than 120 organisations and charities to ask their members about their own experiences. One woman said, no new school year photos for us. Start of a new school year is different for my daughter than her friends because we're still waiting for our council to approve funding for a special school. Another mother said, my eight-year-old daughter's been out of school and off role for over three years now and no one cares. And a third mother said, I have had to make a very hard decision to ac nid yw unrhyw un yn gofalu. A dywedodd y tair mwyaf, fe wnaethwn i wneud penderfyniad anodd iawn i'w hysgolio ar ôl bod ei sgol ar y cyfan yn ffynnu hi ac nid oedd yn gallu dod o hyd i gyfrifiad arall i'w wneud.

Wel, beth yw'r statistigau Llywodraethol yn gyffredinol? Yn ymwybodol, sut am lawer o blant â angen addysg arbennig a anafprydolion ar draws y DU ddim yn cael lle i'w hysgol ar gyfer y term hwn? Mae'n anodd iawn i'w ddweud oherwydd nid yw'n cyd-dysgu'n fawr. Roedd Cymru'n casglu'r data hwnnw hyd at 5 neu 6 mlynedd yn ôl. Ond o'r 4 wladau, dim ond Cymru sy'n gwybod pa mor llawer o blant â angenau argymhellol a disabiliadau ddim yn cael lle i'w ysgol ar hyn o bryd.

Ar ddiwedd y term, cyn y cyfnod oed, 252 o blant yn Cymru wedi cyflawni'r term hwnnw heb lle i'w ysgol. ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis ym mis as places have been found. Last Friday, it was 18 children without a place, and I've just checked this morning, it's 14. Now, Samantha, you know all about this, don't you? Samantha joins us. Why is your child not in school? Harrison is currently enrolled in a mainstream school, and despite their best efforts, they can't meet his need, which involves him the environmental

factors trigger him so much that he often spends a lot of his time isolated in a toilet and he's autistic isn't he yes so um he's been in your view struggling to go to school for the last year or so and you've been embroiled in a battle haven't you as you would put it with the local authority we're not going to name the local authority or the school, of course. But tell me what that's been like. How long has that been sort of taking? So from putting the referral in to actually getting an EHC paid, that actually didn't describe his needs accurately, was 70 weeks, which has a 20-week legal timeframe.

So that's completely way way over the the legal guidance and you then have been to tribunal on a number of times what is that like it's devastating because you're you're trying to prove to people that don't know your child that you know your child and what he actually needs and obviously with tribunal it's the dates are so long so um our first one we had a massive wait just to get them to assess or even though we did meet the threshold and the most recent one is we were just given a date about a month ago for september next year so you thought you were going to have a wait of a year before something happened so you took the very difficult decision didn't you to take him out of school? Yeah because I could see that it was affecting his mental health and his well-being the school had grave concerns and I was

no longer going to continue to put him in a situation that would be detrimental to his mental health. And the school agreed with you really? Absolutely agreed and fully supported that decision. Now we have some good news, don't we? Because in the last few days, literally, you got an astonishing phone call out of the blue. Tell us what happened. So we were heading to Tribunal next year and we got a phone call to say that he'd actually been offered a place at our parental preference in a school that can meet his needs. So Harrison is now going to a specialist school. And what do you think, what difference do you think that will make to him and indeed you? It's going to be huge so for him he's

going to be able to thrive he's going to be in a safe environment he's going to be able to to just be able to go to school and and be included and not be isolated from his peers and for me it's just going to take off a massive stress um you know despite getting this school placement it has cost his mental health my mental health and five thousand pound in fees solicitors fees and private reports sam samantha thank you so much for sharing that story and we're delighted there's a positive outcome for you yes indeed thank you very much samantha kirstie and carolyn as well. If you are just joining us, you're listening to Woman's Hour as we look at the system for children with special educational needs and disabilities and discuss how mums are bridging the gap.

We are live from the BBC Radio Theatre in London. You can text Woman's Hour 84844 on social media. It's at BBC Woman's Hour or through our website. Just saw one message come in from claire she says i was due to be at the program this morning but i had to give up my tickets due to having a child with send everything is a fight child care is not available i try to work part time but it is so tough my son has an ehcp but my local authorities say they can't deal with any school issues as the school is an academy why is is it all so hard? Oh my goodness, I hear reaction in the room to that, kind of some frustrated laughter, maybe a little bit of

resignation as I read out Clare's comments. So Clare, you're here in the room with us even if you're not physically here and thank you for your message. Just going back to the poll and some of the indications on it, that headline that almost three quarters, 73% of mothers surveyed told us that they think the SEND system across the UK is broken. I wonder what it feels like when you are a child in the middle of it. I want to welcome Katie who is a teenager. Thank you for joining us on Women's Hour. Some people may have heard your voice a number of weeks ago when you were telling us a little bit. We're so glad you're back with us. What did the SEND system do for you and your life? Well, honestly, it's completely ruined it. I'm 17 now. I haven't been to school since I was 13.

I'm autistic. It all kind of started when I was five. I was having meltdowns. I was referred to CAMHS. They didn't see me, so I carried on through primary school. I had intermittent bits of struggle and then got to year six of primary school. And the teacher was so focused on sitting SATs and getting SAT improvement scores that the pressure was just piled onto us as students so much and I started to really struggle. I did get some accommodations agreed with the head teacher but my teacher ignored them because they weren't legally binding so I dropped out for quite a while. I didn't sit my SATs. I did get a referral to CAMHS but that takes quite a while. Mine was only six months which is remarkably quick but still not a good time frames and by that ymgyrch i camion, ond mae hynny'n cymryd amser. Roedd fy mhrofiad yn ddewis 6 mis, sy'n gyflym iawn,

ond ddim yn gyfres da. Ac ar hyn o bryd, fe wnes i ddechrau ysgol ddynol mawr. Fe wnes i am 3 mis o'r 7 mlynedd, ac wedyn fe wnes i ffwrdd yn hollol. Roedd gen i gyfrifiad iechyd meddwl cyfan. Ni allwn i ddylid, ni allwn i ddynu, doeddwn i ddim yn benderfynu i ddiddordeb, fe wnes i gael diagnoi gyda disodr benderfynu, ac roedd yn anodd iawn i'w dechrau ei ddod yn ddysgu, fe wnes i'n diadwyno gyda disodr o ddysgu ac roedd yn anodd iawn i'w rhieni hefyd oherwydd roedden nhw wedi cael swyddi, roedd yn rhaid iddyn nhw ddod a edrych arnynt, eu plentyn ddim yn gweithredu. Yn ôl hynny, roeddwn i wedi cael fy nghyflog â chyfarwyddoedd HCP a chyfweliadau Cams. Roeddwn i wedi ceisio mynd yn ôl i'r ysgol honno ond doedd fy iechyd meddwl yn ddim yn dda ac mae ysgolion tried to go back to that school but my mental health still wasn't good and mainstream secondary

schools are just so overwhelming and loud and busy and not built for autistic people so we looked at specialist schools but because I was already in secondary school they were all full it's so hard to get places for those and tried some alternative schools but they didn't work out so I got eventually got an EHCP that specified education other than at school so I'm training to be a horse riding instructor now but fighting every step is so hard and I was diagnosed with PTSD last year from my time in year six of primary school which is why I can't go to school at all and I started speaking to my county council because they were failing quite a lot and speaking to some of the committees and trying to get my voice and voices of other young people heard because we're quite ignored all the adults who are running these systems

like to just try and blame the parents and ignore the young people but when there's a young person stood right in front of them telling them that this is what happened they really can't ignore it it's just what you're doing today Okay, if there was one thing, Katie, that you'd like changed, what would it be? To be believed and not be fought on every single step. I would like my voice to be believed. I would like my parents' voices to be believed. I should be sitting my A-levels right now but I'm not and that is not good enough because I know I am smart and I would like to learn and it just impacts every aspect

of your life thank you for telling us I can see nodding beside you is Marsha Martin who's the founder and CEO of a charitable organisation called Black Send Mamas. Marsha, what's your experience been? So firstly, I just like to make it known I'm autistic. I have three autistic daughters. I'm a former behavioural therapist, so I worked with individuals who are neurodivergent. I'm also a neurodiversity awareness consultant and I founded Blacks and Mamas. And we support black, primarily black mothers of neurodivergent disabled children in sourcing adequate mental health support. And then we also provide special needs advocacy services, legal advice, so on and so forth.

So as we already know, the SEND system currently in the UK is a little bit of a shambles. The local authorities are overstretched, underfunded. They are inadequately trained, the schools also, in how to support SEND students and their families. And, you know, that obviously means that the provision that's available is often inefficient, lacking, and that affects all families across the UK. I think from my position as a black mother of neurodivergent children and someone that supports over 3,000 black SEND families, and I've done research using the mums as participants, our deal is a little bit different in that we know that whatever affects the majority, which is a terrible send system, it kind of impacts the marginalised minorities a little bit more significantly. So living as a minority within a minority that's

black and disabled, it means that the challenges that we face, same as the rest of the diagnoses come late, the quality and timeliness of the information that we're given, because you're never really given information, is also affected. And then that kind of trickles down to our outcomes as far as educational attainment. Also, our social and mental and emotional health is also affected in a more acute capacity because we have so many different intersectional barriers kind of crossed and serving as a hindrance to us getting the support that we need. Do you feel that there's a recognition as a minority within a minority as you describe it? There is not a recognition for the majority currently as far

as SEND services and SEND provision. So absolutely not. There is no real recognition to the nuanced challenges that we as a community might face living as a minority within a minority. No. I want to thank you, Marcia and also to Katie before you for describing what it is that you are living through at the moment. Dame Rachel D'Souza, the Children's Commissioner for England, is beside me and was a headteacher. You published a report today called Children Missing Education. How many that are missing school are missing from school have special educational needs massively overrepresented so look look the send um the send system is in crisis but actually

the children without school places is a scandal right so i want to be really really strong about that i do since i came into role I've talked to children I've had a million responses to my surveys from children in the UK 98,000 of those with special educational needs and what they tell me is when their needs are met in school they are happier than the rest of the cohort but far too many are telling me their needs are not met and they can't go to school so in terms of figures there is, we know that following lockdown, children missing a bit of school who were persistently absent doubled. That was up to about 1.6 million.

That's getting a little bit better. But children who are severely absent, that doubled too. It's a smaller number. It's about 100,000. That number is not getting better. It's getting worse. And a massive part of that number are children with special educational needs that are not being met. Now, the report I published today was actually using my data powers to go to the Department of Education and say, last year, how many children fell off the roll and why. So about 11,000 extra children fell off the rolls of schools and they were not in school at all, not electively home educated. And that percentage that have SEND?

And they are at least doubly represented in that group. So it's, and minoritised communities as well. With your report, what do you think it tells you about the SEND system? From a more, I suppose, institutional framework. So two things. One is parents. I mean, 13,000 parents last year decided to home educate. Most of those were SEND parents and they did it because they were desperate.

But also in that 11 11 000 missing from education that's kids with met with a huge number of them with scent um who just not going back they're not going anywhere they're not getting any education and i think that's what katie's voice did so well for us she's humanized that katie is a real flesh and blood person she's not a ghost child you know they talk about ghost children she's a real ghost children meaning children that are missing these are the children completely missing how can it be how can it be this century and us have children where we don't know where they where they are they're not they're not accounted for there are at least a thousand children in this country not accounted for in terms of either being educated at home

at school or anywhere else so and send children SEND children we know, children with SEND are over-represented. Well, let me turn to some of the aspects when it comes to attendance. And I heard this again and again. Here's a listener email. My seven-year-old daughter reached autistic burnout and became extremely distressed at school. We tried so many different things to help her get back into school. Nothing worked. She was still so anxious. We were told that she needed to stay registered to get any support and access to a specialist school but to stay registered we were told she had to attend we were threatened with court and fines because our daughter was too ill to attend we've been forced to home educate and i'm no longer able to work so tying up a number of the themes we've spoken about how do you feel dem rachel about these parents being fined? So I think it's not the right thing to be doing

in a situation that's as serious as this. Look, at the moment, we've got this adversarial system. So you have to fight for an EHCP. You have to fight for support when the question should be, how can we help? Not how much is this going to cost? Can you get the sports out of us and in this these cases it's the same with attendance you know it the question is how can

we make it work for you when i talk to this cohort of children so children with special educational needs children missing from education they invariably want to be in school there are just huge barriers that are stopping them i'm seeing nodding in the room and also on the panel um let me turn to katrina moore who's policy manager at an organization called ipsy so they're the independent provider of special education advice and the aim is to help children with send get the education that they're entitled to by law um we know a lot of people listening at home, homeschooling, not by choice perhaps, or maybe they're waiting for a tribunal decision and that would be about whether their child gets

a place in a special school. Where do you think this system of SEND is going wrong? Well, it's undoubtedly the case that the SEND system is in crisis. It's not working as it should, but the situation we have is that we have a really strong, really clear legal framework of rights and entitlements for children and young people to receive the support they need to achieve the educational outcomes that they should be working towards. Every child has the right to have their individual needs met. The law is clear, but it's not being implemented. It's not being applied. The system has become adversarial, as people describe it, because parents are having to go to the tribunal to enforce their children's rights. And why not implement it? Where do you see the hurdle?

Well, the onus is on local authorities and schools to implement the law. So the law is set out very clearly in the Children and Families Act, which was passed in 2014, the SEND Code of Practice, also the Equality Act, 2010. So it's very clear what public bodies should be doing. And so there's a gap between what the law says, what the law requires, and what children and families experience and it is mothers as we've heard today who are at the sharp end of that of

trying to make the system work for their children let me read a little what the local government association said because they are in charge of these budgets that then are used when it comes to send what parents and children need and deserve is a properly reformed and funded SEND system that meets the care and support requirements of every child and young person with special needs. For too long, the current system has failed children with SEND and left parents struggling to ensure their child gets the support they desperately need.

As set out in our local government white paper, we are calling for action which builds new capacity and creates inclusion in mainstream settings, supported by adequate and sustainable long-term funding and the writing off of council's high needs deficits so undoubtedly there's a crisis in send funding and councils are extremely overstretched everybody knows that local authority budgets are under pressure like never before but what i find really frustrating is that they are, instead of going upwards to central government and saying we don't have the resources that we need to deliver on our legal obligations

to children and young people with SEND, instead they are transferring the stress downwards to families, to children and to young people, and making it more difficult for them to get the support that they need and are entitled to. It's so interesting. So you're saying send it up instead of send it down. Exactly.

We'll speak to our minister about that in a few minutes' time. But I also want to get from you, because there's a lot of people in this room and a lot of people listening that want advice. What would your top tips be for navigating this complex and as people have been calling it this our broken system i mean parents have to become informed about what the law says what their children's rights and entitlements are it shouldn't have to be that way you know it should be the case that you can go to your school or to your local authority and and as the children's commissioner said ask for help but in reality nobody is going to provide help unless you know

what you should be asking for and and go and do that so there's lots of information available on our website at ipsy there's information available from other sources too of course i would also say talk to other parents other mothers well they definitely do that much I can tell you that I have learned during this program that there there is a huge community of people sharing resources sharing information trying to understand how to navigate a path yeah and I'm the mother of a child with complex needs so I'm you know I'm part of these groups as well, and I know exactly what it's like. I would also say to start early.

As soon as you think that there are issues with your child, that they may need extra support, start early to find out about what they might be entitled to and to talk to school about that. I see Dame Rachel D'Souza nodding with that as well. I want to turn to Chloe Davis. You are a SEND teacher in a state-run special school called Uscol Ederi

in the Vale of Glamorgan. Previously, you worked in a mainstream state school. What do you think it is that children need from the SEND system? What does good look like? I mean, I think I can speak for everybody when I say children need their needs met.

When their needs are met, we see them thrive. So whether that be in a mainstream or a special school, wherever that placement may be, as long as their needs are met and as long as we're putting that child first, you'll see them thrive. And each child, of course course is totally unique. Absolutely. How do you set up to be able to cater for these various children to be able to cater for the needs what have you seen that has worked? I mean the school I'm currently in works really really well to cater to a very very wide range of needs you know cognitive, we're looking at pre-nursery curriculum all the way through to A-levels.

Pre-nursery. Yes, yeah. All the way through to A-levels. So that's a wide range of cognitive ability within our school. Within that, not all of our pupils are going to be taught the same and we're not going to expect them to access learning in the same manner. So essentially, we can refer to their EHPs, IDPs, as they're known for in Wales.

Oh, yes. IDPs, yes. So it's a different terminology, but it's still the statement. But basically the document that lays out the needs that need to be met. Yeah, absolutely. And we can refer to that in terms of the provision that we need to provide in order to make sure that we do meet their needs, make sure that they're regulated and that they're ready to learn.

Because once we've got all those steps in place, that's when we can deliver the curriculum, that's when we can engage with them. I also saw an email from a listener coming in. When it works, it can be so effective. Our autistic grandson had a wonderful nursery education and was diagnosed age three. He had to totally fail in mainstream infant school,

hugely distressing, but because they couldn't manage him, he was given a place in a specialist unit at another mainstream school and has thrived because of the fabulous support. I'm so glad to hear that. I'm keeping an eye on the clock as we talk on Woman's Hour about SEND and how mothers are bridging the gap. And I'm making my way over to another little desk at the corner of this room, because listening to all of what we've been discussing so far is the Minister for School Standards, Catherine McKinnell. Welcome again to Women's Hour. Thank you. What have you heard this morning from these mums that will stay with you?

What an incredible panel of people, what incredible testimony this morning and just the most enormous admiration for Katie, what incredibly clear and powerful testimony you gave this morning to your experience but also I was watching your mum there and you can see the pride and you can see the pain and i think it sums up really the the journey that's been uh described but also kelly as well as a mom you know i can see the pain in your face as well and when you talk about the challenges that you've had but also how it looks in the future and i think that's what as a new government we we really this is a a wonderful opportunity whilst this is quite a difficult discussion this is a wonderful opportunity, whilst this is quite a difficult discussion,

this is a really important opportunity to really hear you, to hear your voices, to really listen, because we have said very clearly we want to put education back at the heart of national life, and we think that children with special educational needs and disabilities should be at the heart of our education system and I think by doing that we get education right for everybody in our system and we get the best for every child no matter what their needs no matter what their their um their additional needs that they might have it's interesting that you talk about putting it at the center of the educational system and we'll come to that in a moment but I do just want to reiterate what we've been hearing because it's not just the mums in our poll that think the system is broken. In a Westminster debate last week one Labour MP

Richard Bergen said it's not a crisis it's now an emergency. Robert Halfon, Conservative MP in 2019 said following a SEND report families are often forced to wade through a treacle of bureaucracy and in a system that breeds conflict and despair. You've been listening. What will you now prioritise specifically? OK, so I mean, I have to just say that we recognise that this is not only a very difficult system to navigate. It is also the former education secretary described it as lose, lose, lose. And I think she described it very well because it's not delivering for families, but nor is it delivering outcomes for children. And that's, you know, as a minister for school standards, we want to see high and rising standards for every

child. And that includes children with special educational needs. So the very specific changes we have made immediately, the first thing we did was change the role of the school's minister to include special educational needs as part of the remit because we see it as absolutely core to what we do in our schools and how we deliver education arising standards for every child we want to see inclusion as part of the way schools are measured so Ofsted we have already made the first step of changing the headline grades and Ofsted are looking at a report card system so that every parent every child and every school has a clear sense of how they are doing on a whole range of factors and that for us will hopefully and obviously it's

for Ofsted to determine those inspections but the report card system will include some element of inclusion as part of its measure. So schools will be striving to achieve inclusion. And that's what I think most parents want to know, particularly if their children are in primary school now. As they move into secondary, that becomes just as important, even more important. But fundamentally, we also want to focus on the early years. And I think one of the messages I've taken very clearly from today is that earlier you intervene, the earlier you identify needs, the better you can meet them and mitigate anything that might develop later on. So we want to, we're rolling out actually next month

a training tool for those people that work in early years so that they can spot the signs of a special educational need or disability, and they are better trained and better supported. And fundamentally as well, we want to see more staff in our schools. That's why we are pledging to put six and a half thousand more teachers in our schools, because we recognise that if schools are going to achieve that inclusivity that we really want to see, they need the support staff. They need the teachers to be trained. They need a cohort of school staff that can really meet that need as well.

So there's a number of issues there, funding, not the least of them. I do want to read a little of Paul Whiteman, General Secretary of the School Leaders Union, the NHT, said, schools work extremely hard to support pupils

with special educational needs, but they're operating within the constraints of a system in crisis hamstrung by shortages of funding capacity and specialist staff now i know you have just outlined what you plan to do but how long will these reforms take because for too long as i've been hearing mums have felt they've been fobbed off there is a new school year which has just begun and the question is how do you prevent another generation of children missing their chance at a suitable education like we heard from Katie um how long yeah so this this is a priority for us we are moving as fast as we can you will see we have made a whole range of announcements we've been in government for

just over two months but we've known this is coming we've we've made a range of announcements. We've been in government for just over two months. But we've known this is coming. We've made a range of announcements to get moving straight away, because this is a priority for us. But I can't pretend that this is going to be fixed quickly. It is going to take time. And which is why, you know, we want to put in place the extra teachers, the extra support staff. We have already refunded early speech and language intervention. And that y staff cefnogi, rydyn ni wedi cyllid cymorth ar gyfer cymorth ar gyfer ymdriniaeth a llengwyd cynnar. Mae hynny'n bwysig iawn, ac rwy'n gweld i'r mam yn nodi, ac yn iawn, oherwydd os ydych chi'n gallu helpu plant i ddod o hyd i eu llais a chynnal datblygiad a llengwyd cynnar, rydych chi'n galluogi'r plant i gyflawni beth y gallai dod ymlaen yn y llinell. Felly, rydyn ni wir eisiau canolbwyntio ar y cyfnod cyntaf a chael y cyfeiriadau yn iawn, ond rwy'n deall yn hollbwysig further down the line so um these are things we really want to focus on the early years and getting the foundations right but i totally understand the concerns that children are going through the school system now and we need to do everything we can which is why i think the extra

support for staff which we are working on this already we have recharged the recruitment campaign we have given a pay award to teachers we agreed to the recommendations and to support staff because we recognize this is a team effort in schools and we need to we have a shortage of teachers in our schools currently and a shortage our schools are properly staffed so that they can support every child to achieve and have the resources to support children with special but let me let me go through some of the issues with funding um non non-withstanding the ongoing issue of so-called safety valve. That's a series of agreements for people who aren't familiar with it. I can see a lot of heads nodding in this audience,

but it's between the Department of Education and individual local authorities agreeing that the Department of Education will bail out local authorities that have overspent their high needs budgets. In exchange for a financial bailout, local authorities have agreed to contain their spending on provision for children and young people with SEND to avoid deficits building up again. Of course, that has caused alarm bells for lots of parents. But looking at the numbers, the BBC recently asked all the local authorities in England about the gap between funding and what

they're actually spending out of their high needs budget. The 100 that responded about the last financial year reported a deficit of £586 million. When asked about it this year, 113 councils, not the same ones, forecast a collective shortfall of £926 million. And I can see some sober looks through this crowd as well, kind of understanding, which they do so so well the magnitude of the problem so when you minister go to the chancellor how will you convince her to increase send funding when there is so much competition for money could be social care could be NHS could be the winter fuel allowance I mean you recognize the challenge

that we have right now because obviously we have a spending review coming up you will not have missed the fact that there is a big black hole in our in our national budget and um and and people are uh and we're trying to work through where promises have been made and and there isn't the funding to support them. In terms of special educational needs, there's a whole range of factors that are driving some of these challenges. And we have allocated additional funding for this year's core budget, an extra 140 million in recognition. What does that mean, 140 million? I did see that figure go out. But if we're talking about, for for example 926 million out of 113 councils I can see people shaking their heads that the hundred and forty means nothing if I'm

understanding correctly. That's specifically education funding because some of these council deficits are as a result of some of the transport costs that are currently being a big challenge for local authorities. And this is where we need to look at the system in the round and ensure that the right provision for every child is available locally, wherever possible. Which it's not at the moment, as we've heard loud and clear. But I want to come back to what you will say to Rachel Reeves to convince her this is the priority.

That's what I'm coming to, because basically the system needs to be reformed which is why we are focusing on ensuring that we have a school system which is why it's a fundamental core part of my role as the school's minister to make sure that our schools are providing for children that have a range of needs, and that includes those with special educational needs and disabilities, so that a child with special educational needs has that rich education experience as part of a mainstream school setting, but where there are special schools available

for those with very complex needs. But we don't have a timeline, or we don't have the funding to be able to we want to see this happen straight away so i'll give you another example of work that we've already started to to create that more inclusive experience for children i think katie explained it really powerfully in her testimony how she felt within the school system and that it wasn't serving what she needed we've under we've launched a curriculum and assessment review now that's really important because we want the every child to have a joyful experience of school and that means teaching them in a way and i understand that and that is very

good and that is some of the aspects that are coming in but it doesn't feel to me like it's not going to happen overnight noen overnight or indeed really pushing the Chancellor to make this a priority. There was also, and I want to go back to my panel, but the Association of Educational Psychologists, you know, they wrote an open letter asking for a drastically different approach. They want to see SEND as a central component of the education system as a whole, rather than a bolt-on as it currently stands. Can you confirm that SEND will not feel like a bolt-on for these parents in the future? That is absolutely our priority, and that actually sums it up very well. And in terms of educational psychologists, we know we need more of those.

We've allocated £21 pounds to train 400 more and we recognize i mean that we could talk about this for a very long time and i want to go back to my panel it's not it's not a one fix no it's definitely not a one fix i think a whole range of approaches very much got that minister katherine mckinnon thank you very much but let me throw it back to you kelly bright on what you've heard your reaction goodness me I've been listening intently um I mean I I watched the debate in parliament last week and yes of course it's great that they're saying what they're saying but it needs to turn into action that that ultimately is what it feels like.

And I think for a lot of SEM parents, we're disheartened. You know, we do feel hopeless. So, you know, those changes need to come, but they do need to be big, bold changes. Are you convinced of what you're hearing? No. I didn't answer that question no money no mandate and no money no mandate how do you understand that are you asking me yeah kelly look of course you know funding is is the biggest part of this of Of course it is. Of course it is. But it also takes someone,

someone in government to say, we need to look at this and tear it up and start again. I think what I'm hearing is that you want a culture change. That is what has come to me during this hour. Very briefly,

because I've just got a couple of minutes, I want to turn to you, Katie, on what you've heard. Yes, I agree with everything Kelly just said. Funding is an issue, but the system has no empathy for what children and families are going through. The education system likes to put children in little boxes, and if you don't fit in that box, you get pushed out.

And I don't see that government doing enough to tackle that particular issue. Bridget Phillipson recently tweeted that all children belong at school. I don't. I have PTSD. If I go into a school right now I will have a meltdown. I cannot go to school. I just want children, young people to be treated like individuals. Back to you, Minister, but I'm coming up to close the programme. You can see that these people in front of me, at least, and I imagine some that are shouting at their radio all around the nations, are

on the same page. I mean, will you take that away, that there needs to be this root and branch reform? 100%. And, you know, you can feel the tension in the room, and root and branch reform 100 and you know you can feel the tension in the room and rightly so because you know you go through a lot and you you've um had a really hard time there is no doubt about that we hear it and but what katie just said there and i just i can't get over what a great advocate you are um you said that that that one of the things we do want to reform and we're going to

be legislating for it is a change to the admission system and that's fundamental as part of what we want to achieve we want to reform the curriculum we want to reform the way schools cooperate together with the local authorities regardless of the nature of the school and i know that's been raised but everyone has a responsibility for the children in their area and have a duty to work together to make sure that every child gets the best start in life and every child gets that chance at their education which we want to see come in there what did I miss their duty to cooperate that's what I'm saying so we want to make sure I'm going to take this moment so we don't upset the pips on Radio 4 to say this is just the beginning

of our conversation. So many passionate, involved people. Thank you all so much. I want to thank my guests, Kelly Bright, Katie, Marsha Martin, Chloe Davis, Katrina Moore, Dame Rachel D'Souza and Minister Catherine McKinnell

and also Natasha and Sophie who are signing, and my colleague Carolyn Atkinson. Please continue to send us your experiences. We'll continue to cover this on the programme, I promise, in the coming days and weeks. And guess what? You can join me again tomorrow morning from 10am when I will be speaking to Carol Vorderman.

APPLAUSE we'll be speaking to Carol Vorderman. That's all for today's Woman's Hour. Join us again next time. I'm Sarah Treleaven and for over a year I've been working on one of the most complex stories I've ever covered. There was somebody out

there who's faking pregnancies. I started like warning everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story. Settle in. Available now.