The parents losing hope over SEND system

14th January 2025

bbc.co.uk/accessall

Access All – episode 142

Presented by Emma Tracey

EMMA-         Here on Access All we know a good tune when we hear it. [Music] That is Outta Da Blue by Snoop Dogg, obviously, it was released last month. Snoop and his team sampled a song called Watermelon Fantasy, and that track was created by a tiny charity from the UK called Daylight Studio. They support people with learning disabilities to make music. One of the producers on that track and one of the musicians, is Tina, who has a learning disability, and Tina’s with me. Hi, Tina.

TINA-            Hi.

EMMA-         And Tina is supported by Jack.

JACK-           Hello.

EMMA-         This is exciting. Let’s hear Watermelon Fantasy now and see how the two compare. [Music] You can really hear it, you can hear on the Snoop Dogg track, that section, absolutely really strongly. How do you feel, Tina, when you hear your track on a Snoop Dogg song?

TINA-            I’m proud of it.

EMMA-         And what work did you do on Watermelon Fantasy?

TINA-            I played the instruments, I played the synths on it.

EMMA-         If we hear the song, you’re the one who goes, “Wo-oh.”

TINA-            Yeah, that’s me on it.

EMMA-         Oh wow! What’s next for you? Because you’ve had this big moment now, the song’s been everywhere, it was on a Netflix trailer as well, so it’s huge, the Snoop Dogg song, so everyone’s hearing you go, “Wo-oh.” So what do you want to happen next?

TINA-            Skylight is my other one, and I want Alicia Keys to do it with me.

EMMA-         You want Alicia Keys to do it with you, oh wow, that would be immense wouldn’t it? Jack, could you organise that for Tina, yeah?

JACK-           Yeah, yeah, I’m sure. I’m pretty sure I’ve got Alicia Keys’ number somewhere so I’ll drop her a line.

EMMA-         Jack, what impact has this had on Daylight Studios? It’s a tiny charity, right?

JACK-           I mean it’s massive. Well, it’s bigger than anything we’ve done before. In some ways it’s kind of bigger than us, but in that way it makes it so exciting. To have an artist that’s inspired us and then be able to make a song that inspires them, I just think is so, so cool.

EMMA-         How did the whole thing happen?

JACK-           From what I’ve heard, Dr. Dre has a team of people that scour the internet for interesting samples, so I guess it’s almost like a digital Craig diving. How they found it though, I don’t know, because at the time the video had only had about 1,000 views on YouTube, so they must have a big team I’m guessing that goes hunting for this sort of thing.

EMMA-         Will getting royalties from this sample and money from Snoop Dogg and his team, will that futureproof the charity?

JACK-           With all the royalties and stuff we’ve done an actual split, so it’s basically all of the artists that work on the track get an equal split, and then two of the artists is myself, and Olly Price who’s a Trustee of Daylight Studio, so we’re going to donate our portions to the charity, and we want to use that money this year to train up some young music facilitators.

EMMA-         And people with learning disabilities are getting paid for their work?

JACK-           Yeah. Which is so, so cool.

EMMA-         Tina, any thoughts on what you’ll do with Snoop’s money?

TINA-            Spend it on a pair of trainers.

EMMA-         A pair of trainers. Or two maybe?! Tina and Jack from Daylight Studios, thank you.

JACK-           Thank you for having us. Well done, Tina, smashed it girl.

TINA-            Thank you.

MUSIC-         Watermelon Fantasy clip.

EMMA-         On with the show.

MUSIC-         Theme music.

EMMA-         Hello, I’m Emma Tracey, this is Access All, the podcast that’s here for all of your disability and mental health news and celebrity interview needs. On this episode, we’re going all the way to the South Pole to speak to disabled adventurer, Jonny Huntington. He skied 566 miles to the South Pole carrying all his food and stuff on a sledge. Hear more about that later. You can find us on X and Instagram @BBCAccessAll, or you can email accessall@bbc.co.uk

But first, the struggle so many families go through to get their children’s SEND provision, that’s special educational needs and disabilities, is something we talk about a lot. Some parents opt to move their children to private education if they feel their support needs cannot be met in state school. But since 1st January, private schools have had their charitable status removed and now must pay VAT at 20%. Many schools have passed these costs onto parents.

So, what about the families who have scrimped and saved to move their children to private education because they feel that it’s the only way their support needs can be met? One mum in this situation lives in the south west of England. She doesn’t want to be identified, so we’ll call her Alice. Hi, Alice.

ALICE-          Hi.

EMMA-         Thank you for being here. You have two kids both with SEND. Tell me a bit about them and their support needs.

ALICE-          So, I’ve got two girls who are in Years 7 and 9. One of them has moderate dyslexia, and the other has auditory processing disorder which is caused by high functioning autism. We made the decision to move them from state where they were struggling and because their needs couldn’t be met, to an independent school, which is really focused on happiness, wellbeing, and enabling them to kind of do the best that they can.

EMMA-         At what point did you decide to move them to private school? What was happening for them in state school when you made that decision?

ALICE-          They’d struggled through a state primary where they were slightly unhappy but not to a point where we’d necessarily do anything. And I think we saw a real change during COVID when they had to be homeschooled, and my youngest especially really struggled going back in. She went from being in a small class to a merged Years 3 and 4, where she went from having about 16 in the class to 36 of them, six of them girls, 30 boys. She essentially shut down completely, she wouldn’t speak in school, she wouldn’t drink anything, she wouldn’t eat anything, we struggled to get her in, there were tears every day. Spoke to the teachers, who essentially said they couldn’t do anything about the class sizes or anything else to meet her needs.

EMMA-         And could you have looked for other support? Could you have looked for an EHCP, an education health plan, for example?

ALICE-          At that point, I rang every single primary school in the local area within our town and neighbouring towns, asked about class sizes, asked about how many people, if they had access to SEND support, and essentially was told that there wouldn’t be anywhere that might have a smaller, quieter setting, which is why we’d originally chosen that particular school.

EMMA-         Financially when you made the decision to move them, how impactful was that on your family at the time?

ALICE-          Essentially we had to remortgage to be able to pay the school fees and, you know, the impact is we’ve been paying our mortgage for 20 years, had five years left. We’ve now got a 25 year mortgage and, you know, essentially by the time we finish paying it off we’ve been paying it for around 50 years.

EMMA-         Just to explain, the only VAT exempt students are students who have an Education and Health Care Plan, and on that plan the private or independent school is named as the school that that child needs to go to. So they are VAT exempt, but the government is actually paying for their place in the independent school, so they’re also paying their VAT. Just to be clear, you don’t have an Education and Health Care Plan for either of your daughters despite them having education support needs?

ALICE-          That is right, yes.

EMMA-         And why do you not? Why did you not look for that?

ALICE-          We moved them because of my youngest daughter and a real kind of urgent need to do something for her wellbeing. The school, their SEN is absolutely amazing, they’ve both got formal plans with the school in place, they meet all of their needs. The discussion with the school is we could pursue an EHCP, but the likelihood is it wouldn’t give anything more, and they’re meeting everything anyway.

EMMA-         Okay, so before you moved them, you probably didn’t quite realise you needed an EHCP as such?

ALICE-          Probably not, no. We’d raised and raised issues every single year, every single term, and the school’s response was like, “No, no, it’s fine.”

EMMA-         So Alice, you now have to pay whatever amount of money is passed onto your school now that that has been added on to their costs. Tell me what position that puts you in?

ALICE-          Before the VAT, their school costs essentially took up and equated to 56% of our salary. We both work in normal jobs, one of us is on minimum wage, we still claim child benefit, it’s significant. When you add the 20% onto that, it’s even more significant with those costs. But we feel like we don’t have a choice, we either end up with two very, very unhappy children, and I would honestly believe be school refusers.

EMMA-         So they would refuse to go to school?

ALICE-          When they were younger and in Year 4, you could physically take them to school and drop them off at the school gate. I honestly think having seen the impact after COVID when they tried to return, that at this point they would refuse to go.

EMMA-         What does that mean for your family? Is there stuff you can’t do now because you’re paying so much of your income on school fees?

ALICE-          We’re just getting into more and more debt every single month. But we can’t not have our children be happy.

EMMA-         What would you say to the people who say that you’re in a very privileged position to put your children in private education in the first place?

ALICE-          Yes, not everybody can afford it. But equally, we make decisions every day to prioritise, literally down to simple things like buying everything pretty much is Tesco Value food, making sure that we have a really good meal plan so that we’re spending as little as possible. It extends to every area of our life. If there’s something that we can get from somewhere else that’s cheaper, or recycling or second-hand, or anything else, those are the things that we almost do as a norm.

EMMA-         We’ve seen that actual private school fees themselves have gone up quite a few times in the last 20 years. What if they go up again, what’s your plan then?

ALICE-          More debt, is the only option I think. Maybe one day we’ll win the Lottery, I don’t know. [Laughs]

EMMA-         All right, you’ll cross that bridge?

ALICE-          I don’t know, I just don’t know what we’re going to do. [Tearful] Sorry.

EMMA-         No, don’t be sorry.

ALICE-          They go to school every day so happy. I think in the background we’re probably masking how difficult it is and just dealing with it and, I don’t know, it just feels like somehow we’re letting them down but knowing it’s for their greater good.

EMMA-         I know that all you want is the best for your children and you do a lot to achieve that, a lot more than you ever thought you would before you had children.

ALICE-          Yes, absolutely!

EMMA-         So, as we’ve heard, Alice is able to send her children to private school, but how is SEND provision looking in state education? Luke Sibieta is an economist at the Institute for Fiscal Studies, which analyses the economy and social policy. Luke, you’ve just published a report into the cost of education in England, including SEND, special educational needs and disabilities. What were your biggest findings around SEND?

LUKE-           The biggest findings are the immense financial pressure it’s putting on councils and school budgets. We’ve seen a 60% increase in funding over the last few years, and that hasn’t even kept pace with the increase in numbers of pupils with the most severe special educational needs. Over the last five/six/seven years, we’ve seen a really large increase in the number of pupils with the most severe special educational needs, those who are eligible for Education, Health and Care Plans. We’ve seen numbers grow by around 70%, and councils haven’t had enough funding to pay the costs of EHCPs, and as a result they’ve built up really quite large deficits over the last few years which are only likely to grow in the future.

EMMA-         Yeah, because councils as we hear a lot on this podcast and all over BBC News, are often very, very squeezed and stretched as it is, and I guess this is putting more pressure on them. How can schools and local authorities manage this situation, do you think?

LUKE-           I think it’s important to state at the start that it’s not manageable at the moment. Without any reform of the system or vast increases in funding, the system is going to be financially unsustainable over the next few years. If we look over the last 10 years, we’ve seen that about half of the overall increase in school funding has been devoted to the increasing costs of the special education needs’ system. Now that’s not really sustainable, and it kind of pushes mainstream school budgets to be really squeezed on the edge as well, because so much other resources is focused on the special educational needs’ system. That kind of creates a conflict which is really not helpful for anyone to be honest. It’s not helpful for people with special educational needs, it’s not helpful for other pupils, it leads to the confrontational system we have at the moment.

The new government set out a plan for providing more provision in mainstream schools, and that makes sense because there are a large number of pupils with special educational needs, and it’s just not possible to provide lots of specialist support in special schools when there’s a huge number increase in pupils. So they set out a plan to provide more mainstream provision. However doing so, is going to be incredibly expensive, and they don’t really have the money at the moment.

EMMA-         And what about the £1.7bn that the government hopes to save through that being added to fees and government receiving that, should that help?

LUKE-           That’s relatively small in the context of the overall schools’ budget, so it’s maybe about 2% of the total schools’ budget which is around £60bn. It will probably be welcome revenue for the government, but it isn’t going to change that much.

EMMA-         From your position looking at the data, you say it’s not manageable and it’s not sustainable, but have you any thoughts on what kind of a Band-Aid or something that they could do longer-term? I mean obviously they’re looking at changing the whole system, that’s a really long-term effort, and that takes a lot of money too which they’re struggling to find.

LUKE-           The most important thing I think for everybody in the system actually, is setting out a clear vision for provision over the long-term. So setting out in quite some level of detail how they want the system to work in five, six, even 10 years time, so that it’s a system that can be effective over the long run, it can be financially sustainable and provide the right level of support.  How we get there is going to be determined by the financial situation of the country, the level of public finances. But setting out a clear vision is really important.

There are other things that the government could do in the meantime. At the moment, support for pupils is really, really individualised. An EHCP sets out the level of support for an individual pupil, it doesn’t describe how the system could best support pupils in a very general sense. There might be better forms of training teachers could receive for supporting pupils with autistic spectrum disorder, or with ADHD, that will better support now and will not actually be that expensive.

EMMA-         Okay, that’s interesting, a holistic approach, so maybe like kinder schools that maybe are less sensory difficult for people who are autistic, etc, that kind of thing?

LUKE-           I think those sorts of forms of support are not inexpensive, but they can be relatively effective. Providing teachers with clear training and understanding of how better to support pupils with autistic spectrum disorders, with mental health needs, with ADHD. Just simple training to ensure that they know how to support pupils in the classroom in an effective manner, I think could be really, really effective and not necessarily prevent problems in the future, but just mean that things don’t get out of hand too quickly.

EMMA-         Okay. And what about there’s a lot of talk that there is going to be a big drop in children actually starting school just because of population decline. Does that give wriggle room in terms of helping with the SEND crisis, I think we can easily say?

LUKE-           Probably not. The numbers of pupils in schools is going down, partly because the birth rate’s going down and because of demographic change. But the government is still forecasting a large increase in the number of pupils with Education, Health and Care Plans over the next four to five years, and that’s just because of pupils moving through the system. It’s not unique to the UK, so we see increases in autistic spectrum disorders, ADHC and mental health needs, across many high income countries, it just appears to be a feature of modern life.

EMMA-         Luke Sibieta from the Institute for Fiscal Studies, thank you for joining me.

LUKE-           Pleasure.

EMMA-         We asked the government to comment on this latest research. A Department for Education spokesperson said:

[Clip]

MALE-          There has been mounting evidence which lays bare that the SEND system has been on its knees for years with too many children struggling to have their needs met and parents forced to fight for support. It will take time, but we are determined to restore the confidence of families up and down the country and deliver the change they are crying out for. We are already making progress with £1bn extra investment in day-to-day services, £740m directed to support local authorities to create more special places in mainstream schools, and the Curriculum and Assessment Review, which will look at barriers that hold children back from the best life chances.

MUSIC-         Jingle.

EMMA-         I cannot believe that I’m about to say this, but my next guest is talking to me from the South Pole. But with good reason, because Jonny Huntington has just become the first disabled person to ski there alone and unaccompanied. He skied 566 miles across Antarctica in just over 45 days, dragging his equipment on a sledge. Hi Jonny, and congratulations.

JONNY-         Thanks Emma, that’s really kind of you.

EMMA-         What’s it like there at the South Pole at the moment?

JONNY-         I’m at Union Glacier at the minute, which is a few hours’ flight from the South Pole, I actually left the South Pole yesterday evening. You’ll forgive me for stumbling over my words because it’s something which hasn’t fully sunk in yet I don’t think.

EMMA-         Yeah.

JONNY-         The South Pole itself was not only the end of a very long trip, and also marking becoming the first ever disabled person to make that trip, but also the end of a five year project and a real sort of benchmark for me of 10½ years of living with a significant disability.

EMMA-         Let’s go back to the beginning to understand why you have the restrictive mobility you have, and why you are so resilient and so keen to do these, in my opinion, ridiculous adventures? Tell me a bit about that.

JONNY-         I had a blood vessel burst in my brain, in my primary motor cortex on my right-hand side, which paralysed me completely down my left-hand side. I was incredibly fortunate, I was in rehab for two and a half years, and I certainly wouldn’t be in this position now if it wasn’t for that rehab. I then got involved with a couple of military charities that taught me to ski, to get up into the mountains and do the more technical side of expeditioning, and yeah, it kind of came together to do this.

EMMA-         Let’s talk a bit about the challenge itself. Challenge almost feels like too small a word for it. You travelled 566 miles, 45 days, dragging stuff on a sledge, when you have significantly restricted mobility on one side of your body. How did you do that? What’s the mechanics of that?

JONNY-         I suppose in very simple terms, basically my right leg does the work that my left leg is unable to do. That was a really significant part of my training for this, basically getting the left leg to a point where it was strong enough to just survive the trip, and then getting everything else to a point where it was basically strong enough to do the trip. The skiing in and of itself was not overly technical or complicated, which did make life a bit easier. But as you’ve alluded to, the sledge that I was pulling, when I started, that thing weighed over 20 kilograms more than I do.

I think probably the single biggest struggle was the pure physicality of it. To be honest, that was to be reasonably expected. What I didn’t encounter which I was expecting to, and in a way I kind of feel I’ve cheated slightly because the weather has been pretty spectacular, I’ve had whiteouts probably the fingers of one hand worth of days, the vast majority have been like it is today here which is just bright sunshine, not a cloud in the sky, absolutely glorious weather. I haven’t had winds over 30 kilometres an hour, which is highly, highly unusual for an expedition of that length.

What the flipside of that coin was though, however, was basically the sun melted the snow and the snow conditions were atrocious from my point-of-view throughout, very, very soft, making the pulk extremely heavy, very, very hard work to move. So rather than turning itself into a sort of more technical challenge had the weather been bad, i.e., can you put a tent up in high wind etc, all of that kind of stuff, keeping fingers free of frostbite etc, I’ve basically been dodging sunburn and heatstroke, just having to work incredibly hard to get that movement in.

EMMA-         You know what, we’ve actually got a clip of your audio diary.

[Clip]

JONNY-         So, end of Day 4 today, and yeah, pretty brutal day really. The temperature was super-significant today in terms of hot, so I was walking most of the day in just a base layer. But there was no cloud at all and so the sun is absolutely definitely scorching. And then by the half way point about lunchtime today, basically hit one foot or two foot high ridges that you just had to kind of ski over, and then like three metres later your pulk would hit them, so you have to then take the strain and pull that over as well. And this was just like relentless for about six kilometres.

EMMA-         In one interview or in one piece you said, “Dragging this mangled body across Antarctica.” That’s a bit harsh on yourself.

JONNY-         You’ll have to excuse my slightly gallows sense of military humour. It’s certainly not the body it once was. I’ve been on painkillers for some time, and that was mainly due to the amount of strain that I was having to put through my right Achilles tendon. That was getting extremely painful and felt reasonably sort of sketchy towards the end of the trip, to the extent it was causing a significant amount of worry on my part just in terms of basically, ‘Am I going to take a step at some point and it’s just going to snap?’

EMMA-         Yeah, and then you have no leg to stand on.

JONNY-         Well quite. That would have been the end of the expedition, without question. It felt like there was a lot riding on it. That doesn’t make for an easy psychological state either.

EMMA-         No, because you’re spending your energy worrying about this tendon.

JONNY-         Exactly. When every step you take feels like one of uncertainty, that’s not a happy place to be. Fortunately for me, everything sort of lasted and held out and yeah, here we are.

EMMA-         I said in the beginning that you were alone and unaccompanied, so unsupported. What does that mean? I mean you must have been able to get help if you needed it?

JONNY-         Yeah. The unsupported status doesn’t mean that there was no support available at all, it means I finished having had no external assistance from when I started. So I didn’t receive any food drops or anything like that, didn’t need any spare parts or anything like that, I was dropped off and I finished and no-one fiddled with me on the way across. But no, you’re absolutely right, had everything gone wrong I had satellite phones on me, I had GPS emergency beacons etc, so I would have been able to punch the big red button and a plane/snowmobile/vehicle would have come to grab me as and when they could.

EMMA-         So how far was somebody away from you at any one time then?

JONNY-         Kilometres wise, I’m not sure, it’s a difficult one to answer. But it’s very weather dependent. With the conditions we had, the likelihood would have been that a plane would have been there to pick me within 24 hours.

EMMA-         Oh right, okay. So you really were on your own to be fair to all intents and purposes.

JONNY-         Oh yeah, I mean don’t get me wrong, I haven’t seen a human being for 46 days.

EMMA-         Wow!

JONNY-         I’ve barely seen anything for 46 days to be fair other than snow.

EMMA-         You’re doing everything with one side. Were you using specialist ski equipment?

JONNY-         I used a much lighter ski rig than normal in order basically to alleviate some of the strain on my bad leg. But other than that, it was reasonably un-adapted kit. I’ve been very fortunate in that because I’ve been skiing for a significant amount of time as a disabled athlete, I know how my body works when I ski, I’ve done enough of it, that there weren’t any surprises out on the ice. My own views of my expedition were, now that I’ve done this one, I reckon I could do a really good run! [Laughs]

EMMA-         Oh no, are you already thinking about the next thing, Jonny, are you one of those people?!

JONNY-         I mean I am a bit of a sucker for punishment. I do know what the next thing’s going to be. It won’t be a ski expedition. Don’t get me wrong, I will be doing plenty of skiing in-between, but the next big challenge will be running, in 18 months’ time. The intention basically is to run 50 marathons in 50 days across 50 US states.

EMMA-         You must be super-proud of yourself. What was your high point of the trip?

JONNY-         Oh, reaching the Pole. I would say the day-to-day was reasonably mundane, bit of a suffer-fest, but getting to the Pole was an extremely cathartic moment.

EMMA-         And what did you do?

JONNY-         I had a little cry. [Laughs]

EMMA-         Did you stick a flag somewhere, or did you have a little whisky? What was your end thing?

JONNY-         I had some flags with me and I had some of my sponsors’ flags, so we did some photos and got some nice pictures and stuff.

EMMA-         Jonny Huntington, congratulations again, and thank you for joining me on Access All.

MUSIC-         Jingle.

EMMA-         That is it for this episode. Remember, you can contact us on WhatsApp: 0330 123 9480, you can send a text or a voice message, you can find us on Instagram and X @BBCAccessAll, or you can send us an email accessall@bbc.co.uk. Thanks to all our guests this week, thanks for listening. Bye.

[Trailer for Newscast]

CHRIS-          You know when you’re worried about something, but then you talk to your friend who knows more about the subject than you do, and straightaway you start to feel better? That’s what we try and do every day on Newscast.

MALE-          Now, they’re saying that that would be simple to do, it would give everyone certainty.

CHRIS-          We talk to people who are in the news:

FEMALE-      You were chasing me round with a plate of cheese.

CHRIS-          We talk to people who know what’s going on in the news:

MALE-          At least I didn’t get up and slap anybody.

CHRIS-          We talk to people who understand what the news means:

MALE-          I think that he’s decided he’s going to listen, and then he might just intervene.

CHRIS-          And we talk to the best BBC journalists, asking the most important questions:

CHRIS-          What’s wrong with chinos? You don’t want everybody wearing chinos?

FEMALE-      Don’t start me, Chris.

CHRIS-          That’s Newscast from BBC News, the podcast that knows a lot of people who know a lot about the news.

FEMALE-      And I was like, go on Kay, put some more welly into it!

CHRIS-          Listen to Newscast every weekday on BBC Sounds.

CHRIS-          I’m glad I asked that.

FEMALE-      I’m very glad that you asked that!