- 16 hours ago
- #realityrealmus
Panorama Season 2025 Episode 31
#RealityRealmUS
Reality Realm US
#RealityRealmUS
Reality Realm US
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Short filmTranscript
00:01Lots of people will know me as Linda Carter in EastEnders.
00:06And actually, why all hurt would you tell him?
00:09You made it sound like he wouldn't care.
00:12I have wanted to make a documentary about special educational needs for a really long time.
00:18I have a son, he is autistic, he has ADHD and he's dyslexic.
00:24To try and get the support that you need, you have to fight every step of the way.
00:29It has been eight months of such hard work and perseverance and fighting.
00:39I hear from lots and lots of families about how the system is broken, how things need to change.
00:46And so I want to shine a light on it.
00:48I want to speak to families who are struggling.
00:52I want you to try putting school uniform on, please.
00:54No! No! Not getting breath!
00:57All I want is what's best for my child.
01:02We are going to be looking at the process around getting support for your child if they have special educational needs.
01:08It just affects you physically as well as mentally.
01:12It's draining in every way imaginable.
01:15Draining.
01:17That's all I got for you.
01:21They ask you to jump through so many hoops.
01:24We are fighting against the local authority because we are fighting for our daughter.
01:29It's not a surprise, but it's just a bit of a kick in the teeth.
01:35I am very fortunate to be in a position because of my job where I do have a voice, I have a platform, and I want to use it.
01:44Hey!
01:45Hello.
01:46So exciting.
01:47Come on down.
01:48Welcome to the marina.
01:49So nice to meet you.
01:50This way.
01:51Oh, wow.
01:52To the inferno.
01:53To your boat.
01:54Yes.
01:55Your boat.
01:56How cool.
01:57It's definitely not cool.
01:58It's extremely hot in there.
01:59I'm in London, and I'm here to meet Buddy and his mum, Tunde.
02:15Hello.
02:16Hi, Buddy.
02:17Hey.
02:18Love it.
02:19Love it.
02:20I'm the perfect size for a boat.
02:22Small.
02:23I don't know.
02:24This one is still a little bit too low down.
02:26Well, that's all right.
02:27That's all right.
02:28I think it is much harder if you're taller.
02:31Today's a school day, but not for 15-year-old Buddy.
02:36He's not been able to go to school since October last year.
02:40Is there anything about school that you miss?
02:42Um...
02:44It's okay if there isn't, by the way.
02:46Not really.
02:47Maybe messing around with my friends a little bit.
02:49Okay.
02:50Friends.
02:51It was fun to wind them up.
02:52Oh, okay.
02:54Buddy's autistic.
02:56That means his brain experiences and reacts to the world in a different way from many people's.
03:01He struggles with meeting people his own age, understanding his emotions and anxiety.
03:08Would you mind showing me some of your toys?
03:10Of course I would.
03:11All right.
03:12Hold on.
03:13You want to go and get them and bring them back?
03:14Yeah, they're all in my room.
03:15Hold on.
03:16Okay.
03:17Oh, you are in for a treat.
03:18Am I?
03:19Is he going to get them all?
03:20I think so.
03:21Hold on.
03:22Whoa.
03:23Wow.
03:24You've got them all.
03:25Yeah.
03:26What's that?
03:27Reindeer Dog.
03:28He's the one that I've owned for the longest.
03:30Does Reindeer Dog go with you wherever you go?
03:33Um, yeah.
03:34Most of the time.
03:35Unless it's like a pool because then he'll get wet.
03:37Yeah.
03:38Yeah, fair enough.
03:39We can't take him in the water with us.
03:40You can't?
03:41No, absolutely not.
03:42Why do you like to have him with you?
03:44Um, hmm.
03:46Sort of become a habit of routine maybe.
03:50A little bit of anxiety really, especially like I guess occasionally too.
03:53Yeah?
03:54Does he make you feel like sort of better or?
03:56Yeah, yeah.
03:57Most of the time.
04:00Did you do this?
04:01Yeah.
04:02Couple of drum loops.
04:03It's really good.
04:05Yeah, I know.
04:07You know?
04:08Of course you know.
04:09My son, he likes to listen to music that has got like a strong beat quite fast.
04:16He says it's like what he hears in his brain all the time.
04:20It's a bit like that in there.
04:22Ohhhh.
04:23Okay.
04:24All right.
04:25Yeah, I get that.
04:26All right.
04:27Yeah.
04:28Okay.
04:29Is it like that in yours sometimes?
04:30Yeah, yeah, yeah, yeah.
04:31Yeah?
04:32Yeah, yeah, yeah.
04:33It's interesting, isn't it?
04:35Yeah.
04:36Buddy's autism means he needs support at school to help him learn and make friends.
04:42How do you talk to people when you don't really understand them, you know?
04:46How do you make them understand you when you don't really express yourself in ways that are familiar to them?
04:51Tunde and Buddy used to live in Scotland, where he was in mainstream education.
04:57But he found his comprehensive school a struggle at times, and his mum says he had problems with other students.
05:03Mercilessly bullied by everybody.
05:06Did the school do anything about the bullying?
05:08They said that they had.
05:10They said they talked to the people who were responsible, but every time they spoke to one group, another group would take over.
05:15Um, yeah.
05:21Last October, Tunde moved them to London to be closer to her family.
05:26But Buddy hasn't been to school since then.
05:29She wants him to go to a school that offers extra help to children who can't cope in mainstream education.
05:35I wrote to the local authority and said, we've moved here, I have a 14-year-old, he needs a school.
05:41They were like, just apply for the mainstreams, because I applied for, I think it was 11 mainstream schools in the area, two out of the borough, and maybe four got back to me.
05:52She says the schools that responded told her they were full, or they couldn't offer Buddy the extra support he needs without funding.
05:59Since then, the council's arranged lessons for him in a library for 19 hours a week.
06:06What are you most afraid of if Buddy doesn't get the support he needs?
06:11Mostly it's that he'll just be at home again for another year.
06:15It's all about the social interaction for me.
06:22No, I'm not going to school, Mummy!
06:25Leave.
06:26Leave?
06:27What's happening today?
06:29Stay at home.
06:31I want to be alone.
06:32In Dorset, it's also a school day for six-year-old Etta.
06:41Or maybe not.
06:42Dad, leave!
06:44What about school today?
06:47I'm not going to school.
06:50I don't want to go.
06:53You're not going.
06:55Why?
06:56Because I don't want to.
06:57I'm too sleepy.
06:58Just go!
06:59I don't think she's in a very good place today, kind of emotionally, mentally.
07:15Now go!
07:16Etta's also autistic, but it affects her in a different way from Buddy.
07:26Most days start with Etta telling me that she is not going to school.
07:34So it's up to me to negotiate what happens after that point.
07:41This behaviour is not just the tantrum of a six-year-old.
07:45Part of Etta's autism means she gets very anxious when she's told what to do.
07:50So she avoids demands at all costs.
07:55I love you.
07:56No.
07:57OK.
07:59Etta's paediatrician has diagnosed her with autism with a demand-avoidant profile.
08:06Each part of a routine is a demand, and so her whole body is saying,
08:12oh, I can't do that.
08:14It's not, I won't.
08:16It's, I can't.
08:19I want you to try to put your school uniform on, please.
08:22Nope.
08:23OK.
08:24You can wear home clothes to school.
08:25No, I'm not going to school, Mummy!
08:28She used to run out of our house to avoid going to school, and that was absolutely terrifying.
08:35I just don't like talking about school, OK?
08:38If you were to try to force her, she'd go into a meltdown.
08:43Whether we're staying at home or going to school, we need to do getting up first.
08:49Yeah.
08:50Maybe we're not going to school.
08:52No!
08:53No!
08:54Listen to Mummy first.
08:55I want my answer!
08:56Stop.
08:57Listen.
08:58Listen.
08:59I want my answer!
09:01Listen first.
09:02Etta's also been diagnosed with attention deficit hyperactivity disorder, or ADHD.
09:08It makes it hard for her to keep still and keep quiet.
09:12And sometimes she's awake at four in the morning.
09:17Last school year, Etta only made it in around 70% of the time, and was often late when she did.
09:25I don't feel right today about school, remember?
09:29Matt, I feel like I have to go to school.
09:40Because I do.
09:43And I...
09:46We are going to school.
09:49We are?
09:51Yeah.
09:52OK.
09:54That's a change.
09:58Right.
09:59We're sure?
10:00Yeah.
10:02OK.
10:09Today, Etta arrives more than an hour late, and it's taken three hours to get her ready.
10:15And if it's hard for Etta to get to school, that's nothing compared with how she finds it when she's there.
10:23School for Etta is hard.
10:24It feels like somewhere that I send her and she comes home with more anxiety.
10:29I think there are aspects of the learning that she struggles with a little bit.
10:34There are aspects of the relationships and friendships she struggles with.
10:39There are aspects of just uncertainties of her day.
10:43Because she doesn't have control of these things.
10:45I think it actually does come back to this control thing.
10:50Etta's getting help from school with her ADHD and special lessons about managing her autism and emotions.
10:57Etta's mum, Heather, says the school can't afford to do any more beyond that.
11:00The school have supported us so much and supported her so much, but they have reached the end of what they are able to put in place for her.
11:13I am so drained by it because it is relentless and it feels like it's just never going to stop.
11:23Start from this way?
11:24Yeah.
11:25Ready?
11:26Whoa!
11:27Yahoo!
11:28I so often feel like I'm forcing her to do things when she's telling me that it's too much for her and I don't know what's right to do.
11:43And I want to do the right thing for everybody and I don't know what that is.
11:47It's hard.
11:54It's really hard.
11:57All I want is what's best for my child.
12:07It should also be a school day for 12-year-old Karis, but she's not made it in for almost six months.
12:13How often you go silent in front of your mum?
12:18I love you.
12:20OK.
12:21I think you'll feel better once we just kind of get going.
12:24Like Buddy and Etta, Karis is autistic.
12:28She also struggles with a condition called selective mutism, also known as situational mutism.
12:35Our body can respond in many ways to anxiety and for Karis that first looks like not being able to speak.
12:45That's what situational mutism is.
12:48Today Karis is doing her regular maths lesson with her mum Vicky.
12:53We asked to film it, but Karis doesn't seem comfortable.
12:56There are some times when it's just too much and what, if it's alright with you, Joseph might just stand there and just film me having a chat to you on the sofa a bit like what we've been doing.
13:09No.
13:12Karis got very anxious, she went into a freeze response, which meant she just shut down, she couldn't, she couldn't speak, she couldn't really engage.
13:25So the filming that we planned didn't happen.
13:36We're now approaching Scarborough, where this service terminates.
13:42I'm going to see if Karis can have a chat with me.
13:46After discussing it with her parents, she's agreed to try.
13:50Hi.
13:51Hi.
13:52Vicky, Karis.
13:53Hi Kelly.
13:54Nice to meet you.
13:55Welcome.
13:56Come in.
13:57I have brought some things with me today, because I know you like making things and I really like making things.
14:06I love doing all sorts of things with wool.
14:07So we're going to make some pom-poms.
14:11I'm going to ask you some questions, Karis, basically, and if you don't want to answer anything, you don't have to.
14:16I know that in certain situations, you have something called situational mutism.
14:24Is it something that you feel like you can't control? Does it just happen?
14:29Yeah.
14:30It just happens.
14:32Well, when I was at primary school in the register, I wasn't able to speak in the register.
14:37OK.
14:38And, like, in class, usually.
14:41Mm-hmm.
14:42Like, if the teacher was asking questions for the whole class, like, I wouldn't be able to answer.
14:47Yeah.
14:48So...
14:49Mm-hmm.
14:50Like, the whole class always struggle with that.
14:52Uh, yeah.
14:53I understand.
14:54I can understand that.
14:55Mm-hmm.
14:56How's that pom-pom coming along?
14:58Oh, look!
15:00That's gorgeous!
15:01Mm-hmm.
15:02Isn't it?
15:03Yeah, it really is.
15:04Mm-hmm.
15:05When Karis started at the local comprehensive school last year, she hadn't been diagnosed
15:11with autism.
15:12But she was already getting some extra help.
15:15She seemed to be doing well.
15:17But in December, things fell apart.
15:19She was on the stairs, um, inconsolable, couldn't get up, couldn't, couldn't stop crying.
15:28Um, it was a, to us, it looked like a complete emotional breakdown.
15:32Mm-hmm.
15:33It was very traumatic.
15:34Were you scared?
15:36I was, well, as a mother, seeing your child like that, it is, it is terrifying.
15:45And it's confusing, and you think, well, what have, what have I done wrong?
15:50Karis was diagnosed as autistic three months later.
15:54Now, we understand what was happening.
15:57She was doing this thing called autistic masking, where you just, you just try to fit
16:03in, you try to pretend you're not autistic.
16:06Um, it's often, you know, subconscious.
16:08You know, I don't think she was consciously doing it.
16:10But it's a survival mechanism for children, often, to fit into a system that is actually
16:17not, not working for them.
16:20She had what's called an autistic burnout.
16:26Karis' dad, Lee, is a senior pastor in a church, and Vicky helps to run the services.
16:32For three years, they've been asking North Yorkshire Council for extra help so Karis could cope better at school.
16:40We thought, surely, you need to look ahead at what's coming and be preventative,
16:44put things in place that will help support her.
16:48I still remember when Karis was struggling to go back into school,
16:51and I had seen her so anxious, I had seen what it was doing to her,
16:55and I said to myself internally, was that worth it?
16:58All the children I'm meeting in this film have special educational needs and disabilities,
17:08also known as SEND.
17:11SEND is a very broad group.
17:13It's not just autistic children.
17:18It includes people who struggle with speech and language, have ADHD, and physical disabilities,
17:25among other conditions.
17:26Special educational needs is a really broad term because it's talking about a highly diverse bunch of kids,
17:36all with very different needs in mainstream schools.
17:40The system just isn't geared up for that at all.
17:43It's really rigid.
17:47I'm focusing on autistic children because more and more parents are asking their councils for help with their education.
17:54Schools in England already support children with SEND, but if parents think their child needs more help,
18:05they can make an application to their local authority.
18:09And it's something I know a lot about.
18:12OK, let's talk about education, health and care plans, or EHCPs.
18:19You're going to hear a lot about them in this film.
18:21Me and my husband spent hours and hours sorting out the paperwork to apply for our son's EHCP.
18:29Now, it's a really important document because,
18:32one, it states the school that your child is meant to go to,
18:36and two, it says what extra support they should get.
18:40Now, just like we were, many families are desperate to get one because it's legally binding.
18:46But getting one isn't always straightforward.
18:48Phone, glasses.
18:54Mm-hmm, mm-hmm, mm-hmm, good guys.
18:57All right, cool, cool.
19:00Moisturized. Use the orange.
19:13Where's the head thing?
19:15Head thing? Oh.
19:17No, I know what you're talking about, but I don't know where I am.
19:19All right, never mind. You look beautiful anyway.
19:21Oh my goodness, look at that.
19:22Have you ever seen such a beautiful baby?
19:24Oh.
19:25Marla. All right.
19:28Tunde and Buddy are applying for an EHCP.
19:32Today, he's got an assessment.
19:35It's his second in five days.
19:38There's not enough time for anything.
19:40That's how I feel about it.
19:41There is not enough time.
19:42I can't fit it around work.
19:43The appointments come thick and fast and at very short notice.
19:47And, yeah, it's a head freak.
19:51Where's your backpack?
19:53Oh.
19:54Get out. Get out, get out, get out.
19:55I'm out.
19:58Bye.
20:00It's the second time Tunde and Buddy have tried to get an EHCP since they moved to London.
20:08First time round, Southwark Council rejected them without assessing Buddy.
20:13Around a quarter of applications are turned down before the assessment stage.
20:21How does it make you feel doing all of these assessments?
20:23What's this, folks?
20:38Draining.
20:41Yeah.
20:44That's all I got for you.
20:47I got for you.
20:52Tunde says when they lived in Scotland, she didn't have to apply for the equivalent of an EHCP.
20:58The comprehensive school there organised some support focused on his learning.
21:05How did it feel knowing that you couldn't just get him the support that he'd had at the school in Scotland?
21:11It was a madness.
21:13I've got to say, like, it's so weird.
21:15It just feels like it was so easily done.
21:18And it could be easily done again.
21:22Tunde says applying for the EHCP has taken up so much of her time that for now she's had to give up her job as a midwife.
21:30It was all too much, Kelly, and I just, I gave, I was like, I can't, I can't, like, do the parenting.
21:35I can't get him to these appointments and work at the same time.
21:43I couldn't get my son seen in the right amount of time and see other people's babies in the right amount of time.
21:48And it was a toss up and my son won.
21:56I am in Dorset this morning and I am here to meet Etta and her mum, Heather.
22:01Hello.
22:02Good morning.
22:03Good morning.
22:04Thank you so much.
22:06Etta's hiding upstairs.
22:08Oh, no problem.
22:09She's getting dressed.
22:10She's getting dressed.
22:11Etta's family's a bit further along the EHCP process. She's already been assessed.
22:26It's been long. Just filling in the paperwork at the beginning, before sending it away, it took ages.
22:34There are so many pages of information that they want from you. I mean, it's, it's insane.
22:47You've told me lots about how great Etta's school is, and I'm just playing devil's advocate here.
22:52Okay. But why then do you, are you pursuing an EHCP?
22:57The EHCP would potentially, hopefully, provide some extra funding to give Etta additional support at school.
23:07Okay.
23:08That is going to be essential for her actually just to attend, first of all, please.
23:13Please.
23:15And then to thrive.
23:18Could I maybe brush your hair? Would you let me?
23:21Would you let me or not?
23:24I like.
23:25It's okay.
23:26Well, I'm the must at the fringe.
23:27Okay. You do the fringe, and then maybe I could do a bit at the back.
23:31Heather's also given up her job. She used to be a teacher. Now she spends her time looking after Etta.
23:39The personal impact for me is that I feel very tied to my daughter, my home, and, of course, I want to do everything I can for her.
23:50What do you need?
23:52Tell me.
23:53None of my life anymore is about what I need or want. There's so little I can do for myself now.
24:07More than half of parents of autistic children have had to take time off work to support their child.
24:13An EHCP that gives Etta more help at school might mean Heather can go back to work.
24:23The person you are trying to reach is currently unavailable. Please leave a message after the tone.
24:29I would love it if you could let me know today what that outcome was.
24:39Whenever I've tried to contact our provision lead for the full process, I've had no response.
24:45It's infuriating because that's the person that's putting together all of our paperwork.
24:52I appreciate they're very busy people. They've got many, many HCPs to get through.
24:57But it does feel like us and them.
24:59Today, I've got an email to open from the local authority.
25:12It feels like a big day today.
25:18Emotions are running quite high.
25:20Karis' family have been trying to get an EHCP from their council for three years.
25:35Their first application was turned down after Karis was assessed.
25:39Their second has taken almost two years, but it's now been accepted by the council.
25:45There's still one thing to be settled.
25:47The crucial thing today will be the local authority will name a school for Karis.
25:53And the big question and the big bit that makes me a bit nervous is which school will they name?
26:00Will they name Karis' current school, the mainstream school, which she can't attend.
26:07She's not attended for five months.
26:10Karis hasn't been at school full time after she had a burnout in December.
26:13The EHCP will say if she goes back there.
26:18So, in section I, they have named the provision and they have named mainstream provision.
26:26So, they've named the school that she can't attend, they've named the school that she had an autistic burnout going to, they've named the school that say they can't meet her need.
26:43Which, none of this is a surprise, but it's all just hugely disappointing because now we have to appeal.
26:53And, and yeah, so it's just, it's just more fighting.
26:57So, this is, it's not a surprise.
26:59But it's, it's just like a bit of a kick in the teeth.
27:05So, yeah, that's, that's what it says.
27:09Disputes between parents and councils can be resolved in mediation or at a tribunal.
27:25Karis' family tried both before she got an EHCP.
27:3099% of cases in England that reached tribunal are won by families.
27:36I think there's a deliberate policy of fatigue so that they know that not every parent will come back for appeal.
27:44So, they lose some.
27:45So, now we are fighting against the local authority because we're fighting for our daughter.
27:52But in battles, people get hurt.
27:55So, that deliberate, and I think it is a deliberate policy of fatigue, is hurting children, families and parents.
28:04And it's got to be better than that.
28:06I just think it's got to be better than that.
28:07North Yorkshire Council says it doesn't comment on individual cases, but it's dedicated to working with parents, school leaders and all partners to meet the special educational needs of children and young people.
28:21It says it's seeing continued rising demand, but despite this, it's making improvements to the speed that EHCP applications are processed and completed, with almost 80% of plans issued within 20 weeks.
28:34When my husband and I tried to get an EHCP for our son, we also ended up heading for a tribunal, because the council refused to assess him.
28:47I have to say that left me feeling really angry.
28:52And then I felt frustrated, and then I felt like I was letting my son down.
29:00We sent everything off.
29:02I suddenly got an email from my local authority saying, we've agreed to assess your son.
29:10And it was such a huge moment.
29:15It's the moment that I actually filmed myself talking about it.
29:19I wouldn't normally put such a personal message on Instagram, but I have just received an email to say that they have agreed to assess my son.
29:35It has been eight months of such hard work and perseverance and fighting to get to this point.
29:47I think one of the main things is that, as a parent, you feel completely and utterly powerless.
29:56Powerless to move things forward, powerless to help your child.
30:00And because of that, it's an extremely frustrating system to have to work with.
30:08When parents apply for an EHCP, they may not know what's going on inside their local council.
30:27So I want to know what it looks like from a council's perspective.
30:30West Sussex was one of the few prepared to talk to me on camera.
30:35The current system is actually very adversarial.
30:39Our parents are increasingly tired and anxious and fed up of fighting.
30:44Staff, our sickness levels are really, really high at the moment.
30:48The current system doesn't work. It is broken.
30:50It's not delivering the best outcomes for children.
30:54What is the overall level of need that you're seeing now compared with the past?
30:59We have seen the demand for education, health and care plans outstrip, send funding.
31:06So how that looks in West Sussex is that in 2015, we had something like 3,423 children with an education, health and care plan.
31:17Today, that figure is in excess of 10,000.
31:23It's the same story across England.
31:26The number of children and young people with EHCPs has increased by 80% in the last six years.
31:31That's partly because parents and schools have got better at identifying children who have special educational needs, especially autism.
31:51People being diagnosed with autism has massively increased over the last 20, 30 years.
31:55Research that has been done suggests that it's a case of better identifying people who are autistic, not that more people are autistic.
32:04That means quite naturally, you've got more people coming forward saying, I need some help and I think I might be autistic.
32:10Schools should provide general support for special educational needs from the funding they get from central government.
32:16The amount of money they're expected to spend on each SEND pupil has stayed the same since 2013, while costs have gone up by more than 40%.
32:26As a result, more families are turning to EHCPs to get extra support at school.
32:33And councils are picking up the bill.
32:36How under pressure is the council financially?
32:45Massive. Under massive pressure.
32:48Year on year, the demand has increased to the extent now that in 24-25 year end, that deficit sits at £123.2 million.
32:59And that is money that is really essentially meant to be for local services, which would have ordinarily gone to repair your roads and other local services.
33:12The current position is not sustainable.
33:15I've just come out of my meeting with Jackie.
33:18One of the things I thought was really interesting is the fact that Jackie said the system is broken.
33:22It's not just parents saying it. It's coming from the local authority as well.
33:27And for her, that is all about the enormous deficit that her local authority, West Sussex, are facing.
33:34It's already at over £100 million.
33:37And that is colossal. That doesn't work for anybody.
33:47Councils can't keep up with demand.
33:49Many run specialist schools for Sen children.
33:54But despite an increase in the number of places, there still aren't enough.
34:03In Scarborough, Vicky and Lee wish there were more options for Carys.
34:09Where we live, we have mainstream school.
34:13We have, at the other end, special school.
34:16Mm-hmm.
34:17We don't have anything in the middle.
34:19Mm-hmm.
34:20We don't have anything for the in-betweeners, the children like Carys that are too special for mainstream,
34:25but not special enough for a special school.
34:28There's this gap.
34:31Vicky and Lee looked into an independent school that charges almost £15,000 a year.
34:36They asked the council, which has forecast a Sen deficit of around £24 million to pay the fees.
34:45There was a time when you asked for funding for an independent school for Carys.
34:50How do you feel about asking the local authority to fund that?
34:58The option of mainstream school isn't open to us at the moment.
35:00So we are picking up the pieces now, and picking up those pieces is not cheap emotionally, and it's not cheap financially.
35:11But if she'd have had the support in the first place, perhaps we wouldn't be in this situation.
35:17We're not, we're not naive.
35:20Mm-hmm.
35:21We know that there are limited resources all over the place.
35:26But we do know that in life you find, you find money for what you think is valuable.
35:33Carys's autism means she's sensitive to sounds and smells, making school especially hard.
35:42She doesn't find it easy to talk about, but she's agreed to let us film while she discusses it with her dad.
35:49Do you remember back at that mainstream school, what are some of the things you found really, you found really hard?
35:55Well, the busyness and noisiness of it, because in some of the classrooms, so they would do like a loud alarm, like a fire alarm for a few seconds to let us know.
36:10So the classroom changing, so the bell, that was really loud, so there wouldn't be time to put a bit of earplugs in.
36:16Carys tried a few taster days at the independent school, but couldn't manage there either.
36:22We want to find the places where you can, you can thrive.
36:28Mm-hmm.
36:30What do you think when it didn't work? Do you think you were disappointed? Or not?
36:36Kind of.
36:37Kind of?
36:38I thought you guys would be a little bit disappointed that it wouldn't work out.
36:42That stressed you then, even more?
36:44Mm.
36:45Yeah.
36:46Do you think we're disappointed it didn't work?
36:48No.
36:50We love you.
36:51We love you.
36:52We love you.
36:57Oi!
36:59Ha-ha!
37:00Hello!
37:01Hello!
37:02Nice to see you again!
37:03How are you?
37:04Come on in at the way.
37:05Todd, you must be.
37:06Hello.
37:07Nice to meet you.
37:08I'm Kelly.
37:09Hiya.
37:10Hiya.
37:11Thank you for having me.
37:12I'm sorry.
37:13Come on through.
37:14Big news in Dorset.
37:15The council's agreed to provide extra support for Etta.
37:16Her parents have been sent a draft EHCP. This is the stage before a final plan is agreed.
37:21Where are you at with it?
37:22It doesn't feel like it's remotely suitable.
37:23Hello.
37:24Hello.
37:25Hello.
37:26Hello.
37:27Hello.
37:28Hello.
37:29Hello.
37:30You're hungry.
37:31You're hungry.
37:32Okay, we'll get you something.
37:33Come out.
37:34Yeah.
37:35What would you like?
37:36Peasty my baby.
37:37Do you want some apple boats?
37:38Apple boats?
37:39Peasty my baby.
37:40Is that a yes or a no?
37:41Heather and Todd have got a few weeks to suggest changes to the draft EHCP.
37:45They want Etta to stay at her mainstream schools.
37:47Please wait.
37:48Yes.
37:49orientation.
37:50Yeah, what would you like?
37:52Peas-tea my baby.
37:54Do you want some apple boats? Apple boats?
37:56Peas-tea my baby.
37:57Is that a yes or a no?
37:59Heather and Todd have got a few weeks to suggest changes to the draft EHCP.
38:04They want Etta to stay at her mainstream school
38:07while getting more help making friends and managing her anxiety.
38:11They're worried the current plan puts too much responsibility on her teachers.
38:16They're suggesting an awful lot of provision.
38:19But mostly support provided by the teaching staff.
38:24I think we would really like Etta to be accessing some therapy of some sort.
38:32It feels like another battle, to be honest.
38:35Having fought to get it in the first place and then waited and waited and waited.
38:38And then you receive it, you read through it and you think,
38:40right, well there's things we've got to fight for again.
38:43It's one step forward and four or five steps back.
38:46Dorset Council says it's committed to putting the best interests of children, young people and families first.
38:53And it will continue working with the family to ensure the most suitable education setting can be provided.
38:59It's not unusual for parents to find there's more to do after they get an EHCP.
39:08Even once parents have secured an EHCP plan that they are happy with, they often find themselves having to check up on each and every part of it.
39:17People might face a pushback from the local authorities say to be like, what can we step back?
39:22What support can we start to row back now?
39:25It puts parents in a situation where understandably they feel like they're fighting every single day.
39:30When my husband and I got the EHCP, our son continued at his mainstream school.
39:39But then we had problems getting all of the support we'd been promised.
39:43We have had an EHCP in place for a good couple of years.
39:49I have to say the school are really brilliant and they are supporting our son in the best way they can.
40:00But on paper, what is written on my son's EHCP is not fully being delivered at school.
40:09And I don't blame school for that.
40:11I know it's about funding.
40:13I know it's about lack of resources.
40:15And I've had to really ask myself, do I want to fight this?
40:21Do I feel like I need to fight this?
40:23And actually, right now, my son is really happy.
40:27He goes to school happy and that is more important to me, actually,
40:32than what is written on that piece of paper.
40:34And I never thought I'd say that.
40:43Suddenly, there's this email and, yeah, we're giving him the EHCP and we'll be in touch.
40:50Tunde's also got a draft EHCP, but it's not clear where Buddy's going to school.
40:56His mum wants Southwark Council, which has a SEND deficit of more than five million,
41:01to pay for a place at an independently run school that works with children who struggle in the mainstream.
41:07It teaches some subjects in the community and has arts and music facilities.
41:12We've gone. We've looked around the school.
41:14They've told him everything that happens there.
41:16He's very excited.
41:17They've got, like, a recording studio and I think he can put his music on Spotify there.
41:22So that would be fantastic.
41:24They have offered him a place to start on the 1st of September.
41:27That was just, like, such a relief.
41:29I think I might have cried and I don't often cry.
41:31Tunde says she's been told by one person at the council that Buddy can go to the school.
41:37But another person's told her that might not be possible.
41:40Then I had a video meeting with the lady from the EHCP department.
41:47She's like, well, I don't think we can put that on.
41:50But I was like, well, he's already got a place there.
41:53They are pissing me right off.
41:56Like, communicate, do you know what I mean?
41:58So I'm trying to just put a lid on how freaking livid I am.
42:07Southwark council says it takes Tunde's concerns very seriously
42:11and will continue to support her family
42:13to ensure they receive the provision they need without further delay.
42:18It says it knows how hard it can be for families to navigate the system
42:22and how distressing delays in securing support can be.
42:26It says it's invested in a specialist information and advice team
42:30and now ensures children are assessed by specialist teachers at the earlier stage.
42:39So you would have the option of mediation or appeal.
42:43We've been working with Jess, who is our advocate, our SCN advocate.
42:49Vicky and Lee have called him back up in their fight against their council.
42:53They're planning again to go to tribunal because the EHCP will send Carys back to the school where she had a burnout.
43:02Jess helps us at every stage of the EHCP.
43:06She's an expert. She knows the law and also she knows what should be happening.
43:14Having a SEND advocate can be an advantage, but it's expensive.
43:18Jess charges £80 an hour.
43:21Vicky and Lee say they've had to ask their family to help pay the fees.
43:25My experience with the system is you've got to be an expert in SEN law or you've got to have money behind you to be able to navigate the system.
43:39It's a bit sad that it comes down to if you've got the money, you've got options.
43:44It's not right. It's not fair.
43:48But I think the problem is the system isn't right and the system isn't fair.
43:56For people like me who perhaps live on a boat and don't have a lot of disposable income, we're missing out.
44:02And it's always the same people who are going to be missing out and who are going to be falling through the cracks.
44:08But I also understand why people, if they did have the money, would absolutely do it.
44:15The government has declined to rule out scrapping the system of education, health and care plans, known as EHCPs, which are legally binding.
44:24Parents of children with special educational needs and disabilities, SEND, are heading to Westminster.
44:30They're taking part in the rally at Parliament Square.
44:34This rally is really not the kind of thing I'd normally go to.
44:37But what they're saying is their SEND reform has been vague. It's been a bit scary.
44:45We have a one in a generation chance to change children's lives to the better.
44:49And it will only happen if we all act. This is not going to be easy.
44:55While the families in this film have been applying for extra support,
44:59the government's been working on reforms that could affect the future of EHCPs.
45:04Wales has recently modified its system, Northern Ireland's about to start making its own changes,
45:09and Scotland is considering reviews.
45:11Why are you here?
45:13I would just really like the people in charge to listen to us as the people who know what the experience on the ground is like with our children.
45:24And I don't want changes to be made that don't actually work for us as parents.
45:31There's really just so many people who don't have a voice. So I think it's a really great opportunity today to make everybody aware that, you know, we're here, we are struggling, but we're not backing down.
45:45This isn't the first time change has been proposed. The Conservative government started making changes two years ago before it lost the election.
45:58We were not too far from Parliament last week for the SEND rally for this film.
46:03And today we are heading to the Department for Education. Georgia Gould, who is the Minister for Schools and SEND, has agreed to be interviewed.
46:12I know lots of people would love to be in my position and I don't want to mess it up.
46:21I'm going to go straight to it.
46:23Sure.
46:24What's going to happen to EHCPs?
46:27I can't give you all the details of all the different reforms we're doing because we've got a process that we're really working on with families and we want to honour that.
46:35But what I can tell you is that we are really, really dedicated to supporting children.
46:41early to making sure there's accountability in the system.
46:45The families that already have their EHCPs, will those EHCPs still be honoured?
46:51Within the reforms, we're not taking support away from families.
46:55We're wanting to put more support in earlier where people have fought for support and, you know, that's in place.
47:01We want to make sure that that support continues.
47:04I think a lot of parents that I've met recently have really high anxiety around what's coming.
47:12I'm really determined that we work with parents to build that system. Of course there needs to be a legal basis to that support.
47:19So there will be a legal basis to that support? There will still be something that parents can hold on to?
47:25There has to be a legal basis for parents to get support for special educational needs.
47:30I think what we really want to work with parents to get right is where does that accountability happen?
47:35How can we get support in at the earliest possible point rather than having to battle?
47:44The government says it's invested a billion pounds to help councils pay for EHCPs and 700 million on UCEN school places.
47:53It wants comprehensives and academies to provide more support. So what might that look like?
47:59Good morning. Good morning, Riley.
48:04Twelve-year-old Riley is a student at the Marvell College on the outskirts of Hull.
48:09How are things going in school at the moment since we last had a chat?
48:12Not too bad, just improving, actually. Excellent.
48:16Riley's autistic. Today he's having his regular catch-up with his CEN champion, Miss Puckering.
48:22How are you feeling about transitioning to year eight?
48:25Nah.
48:26You feel okay?
48:27Yeah.
48:28Okay, nothing more.
48:30Okay, nothing more.
48:31Is there anything that we can do to help you with getting your new timetable?
48:35No.
48:36For September?
48:37No.
48:39Every teacher here gets some special training and mentors two students like Riley.
48:44The school says it's all about putting CEN students at its heart.
48:48Should I address you as Mr Matthews or Damien? It's my first thing I'm going to say.
48:52Either. I don't mind.
48:53You don't mind?
48:54Damien I prefer.
48:55Well, Damien's your name, so let's go with that.
48:57Okay, no problem.
48:59I'd like you to tell me why you have approached CEN the way you have here.
49:06Those children were not succeeding in our school so we had to do something different.
49:10I also felt that the staff, there was almost a fear factor, Kelly, of teaching children with SEND because people were scared of doing the wrong thing, of not helping the child as much as they wanted to.
49:23So tell me what impacts you have seen it make across the school.
49:27Attendance in our school has gone up 2% this year, but for pupils with SEND, attendance is up 4%.
49:34Suspensions are down in our school by 48% this year, but suspensions for pupils with SEND are down 60%.
49:42We make it our business to know our children, to know them really, really well.
49:48Riley.
49:49Yes, sir.
49:53Riley used to be taught many of his subjects in separate SEND classes.
49:57What I want to see first of all is going to look at four key words that have come up in today's lesson.
50:03Now the school's built his confidence and social skills, he's doing more lessons with everyone else.
50:09Riley, you had a good definition of rebellion.
50:11So you've got a country and some people are against the country.
50:15So they choose to fight the country in a war and make their own country.
50:20You get fidget toys for when you're stressed and you're like struggling in class.
50:24And you also get a time out.
50:26Time out is for when you're struggling in a lesson and you need just two minutes out.
50:30Do you think that makes a big difference to you wanting to come to school?
50:33Yeah.
50:35The things that you have here, why do you think that's not the norm?
50:39I think it's hard for some head teachers to be brave.
50:43I think lots of schools now are getting more children with more complex backgrounds, whether that's SEND or other vulnerabilities.
50:51The more of these pupils that you take, the worse you do in attendance, attainment, suspensions, exclusions.
51:00That's really, really hard if you're a school leader and you're trying to protect your school.
51:04My view is very much that children with SEND, if you make them part of your community, they'll flourish, they'll be successful and you're setting them up for life after school.
51:16And that's so important.
51:18September and a new school term.
51:27Have you deodorised your pits?
51:28Yeah.
51:29Well done.
51:30Only a mum can say that to my son.
51:32I said the same thing.
51:33He's like, you've got deodorant.
51:35Today, Buddy's getting ready, but not for school.
51:44What am I doing?
51:46Where are you off to today?
51:48What are you getting ready for this morning?
51:50Tuition in the library once more, of course.
51:53Tuition in the library?
51:54Yep.
51:55His EHCP hasn't been finalised.
52:00In the meantime, the independent school's taken over teaching him in the library.
52:04But Tunde's now not sure the school will be able to deliver what she thinks Buddy needs.
52:11It turns out that he's not with other kids.
52:14It's still mainly just one-to-one tuition in the library, English, maths, science.
52:20And then he does a day of music where he goes to a different site.
52:23And there's only one other kid in the music group.
52:25Do you feel like you're going backwards?
52:27I think so, yeah.
52:28Backwards.
52:29I think definitely.
52:31And he's not getting the socialisation either.
52:34Backwards.
52:35Backwards.
52:37Southwark Council says it's open to reviewing the situation when parents are concerned about education placements.
52:45Right.
52:46Let's go.
52:47We were all prepared for September and, right, you're going to school now.
52:55And he's still not at school.
52:56He's still having one-to-one.
52:57And I think this, this preparing to be around other kids and then still just being one-to-one with adults has really knocked him back and made him not want to go to school.
53:09Hug?
53:10Hug?
53:11Hug?
53:12Oh, yeah.
53:13All right, yeah.
53:14Yeah, yeah, yeah, yeah.
53:15Oh, I really wanted a buddy hug.
53:17Yeah, all right, yeah.
53:18All right, all right.
53:19So, at the moment, I'm just, like, just trying to stay afloat, really.
53:24But it is getting increasingly harder to remain positive and to remain hopeful.
53:31Still isn't out of school.
53:33He still doesn't have that social network that I was hoping that he would develop.
53:37It just feels terrible.
53:38It feels like I'm letting him down.
53:40I want to check what lessons you've got.
53:41I've already checked that.
53:42And you need your PE kit this morning.
53:43Oh, I've got it.
53:44OK, Zoe, shall we do your hair?
53:45Hello.
53:46Good morning.
53:47Good morning, sweetheart.
53:48Good morning.
53:49In Scarborough, Karis can only watch as her brother and sister go to school.
54:07Have a great day, won't you?
54:10There you go.
54:11Let's see how.
54:15So, you're home educating her.
54:17It sounds like a lot on you two.
54:20Yeah, I mean, it's huge.
54:22We have really had to, over the last few months, rearrange our whole lives because we've got our daughter at home.
54:32Lee and Vicky will keep teaching her until the outcome of their tribunal next year.
54:43We've found Karis' happiest when she's outside, especially at some local stables.
54:48Come on in.
54:53They'd like the council to pay for an alternative education that isn't based in the classroom.
54:58We are looking for an education other than a school package, which will involve some maybe one-to-one tutoring, hopefully some therapeutic input, so animal therapy.
55:13It will have to be a bespoke package for Karis.
55:17How are my fingers like that?
55:19When you're around horses, what do you get?
55:21Mucky.
55:22Mucky.
55:23Mucky.
55:26How has going through this whole process changed you as people?
55:31I think it's probably made us more determined because you're so used to battling and advocating for your child.
55:38It is a battle.
55:40It shouldn't be.
55:42It shouldn't be this hard.
55:44It's a story I've heard again and again while making this film.
55:51Parents who feel like they're fighting for the right education for their child.
55:56But it's clear that for every parent fighting, there's a council counting the cost.
56:04Before I go back to my own family, I've got one last school morning.
56:09We are back at Etta's house.
56:11It's the first day back at school, so we're here to see how she gets on.
56:17You look great, Etta.
56:20Heather's waiting for Etta's EHCP to be finalised.
56:25I really hoped that we would have a final document and I'd know that there were going to be more things in place today
56:34that would make everything a lot easier for her.
56:37Having now gone through the EHCP process, how has that changed you as a person?
56:47It felt like I have been pushing really hard to get things in place that actually I now feel a bit broken by it all.
56:58Today, Heather has a win. Etta makes it into school before 9am.
57:05I mean, hats off to her.
57:08I'm really pleased she's gone in happy and I'm really pleased she's excited about her day and feeling good.
57:14Yay! Well done, Bobby!
57:19Yay! You did it!
57:21Yeah, brilliant start, right?
57:23Yeah, really, really positive. Such a relief.
57:26I can relax more. A positive start will set us up better for the next few weeks and the year, generally.
57:37It can be hard enough for parents at times, never mind having to fight for what they believe is the right education for their child.
57:44All eyes are now on the government to see if its reforms can relieve the pressure on so many families.
57:52DOC
58:07DRUM
58:15DRUM
58:16iffs
58:17You
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