Transcript - Episode 28 — SEND Parenting

Automated Transcript Episode 28

Empowering Neurodiverse Parents with Free Access to the SEND Unlocked directory

Guest: Polly Elworthy

Please excuse any errors as this transcript has been automatically generated

Dr Olivia KesselHost00:08

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, i'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, i've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, i will be bringing the experts to your ears to empower you on your parenting crusade. In this episode, we will be speaking with Pauley Ellworthy who, through her struggles with her wonderfully neurodiverse son, has been inspired to create Send Unlocked, a directory that can be used on a web browser or as an app as a resource for other parents to find support for their wonderfully neurodiverse children in their area. The services and things offered are then reviewed by other parents, and being listed in the directory or using the directory is absolutely free. There's also an opportunity to rate your local authority the good and the bad. This is a really valuable asset to have, and the more parents that utilize and interact with it and review, the more valuable it will become.

01:34

Welcome, pauley, to the Send Parenting podcast. It is absolutely fabulous to have you on the show today. You remind me of me and, i think, remind me also of a lot of other parents out there who've taken all of their anger, frustration, pulling out their hair with their own children, and decided to do something good for the community of other parents out there who also are going through the same challenges. And you've created Send Unlocked, this great directory to provide parents and empower them with the ability to access services to write reviews, and I'm going to ask you a lot more questions about that. But before we go into Send Unlocked, i want to hear a little bit about your story with your son and what inspired you to go down the route of creating Send Unlocked.

Polly ElworthyGuest02:16

Great. Well, thank you very much for having me. Yeah, my story Okay. When my son started school, all hell broke loose It's the only way I could describe it. Every day I had people coming out talking about behavioral issues and he was difficult, he was trouble, he was causing huge amounts of problems in the classroom, he was a distraction And obviously that was because I was a single mom, divorced, working mother All the usual reasoning behind why a child is struggling in school, and it made no real sense to me because he's a really happy sort of yes, he's a handful, i will agree with that. I don't hide from my children's difficulties.

03:07

But yes, he's a handful, but he's very bright, he's very interested, He desperately wants to know things. It's not like he still doesn't want to learn. He desperately wants to know everything and usually thinks he knows better than everybody else, which can be a bit of a problem. And so I started researching the behavioral traits that were coming through and I came across autism and I spoke to them and said what do you think? And they said no, no, no, it's just because you're a single mom, you need parents. Yes, you need to have a family.

Dr Olivia KesselHost03:38

You need to have a family.

Polly ElworthyGuest03:42

And so I started going down the route of diagnosis and recognised that it was going to take three to four years to do that. He was really struggling and he was coming home crying every day and it was a really difficult time And my aunt said to me well, she would pay for him to go privately, and it was something I couldn't do. So I was over the moon and he got a diagnosis and he was diagnosed as autistic with PDA HD, and then some years later he was diagnosed dyslexic as well. So he was really struggling in all ways.

04:16

He's got more letters after his name than most professors do, and so we then started down the process of trying to access his school, and through school it was very clear that he wasn't going to be able to co-mainstream, and so I started looking at getting him an EHCP and, rather amusingly, i was told by school they wouldn't do it for another year because they needed more evidence or something. So I said I was going to do it myself And they said, oh, we don't think you can do that. And I said well, actually you can. I've got all the parents paperwork right here And I wasn't asking permission, i was just letting you know what I'm doing, that's incredibly clever because I was like okay, you know like hook line and sinker, so well done.

05:03

I was working in the military charity sector at Heim, so I worked with public sex services. I worked supporting veterans into education and employment, and so I was used to working with public services. So before I'd even gone down this route, i had researched all of the process. I had looked into you know which teams delivered what at the local authority. I had got all of the paperwork. So before I'd even approached school and said I was going to do it, i had all of that. I'm not one to ever really hate what I'm told is read.

Dr Olivia KesselHost05:41

You know, and that's so good, because often we as parents like and you know, believe that what the school is telling you is that is right. You know what I mean. That it's I'm like white coat syndrome with the doctor. You know it's a similar feeling. You just like okay, and you have to kind of break that. But it sounds like that's your personality anyway.

Polly ElworthyGuest05:57

So my old son says it's because I'm a control freak And I know everything better than everyone else. But yes, it's just my approach things. Which is, oh, there's an issue here. So I've got to do the research, work out what I need to do to address the problem, and so I done all of that before I started down this route. And then, of course, you do all of the paperwork and you supply all of the evidence. And I always find the HCP process quite funny, because you're making an application to ask if you can go through the assessment process And for the application you have to use all of the same evidence that you have to for the assessment from, to get from the assessment anyway.

06:34

So it counterintuitive you know I'm quite a process driven person And as a process to me it just seems a little long winded and unnecessary. So so I did all of that. And then I got the usual call managing expectations, saying probably won't get this. And I said actually I provided all of the evidence And you know I'm expecting you to tell me that he's going towards assessment on Monday And if I don't have that, then you and I are going to have a serious issue.

07:07

My biggest fear and I think it's a lot of fear a lot of people is that it was going to end up going to tribunal because I'm a single mum, i couldn't afford lawyers, i couldn't afford you know masses of you know expensive specialists to fight my corner. I didn't have that. So it probably made me more pushy at that level where they did their managing expectations called than I normally would have been, because I'm you know, i'm a relatively nice, polite person And I probably wasn't terribly polite on that call Very nice, but you found your inner line I just wasn't prepared to allow it to go to the point of tribunal because I just didn't physically have the resources to fight it through that process.

Dr Olivia KesselHost07:54

It amazes me that it's hard to get provision for legal representation at tribunal if you don't have the money. It just seems a bit of a skew And if you look at the costs.

Polly ElworthyGuest08:04

I mean, i know people who paid 20, 30, 40, 50,000 to go through that process. Well, who has that? You know, it's just, it's ridiculous. And then he got approved for assessment And then we went through all of the HCP process, which was a sort of battle in itself. And even at the point that his EHCP was approved, you know, the choice of school was being fought And that took another five, six months to get them to approve the school. They wanted to send him to a school over an hour away when there's one 15 minutes down the road. That was perfect. You know, these things don't make any sense. And they were going to have to pay the travel for him, to have a taxi there every day. You know, it's insane, it's just. None of it makes any sense. So that was another fight.

08:51

So it was years, years and years and years of battling And at the end of that I thought, well, i have, this is my job. You know I was already doing that, addressing services and dealing with people as my job. You know what about the parents, who don't know how to research that emotion? And I sat back and I was like, what can I bring to the table? Really, you know, rex is now in in a fantastic school and he's happy and he's healthy and he's you know, his mental health is. I mean, the school felt that it took him about a year to recover from trauma of mainstream education. It was that, you know, it was that difficult And but he was. You know, he was moving forward and life at home had changed. There were no more meltdowns. In the same way, you know, everything was improving And I was sitting there thinking what can I really bring to the table?

09:41

I'm not a campaigner. I'm terrible on social media, i'm not someone who likes to be crowd, so standing around with a placard doesn't work for me. But I am very, as I said, i'm very, very process driven And I understand process and I understand animation and I understand data And I understand technology And I thought maybe I can use those skill sets. That was, you know, that was by sort of. That was what came out of it at the end. Maybe actually, families like mine who can't afford a massive tribunal process, or who, you know the day they called me and said he had a place at the school of his choosing. And I'm a very pragmatic person. I cry maybe twice a year. I'm not in. You know I'm not terribly emotional And I'm undiagnosed neurodivergent myself. I'm not very good at external emotional responses.

10:36

And I got the email and I left work and I was driving to go and pick him up from school And I suddenly realized I couldn't see the road And this is sort of you know, sort of three years of fighting And I suddenly realized I couldn't see the road and I pulled over and I was sobbing, i couldn't stop crying And it was just a release of the years of fighting. You know I've got everyone involved. I've got our local and he involved, who was wonderful. I got you know sort of specialists involved. I was. I was told by one educational psychologist there would be no support for him because he's too good looking, so no one would leave that there was anything wrong with him. You know invisible disability, no, anything about that. You know these things were a daily occurrence And I was. You know everyone was saying, oh God, you know you're fighting, you keep going, keep pushing. Every time they responded, every time they came back with a barrier, another barrier to support.

Dr Olivia KesselHost11:31

I email back again straight away And it takes off layers of your skin, though it takes off layers of your skin, you know that day that I you know, they confirmed it I physically couldn't drive.

Polly ElworthyGuest11:44

I just sat in the car sobbing And then I was like thank God it's a cold day because I can calm my face down before I go to pick him up because you know, they'll know, he'll know I've been crying And that's frightened him, because mommy doesn't cry very much Calling my face down, but the relief that he was going to be okay. And look, i'm not somebody who sits there bashing the people who are delivering this work, because nobody goes into doing this who doesn't want to make a difference to these lives. You know, these people are working with barriers. They are given, they're not creating barriers. So the barriers are there And people who are working delivering this sport and these processes are doing the best they can with what they got.

12:27

So I don't I don't sit there sort of being angry at the individual, who's who's doing the case, working, or who's who's trying to deliver support the best way they can. I see it very much as a process driven issue. It's the process is wrong, not people, and actually if you gave them an effective process it would be fine.

Dr Olivia KesselHost12:46

Yeah, i think it's the process, but then it's also making sure there's enough schools understanding that not everyone can be educated in mainstream. There's a shift in you know how we look at educating all children. That needs to happen as well from that perspective as well. Like you're very lucky, found a good school, i'm very lucky, but also it's not always the case.

Polly ElworthyGuest13:05

In a way comes down to process as well, because so much money is wasted on process, it's short for the provision. And if you solve the process problem, you can redistribute funds to the right place, which is provision and training for teachers. You know teachers aren't trained in set unless they choose to specialize. Why should they know how to teach children if they haven't been trained? If you could redistribute us from failing process to provision, then those wouldn't be an issue. So it's just be interesting to.

Dr Olivia KesselHost13:33

It would be interesting to look at the you know if you could find the financials of how much they spend on tribunals you know, what I mean And how much you know. Like mistakes like Oh well, let's transport this child for an hour when there's a school 15 minutes by you know to calculate what the cost is, and then look at what the cost would be. if you actually exciting, maybe that'll be our next project.

Polly ElworthyGuest13:56

I know I mean. the idea of having access to the books is just too exciting for me to read.

Dr Olivia KesselHost14:03

But also, you might never drop this.

Polly ElworthyGuest14:06

But also you know so you so much money wasted on things that aren't delivering for children and looking away from the send sector. the Sats cost this country millions. They don't add any value to education. If you could stop all of those, remove pressure from children and teachers to have actually deliver them and take all of that Sats money and put it into identification of need, dyslexia assessments, those kinds of things, you would solve massive problems straight away.

Dr Olivia KesselHost14:34

I absolutely, completely and utterly agree with you there And also when these problems are identified earlier or if you teach towards diversity benefits the whole classroom and then you actually don't create bigger financial problems when children like your son get traumatized and need to spend a year just getting to a place where they can learn again because they've been so traumatized. If you do it earlier on and everyone's taught to read like a dyslexic, you don't get these huge problems Exactly.

Polly ElworthyGuest15:00

Early identification of need and early intervention to address need reduces cost at every stage, not just in education, but in adult social care, in mental health services, in NHS treatments, in everything. Isn't it so true? It's a false economy to not do it.

Dr Olivia KesselHost15:20

Preventative care versus reactive care, and we're not doing it properly. In medicine we're trying, but in education it's even worse than in medicine.

Polly ElworthyGuest15:27

Yeah, there are so many children who are getting to the end of school, who can't read and can't add up, and how is a child supposed to get anything out of school against?

Dr Olivia KesselHost15:37

weighted money. And then you look in the prisons and the rate of literacy is so low. And there are actually some programs where they're doing toe by toe, which is like a phonic thing. That my daughter's done, i think, five or six times She's finally sounding out some words now but they're doing it with an adult population because those people never had access to that when they were a child.

Polly ElworthyGuest15:54

And also there's a prison reform trust report, which the NHS use for their liaison and diversion teams, which identifies that at any one time, between 20 and 30% of the prison population have a learning difficulty or disability. That means they don't even really understand the process that they're in, let alone be able to actually deal with it, and they're so vulnerable and it's just wrong. And if they had been picked up at five or six and given a proper support through education, they probably wouldn't be there in the first place. And if 30% of the prison population is massive, that's at any one time between 16 and 25,000 people.

Dr Olivia KesselHost16:33

But if you think about our education system is designed to fail. a third of it, the wastage, okay. So what's happening to that third of the population?

Polly ElworthyGuest16:39

Well, they're going to grow up and they're going to become adults, of course You know. So it's a.

Dr Olivia KesselHost16:46

Do you?

Polly ElworthyGuest16:46

have a Shauna Corr. Okay, he's a professor at Harvard and he studies happiness, which is a wonderful, wonderful thing. He's brilliant.

16:53

You must go and watch his TED Talk Anyone who hasn't been there will go and watch his TED Talk because it's one of the funniest things I've ever watched Brilliant.

17:00

But he asks this question. He says when people who are designing educational programs ask the question how does a child learn to read, they change it to how does the average child learn to read and then work to the average? And he says if you look at how all of the different ways children learn to read and deliver that so that every child can, instead of working to the average, you're working to the individual and the average automatically comes up. And it's a really simple concept. I absolutely love it because it's true, everyone in mainstream is working to the average, which is inside box, and the truth is very few children fit inside the box for everything. It's just not physically possible. So we've got to get rid of the box and start teaching to the individual, and you can't do that with things like SATs, where people are being formulaically in that sort of Ford mechanical way, being pushed through a process to achieve average.

Dr Olivia KesselHost17:56

Absolutely, and teaching to the individual and understanding the individual's different needs and not putting the blame on the parent, like you experienced yourself. To shift blame is important. It's a personalized activated care model Yeah, but also blame is shifting everywhere, so it's not just shifting at parents.

Polly ElworthyGuest18:14

Parents are then angry because they're being blamed and they're blaming the teachers. So the teachers are under attack, so they're on the defensive, which is why it's coming back. Local authorities blaming the schools, schools are blaming local authorities. Even inside departments, people are blaming each other. Oh well, that wasn't our department, that was the department in the next door office. And so, instead of looking at care for and support and education and everything from the perspective of the individual, everyone's just chucking blame around And it's this us versus them culture. But nobody knows who us is and nobody is, because everyone's blaming everybody And it's a mess. And you know we. Until we get away from blame and start looking at what we want to aim for and the goals that we've got to aim for, nothing is going to change. And it doesn't matter how many times people say well, if this department change how they behave, then everything will change. If this, if this organization change how they do something, then everything change is not going to unless the approach goes from group average to understanding the individual.

Dr Olivia KesselHost19:19

And I would argue that everything has to change, from parents to schools, to everything. You know there's, there's, there's, there's a big level of change and you see pockets of change within schools, within alternative provision, and you do see success as well, and hopefully, with I think there there's more publicity now about what's going on, there's more parents like yourself, like myself, like those listening, who are stepping forward and and and you know, mentioning things and asking for things to change. And I think you know a huge part of that is to be empowered with knowledge, which was one of the reasons I started this podcast and was one of the reasons you started send unlocked was to provide an empower parents on on this journey to challenge all this systemic, systemic failure we're talking about.

Polly ElworthyGuest20:01

And I I don't think you can start doing anything until you have the knowledge, until you have looked at everything and understood later. There's this. There's this thing I like to use with my children when they're looking at a problem where you know if you're, if you're someone who has grown up in a village with a view of Everest for your whole life, and someone comes up to you and shows you a picture of Everest from the other side, you won't even recognize it as the same mountain. And if you're someone who lives at the base of Everest, all you'll ever see is the wall. You don't know that there's a top to it. And if you start trying to make changes to your mountain without understanding what's on the other side, you're probably going to cause an avalanche. So so you know, and if there's a bit over here that's working, you don't want to do something over here that's going to break it. So My real approach is not just to say, right, this needs to change, but it's to pull together the information, to put it in a format where you can organize it and understand it, so that you can see where the good things are, where things are struggling, and then say, well, actually, this local authority over here seemed to be really delivering. What are they doing that's different? And how can they share that with this local authority over here who are really struggling to help them to up their game? Because then you're not saying all of them are a failure, all of them are terrible, and I think we have a real tendency, when things are bad, to say it's all bad and it's not all bad. There's amazing things happening across the country that are really fantastic programs and really amazing support and alternative education ideas and people who are doing things differently and it's working. So let's find it so that we can share it. What's the whole thinking behind everything that? I do? Yes, paraphrase Well, yes, but the information itself is great And for me, one of the biggest things is that the most important information I got when I was going through this process was not from sec professionals, it was not from caseworkers, it was not from teachers, it was from other parents.

22:13

They're the ones who hold the knowledge And if you go to, i saw a thing that a local authority had done and they had done a questionnaire on send services out to their local community and they had had a 27% sponsor And from that they identified that they were doing brilliantly. Well, 73% of people didn't even want to comment Well, i don't even think that they did. There was sort of I think 40% said things were okay, and so you're talking about 40% of that 27% who are cross, and what we're not doing is getting from parents their real life experience. You can ask a question that is normally shaped to give a specific answer that you can't understand what parents really think, feel about the service that they've received, and so a huge part of me or send unlocked was just about giving parents a space where, when you've, i've just realized I've got a big thing sticking out of the back of my head.

23:22

When you had an experience with an organization whether it's a charity or a local authority or a local peer to peer support group, and whether it's good or bad, you can't tell anyone. There's nobody who will listen. If you've had a bad experience with a send consultant who isn't regulated by anyone, there's nobody you can go to to complain about it. You decided to buy the service. If they didn't deliver, that's your problem, and you have nowhere to go to say actually, these people saved my life, or these people over here ruined everything, and now I'm not even able to walk out the door. So the information itself is important, but it's more about accessing a mission from parents, so we opened it up.

Dr Olivia KesselHost24:05

We're trained in that regard. in normal life, like I, don't buy anything on Amazon without checking the reviews.

24:10

And if they're bad reviews, I don't buy it Same thing with booking online or anything We are. I'm completely welded to looking to hear what other people think And that really directs my buying right And to have a place where you can have people who are, like you, reviewing the services and the things that are available for you. To get that honest appraisal of it helps to, it saves time right And it saves you going through the heartache, potentially of the person before you or gives you the success of someone that you don't need to figure it out yourself.

Polly ElworthyGuest24:43

So the send unlocked is not me going. this is what you need to know, because I don't think I am expert enough to do that. But I also don't think that I know what every different family needs, and there is no organization on the planet who can deliver everything that a family needs. It's not physically possible. If that was possible, it would already exist And everyone would go to the same organization and they would deliver everything and it would all be shiny. But it's not possible. Every organization delivers something different that is within their charitable object or within their role within local authority or whatever it is, and you have to know where to go to access it And you often are making a totally uninformed decision about whether or not that's the right service for you, because finding information about that is nigh on impossible unless you're able to find other parents who do that. So the first stage of send unlocked for me was we gave organizations the opportunity to register themselves, and that's been great and that's growing every day and organizations are coming in and they're registering themselves and that's wonderful. They have an account. So we're not putting the information on there. They are putting the information on there and they can log in and go and update it or not. That's up to them. We have a process where we send out a report to them occasionally, like once a year or something, just saying right, you haven't got any filters listed or you haven't got your logo on there or you haven't. you've got a three word description of what you do. You might want to expand upon that. Before they come in, we check that they're relevant. we check that they offer something to anyone within either special educational needs or disability. It doesn't matter what age group they deliver to. It doesn't matter what area they're delivering in. It could be education, it could be employment, it could be activities, it could be peer to peer support, it could even be campaigning. If the campaigners want to put themselves on there, that's fine And so they can put themselves on there. But also families if they want to review something that isn't on there, they can refer it into us and we will put it on there for them and tell them it's up live and then they go in and review. So if they've had an experience with an organisation where they want to pick them up or they want to cut them down to size, they can do that and it gives them a voice.