EP 105: Special Needs Education with Kelly Jarvis and Chrissa Wadlow

Speaker Names

Dr Olivia KesselHost

00:06

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. Before we start with the episode, I'd like to invite you to become a member of our Send Parenting what's Up? Community. It's a private space designed just for us. Parenting neurodiverse children can come with its own set of challenges, but it's also full of incredible moments of joy and growth. So I wanted to create a space where we can come together as neurodiverse parents to connect, share experiences and offer support to one another with no judgment and a lived in understanding. If you're a neuro navigator like me and have felt alone on this journey, then this is the community for you. Join us as we navigate this unique journey together. Join us as we navigate this unique journey together. The link can be found in the show notes or you can direct message me on 078-569-15105, and I can personally add you in Looking forward to hearing from you in the community.

01:40

For many of us, it is return to school week, the start of January and an end to the Christmas holidays. In this episode, we will be speaking with Sunshine Support, who did a live event with us last December. They are an amazing resource for any parent navigating the education system. We will be joined by their founder, chris Awadlo, and Kelly Jarvis, head of advocacy. If you're struggling to find the right support for your child in education so that they can thrive and flourish, this is the episode for you. Kelly and Krissa, it is a pleasure to have you with me to celebrate the 100th episode of the Send Parenting podcast.

02:21

We're having an episode every day this week, a live event bringing back some of our popular guests to talk about what's new, how they are still inspiring and serving neurodiverse parents and Krista, your episodes were so popular episodes 62 and 63. You shared with us really poignantly your journey with your daughter and how you struggled to get her the right support and the right education and that really inspired you to form and found Sunshine Support and how you now are helping other parents navigate that journey. But before I get to you, we have someone who we haven't heard from yet, kelly Jarvis, who's joining us today and also from Sunshine Support. So I thought we'd kick it off with Kelly just telling us a little bit about your journey and how you ended up at Sunshine Support. So I thought we'd kick it off with Kelly just telling us a little bit about your journey and how you ended up at Sunshine Support.

Kelly JarvisGuest

03:08

Oh, wow. Well, it is a journey. So I have been an educator since 2005,. Started out in mainstream school but my greatest love has always been special educational needs, for lots and lots of different reasons. I could talk about it for ages, as Chris well knows.

03:29

But my employment journey brought me to a very highly specialist independent setting which also had a residential care home arm, and I was the head of the school part. So I designed all the curriculum for our incredible young people, all of whom who had been completely failed by the education system, had spent long, long periods of time out of school, had been labelled, you know, unteachable by some of their previous settings. It was utterly heartbreaking and I loved my role because I got to be completely innovative with the curriculum, sort of revive a love of education in young people who have been completely failed by the system, but also families too. So where families had ended up in our setting they had had the most terrible journeys, again failed by the system, disillusioned with what school is. And that was how I met Chrissa and sort of you know about her background and her journey from when she was on. Before we met through that sort of means um, can I interrupt you there?

Dr Olivia KesselHost

04:46

Kelly was, was it actually? Because some of the listeners might not have listened to that episode. So, chris, uh, maybe give us a little like a summarized version of of your journey with your daughter. And then did you guys meet together on that journey? Yes, yes.

Chrissa WadlowGuest

04:59

So essentially, um, a very sort of shortened recap, would be that I fought for seven years to get my daughter's needs understood. It resulted in three tribunals, a high court case. I won all of them, but every single one presented new challenges. And because we were, it was a very expensive battle, a very stressful, traumatizing battle. It was a very expensive battle, a very stressful, traumatizing battle. We looked at about 30 or 40 schools all over the country and narrowed it down to the very best that we could find, because we thought, if we're going to invest this much, let's just go for the best one that we can find, hoping we would get it but not believing we would get it.

05:49

And I never forget that phone call from the solicitor who said we've won, the High Court case has been heard and we've won and your daughter is going there. You need to get her there now. And that school was Kelly School, so she was the head of that school, which is how we met, and so she helped part of my family recover from the trauma and sort of reconnect. And it wasn't just about my daughter, but the support that she gave me as well. It was like nothing we'd ever received before. Hence our well, I'll hand back to Kelly to sort of continue with her story.

Kelly JarvisGuest

06:18

Yeah, I think it was right. From day one there was a meeting of minds, wasn't there, krista? I think we both felt like the education system needed massive radicalisation, it needed innovative thinking, it needed different approaches, and I think what you needed was a lot of healing as a family. You yourself, you know you needed your faith restoring in education professionals as well, and I found that in my role as a head. It wasn't just about you know what goes on in the classroom. It's so much more than that. It's about fostering and nurturing really high quality relationships with parents, send parents who have had to battle like no other parent has had to battle, and I think it's that difference, that level of elevation, which makes people in my role we have a responsibility that it's not just about the child sitting in front of the desk or whatever. It's about the whole family, the whole team around that young person.

07:18

So I worked really hard with Krista and her family through their journey through our school and just life, as it does take some winding pathways and I find myself having a beautiful baby in the middle of COVID and realised pretty quickly that my skill set had changed and I was thinking reflectively about how can I continue to do what I do to help families get in the right provision in this new world that I'm living in as a sort of new parent.

07:52

So I called up Chrissa one day and said I hear you're doing this Sunshine support thing.

07:58

I think you know I might be able to help and the rest is history.

08:02

And now I'm so proud to be the head of advocacy and consultancy at Sunshine. So I have a team of brilliantly skilled advocates from all sorts of backgrounds who we work together to support families all over England and Wales with any part of the send journey, right from completely new to send to really seasoned send parents who've been through it all and seen it all appeals, tribunals, uh, ehc, plan applications, you name it. We can support with it. And I am so privileged because in the how many years have I been there with sunshine? Probably about three, four, three, three and a half. In that time I can say I have directly impacted hundreds of families um to get the right provision and not only that, but to sort of change their understanding of and perspective about professionals that actually there are such amazing professionals out there that we can scoop you up and look after you, and I'm so grateful really to Chrissa and to Sunshine Support for giving me that opportunity so I can carry on doing what I love in a sort of different way.

Chrissa WadlowGuest

09:14

I feel a bit emotional after that.

Dr Olivia KesselHost

09:17

I know it's really lovely because you're the kind of you know your experience, Kelly, from being in the school system and then in the specialist situation and then, you know, being there for parents. It gives you a unique kind of lens to help navigate people through it and understanding that trauma and understanding that healing that needs to occur alongside progressing your child's case to get what they need. I think that makes it you know you sit in a unique skill set.

Kelly JarvisGuest

09:51

Yeah, you definitely have to have almost a dichotomy going on. You've got to have an incredibly empathetic, nurturing, understanding, inclusive, neuro affirming sort of personality, but then you also have to be relentless. So you have to have a relentless drive for quality, for the highest quality communication. Um, you have to be so constant attention to detail because you have to pick up on so many nuances, so much you know, going through reams and reams of paperwork, often it's just tiny snippets that make the biggest difference to parents cases. So you've got to be you know that that really sort of relentless sort of personality. But then you've got to have that I can communicate like a human being side as well. Um, and it is challenging, but, gosh, is it professionally stimulating and what you get out of it, what you see when, when you're working with a family, and it is transformative to their whole lives. You just think, gosh, is there any better job than this? You know my brain's alive and I'm having an impact on people.

Dr Olivia KesselHost

10:56

It's just wonderful you know and it's amazing because I get you know part of a community as well for SEND Parents and part of the podcast and all the listeners that I get to hear their stories with, and a lot of them, as I did myself, feel so alone and don't know where to go. And since Chris has been on the show, I'm like, hey, I have somewhere to you where you can go, and actually you also recommend Ipsy as well while you were on the show, chris, so we've had them on the podcast as well but that there are these resources available for people. It would be really helpful, I think, for our listeners to understand what kind of things in the last year, or what are things that parents reach out to, so that those that are listening can maybe resonate that, ah, these are the people I could go to. We've spoken about tribunals. That's a big one in EHCPs, but I think there's much more. Do you guys want to unpick that?

Chrissa WadlowGuest

11:39

a bit for me. Well, when we're looking at our inquiries, there is no particular trend, because parents come to us at every stage. So it could be as early as I've spotted there's something different about my child and I don't know what it is. So we're right at the very, very start. And that could be any age, by the way, because sometimes parents can spot it in early years. Sometimes they don't spot it until the children have left school and they're no longer children, you know. But they're noticing oh hang on a minute their mental health. It's usually mental health that is the crisis in all of this, but quite often they pick it up before that point. So it can be as early as that, but it can also be any part of the stage from there on. So it could be I'm on a waiting list for an assessment and I don't know what to do. Can I get help even though I don't have a diagnosis? The answer is absolutely yes. So you know.

12:36

We then advise on the law, legal rights, educational rights. But what's great about the team, like Kelly said, is within her team she has a team of educators and a team of legal bots. She has a team of educators and a team of legal bots and together, as they work together, they all have the legal training and they've all worked in schools in some variety as well. I mean, one of our members of staff is a trained teacher and a trained solicitor, so you can imagine the amount of expertise in the team and we've worked really hard to get this balance right and it's at a really, really lovely level now. But it just means that we can.

13:09

You know, if you've got an EHCP underway and it's taking some time, which it often does and you know you've got to allow the local authorities to do their job. However, the child still needs to exist and survive and thrive in school. So our educators then would go into the schools and say, okay, with a zero budget, here's what you can do to help this child. And there is so much. And you know, I'm experiencing this for myself at the moment with one of my daughters who has a beautifully written EHCP, as you would expect given my job, and Kelly is my advocate but it's still really tricky to manage that provision in a mainstream school. But her teacher at the moment is using some beautiful creativity in teaching to be able to get the best out of her and she is absolutely thriving For this term. We don't never know how it's going to be in future.

14:01

There is so much you can do on a zero budget and our team are really really well versed in saying right, we know there's no money, let's get down to business. What can we do? What's the reality of this? So yeah, so anywhere from, I guess, the sort of, I've noticed something a bit different. What do I do? Who do I go to? What are my rights? What's DLA? What is PIP? If they're a bit older? What's in the HCP? Or if you're in Wales?

Dr Olivia KesselHost

14:27

what's an IDP? You might have to explain those, krista, because people are going to be going. What do I do?

Chrissa WadlowGuest

14:31

I'm so what All these letters? So DLA and PIP is a state benefit. I guess it's something you can actually apply for in terms of funding for your family and it's very much something that you know. It's quite a skill to write a very good application for DLA or PIP. So we do that for parents. Sometimes that needs to go to tribunal or mandatory reconsideration, where you basically say I don't agree with the outcome of what you've given me, and so we assist with that. So that is sort of finance for the family, I guess.

15:09

And then with EHCPs. The EHCP is the Education, health and Care Plan, which is a legal document with legally binding provision within it. However, a lot of parents are led to believe that this is a bit of a golden ticket. But it's not a golden ticket if it's no good. So you have to make sure and pay respect to the fact it's a legal document. And one of the things that I always say to parents is when you're buying a house, you would never expect yourself to be the conveyancing solicitor. You don't have that skillset. But you're signing this legal document and you say to the solicitor I need you to act on my behalf to check that this is okay, because I'm entering into a really big 20-year-old or 20 years long contract or whatever, or lifelong contract, and the EHCP is the same because actually this is your child. This is more than bricks and mortar. This is your child's life. So it's really, really important you get that experienced, expert set of eyes on the plan to make sure it's fit for purpose. So the EHCP is the English system in terms of the legally binding contract.

16:16

In Wales they do things very differently. We used to all be on the same system, but it's now completely different to all be on the same system. But it's now completely different. They had their ALN reform a few years ago. We call it in England SEN special educational needs. Sometimes you put a D on the end disabilities. In Wales they've changed that terminology and it's now ALN additional learning needs and they don't have an EHCP there. They have the IDP, which is the Individual Development Plan I never remember what the acronym stands for which is the Legally Binding Contract, which essentially should do what an EHCP does. But it's a very complex, complicated, convoluted system where it's not straightforward for parents at all Not that I'm necessarily saying it's like I was justed system where it's not straightforward for parents at all.

Dr Olivia KesselHost

17:06

Um, not that I'm necessarily saying I was just gonna say it's worse than the ehcb process here. It's gotta be pretty bad yeah, really bad.

Kelly JarvisGuest

17:14

And, kelly you, you deal with a mixture of those cases and you've got specialists within your team that just deal with the welsh stuff as well that's correct, um, and thank goodness actually, because we've just launched in Wales a very specialist Welsh division which has started with just very informal and safe space sort of drop in sessions. We call them cuppa and chat sessions and we sort of started those off thinking, well, we'll just get a sense of how things are and, you know, get a lie of the land. Chris has been there in person and she comes home after each one like she's been sort of on a marathon because the extent of the you know just mess that people are going through because there's a lack of clarity, there's lack of resourcing clarity, there's lack of resourcing. Um, there's the. It mirrors england in that every local authority appears to do things very differently and interpret the law very differently. So that's adding to the confusion and parents are coming to our sort of cup and chat sessions and recounting the most awful um tales of things they've been told by professionals and just expected to accept or believe that just are simply not true or legal.

18:31

So it's become very apparent very quickly that help is needed in Wales big time and I'm so glad that we have now a distinct support network starting out in Wales, just to spread that word, to say, as you were saying at the beginning, you are not alone. This is not a you problem. It is not anything that you should be ashamed of or embarrassed about. If you don't get this system, this is not a you problem, and actually there are people who do get it, who can give you all sorts of different degrees of help. You know, one thing that we're really keen on in our advocacy strand of help at Sunshine is to be led by how much the parent wants us to lead so we can do everything.

19:18

You know, somebody can just go off. I'm really fed up here. Just, please, just take it all over. And that that's fine. But we also love the whole teach a person to fish analogy and we love it when we can upskill parents and give them back their you know, their, their vibe, their you know drive, that that has been sucked away, and for them, for us to be able to empower them and say, oh hey, actually the stuff you've been asking for, you are right. You have been told things that are not correct. You are right to push back the you know the, the joy that can bring, you know, when you're that parent and you've been struggling. And Wales has just been like that, hasn't it, chrissa?

Chrissa WadlowGuest

19:59

yeah, yeah, and yeah, I guess recapping on the sort of stages at which people come to us. You've got people at the beginning applying for their IDPs, perhaps not even knowing that they can apply for their IDP or EHCP. So we're empowering them in that end. But then you could have parents who have applied and they're going through the process and they're being let down and it's a constant that everybody comes to us and says my local authority is the worst and we're like actually they're all pretty bad. You know, they're all pretty bad and it's not just about timescales, it's about attitude. There are some local authorities that we work really, really well with and we get some results from and they are open and transparent and honest and they want the best for the child, even if they don't have the budget, and they're very open about that and we much prefer that transparency. But later on in the process then you've got parents who want to.

20:51

Maybe the local authority has missed their legal deadlines. This is a big one. So, through the EHCP process and we've got tons of resources on this on our website. So for anybody who wants to understand the different processes that go on for both Wales and England, we have the free resources on our website that you can download like a flow chart. But if they miss any of their legal deadlines, we can hold them accountable through the judicial review process. So we can act. We can basically write to them a pre-action letter, a legal letter, and we call them a PAP letter, pre-action protocol letter, and we can do that for parents and it tends to have the desired effect where we say to the local authority you're acting unlawfully, you need to sort this out, otherwise we're coming for you. And more often than not they go OK, ok, we'll put you at the top of the list, but it's sad that we have to do that. But so parents come to us at that stage.

21:47

And then of course, there's the appeal, because a lot of parents think they have to accept whatever the local authority gives to them. They don't, they have a right of appeal. So they come to us at that stage. So that's a sort of application process. But then anything after that point they could have an IDP or an EHCP in place that they need to, that they have to lawfully review it annually. We sit in on those and we make sure that the right thing is being done and if there needs to be a rewrite of the plan, then we do all of that. We make sure that assessments are up to date so that children are understood and we know where they're at.

22:23

And beyond that, you know, sometimes after annual reviews we need to look at new placements. We need to look at, like school searches. We do a lot of that for parents and making sure that the provision is fit for purpose. But also sometimes they go to appeal as well. So we have to. You know we assist with that as well. There's also disability discrimination, like I said, applications for other things.

22:48

Sometimes parents come to us and say I can't seem to get transport sorted out. Can you help that? You know, can you help me with that? So there's a huge variety and everybody has a very, very awful story to tell and we never fail to be surprised by the antics of local authorities. And you know there's a lot of people who are. You know there's a lot of people who are.

23:08

But one of the things I think that we have come to sort of understand this year in terms of what has happened for us this year. I'm going to go off on a tangent now, olivia, because do you remember? No, I know me and my ADHD, hey, but it's a controlled one. I trust, trust me. The Alan Bates versus the post office scandal you know the whole documentary. The Alan Bates versus the post office scandal. You know the whole documentary and in that he says we are the little people and we're fighting a system that's funded to silence us. And we all in the Send community went oh my goodness, that's us. We are the little people.

23:47

And one of the things that's become very, very apparent to me in the media, particularly over the course of the last year, is just how much the system has been designed to fracture all of our relationships. So we're all fighting each other and what we're not doing is telling the people at the top we need more money, we cannot continue to operate in the way that we are and the law is the law. Nobody can act lawfully once you're giving them no money. So at the moment, schools fighting parents, parents fighting schools, then they're fighting the local authority. You've got to send caseworkers who are. They've got 3,000 open cases or something. Way too much work on their hands. Everybody's fighting each other. And one of the things and, kelly, I do want you to talk about this, because I think a lot of people think that advocates are brought in to fight with everyone.

Kelly JarvisGuest

24:49

And actually for our advocates that's the opposite, because we don a bit of a reputation for being a little unnecessarily belligerent and a bit finger waggy, and that's not to say all advocates are at all. We just pride ourselves on not being that because in our experience it doesn't get anybody anywhere, because ultimately, at the end of the day, everybody is a human being and we are there to make sure that, as chris has said, little people, the, the, the people who matter the most, who are the most important. They are the vips, the child and their family. Their voices are heard above all, and that collectively, we apply what the law says in the right way. And when we identify the shortcomings, it is important to identify also that the local authority caseworker who, as Chris has said, has 3,000 open cases and is drowning they are not the person to direct your vitriol at. We need to be, as I say, relentless and we need to have knowledge and skill on our side, which we do.

25:54

But those individual caseworkers are not to blame for the failings that are countrywide. You just have to look at how different local authorities operate. Some really are amazing, others less so. But that is just symptomatic of the bigger problem, and that is, that every resource is overstretched and underfunded. There is no system that is applicable to everybody and everything. You'd think the law would be, but it's not. Transport, for example Chris touched on transport before the number of local authorities who have unlawful transport policies is beyond anything you could comprehend. And that's just one pocket of the whole issue. So until there has been reform on a grand scale at top level down, we are not going to get anywhere.

26:49

So having a fight with your case officer who is new to the role and doesn't really 100% necessarily know what they're doing yet, that's not going to help anyone and instead we pride ourselves on trying to educate and upskill and to be an extra brain in the team around the child.

27:06

We're not there to cast blame, we're there to go. Hey, let's acknowledge that that hasn't worked in the way that we all hoped it would work. Let's think about the best way now going forward to make it work better. And this is the skill set that I can bring local authority to make your decision making a little easier. I can make it easier for your panel to understand why they have to accept this report from a private occupational therapist rather than sending the family to appeal and that doesn't mean to say you know that we never, we never come up against difficult conversations, because we do. But I think Chris has made a really important point about collaboration, because that's what we're all about, and I think it gives parents a sense of confidence that we can go in and we can say, hey, look, we don't need to get all mean and shouty because, hey, we've got the knowledge, we've got the skillset and actually we're just here to get the best.

Dr Olivia KesselHost

28:01

And, as you said, you know your VIP is that child, and so it's really finding the solution in the here and now. You know there's this huge problem that you're both talking about, which is a lack of funding and a lack of reform, and that is something I'd love to also pick your brains as to how we can solve, especially with the new government and what's going on, and cost savings everywhere when you see that going. But what I love about Sunshine Support is that's up here and that doesn't matter to the parent who's got the kid right now who needs support, to the parent who's got the kid right now who needs support. And I think what's lovely about your organization is, even if they haven't got the HCP or they are in the process, you offer practical support that they can actually have that support in the classroom right now to help their child, because that's what's going to impact that child's trajectory and I think so, you know, does Sunshine Support also look at that bigger picture, cause I see you guys are really good in the here and now and that you know how do we for that bigger problem?

28:58

Where do you see? How do we? There's so many questions popping up in my head, you know, because budgets are tied everywhere. You know we're we're not giving, you know, fuel allowances to the elderly. It just seems like you know who cares and everyone's thinking, oh God, more people are getting diagnosed with neurodiversity. It's, you know, everyone's neurodiverse. Now, this is what I'm hearing on public media and it's you know. So where do we see this funding coming from and where do we see this change or reform? And I know that you guys probably have your finger on the pulse to it. So, yeah, I'd love to hear where you see us going well, or it changing. What's?

Chrissa WadlowGuest

29:33

interesting is when a parent, a parent, appeals an ehcp or idp, the government or local authorities always have money to fight them. They always have money to instruct a barrister you're right, they always seem to have bills paid and always have it.

29:59

And actually last year they said there was a 99.9 million pound overspend on send. However, there was a 99.9 million pound spend onunals. So then you're like, hang on a minute, is this money truly going to the children or are you overspending it? Fighting the parents and almost 100% of parents win their case. Now what I would like to see is the tribunal service having bigger powers to hold the local authorities to account, because with a lot of the cases that we see pushed to tribunal, the local authorities are not prepared. They haven't read the case and if they have, they concede at last minute. So they've just wasted all these resources and instructing a barrister themselves. So they haven't read the cases, they've not got the evidence together, they don't have a solid case because there's too many of them. You know we've got thousands and thousands of tribunals going through the system. So actually, if the tribunal service had a greater power to say hang on a minute, this case has been brought to us and you don't even have an opposing case to bring to us. You have not worked on this. It almost needs to be thrown out, because actually, when they instruct those barristers, not only is it costly but it goes against why the SEND reform happened to start with.

31:23

It started to make this a parent-friendly system, and when a parent is going into a tribunal unrepresented because they've been fooled into thinking it's a parent-friendly process and it should be, but it isn't, and they are sat down in this mini courtroom. It's not meant to feel like a courtroom and years ago they used to do them at hotels. Now you're put into family courts and sometimes criminal courts. I know one of mine was in the Nottingham Criminal Court, so it's a very different vibe when you're in those little courtrooms and you're sat there with a judge and then a lay panel, and then on the other side you've got their barrister, you've got their local authority caseworker or boss, then you've got all of their witnesses and you're thinking I don't know how to run a legal case as a parent. I thought I was just a parent.

32:15

I was told that this is parent-friendly. When you work out the salaries of all those people on that panel, how much is that costing the government? So actually, let's take the emphasis off the kids for a moment, because what I think is they go for the most vulnerable Whenever there's a funding crisis. Who can we harm the most vulnerable because they can't fight back. And that makes me really, really sick to my core and I was really hoping for a change this year. I really was. But some of the terminology, some of the conversations that are happening are absolutely disgraceful. But actually let's shift that focus.

32:47

Let's not look at the send spending directly on the children. Let's have a look at those legal cases. Where is that money coming from? It's quite often they'll say to us, but that doesn't come out of our send budget. But where is it coming from then? Because actually put it into your send budget then, because you're using it on send cases. So take it out of your legal budget and put it into your send budget. Stop strictly ring fencing stuff. Move some money, money around, for goodness sake. So I don't know whether you agree, kelly?

Kelly JarvisGuest

33:14

Yeah, I mean. I'll give you an example. I did a tribunal recently where the amount of money in contention was just under £10,000 for a year's worth of occupational therapy and we had managed to get the local authority to concede to agree on all the rest of this issue apart from this remaining nine thousand and something pounds. And I did a little exercise as part of my preparation for this tribunal in exactly what Chris has said. So I was thinking right, you've got a barrister that's arguing this case about this occupational therapy and we've had approximately you know x number of emails. We've had a meeting that lasted two hours. We've gone through the working document which is the education healthcare plan in a word form that you can annotate and you try and come to a sort of agreement via that process. We've been sending in contention had been spent on the administration of the appeal hearing and that just makes your blood run cold, because that's one single tribunal and if you think about how many there are, like I have, you know, since working for Sunshine, I've done upwards of 50. I've not, I've only made it to hearing on a few occasions because we've had a lot of concessions, funnily enough. But if I think about just my own caseload, and I'm one person. You apply that to that and then that's where you're getting in those millions of pounds figures and it's just.

34:51

It's just really worrying because that's the headline that you don't see. You see all the headline at the moment about this gross overspend that every local authority is going bankrupt. They spent too much money. Because how dare so many families demand an EHC plan and how many you know? How dare so many families go private and get a diagnosis? Because everyone's got them nowadays? The fact of the matter is is that we live in a society now where, thankfully, we are more inclusive and we are becoming ever more educated about neurodivergence and neurodiversity within groups, and people are starting to sort of realise, oh, actually this answers quite a lot of questions. And people are starting to sort of realise, oh, actually this answers quite a lot of questions. Oh, but I really can't wait five years for a waiting list, so I am going to try and find these answers myself and then, when they are finally vindicated for, oh, now I understand. The first thing that happens is that they're vilified for doing so, because how dare they go and get a private report? Because all they want is an EHC plan and everything paid for, and this is why we've got a crisis, because everyone's paying too much money. Imagine that going through that that is a daily thing for our family, isn't it, chrissa?

36:15

About the government, like what you're saying, oliver, about um, about the government and the potential and capacity for positive change, and chris had touched on it when she said she was really excited and hopeful about this government and and straight away there have been some quite worrying flags. Um, I always try and avoid talking too much about politics because I know I work with families across a huge spectrum of backgrounds and things and I never want to offend anybody. But I think I speak for most in the SEND community where when I say I'm quite confused. I'm confused by some of the messages in comparison with what was promised. In comparison with what was promised, I'm confused by some of the individual MPs' own use of terminology and quite outdated and ableist language.

37:05

I don't think that has a place in the government, that we want to be forward-focused about SEND, and I think what I try and do, I'm applying the same thing that I do in my professional life I'm just quietly, watchfully waiting. I'm watchfully waiting to reserve judgment, to think you know what reform is going to come and when. Um, yeah, but I know, chris is desperate to get into the House of Commons and give someone the peace of your mind, aren't you, chris?

Chrissa WadlowGuest

37:31

so we talk about it a lot well, you know, I just think that they're so short-sighted. It's always about this fiscal, next three years, next four years, and, and what frustrates me is and you know, let's not forget how we met, kelly and I and the fact that she worked for an independent flagship school, you know. That brings me on to my next point, because I'm going to go against that for a second. I think we're spending too much with independent schools. So when you look at where I live in particular, it's a bit of an autism hotspot because we're an engineering capital of Europe, so we've got lots of engineers around here. It stands to reason there's a lot of neurodivergence within our community. That's absolutely great. I actually really love being part of this community.

38:20

However, there is no investment locally in a school specifically for autism or a school specifically for ADHD. If we want that, we have to go outside of the school system, of the council-based maintained school system, and we have to go to an independent school. Now, when you look at the difference in fees, you can sometimes be talking hundreds and hundreds of thousands of pounds a year. So actually, for every child educated at a very lovely independent school that's in these beautiful grounds with you know, it looks like Hogwarts. It's fantastic and that's great. But actually for every one child educated there, we could have educated five or six within the state system, if not more, and absolutely. And what we're seeing is a lot of children being palmed off with the sloppy seconds. So you know they'll say, oh, we've got an autism school, that's within the council sector, sort of thing. You know the council run this school and you go in and you say, okay, what makes it specialist? And they just say small class sizes. And you know, okay, where's the OT, where's the occupational therapy, where's the speech and language therapy? Oh, we don't have any of that. And that's what makes these independent schools very, very different, because those provisions are on tap for the children and so they should be. It should be when they're ready to access them. That's when they should be available. But I just feel, particularly in Wales, I've never seen anything like it, where you've got children aged 11 who have gone through having enhanced resources, special resources, attached to mainstream schools, because that's as much as you're going to get down there At age 11, they fall off the edge of a cliff.

39:55

And I was speaking to a father a few weeks ago and I said so, your son's gone to a specialist nursery and he said, oh, he had a great time there. They really looked after him. And now he's gone into an enhanced resource hub and I said, great, how is he doing? Fantastic. He said then he has to move another six miles away for his secondary, but a key stage two. And he said but that'll be fine because all the kids will move up together.

40:20

So there's no one school looking after these children. And then they said, at age 11, then where will he go? Will he be okay to go to mainstream? He said no, and I said so what are the options? And he said it's that, or a special school. But the special school is full of children who have Down syndrome or cerebral palsy.

40:37

So my child, who is autistic, with some speech and language difficulties and sensory problems, he fits in between these two provisions. So I said so what are you going to do? And he said I've already planned to give up work because he won't be able to go to school. There is no school, and it absolutely baffles me. Planned to give up work because he won't be able to go to school. There is no school, and you know it absolutely baffles me. Like Kelly said, we know so much more now about neurodivergence. Doctors are making huge strides forward in terms of research and the provision of assessments. We don't have enough of them, we know that, but we're making these huge strides forward. The education system is 20, 30, 40 years behind, and that is completely offensive and I think it's robbing children of a childhood and it's, it's, it's, it's just beyond.

Dr Olivia KesselHost

41:24

It's also interesting, krista, within that, as well as you know, they might have like specialist units within the mainstream school because of this belief that they all need to be educated together and that that actually gives equality and integration. But these kids get taken out. My daughter was offered a place in a situation like this. So for English and math, they get taken out and they get a small group led by a non-qualified teaching assistant, who's probably a mother or someone you know, at minimum wage, that has no CEN experience whatsoever. And I said well, what happens when they go back into history and French and all the other things? You know, she's dyslexic, she can't read, she has ADHD. Oh no, they'll just sit with the other 35 kids in class. So for all of that time they'll just sit. Oh yeah, that's going to really work in terms of behavioral issues and none of us would want to just sit there. Oh no, but they have those and I was like you are. This is not a solution that is is is working for anybody. We need to create. You know kids need. Kids with neurodiversities cannot sometimes function in a large school, even if you take them out for it, it just it doesn't make logical sense. So I agree with you we need to create more, have access to more schools that provide what independent specialist schools are providing for all kids.

42:38

You know I, my daughter, has to travel an hour every day, so she leaves at 7.15. She gets back at 5.15. It's a long day. She doesn't have any kids really close by to her other than the one that shares a taxi with her. It's you know what I mean. You're missing out on a lot of life. You know, I'd much rather her go to a local school near me. But you know I can see why. Can't they have two schools sitting next to each other? They play together, they do theater together, they do different things together, but their core education is outside of that and some kids can't mix with a whole bunch of children. So I, you know, I just it's such a big issue because we really need to almost topple, and I would even argue that for neurotypical kids it's not working either.

Kelly JarvisGuest

43:21

But that's another topic altogether well, that's exactly it, I think, where chris was saying that the education system's so behind, it's behind in in every single way. So often schools will tell us. So I'll come in as an advocate to support a parent and I'll say you know, you need to understand that this child is struggling to attend school, not because of anything necessarily that you're doing or not doing. It's a fundamental incompatibility with this environment and the school. Are like well, she's got to go to school, because if she doesn't go to school now, then she won't be able to work, she won't be able to get a job. And you feel like saying you know, let's just think about the modern way that people are employed nowadays. There's flexi working, there's home working, there's hybrid working, there's different working hours that fit around. That argument no longer exists because if we prepare our children and we're talking neurotypical children and neurodivergent children if we prepare those children in a very rigid way and then they enter a workforce that is, quite rightly, very flexible, they're not necessarily going to have the skills to deal with that and navigate that.

44:27

And interestingly, when you were saying about buildings and things, there's a fundamental environmental incompatibility going on, where, if you think of a school in your head and what that looks like. There is a reason why those independent, expensive schools has great success with children it's because none of them look or feel like school. They feel like a whole different place. And if you think in your head what's a school look like? You've got long corridors, you've got rooms coming off it, you've got cramped um transitional spaces and you've got concrete outdoor bits, and that's what's in your head.

45:04

And if you're a child who's been traumatized by school experience, or you're a child with really significant sensory issues that you might not even know you have, you just feel sort of fizzy and strange all the time. Um, you're never gonna, it's never gonna work. And then you you sort of are told you must make it work because that's what you do, that you must go into this building. That is fundamentally incompatible with your, with your very being. You must do that because that's what means you're going to get a job in the future. None of it makes sense.

Chrissa WadlowGuest

45:34

Make it make sense yeah, and I think there's there's this um sort of constant, like you mentioned earlier, olivia. Uh, we didn't have all of this in my day you know what the solution was for him?

Dr Olivia KesselHost

45:53

they put his desk in the hallway. He spent a year in the hallway oh, a corridor child corridor.

Kelly JarvisGuest

46:00

Children still exist, they still absolutely do.

Chrissa WadlowGuest

46:04

It's really sad, but you know, I think and I did a series of Facebook lives on this earlier in the year that my ADHD was diagnosed. I was age 40-ish, around that mark, and I had to then relive my life in my head with this new lens that I'd found, and forgiving myself, you know, kind of going, oh no, you weren't bad, it was because of that. Oh, that's why that happened, that's why you did that, that's why you think like that. And it was very liberating for me, very liberating. I don't see it as a label, I see it as my identity. It's very, very liberating. I can celebrate it, but I can also laugh off the silly bits as well. But I'm also surrounded by people who get it. So when I really fall, I'm caught on this really lovely soft bed with my lovely people, so it's just gorgeous.

46:55

However, we did exist back then. We walked amongst you and I think that when we look back into the sort of late 70s one of my close family members was a specialist educator back in the 70s and the specialist schools were on hospital wards. Now we have come a long way, but I always say to parents and to anybody who listen really I'm sorry, it wasn't a desirable thing to have your child assessed as autistic or ADHD back in the 70s and 80s because you didn't know where that child was going to be sent. You wanted to keep them at home, so there was a stigma attached to having a diagnosis back then. Now there isn't. So we're going right now that we know we're not going to end up in a hospital and we're not going to be sectioned and we're going to be part of a community and everything's okay.

47:47

Yes, please, I'd like to have my assessment and maybe it will explain the last 20 or 30 years of poor mental health, because that's what we see. We see a lot of adults come to us and say I saw the difficulties in my child and I thought, oh, I had that when I was younger and now, oh yeah, that's me, that's me. I mean, so many of us have done this. We go for our assessment, we get our diagnosis. It's liberating because we can forgive ourselves, and I just think that society just needs to catch up. And they all people seem to think there's some sort of financial benefit to this. When I had my ADHD diagnosis, I've had no financial reward. It's not like anybody's going ah, adhd, here's 10 grand. You know you won the jackpot with that one. There is none of that, it's just self-acceptance.

Kelly JarvisGuest

48:38

It's the same with the HCPs as well, isn't it? Because you know parents get tarred with this brush of oh well, you just want the government to pay for things X, y and Z through the HCP. Parents don't receive money through any HCP, apart from in very, very exceptional circumstances, and that money is for a designated thing, like paying an OT, for example, and people seem to think there's a lot of myth and fear mongering around like, oh well, parents just want this money and that's not how you wanted this, because you don't want to pay for a private school, and I mean we're no longer friends.

Dr Olivia KesselHost

49:11

I said, you know, I would not wish the struggles my daughter has in school that necessitate me getting this. I would happily, you know, happily pay millions of pounds to remove all these barriers in her education. But, as you say, and it's so hurtful because that's that's not why why the reason we're, why all of us are doing this as parents, is because without that proper support and without that ability to help your child flourish, we are afraid for our children's futures. And that's also with the funding mechanism as well. Putting the money into our children's futures, and that's also with the funding mechanism as well. Putting the money into our children now and into education and into supporting these great thinkers, these creative, great thinkers, is a way that we're going to be saving so much money in the future. You know and it's biting our nose to spite our face, you know, don't pay for them in the prison cell, because that costs a hell of a lot of money. Rather, support them so that they can be productive parts of society. You know, with all that, we're going to have so many, so many issues global warming everything in our world. We need lateral thinkers, we need, we need the neurodiverse brains. We, you know, we don't want to have little factory pop-outs in the world and it is the way of the future that we need to change all these things.

50:30

And I know we've been talking for quite a bit now and I probably could talk to you for another couple of hours. But I think the most important thing and I think all of what we've discussed today will resonate with all of my listeners is that they're not alone, that there is support and that they can reach out to your organization and that your organization what I also like about it is it has different levels, so you know in terms of what a parent is able to fund and what knowledge is out there. So you have a lot of free resources and then you have different tiers. So maybe you can, just before we conclude, just take parents through what kind of the different levels are, because I think that's nice, because it's not a one size fits all.

Chrissa WadlowGuest

51:09

Absolutely so. We've got our social media channels are full of reels and resources that people can download and they can show other people and sometimes parents hide behind those resources to say, look, it's not just me, the professionals say this as well they can also download those resources from our website. There's loads more and it's a little bit more structured on our website. We have cuppa and chat sessions and we have them in person and we have them online. We have social events that we do. I mean, for Christmas, we've got tons of social events and these are are either free or very low cost. All our cup and chat sessions are free. We also have I think the best resource that we've got is our Sunshine Academy. So this is a bit like a Netflix for send.

51:56

So parents or professionals pay a monthly fee and within that monthly fee, they get access to hundreds and hundreds and hundreds of courses on whatever they want. So it could be selective mutism, it could be ADHD, autism, the law, whatever it may be. But they also within that community. On the membership area, they also have access to all of our advocates. So they have a community page where they can ask questions and advocates will respond, and once a month, 20 people can actually log on and spend an hour with an advocate. So they have a direct advice session with an advocate and it's just invaluable. So for parents it's only £10.99 a month and they can cancel at any time. And professionals, they have a little bit extra because they have some extra CPD in there, and so for them that's £19.99 a month Again, absolute bargain for professionals who want to learn more. And then if that's not enough and I completely get that sometimes you think I have all the knowledge but I cannot do this for my child. I'm too emotional, I'm too traumatized that's me, by the way then you might need an advocate, and so that's where our advocacy comes in. And that is more of a premium service because you're getting access to a very, very skilled professional who will bring your stress levels down, meet you where you are, help you to heal, but also advocate on your behalf as little or as much as you want.

53:23

And some parents are like me where I'll say to Kelly Kelly is my advocate. And I will say to her you just do it all, because it stresses me right out. So Kelly does it all. She liaises with all the schools and the local authorities and everything for me and I've given her permission to do that. Some parents will say tell me what I have to do and I'll go and do it. So then actually that reduces the cost. So I'm somebody who spends a lot on advocacy, but actually somebody else might not want to do that for whatever reason budget or because they don't want to, and so there's a. We've also got our live webinars. We have at least I think it's 60 webinars a year. We carry on to 60 to 70 webinars live webinars a year that we do. So we very, very busy. So there's something for everyone, whether it's in person, online, whether they're looking to socially connect with us, therapeutically connect with us, if they need information, if they need training.

Dr Olivia KesselHost

54:16

We are literally a one-stop sunshine shop and that's brilliant because you know what that appeals to everyone and it's also that's why I feel so comfortable recommending you guys is because there's something for everybody and it's not just. You know, you're not um, you're not costed out of of getting some some, some support and some solutions, which is which is great, and and that you're not alone. Because I think you do feel very alone. I think you've, you know, you've shared your, your journey, chris, about how alone you felt. I, I felt very alone and I would recommend you listening to Chris's episodes 62 and 63. They highlight and they make you feel less alone when you hear other people's stories and to know that there are people that will back you and that you can move forward.

54:58

Because we've talked big topics today. There is no ultimate cash flow. That's going to happen. We're not going to be able to rechange the education system. The fact that we're cognizant of it, that we're having these conversations, it will change, but the thing is right in the here and the now, we have something to help our children and that is ultimately the most important thing. So I want to thank you both for your time today and for joining me to celebrate the 100th episode of the Zen Parenting Podcast. I know that this probably won't be the last time we speak. I look forward to hearing all the exciting things you're going to be doing and having you back on the show, maybe to celebrate the 200th episode or some other success, but I just really want to thank you for your time, your wisdom, your knowledge and how much you empower myself and other parents out there who are navigating this neurodiverse world.

Kelly JarvisGuest

55:45

Thank you, it's been wonderful. Congrats on 100 episodes. It's a pleasure to be a part of that celebration.

Dr Olivia KesselHost

55:53

Thank you for listening. Send Parenting Tribe If you haven't already, please click on the link in the show notes to join us in the private Send Parenting what's Up community. It's been wonderful to be able to communicate with everyone in the show notes to join us in the private Send Parenting what's Up community. It's been wonderful to be able to communicate with everyone in the community and for us to join together to help each other to navigate challenges and to also celebrate successes. Wishing you and your family a really good week ahead, thank you.

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