Navigating the EHCP Journey: Nicole Bateman talks emotions and SEND Law

In this deeply personal episode of "Conversations with a SEND Mum," host Nicole Bateman takes centre stage to share her own EHCP (Education, Health and Care Plan) journey. With raw honesty Nicole reflects on the emotions, challenges, and invaluable insights gained from her experiences navigating the EHCP process.

Episode Highlights:

• Emotional Rollercoaster: Nicole delves into the emotional rollercoaster of her EHCP journey, from the initial hopes and aspirations to the disappointment of receiving a "no" to assess and a subsequent "no" to issue. She shares candidly about the highs and lows, the fears and frustrations, and the unwavering determination to advocate for her child's needs.
• Key Sections of SEND Law: Nicole sheds light on the important sections of SEND (Special Educational Needs and Disabilities) Law that parents need to be aware of when faced with a "no" response in the EHCP process. From understanding legal rights to navigating the mediation process, she offers practical guidance and empowerment to fellow parents on similar paths.
• Experience of Mediation: Reflecting on her experience of the mediation process, Nicole shares insights into the challenges and opportunities encountered in seeking resolution and agreement. She emphasises the importance of preparation, communication, and advocacy in navigating this crucial stage of the EHCP journey.
• Passion to Support Others: Through her own journey, Nicole has discovered a deep passion and commitment to supporting others facing similar challenges in the EHCP process. She shares her vision for empowering parents with knowledge, resources, and resilience to advocate effectively for their children's needs.

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Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

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Hello, and welcome to conversations with the send mom podcast with me as your host, Nicole Bateman. Today's episode is slightly different from the others because I have no guest. It's just me. But I am talking about our EHCP EHCP journey so far because I'm right in the thick of it. It's raw, it's real and hopefully I can give some little tips and solidarity and support for some of you listening who are about to go through the EHCP process, are currently in the middle of it, or have even got out. The other side. So want to take you back to the start probably about two and a half years ago. And that's the thing with a lot of these things, isn't it? For us as SEND parents and It takes time. It takes time to go through these different things and trying to bring together all of the aspects. So my son, he has epilepsy, had his first seizure when he was four. He's also autistic. We got a diagnosis of autism in June 2023. So he has those. two diagnoses. He also has sensory processing differences and some other co occurring things. So, you know, there's multiple things there. Interestingly, two and a half years ago. So we have tried multiple different medications for, for our son and the combinations. And right now it's the best combination that we've had, he has multiple different types of seizures and actually the, the two drugs that he's currently on is controlling one of his types of seizures, the impaired awareness focals, but he is still having those focal awareness ones. So it's, we're in the best place we have been so far with. On this three and a half, nearly four year journey since his first seizure, which I'm very, very grateful for, but about two and a half years ago, you know, we trialed multiple different medication already, and the GP, the GP, not the GP, the consultant, pediatric consultant who specializes in epilepsy was, We were saying, so what can we do to support? We're trying different medications, they're not working. What else can we do? So he actually wrote a letter to say that actually, because my son you know, some people with epilepsy have abnormal brain activity all the time that shows up on an EEG which you, where you kind of put wires on your head, about 26 wires. Get glued to your head, then it tracks your brain activity. So for him, it's not just when he has a seizure for some people with epilepsy, the abnormal brain activity is just when you have a seizure. And then for some, it's all the time. So for him, he, he is someone who has it all the time, which means that You know, he has certain hurdles to get over with regard to cognition, learning, memory, and also because of where it is, it's in the temporal lobe. And so emotions and that kind of all of those processing things are some things that, you know, he has extra hurdles to get over before he can access things or understand those So he, you know, he is amazing and he does amazing. And yeah, he's great, but there are things that can be put in place to support him so that he can access learning at school, for example. So he wrote that letter about two and a half years ago, and then it took some time to kind of say to school, like they knew he needed to apply for an AHCP, but as with schools, you know, they, they kind of try and. Say, Oh, well, we've only got a certain amount of ed psychs that we can, you know, we can use like it gets allocated all of these things, you know, and actually in the end, you know, I said, look, we really need to start the application process for the EHCP and they actually used a private ed psych in there, but that was, it was only because I was some, that. parent, you know, I was a teacher. I didn't want to be a pushy parent. However, sometimes you have to be like, I have a good relationship with the school, especially with the previous Senko. But you have to keep on putting yourself forward, putting yourself out there, trying to you know, encourage things to, to move forward because. There's, you know, there's a lot on everyone's plate, there's a lot on school's plates and especially with lack of funding and all of those things, so you've gotta, you know, I encourage you if you're there and your school is saying, Oh no, let's wait, let's see, let's, let's wait and see. Go for it, just either say to school, look, I would love to do this with you. I'd love to put this application forward with your support because I know that, you know, my son daughter needs this and say to them actually, and if there's not that support there from the school, if you can't put that forward, then I will put in a parental request for an HCP because. Ideally, we want to do it in partnership with the school because that is, that is helpful. However, if you're in the stage where the school is like, no, I'm not going to put it forward, you can put forward a parental request for an HEP, especially, you know, if you've got reports from different professionals and things like that, that can back you up and that can support you. So. I would encourage you, first of all, to look at the documentation that you have right now, whether, if your child, you know, has certain medical needs and is under a consultant, you know, look at the letters, gather all the letters that you've had. You know, if you've seen an OT, occupational therapist, you know, Put in that report, speech and language therapist, put in that report, just gather all the documentation that you have and all the evidence. And also I said to a parent recently, you know, whether it's for DLA a disability living allowance, or whether it's for the EHCP, write down. What your day looks like, because what you need to prove on like disability living allowance forms and also, you know, with the EHEP to get the funding is that your child, you know, needs additional support compared to a peer of their age, you know, so it's, it's thinking about, okay, what is your day? What is one of the worst days you've had as well for the DLA form? And thinking, what are they seeing throughout the day, throughout the night? All of the things that you need to do so you've got a written written piece from you as a parent thinking about what do I actually do to support my child that is additional to appear that age. Now, if it's your first child, you may be like, actually, this is, you know, you may not, you may not know what. Those additional things are, but maybe chat with a fellow parent who has a kid that, that maybe doesn't have a special educational needs or disabilities and think, okay, is this, is this something you do to help your child at this point? Like, like getting changed, for example, like, you know, we, we need to break down into single step things. We use visuals to support, you know, my son is seven. So a lot of people, it'd be okay to do, you know, buttons he can't do. And all of those things think, is that. You know, is, is that something that your child can't do as well? Like if they are, you know, if they're neurotypical and things like that, you know, think about that and help, you know, reach out to people to help you then work out what you can write on some of these forms. So gather documentation, speak to others. And then, and then you put. put things together. You put all the reports in there and you fill out the form. And like I said, you know, we did it with the school. And we then waited for to hear whether the AHCP Was going to be, you know, whether he was going to get assessed. So that should be done. You should hear from the local authority within six weeks, technically whether they're going to put it forward for an assessment or not. Now we, we put it in, in May, 2023 in the end. And there was after multiple delays, but then, on like the 19th of July. So yeah. So within that six weeks we got a no to assess. Now at that point yeah, I was devastated. I was like, what, why doesn't the local authority think that my son. can't even meet that criteria to, to have an assessment to see whether he needs the HEP or not. Because actually, really important information is if you get a no to assess, then please, please look at this information and please do you know, fight it. Because the two legal criteria that you need to meet to get An EHCP needs assessment is one, they may have SEND needs. So for, for my son, like he definitely has SEND needs because, you know, he's got two diagnoses, you know, of autism and epilepsy, so that couldn't be contested because that's the facts we've got that on paper. And then the other one was they may need an EHCP. So if they may have SEND needs and they may need an EHCP. then you should get a yes to assess for your EHEP. So for, for us, we didn't really get a reason why it was rejected. Later I was, because it was the day before school broke up. It was literally that timing. I was like, this is so typical. And at that point, obviously school. were breaking up. I couldn't ask the Senko to, to be part of the process because it's not fair because they need a break over the summer holidays. Sendaiass was on holiday for a couple of weeks at that point. So again, didn't get any response there. But Sendaiass This, this time, second, you know, a useful. So if you have a send I ask in your area, then definitely get in touch with them. I was, yeah, I was very grateful to a friend of mine that I know who's been through the process that gave me some, some really good tips. Because otherwise I'd be like flailing. I'd be like, what, how do I do this? You, you, you feel sad and angry, or I felt sad and angry. And also I was like questioning, like what? Like I knew that he met the criteria for an assessment because I'm not quite sure how they would be able to prove that he definitely didn't need any HEP because that's what they've got to prove that he definitely doesn't because the criteria in law, in SEND law, is may need. Any HDP assessment and may have send needs. So they've got to prove that they definitely don't. So the threshold for an assessment is, is relatively low. But there were so many people that got rejected on that day, like in the forums, you can see, oh, I got a, you know, rejection. So I think at that point our local authority, unfortunately, is in like over 60 million pounds debt. So a lot of these decisions aren't based on the individual child. Even though it feels really personal. And I went through the kind of eight weeks waiting for that mediation and chasing and all of that. And over that time I did question myself. I did think, Oh, maybe even though I had reports from seven different professionals, because we've got a neurologist, we've got an epilepsy doctor, we've got the doctor community pediatrician for the, you know, who assess for autism. We got OT, we got Ed psych, we've got a speech and language therapist and Senko. So we've got seven different reports to say that all of the different things he needs to be able to access learning, but still it got rejected. I managed to, after, after about, I think 16 emails and phone calls, finally got someone to get back to me from the council. And. And, and they kind of, I, again, I asked a direct question, what is the actual reason? And they couldn't really pinpoint what it was. So I said, and they, they said, Oh, we're looking to, to mediate maybe five of the like 300 that we rejected. And I said, the thing is, I don't, you know. For me personally, they should be looking at the individual child, not the numbers. It's not a numbers game. It's about each individual child. And you know, I'm not naive. I know that there's lots of different funding issues and all of those things, but it's about our children. It's our children's lives, like every week counts when they're not getting the support they need, then there's so many different ripple effects and impacts on them. So it's so important, so important for them to get the support they need. So finally, it got mediate, it got mediated apparently and it came back with a, with a response saying that my son, the school can provide for him by providing pneumocon for him. So pneumocon is like blocks and things like that, that can be used to help kids in maths and numeracy and all of those things. Now, what was ironic was that. All throughout the EHCP, like, application, it says his strength is maths. His strength is maths. Like, literally, his special interest is maths. He loves maths. His arithmetic is incredible. And they said that apparently school can provide for all of his needs by doing Numicon. I was, I replied and I said, you clearly did not read. The, the application, you obviously got it wrong because that wasn't, you know, he doesn't need support in maths. He needs support in comprehension, multi step questions, executive functioning, like all of the other things, but they came back with that. I didn't get a reply from that, but we went to mediation a few weeks later. And fortunately this was the first time I'd, I'd kind of come into contact with someone who had, who was totally honest at the local authority. And so. I said my piece, I said, can you tell me why he definitely doesn't need an EHCP? Because that's what you've got to prove. And they said, no, I can't tell you why. So I'm overturning the decision. And over those kind of eight weeks between like the no and the mediation, I was getting dizzy. Like it was, it was summer holidays and the mental strain is just so much. And like, then it goes to the physical and you know, there were days when I was just. Even when I sat up I was dizzy because I was just trying to get that care and that support for my son and You know, I know many of you listening will maybe have gone through this and be feeling all of those things, that mental strain, that emotional drain, that being on fight mode, our nervous systems are in that constant fight, flight, freeze, you know, that state, because we're having to fight for what our kids need. So I cried when she said I'm overturning it, I literally cried and I was like, sobbing, sobbing. I was like, sorry, I'm just. Like, it's just like, you believe me, like, it's like, you just feel that relief of like, believe, like, yeah, okay, I'm not going crazy. Like, you know, I'm finally believed. So that was an absolute relief. And then we went through the next, however many weeks we were doing, even though we had an Ed Psych report They were saying because it's private we need one from the council and actually that's not in the law so like if someone's saying that to you try and fight back on that because you can use private assessments, they are relevant and they are valid. Anyway, we went well over the 20 weeks I think, you know, by the time we've just received the, you know, we've were we inputted to panel to see if they would issue it. I think it was on week about 35. And I know there's many that go even further than that. But again, many, many emails sent to chase to chase an ed psych appointment. Oh no, sorry. It's not been allocated. We'll, we'll get on and allocate that. It's. That chasing and that thing, and what really gets me is that, you know, I, for example, I don't have a full time job. I, I run my own business because of that flexibility, because for example, yesterday I went and picked up my son because he had a seizure and all of those things, but for many of us, many of you listening, you may just be like, actually, you don't have time to send 16 emails that to try and chase when actually they should have given you the answer. You know, there's so. The time it takes, the hours that we spend chasing and fighting, and it's, it's draining. And I just don't want, you know, if you're listening, I don't want you to feel alone in it, because even, even myself, who has a great supportive family and support network and things like that, you still sometimes feel alone and you feel like, what, like, how You just do, and it's just, it's just really hard and so if you're feeling that hardness right now, then I feel you, I'm with you, reach out to me, you know, conversations with the Send Mum on Instagram, send me a message. You know, just please do, because you don't have to be alone. And, and that's why I'm setting up a community interest company through this, through conversations with send mom, so that we can have that peer support so we can feel less alone so that we can meet up and we can, you know, have that connection because. So many that I speak to are going through a very similar process. And the most recent thing is that on Friday, last Friday we got a no to issue. So, you know, we went through all of the different things, the co production meeting, and before it goes to panel, what you need to make sure is that you've got specific outcomes, specific interventions. I sent back, I Senko and myself, we had the co production meeting. And I said back, I said, look, this isn't specific enough flexible support, like say one to one in, in, you know, English and different things on that, and then spread flex and high risk activities like swimming and all of those things for the epilepsy, but also, you know, for, for some of the impacts on learning. But then, then it was like, and flexibly as required, and that is too vague. It's too vague. So I said, it said, look, we need to go back to the ed psych and we need to change that. And so we went back and she did change it to kind of, you know, comprehension based activities in all of the foundation subjects and things like that, that, that he needs that one to one support. So, you know, I thought, okay, yeah, we've got some specifics there and, you know, it's looking at it and working out actually for all of those interventions from the different you know, that's on the summary of assessment in the draft EHP, then yeah, they, you know, He's going to need that extra funding to get that support because it goes beyond the technically six grand that, that, you know, that the schools get for the same budget, which in reality, they don't necessarily get all of that. But we got a no to issue and. So my lovely case officer, she phoned me and I'm very fortunate that she is a good one because I know there's many that aren't from all the, you know, from friends experiences and different things like that. So, but she's leaving sadly. So. Yeah. When she told me, I cried. I, I just, I just think every week counts. Unfortunately, you know, school had to cut 20 percent of TAs, funding issues and different things like that. So since, since Christmas, he's got even less support at school and I know he needs more support. The school know he needs some more support, but hands are tied. And. Not getting this yes to issue has a massive impact and any of you, all of you that have had that, no, you, you know, how it feels that, that frustration, that anger, that sadness, that injustice, like the fact that people who haven't even met my son have made a decision. They've actually ignored the seven different professionals that have actually met my son and myself. And they've said, no. And they've said school can provide for his needs, you know, with the SEND budget. So very generic, generic reason, which I'm sure many of you would have got. But looking at it, so right now, what am I doing? I'm, I'm looking at all of the intervention that was listed on Draft DHCP, and I'm costing it, I'm costing it up because it's It's way more than the six grand needed, so school aren't going to be able to provide. This is what seven professionals have said that my son needs to, to, to access learning, to make learning accessible, to make school accessible, to thrive and not just survive. And it's, it's like, for example, days like today you know, it's World Book Day. He's not in school today because it is too much and, you know, and it changed transitions, all of those things, as well as basic safety things for, you know, having seizures at school and then the impact of that and the impact on his learning, sometimes regression in learning and being, you know, there's so many things and you just. I just don't know how people can money over children, like their lives, children's lives. We need to be proactive and not reactive to things, but it seems like the system is very reactive. So. This is our journey so far. We're going to mediation. We're going to fight. I told my case officer that they better, you know, they're going to have to use money to go to tribunal if we don't get it overturned for mediation. Our council use 100k on legal fees per quarter. So that's 400k. 400k to fight at tribunal and 97 percent of the time parents win. So I said, I will get that support for my child. I will continue to fight and they will have to spend that money and, and we will win, but I just wish it didn't have to be such a fight and be at the detriment to the mental health of parent carers because yeah, my. Mental health has been the worst that it's ever been. Just having to fight, and it's not on. Things need to change, and we need to stand up. So, so yeah, that's our journey so far. And I'd love to hear about your journeys. I'd love to hear. Any tips or anything like that that you have that you can share with others? And I'd love to invite you to, to connect with me at conversationswithacendmum over on Instagram. Please do send me a message. I love to hear from people. And in the next coming months, you will find out more about the community interest company, Not For Profit, that I'm setting up so that we can connect more and we can have resources and support and we can feel less alone. Thank you. for listening to our journey so far, and I just hope that soon all kids will get what they deserve and what they need in order to thrive, because it's their life. It's their life. They're not numbers. They're not statistics. They are individual, amazing people, and they deserve to have learning and life that is accessible to them.