2. Winning for SEND: When parents take on their Local Authority

Disabled Parent - Carer Jen didn't choose this.

Her autistic son didn't want this.

It's impacted both of their physical and mental health.

It all could have been avoided. It should have been avoided. No parent should have to take legal action against their Local Authority  to get something that their child is legally required to have.

Jen Dunstan deliver a balanced account of how her son was let down and by who. She talks about those who did everything to make amends and put things right. Not everyone worked against her, but those who did created pain for her and her son.

Court ruled in favour of Jen and I was fortunate enough to be listening to her tell fellow parents on a twitter (X) space. A space that is run twice a work to support parent carers like Jen. Many have children who are autistic or have ADHD, but they welcome parent carers with other conditions too. As well as someone like me, who tunes when I can to learn from the lived experiences that these parents share.

Within the podcast Jen uses a few acronyms which may not be common knowledge:

LA - Local Authority
SAR - Subject Access Request (This is a request for the detailed notes that an organisation holds on you)
LGO - Local Government Ombudsman 

She also mentions Contact who are charity supporting families with disabled children

You can view their website using the following link Contact: the charity for families with disabled children

Jen is on social media and can be followed on the following link Relish Hendy aka 💙Nanny Jen💙 (@relish_hendy) / X (twitter.com)

Transcript

0:00

And this is overcoming adversity, real stories, real people, real life. I'm your host, Scott Whitney, and every two weeks, I'll be bringing you an interview with someone who's faced, overcome, battled adversity. Now, please, please, please subscribe to our podcast. Give us a rating, share it with your friends. It will help us be more visible and help more people. So, let's get back to the interview.

Scott Whitney: 0:37

Welcome to the bonus episode of overcoming adversity. Joining us today is Jen. Jen, you've recently gone through a period where you've had to overcome adversity.

Jen Dunstan: 0:49

Hiya, Scott. Yeah, well, like a lot of people, I have my own disabilities and I'm also a parent. Last year, my son got terribly poorly after an incident in school and was hospitalised for two months due to school trauma. And... aFter he came out of hospital, then went into being, care in the community under the air of the Child and Adolescent Mental Health Service. So he then had from his first being admitted to hospital to quite recently, he had a total of 15 months altogether out of education. The school that he remains on the roll at, but is signed off due to medical grounds. by the Child and Adolescent Mental Health Service, didn't send him any educational support throughout this entire 15 months. And my son is entitled to free school meals because we're a family on a low income, which if he was in school, he would receive the benefit of. But because he has been out of school for all of this time, he hasn't received it, it's not been passed on to him and I. So it's a two pronged problem, really, in that all this time, in order that my son doesn't go without his education completely, I've been funding and resourcing and doing all the research for and delivering his education. And also I've been picking up where the school haven't been passing on his free school meals monies. I ended up absolutely exhausted, even more poorly than I usually am. I've been basically a prisoner either in the hospital or in my own home throughout all of this time. And I ended up in a couple of grand worth of debt because I needed to make sure that my son had everything that he needed. You know yourself all children in Britain are legally entitled to an education. It can be homeschooled. My son isn't. I never made the decision to take him out of school. I'm not a teacher and I've got so much respect for people who are able to homeschool full time forever. I'm not able to do that. And I only ever thought what I was doing would be short term while the school sorted their act out. And while the LA liaised with school and social services and everything, and they all sort of came to agreements on what would be put in place for my son and when and be delivered by whom. But every single month went by having a multi agency meeting each month where there was school, NHS consultants, local authority, SEND representative, representative from school, NHS key worker, autism advocate, and myself. And after 15 monthly meetings of people making promises that never materialized, I started to seek legal advice. Because my son had already lost just over a year. So that's where we kind of start this story.

Scott Whitney: 3:16

Before we move on, that's obviously a lot for, for anyone. And how was that for yourself? And how did... people speak to you and the other representatives in these meetings?

Jen Dunstan: 3:31

If you were not a parent carer you might not be able to relate to it but I know that any parent carer listening to this will relate to it and it's like you find yourself In a weird situation because you're the person who has 24 hours a day, seven days a week care and responsibility. You're not just a parent, you're also providing some elements of, nursing and care in that respect. Delivering medication and, following through on therapy work and things like that as well. and that can take a multitude and all of different things, but obviously in our case it's, predominantly supporting his sensory needs and his mental and emotional well being, as well as his physical well being. so you are the expert on this young person. You're by far and above the experts on this young person's, level of ability, their stage of learning, what they can and can't cope with, what their needs are, what needs to be in place in order for them to succeed. But you find yourself in these meetings where your voice is the one that's listened to the least. the NHS consultants and nurses and doctors get listened to. They're a professional person. Social workers, obviously, they get this from the in our case, it's, I must say, it's the social workers from the children with disabilities team specifically. They, they obviously get listened to as well. There can be care workers and PAs, they get listened to as well. Their opinions, everything, it's like everyone's opinion is sacrosanct and you're a hysterical parent. It's, that's how it, that's how it feels. So, it's very frustrating, and you can find yourself in tears, you can find yourself raising your voice, you can find yourself saying this is it, I'm not doing this anymore. Expressing all kinds of different behaviours in these meetings out of frustration and exhaustion. And just the sheer bloody mindedness of the entire system really Scott. it's, it's really, really difficult. What you have to do is you have to, on very little sleep, with very little physical energy. And, and in my case, I'd had, my hair was literally falling out of my head. When my son got admitted to hospital, my hair was here. By the time he's left hospital, half my hair throughout my head's fallen out. And it's been cut, like, to here. because the stress. Made me that ill. but you, you find yourself having to remain very calm, using appropriate language, appearing as professional as the professionals, even though you're to all intents and purposes and without wanting to denigrate our positions, you're just, in inverted commas, appearing. Your voice, your opinion, your experience it's furthest down the ladder than anybody else's and just month after month after month of that for over a year I think is probably enough to do anyone in and I'm lucky that I've got some very close friends who are also disabled people and some close friends who I've met online who are also parent carers and being able to liaise with, friends that are in DPACC and friends who are parent carers all together kept me on this planet. I don't know how I'd have coped if I'd have been on my own. And I wouldn't wish it on anyone, to be honest with you.

Scott Whitney: 6:16

And was the, professionals, ever trying to put words into your mouth,

Jen Dunstan: 6:21

Initially, what happened was I wasn't believed. So in the slight run up to my son being actually admitted to hospital, I raised concerns with the autism advocate and got in touch with and found an autism advocate for a start because it was like stuff that school was saying and stuff that my son was coming home saying didn't tally. And then my son, being repeatedly physically restrained, due to them not supporting him properly and him having meltdown situations in school, he went into like a hyper alert state where they had to call me to come and get him because they couldn't manage to get him into the school transport for him to come home. So I went to get him and saw the state he was in and took him to Children's Hospital A& E, on the advice of CAMHS, because I was like phoning them on the way, saying I've never seen him like this, I don't know what's going on. And he's bruised and he's screaming, he's gone non verbal, because he isn't non verbal the whole time, that was the first time where I was really just not believed and not listened to and the CAMHS A& E, the children's CAMHS team initially when they assessed him at A& E were like, Look, he's already under community CAMHS anyway, there's not really anything we can do. And I just remember looking at him going out thinking, can you not see how poorly this child is? You think this is normal? You think this is okay to send someone home in this state? So I, managed to get him in a taxi and get him home after a lot of risk and morale. And he didn't go to sleep for three days and nights in a row and had a psychotic episode because he was like wakeful, dreaming, because obviously nobody can go that long without sleep. Really, really dangerous. he was seeing all sorts that wasn't there. And trying to defend himself, and in doing so, attacked me. And I'd unfortunately dozed off to sleep by this point, because no one can stay awake that long. And, he had a, a hammer from a, like, archaeology set. It was only a small one, but even so it was a hammer, a metal hammer. I woke to being attacked by a hammer. in my house. Whereas if they'd have admitted him, if they'd have believed me at the first instance saying this isn't right, there's something not wrong, something really not right here, then that wouldn't have happened. So I, I was all black and blue all down one side because I just like turned, turned in defense. So then he was admitted to hospital and it was when he was in hospital, they then observed he wasn't going to sleep and they had to get the head of the sleep clinic for children in all of our region. and that doctor's students and that doctor's team were, they were really interested in why, why is this young person not going to sleep and giving him, you know, the most maximum dose of melatonin and things like that. And it still wasn't having the effect. He could have sleep for a couple of hours or so and then he's back awake again. But it was this hyper alert state was a real fight or flight thing. It was causing, you know, such adrenaline and everything to go around his body that he wasn't going to sleep. So that was the first instance where I really just wasn't believed and as the meetings, the monthly meetings went on, once my son was more on a level with his medications. for ADHD and autism and antipsychotics, as well as sleep medications. So by the time he came out of hospital, he was on six different meds, and released into the care of MEEP and CAMHS in the community, as well as keeping a social worker on side from the children with disabilities team. So there were lots, lots of people like, Like a safety, like a safety net around him. And that was, that was a good plan. You know, I think that I do still think that was the right thing to do. Whilst all that I think was good and correct, what I didn't know was that while he was in hospital, Scott, somebody from his school, who was representing the school in a multi agency meeting that I wasn't invited to, because I'm just a parent, not professional, had stipulated that the school were no longer able to support my son. That happened in July. 2022. And that is on all the official documents and those documents state there was social worker, someone from the SEND department at the LA, as well as various people from the NHS and school all at that meeting. But if you look at school, social worker, and the SEND department representative, that's three different people from the LA who all are aware now the school can't support him. And at that point, something should have clicked into place and someone in the L. A. should have then taken over from the education department. Okay, the school can't support him anymore. It's now the L. A.'s responsibility to ensure there's an adequate, form of education. Adequate and appropriate for this young person being put in place. And it didn't happen. Because I wasn't there, I didn't know it had been even said. So it was only when my son had been at home several months, and as I said to you, I started looking at trying to get some legal advice. For I started doing S. A. R. s I did an S. A. R. to the local authority, and I did an S. A. R. to the school as well. And it's only when I was doing the S. A. R. s and reading through everything with a, like, with a fine tooth comb to try and see, you know, surely this isn't right, and I'm going to get as much information as I can so, because I'm going to speak to solicitors, because I'm sure this can't be okay, that you can just leave a child with no support. That's when I saw that statement in black on white, we can no longer support this child. Oh, right. Even I know when a school says that means that the LA has to then take responsibility for that young person. that's what happened rather than them put words into my mouth, so to speak, which I know just happened to parents. it was more a case of things had been said among themselves. And I've been kind of gaslighted for 15 months with the school saying during these multi agency meetings. We're going to fund a one to one tutor from the pupil placement premium to go to the home. It's just really, really hard to find an organization that does this kind of work. And me sitting there going, yeah, I understand it must be very difficult, you know, because, because I don't know how these things work. I mean, to you, it's not a general, it's not a common thing, is it? I don't know. For a school, for a school to fund a teacher who's not from the school to come to the home. Anyway, just before the six week holidays. And I'd already started doing, gathering the information and stuff at this point, just before the six week holidays 2023, in the July meeting. Then, the school said, Oh, we've found an organization I said, okay, thanks. And I was given a contact number to call to arrange a day for someone to come. And I spoke with their admin team. they were looking at their availabilities for staff, etc. And the woman on the phone was really nice. And she said to me, Oh, what sons your school at? And I said, He's at Heritage Park School, Sheffield, which he was at the time. And she went, Oh, yes, we know that. We already support some of the students there. Pardon? I thought I can't have just heard what I've just heard. And she went, yeah. Oh yeah. We've got several students that are, uh, that are on alternative provision for Heritage Park. I felt like my heart fell out through my stomach, through the floor. All these months they've been saying, oh, it's so difficult to find an organization that does this. They already were using this organization, Scott. So my son had gone over a year with no education and yet the school had been giving the excuse that the reason no one to one tutor specialist trained etc turned up for him was that they couldn't find anyone. They already had them on, in their employment and I thought, you know what, you've had it, you've had it. That's enough. That's the straw that breaks the camel's back. My son's now at a point where he's relatively stable. I'm getting a bit more rest now. He's sleeping at nights by this point, most nights for a reasonable amount of time. That's it. You are going to regret doing this to my boy. And you're going to regret doing this to me. And I just started. Downloading the, Education Act, the Children and Families Act, things like, things like that, the, the Human Rights Act. Just downloading and printing off all the legislations. I highlight to pen, and I'm going through everything, absolutely everything, and anything that's jumping out at me that could possibly pertain to my son and his situation. I'm highlighting, right, there's this, and it's this part of this legislation. And I was putting notes together, everything. I'd contacted three different law firms. One of them said that I did have a case but they were at full capacity, they couldn't help and they were sorry and they wished us luck. The other two said they could help if I paid but they don't take legal aid for this type of issue. Obviously at this point I'm already in debt anyway, there was no way I could put money up front to pay a law firm. I'm just going to have to learn what the law says about these issues when it's been a similar case. And by speaking to other parent carers, I found out about the local government ombudsman. So you can, in situations like this, you can go to a central tribunal. It's one option. Or you can escalate a complaint via the local authority, complain to them first, see what they say. like complain to the head of services sort of thing. And if you're not happy with what they can, what they reply with, then you can escalate it to the local government ombudsman. And I didn't even know what that was, you know, I had to learn. all this on the fly. So as soon as my son's going down to sleep each night, I'm reading up local government ombudsman and send tribunal outcomes in court cases. Anything that had any young person that's got similar disabilities to my son, that's a similar age, that's been out of school for any length of time. It didn't even occur to me about the free school meals initially, until I saw in someone's local government ombudsman outcome, their child had been out of school, let's say, for example, two years. And as part of their compensation that was awarded by the local government ombudsman, there's just a little line there. And it said such and such amount reimbursement of free school meals entitlement. And I thought, well, I went on the government website, this department of education, free school meals, guidance for local authorities. Then I started looking at, What's free school meals for children who are out of school? And all I could find initially was if a child is home schooled, they're not entitled to free school meals. But my son's not home schooled, not, electively home schooled. He is under the care of LA. I spoke to the social worker and said to her, is my son's free school meals entitled, Does this mean the school have been getting his free school meal money still while he's not there? And she goes, yeah, if he's, if he's entitled that money goes to the school, it's not the local authority's responsibility to then see what the school does with that. It's the school's responsibility. And she goes, hang on, have they not been passing it on? I went, no. So she emailed the school and in a polite and professional way instructed them to backdate and process this for my son. and she was totally ignored. So I was then digging, digging deeper and deeper into anything that I could find, where there's anything that makes it really, really clear and what parts of what legislation is it. Tere's a charity called Contact, and on their website, there's a page from the 23rd of May, and the title for that is, Minister for Schools Confirms free school Meals Voucher Option for Disabled Children on School Roll. Anybody can have a look at that. If you've got a child who's out of school but is on a school roll The letters that from school minister Nick Gibb had sent in reply to the CEO of contact are actually on their website as well. I, as well as addressing the fact that my son hadn't been given any form of his legal rights and formal education for all of that time, I also put a little form of documents together to show that he is entitled to free school meals as well. I complained directly to the head of services in Sheffield, the head of children's services. And education. and I tagged in the local education counsellor, as I said, the head of services, my son's social worker, the autism advocate, the school headteacher, my MP, Nick Gibbs MP, and Gillian Keegan MP. Because this is the thing, everybody's got a boss. you don't have to accept, you know, if a headteacher says to you. No, no, your child's not entitled to it, or if, like I said before, if they just ignore communication attempts, the book doesn't stop with them. Everybody's got a boss. Everybody has to answer to somebody. I mean, heck, if even at the end of the day, if an MP is not doing the job properly, and it can be well evidenced, they have to answer to a judge, you know, someone always has to answer to someone. That's, that's how it works, isn't it, this system? provided you can evidence what your young person's... situation is that they haven't been being provided with something they're legally entitled to, you can say, provide this for my child or I'm going to let your bosses or the people that you're answerable to know about it. was no longer, no sooner than 48 hours or so that I'd sent that email where I said, right, my son's been out of school for this amount of time. You've, you've not provided anything in July, 2022. The school stated they can't support him anymore, at that point the LA should have taken over and should have been providing him with his education, and didn't, despite there being monthly multi agency meetings, still this didn't happen, 15 months down the line, no education, no free school meals, the social workers tried with the school, the school have ignored that, so my son's out, over 15 months worth of education and support, and free school meals, what are you going to do to make this right for him? The nice thing was that the document that I added, which proved that the school had said they can't support him anymore, was a social services document. So, had the school have said, oh no, we didn't say that, it isn't me who was being called a liar, it would have been a social worker that would have been being called a liar. You've got the L. A. disagreeing with the L. A., really, in that respect, because it's an L. A. funded school. The education counsellor and the head of services were really concerned at what happened, to their credit. Obviously, they don't know everyone's individual cases. But the education counsellor at the moment, she's called counsellor Dawn Dale. Councillor Dawn Dale and Meredith Dixon Teasdale is the head of All Children's Services. So Meredith and Dawn, via the Autism Advocate, contacted me and we had a face to face meeting, just us and my son, and my son's And they said, right, can you explain to us what's happened? And even with them... I mean, Meredith had been at the time, she'd been in post as head of children's services for three months. And she said, forgive me, with what you're saying about the free school meals, obviously your son's not been in school. And the legal team are saying, you know, that the free school meals vouchers can only be sent on when a disabled child's out of school, to a place where a child is receiving their education. I said, yeah, I know that, but the school should have been giving him an education, and didn't. Which isn't my fault. I've been educating him. And I can evidence that the social worker absolutely will, back that up and I've kept all of the work that we've done. So I had the letter printed off from the contact charity website with me and gave that to Meredith Dixon Teasdale. She's took that to the council's legal team. A few days later, I was contacted by the head of education in Sheffield, who's called Andrew Jones. And he's obviously very apologetic. I knew they knew at that point they messed up on a monumental scale because I was getting these people, you know, phoning, let me start by saying how sorry I am. You know, you're thinking, whoa, okay, they know they've messed up. They know there's a legal issue here. Well, the interesting thing is, is that he phoned up and, looking at the, from the day of the last day of my son's attendance to be. Beginning of the six week holidays this year, they backdated all of his free school meal entitlement and repaid that to my son because schools just aren't simply allowed to keep this money, and there'll be disabled children all around the country who are in hospital having treatments for a variety of conditions or who are at home for their mental health and these sorts of things who should be having that free school meal voucher or a packed lunch. The school can choose what they want to do and it says that in the legislation. It's got to be what works best for the school and how well their systems are, but it can be free school, no voucher or a packed lunch, but they're not allowed to just keep it. So how many children and young people all around the country are off? Very few people know that they're actually, that our young people are entitled to this when they're not physically in school, but it's during term time. I think there's, unfortunately, from what I'm hearing, what I know from what I'm hearing from parent carers in, you know, like in places like London, not just in Sheffield, That this seems to be quite a common practice, particularly with SEN schools or with SEN students. However, they've updated it and repaid it to my son, which is brilliant. And that, you know, didn't particularly help us financially in any way because of the debt I've already incurred. What it did do was go on my credit card to take off some of the debts, which is good. There was, there was no argument from them once it reached the head, the heads of the services. They realized that wrong had been done to him. Um, with regard to his education, I had that all looked into. And the, head of education, Andrew Jones. Phone and we agreed verbally on an amount to compensate my son for his loss of education If I wasn't happy with the outcome of that, I could have escalated it to the local government ombudsman. But, but by now, Scott, I've read so many cases from the local government ombudsman, so many outcomes. And I know. You can get awarded for your young person for loss of education per term and, the other things that they reward it for. So it's the time at the time that you've not had education and it's then for the fact that you've had to raise the matter at all. The loss of any respite to the parent, but also any hurt cause to the young person as well. Cause it does, you know, just being totally forgotten about is horrible, especially someone at this age is 12. You know, 12 year old kid just left the drift for a whole year with no one caring whether he's know, And it did hurt his feelings.

Scott Whitney: 24:30

Have the school ever contacted you as a parent or your son about the well being of you or your son?

Jen Dunstan: 24:41

When we've had the meetings, there's always, there had been most of them anyway until the last few. There'd always been a school representative there who would always say, how are you and how's he doing? With the fact that my son was off of school because of trauma, because, because of the actions of some of the staff at school. And I must stress, not his class teachers, it's the behavioral team that was what caused the issue. His class teachers are lovely people and the TAs are lovely people. It's just not the right setting for him. other, other than these monthly meetings, there's been no other contact with school because he is not to have contact, he's not to be exposed to staff froms school on the advice of the CAMHS consultants at, both at the hospital and the community CAMHS team because they don't want to push him back into a situation where he goes off kilter to trigger him and for him to be destabilised emotionally and back in the hospital with mental health. Issues again. So, on the one hand, you can understand why there maybe hasn't been much contact from school. On the other, you can see the huge lack of contact there's been. You know, at these, at these monthly meetings, um, there was lip service paid. Oh, we'll send work home, you can print off, we'll talk to this class teacher and then we'll get them to email stuff. And we'll get them to let you know. And I'd say, oh, can you let me know what topics they're covering this term and I'll try and make sure he's doing, you know, similar stuff. Oh, yes, yes, we'll do that. We'll do that. All this lip service at these meetings, but then outside of these monthly one hour multi agency meetings, nothing. What there hasn't been from school and what there needs to be from school is an apology. If the head of education and the head of children's services. Apologizing to my son and the head of education has sent a written apology to my son Scott as well as writing to me It's written one directly to my son Which is very important because because my son needs to know that there are adults who actually care whether he's being supported or not Who do actually care when children are being let down, and young people are being let down. And where the law isn't being followed, because it wasn't, in more than one way.

Scott Whitney: 27:06

And has your son, or have you read that letter to your son, or has your son read that letter yet? Or is it something you're saving for when he's a little older?

Jen Dunstan: 27:17

It was sent by email, we got the email just this week. I asked my son if he wanted to read it, at the moment he just doesn't want to, and that's okay. At any point in the future, when he wants to look at any of the paper to do with any of this, there'd be a box with it on them. Yeah, simple as that.

Scott Whitney: 27:37

I think that's important because obviously it's a very traumatic time for your son, and When he's older and he wants to look back, if he wants to look back, he's got that, he's got that option because, if you take away choice from someone, you know, that's where wrong things start to creep in. so he's got that, he's got that choice

Jen Dunstan: 28:05

always. He does. So he, he does. I mean, kind of a chip off the old block when it comes to being strong minded and having a strong sense of right or wrong. We are very similar like that. My oldest child also is the same. We're very like... Straight down the line. It's, it's black or it's white. It's never grey. There's no grey. so yeah, he, he will do what he wants to do and I'm not ever going to force him. No, you must, the guy's written to you. You must read it. You must read it. No, no, what's that going to do? If he wants to read the apology because those adults have done wrong to him and let him down, he can. If he doesn't want to read the apology because he doesn't want to, because, because he's had. Going in that sort of direction and thinking about all that stuff is going to upset him emotionally and mentally. That's also fine. And really that's the most important thing. Because throughout all of this, the seam that's run through all of this is supporting my son's emotional and mental well being. and physical well being. That's, that's what's, that's what it's had to be. Yeah. So,

Scott Whitney: 29:21

If we can look at kind of three. types of people in this. So what people have shown complete neglect, what people have been really good and really supportive, because it sounds like there's a combination of both, and what people could have stopped it from going into the situation it has done.

Jen Dunstan: 29:49

So the people that have been neglectful have been the school administrators. As in the headteacher and safeguarding officer and the behavioral team. The people who initially let us down in the NHS were the people that did the assessment from the hospital camps. But when my son was admitted to hospital, I made sure that those particular staff members then weren't allowed any interaction with him. And... The CAMHS hospital team and the CAMHS consultant in hospital were incredible. The staff in the hospital and support staff were incredible with him. As I say, he was in there for two months, you know, everybody knew him on that ward. by the end of the two month period, all the staff from cleaners up to consultant level. I'm quite right too. There is a celebrity these days. the social worker from the Children with Disabilities team, of which there's been three throughout this entire, this entire case, have all been amazing. The Children with Disabilities team I would recommend to anyone. If you're a parent carer and things aren't being done properly. for your child, if they're really struggling and you're, and if you're struggling as a parent that you can't maybe support all of your child's needs by yourself, that there needs to be an extra pair of hands, you know, don't be afraid to reach out to them. They are part of social services. They're a different section of social services to the ones who sort of, making sure that people are putting their weight as a parent, you know, and you can only get the, in Sheffield anyway, you can only get a PA funded from the local authority by liaising with this section of social services because it's them who funds it. It's them who puts it in place, the care company, they've been amazing. So my son has two regular PAs now, they're lovely young chaps who. Get on well with my son, and we'll talk about Marvel or, old fashioned iPods or whatever it may be, whatever's on his mind this week. And go on days out and stuff so that I can get a little bit of rest, which is great. The head of children's services, the education counsellor and the head of education, all have been fantastic as soon as it was actually brought to their attention what was happening. But people who work below them in the local authority, within the local authority, who aren't part of social services but are part of the SEND department, along with Heritage Park School administration team, are all as complicit as each other on a level, Scott, to be honest. They're all as complicit as each other. They knew my son wasn't being supported. They still carried on attending these monthly meetings. They lied saying, Oh, it's so hard to find an education company that does these sorts of things. They lied because they already were employing the education company that does, um, the one to one tutoring within people's homes. So there's been a lot of failings and obviously again, the school, neglected him by attempting to retain. His pupil placement fund and his free school meals monies. And they're in a lot of trouble. There is an investigation into the school. There's a LADO investigation. That stands for L A D O. and I can't remember exactly what it stands for. It's, it's a multi agency investigation into, into the school basically, involving, you know, social services, police or whoever has to involve the education department heads and so on. It's a local authority one. So it's the LA investigating the LA, but then Ofsted it and things like that as well. So it doesn't stay behind closed doors and the social service, social services, social workers rep will be present at any of those meetings as well. and no doubt the school to try and explain away, you know, why they repeatedly restrained this young man to the point where he was terribly traumatized instead of admitting they couldn't support his needs, which is what they should have done. So, at the end of it, at the beginning of it all, all of this could have been stopped. All of this could have been prevented if the school had been honest and said, yes, we're an SEN school. Yes, we support some young people with some quite complex needs and behavioral issues. However, this child's too complex. We can't do it. I don't think anyone would have looked badly on them. I wouldn't have looked badly on them. It would have obviously been hard to take. But not as hard to take as sitting by his bedside for two months. And that's what it boils down

Scott Whitney: 34:35

to. And it's a big ripple effect from that. Everything's expanded out. It's put a huge mountain in front of you which you've had to climb and research and... Because a lot of the research you did was instead of sleep, so you are, you're having to put, go through all of this and make sure you are supporting your son on, uh, on, on. How long would you say you were sleeping a night?

Jen Dunstan: 35:10

Well, ordinarily I sleep about five hours a night. Literally the only thing I've got in common with Margaret Thatcher, actually. Sleeping on five hours a night. So less than that. Less than five hours a night. When I was, on days when I was doing the research, staying up till about three, two, three in the morning, and then getting up again six. So, what's that, four? Between three and four hours a night. maximum.

Scott Whitney: 35:36

I think anyone listening will know that you're not going to be functioning that at the best you can on that little sleep. I would struggle to function on five hours sleep. to be on even less than that would, would really debilitate me. I'm sure it debilitated yourself at times, but I guess it was. Not a case of wanting to do it, but having to do it. Yeah,

Jen Dunstan: 36:08

that's it. You choice. And as someone who's, um, not only a parent, parent carer, but just a grown adult woman who, who should be able to exist relatively freely, you know, I'm, I have my own disabilities that I have to deal with. I live with chronic pain, and I... Shouldn't have, been put through these things. I don't expect to be hop, skipping, jumping down the street like I'm in some sort of fairytale Disney movie. But there's got to be a nice middle ground, surely. For at least some of the time. In what's now, like, by now and going on for an 18 month period. Where I am like, get me out of this house. Or I will be, I'll be the one. I'll be the one being hospitalized because I've been on this, whereas my son went on to like a high alert kind of state. I'm like, I'm still really edgy. I'm still jumpy. I'm still sleeping only very lightly. So if there's the slightest sound, I'm like this and, just can zonk out now and then during the day. The PA's come round. I tell you what, I used to think, Oh, I'll struggle, you know, if, if the PA takes him out, I'll struggle to get some sleep. And at first I would, I was, I was like kind of edgy and nervous and stuff because he's getting to know the team and I'm getting to know them and everything as well. And I'm wondering if it's all going to work, but now the PA has been in place for a few months with him. And, they will, they'll say, right, we're going to take them out to the shopping centre and off they go with their shopping bag and their list of things to do. And I'm like, okay guys, and I'm straight upstairs and I'm, I could sleep stood up, honestly. I could sleep standing up, lying down, upside down, No problem. If you said to me now, right? Oh, oh yeah, we're going to take Rio for a couple of hours to, you know, PAs, we'll take him for a couple of hours. Yeah, no problem. I won't be sat here going, Oh, I wish I could fall asleep. It's like I've now gotten into the, I'm so tired. I can, I can just, just turn off, but it's, but it's also done in a, it's done in a good way. And, um, I think it's now it's got like getting my house sorted out now that we've been at six hours today with another pair of hands helping while, while there was a PA with my son. Rearranging his room, sorting through things and I've already gone through stuff in my living room because my living room currently, I've got everything that you'd find in an essay and classroom. From, like, I had a swinging hammock chair for a bit of that sensory proprioception stuff. a big peanut gym ball. Loads and loads of books. All the pens, paper, craft stuff, scissors. Beanbag chairs. I had a table, like a picnic table, for him to do his, do his workout. his printer. All of this stuff, stuff that you'd, that you need for in, for a school. His, his, what my, what my. living spaces turned into. So now to slowly get our home back to looking and feeling like a home rather than a school slash home. Is, is, that's what I'm doing now, for the, for the time being. and it'll not happen overnight, but that's okay, because it took, you know, nearly 18 months to get into this point. It might take 18 months to get to where people walk in and they don't go, What the heck's going on in here? But, you know, that's all right. It's okay. The main thing is... He's safe, he's happy, he's well supported. I will at some point need to take some time for me, but I don't know when that's going to be. That's okay, as well. Tell you what I'm dying to do, by the way. Do you like swimming? Ah. I don't know the last time I went. No,

Scott Whitney: 40:01

no. Ah. Do you know what, I've, I've not been submerged in water. So I'm talking about swimming or a bath. Since about May 2020., Because I've not had the facilities to do it. I went three years with having like six showers and the rest was just bed baths. So now somewhere I can get in a shower. It's amazing. When I was in temporary accommodation in the hotel, I was having two showers a day. Nice. And I'm talking about long showers as well.

Jen Dunstan: 40:46

I do in hotels as well. Turn it up hot.

Scott Whitney: 40:50

Exactly. And, my carers are saying, right, well, we're gonna, you know, we, we need to do this, this and this. Look, just leave me here. I'm fine. but yeah, now, now it's on my wall with me. So I'm, I'm down to one shower a day.

Jen Dunstan: 41:06

Yeah. At least you're not got to worry about them shampoo caps. No, don't have to worry about that. Yeah, it's nice and short, isn't

Scott Whitney: 41:13

it? Yeah. It is, it is, but that's only a very recent cut. I like my hair short so I don't have to worry about whether I've got a bit sticking up here or there or anything like that and it's just nice and, nice and simple, so. So is it swimming? Is that what you want

Jen Dunstan: 41:31

to do? I'm, I'm a dream of it. I mean, it's such a long time. It's been a few years since I've, I have, I have had little, little baths. What we, what we do here is, twice a week we have a bath where it's shared bath water. So one of us goes first, basically. So I have a bath bowl and then one of us goes first, toss a coin or whatever. Me or he goes first. My son's hair's down to his waist. He can't wash it himself so I wash his hair for him and then obviously has a privacy for this rest of his stuff because he's 12 grown lad and But as far as swimming goes, It's years since I've been in a pool, but I love that feeling of you being held, sort of, but you're not, I really like it when you, when you swim and your head kind of goes under the water as well and you can't, you just can't hear, you can kind of just hear like your own heartbeat. Yeah. And just none of the world's nonsense and you could shut your eyes, you could be anywhere. It's like

Scott Whitney: 42:33

a little echo you can hear and you can kind of Sense there's noise, but you can't make out what

Jen Dunstan: 42:40

anything is. It's like nothing matters for that little bit of time. Nothing matters. Just for a little bit. so I'd like to, I'd like to be able to experience that. And I'm going to, that's on my, like, to do list of stuff to do for me. Really at the top of it. Or, or, or down, further down it, I suppose, whichever way up you're holding the list. I'd really love to have a spa day, but I think that's probably going to be quite some time. but there's a lovely spa in Sheffield where it was like a Turkish bath in Victorian times. And I read in the newspaper that it's, they're reopening it after refurbishment and stuff. So it's got original tiles on the walls from Victorian era and things like that. Yeah, get some cucumbers on my eyes and...

Scott Whitney: 43:31

What's, what's next in store?

Jen Dunstan: 43:34

Getting the home looking properly like a home and a little bit of moving furniture around because... A little puppy dog was born a few weeks ago who is going to be coming home to us at the beginning of December and she will be being trained up to be an autism assistance dog. So this is my next project. My son's too old to receive an autism assistance dog from the local charities or charities in our region because for some reason they have a cutoff age of eight. And fair enough, they've got their rules and they've got them for whatever reasons they've got them and I respect that. That doesn't help my son, however. So, it's a case of, like with the education, I guess, Scott, where it's not being provided. As his parent carer, I've got to look at how do I then facilitate that? So, the way I guess I facilitate it is get a dog of a good pedigree, of an appropriate breed. and train them myself. So I've got, so I've got some training courses to go on and I've got some manuals to read and, let's see how far down the road we can get with this. Yeah, so I'm gonna have a new member of the family in that respect, but as excitingly, a bit more, and a bit more excitingly, by quite a way. I'm going to become a grandma in December. So we're having a, a human addition to the family. The next generation of Dunstan's, although I don't know what name the baby's having, but the next generation anyway. And, I already know it's going to be a little boy. So Rio's going to be an uncle and I'm going to be a nanny Jen. And I could not be more excited. You know, when you think. Your heart can't possibly love more. It's like fireworks, volcanoes. It's just brilliant. It's an amazing, amazing feeling. It was, it feels better than when I got told I was going to be a big sister. It feels better than when I found out I was going to be a parent myself. And both of those were really extremely brilliant. This is just different and better and amazing. And I'm so proud of my daughter. I can see already she's It's going to be an amazing month. That's my plans.

Scott Whitney: 46:09

Awesome. Congratulations. And obviously when this, uh, this bonus episode goes out, um, the dog will be here and you will be, uh, be Nanny Jen. So, uh, so if we might have Some if you post any images on any social medias, some links to those as well. So finally, then, if someone's in a situation similar to yours, what advice would you give them?

Jen Dunstan: 46:44

take a deep breath. I know it's hard. And I know you're exhausted. The law is on your side. And it exists for a reason. It has to be followed. People, whether they're a headteacher or a local counsellor, cannot pick and choose when to follow the law, okay? You don't need to get a solicitor. You don't need to spend money on an issue such as this that we've been through. Because the local government ombudsman can support you if you don't get an adequate response from your local authority and your school administrators, okay? And it might seem like there's mountains and mountains of work to do. But with regards to the free school meals issue for one, in isolation, all the info you need is on the Contact Charity website, which Scott's going to put some links about. With regards to your child not receiving any, any education at all, but still being on a school roll, that's a legal issue. So, contact, like I did. the head teacher but tag in your education counsellor. Every local council's got one, so if you're in Sheffield, currently it's Dawn Dale, by the next quarter or the next, uh, election period it'll be someone else, you know, so check who your current education counsellor is, tag them in the email, tag your local MP. CC in the education ministers for parliament. All of these people are paid a pretty penny to ensure that your young people get what they're entitled to hold them to account and keep your email communications brief, polite, but also firm. If your child's been one week, one month or one year without education or the free school meals that they're entitled to, someone is at fault and it's not you, okay? And, join the rest of us parent carers on Twitter and other social medias and, um, just remember that although we are by ourselves in our homes a lot of the time, we're not alone and there's a difference. I'm by myself in my house right now, but I'm not alone. But if you'd have asked me this a year ago, I'd have probably been like, I'm alone. But we're not. Okay, so just hang in there. Keep going. Keep moving forward little by little. It will be okay. It's not going to be easy, but it will be okay.

Scott Whitney: 49:15

Thank you. So, it's been awesome having you on. It's been really, really good. it's been, excellent to hear your story and listen to your story. Although, I wish... Right at the beginning, you didn't have to go through this, and Rio didn't have to go through this, and it was just stopped at the point it should have been stopped at. so I'm sure, people listening, will, Resonate with a lot of what you said, and there'll be a lot of learns from this as well. like I said, thank you so much for coming on. And So thank you all very much. And we'll be back in two weeks. Thank you, Jen.

Jen Dunstan: 50:01

Thank you. Thanks for having me.

50:03

Thank you for listening and I hope that this episode has managed to help you go one way or another. Whether it be helping you yourself or helping you understand what friends may be going through. Feel free to share this episode with friends, family, repost it on your social medias. And obviously if you really enjoyed it, please give us a thumbs up and erase it. It all helps. We'll be back in two weeks. We'll see you then.