[00:00:00] Hello and welcome to the Autism Mums podcast. I'm Victoria. And I'm Natalie. We are two sisters raising autistic children who know the joy, the challenges, and the everyday moments. This is a supportive space for honest conversations, practical tips, shared strength and expert advice, whether you are celebrating a win.

Surviving a meltdown or just trying to make it through the day. We are right here with you. Join us as we share the ups, the downs, and everything in between parenting autistic children.

Victoria Bennion: There are lots of terms that you might have come across like IEPs and EHCPs. Today we're going to talk about what they are, why you might need one, specifically, why you might need an EHCP, because that's our experience. And if you do think you need one for your child, how do you go about getting one?

And we'll also talk about our different experiences of going through the [00:01:00] process. So let's start with what is an IEP now, honestly, I hadn't actually come across this, but according to Google, an IEP is for children with disabilities to ensure they receive free and appropriate special education. It seems to refer to more the United States and Canada, where it's a more common term.

What I have come across, and I know you have come across too, Natalie, is EHCPs. So that's an education, health, and care plan.

Natalie Tealdi: Yes, that's correct.

So this is something that is put in place for those children who, so you don't need to have a diagnosis for this, but it's when special needs are likely, isn't it?

Victoria Bennion: I think usually a child is going through the diagnosis process. Perhaps not always. That was my experience. We were just on the pathway when we started the process. It's [00:02:00] for children and young people, it's in place once you have one until they're 25. To ensure that they get the support that they need

Natalie Tealdi: So it provides guidelines that. The school need to regularly review,

Victoria Bennion: it's a legal document that the local authority is legally required to provide the support that's outlined in the plan. So it's really important. In fact, if your child is going through a diagnosis, it's the EHCP that's going to get them the support they need, not the diagnosis.

Natalie Tealdi: Yeah,

Victoria Bennion: It's really important.

In my experience, schools are not always very keen to just jump right in and start to apply for an EHCP.

Natalie Tealdi: That's also my experience. I think there's a lot of paperwork involved.

Victoria Bennion: yeah.

Natalie Tealdi: It's a lot of work and teachers already have a lot of work.

Victoria Bennion: You can expect to be fobbed off if it's coming from you that one is needed. So for us. I think my son, so it was around the end of year [00:03:00] three when his. Difficulties accessing school. Were just becoming more and more obvious. And somebody had mentioned EHCP to me and I didn't really know what it meant.

And I mentioned it to his teacher who was also the senco. And I said, does he need an EHCP? And she said, no, not every child, even if they have a diagnosis, needs an EHCP. It might just be we can make adjustments in class. So I said, okay. And then. Everything was just deteriorating at such a rate at school that it wasn't long before they said to me, actually maybe we should carry out a needs assessment for an EHCP. And this was going with us hand in hand. With the referral process. By this point, he was on the waiting list to see the core diagnostic team.

In terms of what that looked like. The school had to put together quite a lengthy document with evidence as to why he needed to be assessed.[00:04:00]

There was a parental part, I remember having to write and then. Once the council receive that from the school saying that you do not have to do it through the school, say the school refuse, or you can decide to do it yourself. You can do a parental EHCP request to the council

Once they receive it, they have six weeks to let you know if they are going to carry out the needs assessment. It's a very strict timeline that they have to adhere to. So a lot of eh, HCPs are rejected at that stage, which is really shocking as I know a few parents that's happened to, and it's so clear that their child needs support. But I really think it comes down to money and resources rather than the actual,

Natalie Tealdi: I think you're right. And I remember being told that most get rejected at that first point, so we had really low hopes. We were actually quite surprised when it did [00:05:00] get accepted, so

Victoria Bennion: Yeah,

Natalie Tealdi: I think it is quite common

for the first one to be rejected.

Victoria Bennion: that is your first hurdle. And so if it is rejected, you have the right to appeal

Natalie Tealdi: It's a specific period, isn't it, for appeal,

Victoria Bennion: Yeah, it's all very structured. You need to know the dates by which you can appeal, by which different things have to take place by, once the assessment is agreed, there's a window by which time they have to gather the information, so your child might see an educational psychologist or different health and social care professionals and it's seven to 12 weeks.

Is that window and then a draft plan should be produced between 13 to 16 weeks, and then this should be finalized between 17 to 20 weeks. So it takes a really long time, and that is if it is going all according to plan and not being [00:06:00] held up at any point. I remember that our timeline did slip slightly. I remember chasing the council for the draft plan

Natalie Tealdi: Yes. That's just what I was gonna mention actually. I remember a lot of chasing it was like I was managing the process really in some ways. And you do need input from professionals if you can get them. 'cause it helps to make the case stronger. But I remember chasing up, have you had this from this person?

Have you had this from this person? Because I don't think you can just rely on it to just get done.

Unfortunately and probably due to workload, but you know, if we kind of have, it is part of the fighting process. You need to be on it.

Victoria Bennion: Yes, you do. You really need to be aware of those dates So if there's anything that you need to provide or that you need to be chasing people up because you don't want them to have any reason to decline it or for you not to be able to appeal it if you want to because you missed the dates, my son had one assessment as part of the process, and that was with an [00:07:00] educational psychologist who was coming to school. And this was a time when he really was struggling to access school. He was going in for, it was break and lunchtime, and often it would involve me sitting with him in the library for that.

Intermediate bit where he was supposed to be in the classroom because he was just finding it too hard. And she came in, I think it must have been the break time and we were supposed to be meeting in the office reception and he just wouldn't engage with her. She brought games to play, so that she could observe.

And I remember at one point him managing to get outta the office. Think he reached up and pressed the button and he was running up and down outside

Natalie Tealdi: really not coping.

Victoria Bennion: Really not coping. He just, at that point, he really didn't want to be in the school buildings. It was very very hard.

There'd been a lot of bribery, to even get him to be there when he was so [00:08:00] anxious. And then I remember having to call you to come and collect him so that I could do the meeting with her and his teacher because he just, there was no way he was coming in the school. So you picked him up And then I went in.

To the meeting, and this is what really shocked me. So after all that display, you could see how much he was struggling. He couldn't make eye contact. His teacher was very supportive, very understanding, and she said to the educational psychologist, if he's in the classroom, he's like a rabbit in headlights.

He's terrified. We made reference to the fact, so he's in year four by this point, and he was in the middle school system, . that ends at the end of year four, and the next school is a big middle school. So this first school that he was at was probably 150 pupils in total, [00:09:00] and the middle school I think was around 750.

So you can imagine if a child can't even access a tiny school, how do you expect them to even set foot in this bigger school? I can't remember what I said to her, but it was something along those lines and she shut me down really sharply and made it very clear that she would be put in, in the report that he should go to a mainstream middle school, even after what the teacher said.

Even I believe at this point he'd had. At least one appointment with a clinical psychologist, because he was referred through the CAMHS route, it, it took a bit of a different, order of the appointment. So the first person that we saw was a clinical psychologist, and she had even put in there his inability to cope in a mainstream school and.

Recommended a different environment for him and it was all ignored in the [00:10:00] report. And I felt so disheartened after that because I remember thinking, what is the point? What is the point of going for any EHCP going through all this, putting him through this, and she's just still gonna recommend mainstream with some adjustments, most likely.

And

Natalie Tealdi: when you can hardly get him in the door in the

first place,

it just doesn't make sense.

Victoria Bennion: I mean it's not really going to school, is it going in for break time and lunchtime and some of that, you know, he couldn't engage with people during that time. It was very stressful. So it came back. They went all through the process and it came back a naming mainstream. And you know, a lot of that I'm sure was based on the educational psychologist report. We said we would appeal. Again, as you said earlier, you've got certain dates to do that, so we got everything in motion and you need to provide new evidence to support your appeal. And ours was that he just received his autism [00:11:00] diagnosis at that time, and it was like a game of chess. With the local authority. I told them he, at this point, towards the end, he had one more appointment, one more appointment to confirm his diagnosis, and I asked if they could wait to finalize the EHCP until we had that, and they said that. They would try, but it was going to panel and it would be within two to four weeks.

And the pediatricians were really good. I told them that we were on this timeframe and we were so anxious about school provision from the September, because we're in the summer term by this point, so they fitted an appointment in, they told me that he would be getting a diagnosis, but it had to be with another.

Doctor present to do the diagnosis. they did it. We got the diagnosis and it was the next day or something, the EHCP was all finalized saying mainstream. So when we appealed, our new evidence was he does have an autism diagnosis. I know, that technically don't have to have a [00:12:00] diagnosis of any

for us it gave me a reason.

Yeah, I, I think unfortunately it does and it did give me that reason to say we are appealing.

Also, although I believe that if a child is on the pathway, they should be treated as if they have a diagnosis. I'm not sure that that is always the case. So, that's the route that we did.

We had a date for tribunal. I did agree to mediation because I wasn't sure if I would be looking really difficult if I didn't. And then I remember having the date and then the council delaying the date saying that they weren't free. And also he was feeling really, really desperate in this time because all my son's friends were talking about which middle school they were going to.

And for a child who's extremely anxious anyway, he's got

Natalie Tealdi: and you couldn't reassure him either.

Victoria Bennion: in September. And no, I couldn't reassure him. I couldn't tell him, oh, it'll be okay. This is what's because I didn't know so. [00:13:00] I spoke to the head teacher of the first school who was very supportive and she decided to call a meeting with the middle school and the council before we got to the end of term.

So now we're talking, we are in July, the month that he is due to leave school and have no education provision in place and. I remember them sitting there looking at it, and I was just horrified that the mainstream middle school, which my daughter was attending at the time, had said that they could meet his needs when they were asked.

And actually when they came into the room, the SENDCO from the school, she listened to the head teacher of the first school of what a day looked like for him, and she said, no, we can't meet needs. We don't even have. A TA in most of the classes, there would be no support. We have one class where

we put children that have additional needs where there's an extra ta we could put him there, but realistically, that's not gonna be enough. We can't change the size of our [00:14:00] school if he can't come into this first school because of the size of it, there's no way you are even gonna get him on the property. So the plan there from the local authority at the time was to go to panel and ask for funding for. Alternative provision and some tutoring. And I thought, okay, that's all right. And they gave me the date of when that was gonna be. It was about, it's always seems to be two weeks time. So I think it was two weeks time.

And I didn't hear. And I didn't hear, and I was thinking, did it go through? So I remember chasing, phoning, and chasing, and we had a provision lead at the time for the EHCP. to me, no, this hasn't gone to panel. Uh, It's not going to panel. He has an EHCP, which. Contains funding and he got upper band B, which I think is the most that you can get at a mainstream school.

If the middle school want to provide, alternative provision that's for them to find out of the money, [00:15:00] which as you and I know, will not go anywhere near funding the alternative provision or tutoring.

I had to go back to the middle school and say, this is what the council had said. Again, it's like you pushing all the time.

It was so many phone calls, so many phone calls,

Natalie Tealdi: and caring for your son

who is highly anxious.

Victoria Bennion: I was trying to juggle that with work and

And caring for him who's really, really anxious and really struggling. And, I emailed the Senco and updated her and everything and she rang me and. We were just so lucky at this point that she said she had a relationship with a specialist provision, which I was aware of, and they were opening a new site At that point, I don't think it was clear what that site was gonna be for alternative provision or just an extension of the specialist school, and she said if I could get there on Monday.

To have a look around the head of the school would see me I was a very [00:16:00] mix of emotions. 'cause this, I know this is what, where he needs to be one of the Autism advisors who came into the school under the Tads Outreach. She'd recommended that this school would be ideal for my son, but his EHCP said mainstream school. So I was like, well, how does this even How would this even work? How do I, I dunno how to navigate this. But anyway, we went and we looked around and the head teacher, she asked me a lot of questions because it was a lot about how he would fit into the current cohort. And she said at the end, after observing him, we'd be really happy to offer him a place.

And I said to her, but here's EHCP says mainstream. How, How, what is this gonna happen? she said, don't worry, we're going to email the council and. You emailed them as well, so I did that and the middle school also emailed them. So it was all kind of, you know, this place is available, he can have it. You need to fund. It was the gist, I believe. [00:17:00] So. I spoke to our provision lead and she was not happy. She was definitely not happy. She said to me, this is not how it works. You know, Parents and schools do not tell the council I. Where a child is going to be placed. He can't just have the place, you know, it's going to have to go out to, we are gonna have to go out to the other specialist schools.

So I guess when the middle school emailed them, they said they couldn't meet need. That must have been, a conversation. And we are now, in the

summer holidays.

Natalie Tealdi: You still don't know what's happening in September

Victoria Bennion: All the kids have left. No, all we, we were. Do you know, I think it wasn't quite the summer holidays.

We were like a couple of days off. We weren't far off. And so I just, I wasn't sure what else I could do, but I didn't want him to lose his place at a school that could clearly meet his needs, was exactly where everyone wanted to be. And yet it didn't have it on his EHCP that it could be funded.

so

there was one thing, and it was [00:18:00] because you

had done this,

Natalie Tealdi: were going through this at a very similar time, so yeah, I think we were sort of weeks apart in the process, weren't we?

Victoria Bennion: Yeah.

And you'd written to your mp, but I'll let you tell that in a minute. So I thought we have a different MP 'cause we live in slightly different

And um, yeah. So I wrote to the MP and I set it all out, all the twos and throwings with the council, the diagnosis of how we wasn't gonna have any place to go to.

And I got the acknowledgement and that they would take it up with the local authority. And soon after we had a letter from the head of Children's Services it, so it was sent to the mp and I guess I was copied in It was just saying we completely agree this, we can see that this, . this is all gonna be resolved. Basically it's like this is going to panel on the 17th of August. I remember it was the 17th of August 'cause that's my birthday, but it's, this is going to panel, [00:19:00] we are expecting this to go through. Nothing like my conversations with the provision lead where she was obviously very crossed at the whole thing and, and, pushing back and, you know, we expect this all to be fine and tribunal won't be needed.

Everything. Remember getting the phone call on the 17th just to say it had been approved.

I don't think the Provision Lead was very happy. She said This rarely happens, that I get to deliver this news. But Specialist Place has been agreed, but only for two years that he can have it for two years. That's how we got there. So we then were able to cancel the need for the tribunal. But that was the process. And that was months and months and months.

But we did get there. But how much, like you were

saying, how much you have to drive it

Natalie Tealdi: Yes.

And it's exhausting, isn't it's bringing back a later horrible memory. Sleepless nights and you know, well, I had a young baby at the time anyway, so. Up late at night writing emails and chasing people and yeah, [00:20:00] attending these daunting meetings with professionals. I think there were,

Victoria Bennion: Did you have to go to tribunal? Were you at that point

or, or was specialists named

Natalie Tealdi: specialist was not named, mainstream, was named so my son was outside for the best part of two, two years in mainstream

school. I mean.

I, I mean, literally outside on the field for

most of the day, every day for two years,

Victoria Bennion: Playing

in the mud kitchen. I

remember

Natalie Tealdi: even

when it was freezing wet, you know, he just could not cope inside.

They did, have a little desk for him, which was just outside the toilets, which, he would would do a tiny bit of learning slash play with a ta. She was actually the became his one-to-one because it was necessary, which then obviously put a strain on the rest of the class. But that is what he needed.

Yeah, he was outside just really not coping. But we had [00:21:00] mainstream named as well.

And it was clearly not going to work. Then he was actually suspended twice from school as well.

You know, he was five years old. I dunno how you can suspend a 5-year-old, but there we go.

He was on shortened days anyway, so he started late, came home early. Home was difficult as well 'cause he wasn't coping at home either. There were other changes going on in the home. , he just wasn't coping at all. I remember lots of meetings, and then a alternative provision was also talked about, and we did try that but it was quite a fight to get alternative provision and then it was quite clear that that wasn't gonna be the right place. , And I'd started looking at specialist schools. I'd visited some, but still they were saying mainstream. And that's when I wrote to the mp. 'cause I was just desperate. 'cause I just could see this was not gonna work.

He was gonna end up being expelled, you know? [00:22:00] Which is just. wrong In my view, I can expel someone who has,

you know, additional

needs.

Victoria Bennion: Did you have

a diagnosis at that

point or were, you on the pathway?

Natalie Tealdi: we were on the waiting list. We had a letter to say it was likely to be diagnosed because I'd had a lot of contact with a behavioral nurse. So she was able to get a letter written to try and help our case

It was a lot of phone calls, a lot of chasing, and in the end, his diagnosis came just at the point we were at the EHCP. You know the last bit?

Victoria Bennion: Yeah.

Natalie Tealdi: And I don't think it quite coincided. 'cause we did go for appeal. I I can't remember how the dates kind of lined up, but I remember saying to the council, he is not going back to that school in September.

He will not cope. And it was then that they, they, I felt they began to sort of listen. To me and like, okay. And it was the day [00:23:00] before the summer holidays that we found out he was going to be in a specialist school, which was the one we had chosen. We really wanted, because there was a choice between two.

There was one that was gonna be an hour drive away, and I knew he wouldn't be able to get in a taxi. So that would mean me driving

an hour.

And how old was he

Victoria Bennion: at this point, six?

Natalie Tealdi: He was just six. They were expecting him to get in a taxi and I really wasn't comfortable with him getting in

a

taxi for an

hour.

each way. It would've been so, So two hours a day

on top of a school day when he is not even coping,

so luckily we got a specialist school we wanted, which was closer and I I drive him there. But yeah, day before some holidays we found out and I did get the MP involved and he was He was so good. We were very lucky,

Victoria Bennion: It's a lengthy process just to sum up, but you can get there, but you just have to be prepared that it is quite draining and you shouldn't have to, but [00:24:00] you need

to be quite on it

Natalie Tealdi: There are people that can help, organizations that you can speak to.

Victoria Bennion: Absolutely. I go to a support group once a month, and the knowledge in that group and just the support was really, really helpful to me. And also SENDIAS I had quite good experience with them. I remember calling them and asking them at different points, what should I do? And they were really, really good. If you are going it alone, or even if you just want to know your rights, what you are entitled to the IPSEA website is a really good resource and I've looked on that a lot of times, and they have advice about doing a parental EHCP request, I believe there's also template to letters that you can use and all sorts. So if we

link

to those in the

show notes.

Natalie Tealdi: Yeah, absolutely.

Yeah. And it can be done, that's the

thing.

Victoria Bennion: it

can be done. Yeah, so [00:25:00] definitely do it because you do hear so many stories of like they're all just being declined. And I did hear that before we went for it. And whilst that's true, whilst a lot will be, then you just

got a fight. And

I remember, no, I remember other parents that I was talking to at the time said.

Their feeling was that the local authority didn't take you seriously until actually had a tribunal date. They weren't really gonna focus their mind. They're just gonna try and fob you off until that, which is sad, but just, it's sometimes helpful to know that, to know that, . And for both of us getting that has been just life changing for both the boys because now they are in, placements that can meet their needs. And that's massive and I'm very grateful for that.

Natalie Tealdi: , my son's a completely different person.

Victoria Bennion: So anyone who is at the beginning of the journey wondering what to do, keep [00:26:00] fighting until you get what you need.

There is lots of support available.

Thanks for joining us today on the Autism Mums Podcast. We hope you have found a little support, a little solidarity, and a reminder that you are not in this alone. If you enjoyed the episode, we'd love it if you'd follow the show and share it with another parent or carer who might need to hear it. And if you've got a story or a moment you'd like to share, we'd love to hear from you at www.theautismmums.com

Until next time. Take care.