It Shouldn’t Be This Hard: Advocating Through the System

In this week’s episode of The Autism Mums Podcast, we’re talking about something that so many families raising autistic children will recognise - the exhausting and often disheartening process of dealing with the local authority.

This episode is an honest look at how hard it can be to get what your child needs and how important it is to stay organised, persistent and strong.

Key Takeaways

Keeping on top of it all: Parents and carers are often left chasing reports, updates, and decisions just to keep things moving.

You Can’t Assume Progress is Happening (unfortunately): If you're not following up, you're at risk of falling off the radar.

Options for Your Child: Parents are frequently kept in the dark about available options regarding alternative provision and specialist schools

Travel Expectations Can Be Unrealistic: Specialist schools may be far from home, making logistics overwhelming.

Change is Needed: Better communication, transparency and supportive systems would ease the burden on both families and staff.

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Transcript

[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: In

today's episode, we're gonna talk about the challenges that so many families

face when navigating support through the local authority for their children. We

are gonna talk about the EHCP delays to the mystery surrounding alternative

provision and specialist schools.

If you've ever felt like you're fighting an uphill battle just

to get your child what they need, you're not alone. We are sharing our own [00:01:00] experiences, frustrations, and the lessons

we've learned.

There's much to say. Okay, you go.

Natalie Tealdi: I was

having a think about when we have had to deal with the local authority and it,

and it started off with the EHCP process. And then. There was also alternative

provision as part of that when the school placement was breaking down.

Victoria Bennion: You

can come across dealing with a local authority before you get to the HCP stage.

If your child isn't attending school, , you can be put in touch with inclusion

officer and ask to attend regular meetings. That's what happened with us

Natalie Tealdi: In my

experience it has involved lots of chasing up. So with various reports you need

to gather for the HCP and making sure it's all on track. And just to paint the

picture, when you have a child that's struggling at home, they're struggling

generally with school home they don't yet have.

A diagnosis. So you're trying to learn everything you possibly

can about a [00:02:00] SD and you're dealing

with daily meltdowns. They're being sent home from school. So you've got all of

that going on. And then on top of that, you need to deal with the local

authority and they're really frustrating processes.

Victoria Bennion:

Yes.

Natalie Tealdi: We

were looking at alternative provision. For our child and. I found that really

frustrating because I asked for a list because I wanted to have a look at what

the options might be myself, and there's quite a lot of secrecy involved and

I'm not really sure why. So I wasn't able to view a list even though one

obviously exists.

So I had to do my own research and I contacted these places

myself because we were going into a half term. That is usually a really quiet

time. A lot of people take holiday during half term, so it's hard to get hold

of anyone at the local authority at that point, so you're trying to progress

things, but I was just trying to do what I could, so I made my own inquiries,

found out that there [00:03:00] were a possible

few placements for my son.

Then we go back to school. We go to a meeting and I'm told the

council have done their own inquiries and there are no placements available,

which is not what I found. But at that point, because I've done my own

research, I was able to say, well, I've spoken to this place, this place, and

this place, and they all say they have a place.

Um, so you know, that's frustrating. So they then go back and,

eventually we found somewhere, but. It's that added.

Victoria Bennion: You have to be on top of it.

Natalie Tealdi: Yes.

Yes. And I just think there should be a better way. And I, I know so many

stories from other parents it's standard, isn't it? And there seems to be a lot

of staff turnover, staff sickness, as well as the usual annual leave. I'm not,

I'm not saying they shouldn't go on their annual leave.

Victoria Bennion:

It's shocking though, because I don't think you would see this in other [00:04:00] industries. For example, private sector. I

had a query with my child, and I needed to speak to somebody fairly urgently

the day that they broke up for the Easter holidays and. When I finally got

through to speak to someone, I was told that there was no point in me ringing

again to speak to someone during the East holidays. The person I needed to

speak to was on long-term sick and nobody else was there.

So apparently they take two and a half weeks off. And there's

no cover. I couldn't run my business like that. , I just had to wait, that's

just one of those other frustrations. Do you think that you could maybe tick

something off your list and you can't,

it's an added layer, as you said, when you're dealing with all

this. Another thing that I've come across is that you think something is

approved or something is done, they've said that's fine. And then nothing

happens. Just an example we'd been promised tutoring support., It took quite a,

a lot of correspondence to get to the point my tutoring had to go to panel. I

was told it was approved. And I was told that the [00:05:00]

tutors would be in touch two months later. nothing still being chased,

Natalie Tealdi: Oh my

goodness.

Victoria Bennion:

It's just another added layer that if parents aren't managing it. Along with

managing everything else, it's something that's, you know, realistically isn't

going to happen.

Natalie Tealdi: It's

another thing that you have to keep on top of, isn't it? , I was making weekly

phone calls with our contact at the local authority just to check in, and I'm

sure she really did not like having those phone calls with me. But it was just

that I felt that if I didn't, we'd drop off the radar and then nothing would

happen

you just have to keep on to get what your child needs. 'cause

at that point, your child is often struggling so much that you just need

something sorted out for them.

Victoria Bennion:

absolutely. And then weeks and months in their life, that's a very long time

and they're going without the support that they need, but there seems to be no

hurry. I.

Natalie Tealdi: And I

don't really understand what goes on there, but I'm sure improvements could be

made to [00:06:00] processes if they could work

with parents, collaborate with us, treat us like, you know, intelligent human

beings. I. I'm sure they could set up systems where they can track eh, HCPs and

we can log in and see a process.

You know, see, okay, that part's been ticked or they're still

waiting for that. Maybe I could chase that person to help it move along, rather

than just being blind.

Victoria Bennion: I

also think there needs to be more transparency

Natalie Tealdi: And

also with, specialist schools as well. Why is there not a list available so

that we can have a look to see what possible schools might be good for our

children,

you know, why is that a secret?

Victoria Bennion: I

know you're completely blind, aren't you?

Natalie Tealdi: I do

wonder if it's because of financial reasons, because they cost different things

and they don't want parents just plucking the most expensive school, is it to

do with that? I don't know, but I really do think it should be more accessible.

Victoria Bennion: If

your child isn't coping in mainstream, you are completely at sea. [00:07:00] With what happens next? What does that

look like if you have a child that's needs something different? Because when

you're in the mainstream school system, you know that you've got these choices.

We're in the middle school system, but you know, you might have

a choice of primary or secondary schools, or first schools, middle schools,

upper school, upper schools, depending on where you live, however it works. But

once your child is out of that system. How do you even navigate it?

How do you decide what's right? Because if you were choosing a

first school or primary school for your child, you would be thinking, well,

that school might work. That's near that. That's good at this. I'm gonna look

round. Certainly with choosing middle schools, I can go about that far and

there were three choices for us and you weighed them up, which one's gonna be

the right fit?

And then obviously you apply, you're not necessarily gonna get

it, but , you go to an, open day perhaps, and you might have that choice, but

once you're talking, not that and specialist, it's just. It's not transparent

you then had the issue, didn't you, [00:08:00]

with what they thought was right and you didn't think was right.

Natalie Tealdi: There

was a school suggested for us, which was gonna be at least a 50 minute drive

each way every day. And at the time, you know, our son was six, how am I

supposed to work and do that journey and look after our other child, but also

put him in a taxi at six years old. To school and, you know, that's, that's a

long day anyway for a 6-year-old.

And then to add on that travel, and also I know it would be

stressful for him.

Victoria Bennion:

That's quite a lot to ask.

Natalie Tealdi:

Definitely.

Victoria Bennion: So

then that involves more advocacy, more of your time I remember you had to prove

the case of why a nearer school was going to work out better and if they said

that he had to go to this school that was so far away why you felt that it

might fail, but again,

it's like you're doing one of your assignments and you've gotta

put the arguments.

Natalie Tealdi: . I

remember getting in touch with a lot of people who were involved with our son

at the time. To get quotes to help [00:09:00]

support the case for this school that was nearer to us. And we did get the

right school in the end, but we only found out the day before the last day of

term, at the end of that school year.

So there wasn't really much time to prepare him for that.

Victoria Bennion:

Decisions when they happen, happen so quickly for our children that sometimes

they go from one setting to the next setting without much warning at all.

Natalie Tealdi: And

this is with children who find change difficult as well. So you know, careful

management would be really helpful.

Victoria Bennion: You

feel like your child isn't the priority and isn't being given a lot of thought

here, especially children who need extra time to get used to change. Their,

needs need taking into consideration , and it just doesn't always happen. It's

like, you've got this. You should be grateful that you've got this specialist

place, which we are. Of course we are. I know there's a lot of pressures. They

must be overworked, but it doesn't make it easy for parents and [00:10:00] carers who are advocating for their

children, just trying to get them what they need and trying to make sure that

they're not further damaged by what's going on.

Natalie Tealdi:

Definitely. That's the key. And I do think so much could be improved for the

local authority staff too. I'm sure they are stressed, overworked. They're

dealing with these parents who are often stressed, emotional, and if we could

meet in the middle somewhere just to ease everything for everyone, that would

be helpful.

Victoria Bennion:

It's not a surprise really. When you phone them and you hear that, so-and-so's

off sick. Well, it must be a nightmare job, you are dealing with. , Parents,

carers, who are under a great deal of pressure trying to. Look after their

children, hold down jobs and advocate for their children.

People, we know saying that they're emailing every single day

because if you don't, you know very well what's gonna happen. You're just gonna

fall off the radar. It's really, really draining.

I do remember having that [00:11:00]

moment with my son thinking if I've gotta try and get him what he needs, this

is gonna take a lot of fighting and I don't feel that's necessarily my nature.

I thought, do I really want this? Is there another way? But before I know it,

we were embroiled. in that, process because there wasn't really another option.

And it has been worth it. To get him in the right setting. But it shouldn't be

this hard. There should be, more efficient processes.

Natalie Tealdi: Yeah.

And more transparency.

Victoria Bennion: And

more transparency. I would say that one of the most important lessons that I

learned was that you can't leave it in anyone else's hands. You can't leave

those dates of when you're supposed to be hearing back from someone. You can't

trust that you will hear back. You need to have them in your calendar.

Natalie Tealdi:

That's a really good point actually. Yeah. You need to have it all noted down,

and then you need to be contacting those people, saying The date's coming up.

Are we on track?

Victoria Bennion:

Make notes in your calendar. For example, if it's the EHCP process that you're

going through, [00:12:00] know when you should

be hearing, if they've said they'll get back to you next week, then chase them.

Natalie Tealdi: , I

felt like I was being rude or, inconveniencing people. But actually you just

have to do what you have to do and you can do it in a nice way. You don't have

to be rude to anybody. But , it's just best to keep on top of it all.

Victoria Bennion: We

know today's episode might have brought up a lot because this is something so

many families are dealing with behind the scenes. We'd love to hear more about

your experiences. If you have any tips for managing the process you can share

them with us [email protected] or on social media all our links are in the

show notes. Let's keep the conversation going and support each other through

this journey.

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 [00:13:00] 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.