From Parent to Advocate: Lessons Learned in the SEND System

From Parent to Advocate: Lessons Learned in the SEND System

I didn’t enter the SEND system as an advocate.

I entered it as a parent.

Like so many parents, I was simply trying to understand what my child needed, what support was available and how I could make sure his needs were properly understood.

At the beginning, I didn’t know the terminology. I didn’t understand the significance of Sections B and F of an EHCP. I didn’t know what should happen at an Annual Review, what could be challenged, or how important it was for provision to be clear, specific and measurable.

I learned because I had to.

And that experience eventually led me from advocating for my own child to supporting other families through Rebekah Herbert Advocacy.

The system can feel impossible to navigate

One of the biggest lessons I have learned is that SEND families are expected to navigate an incredibly complicated system while often already exhausted.

Parents are learning about EHCPs, assessments, Annual Reviews, mediation, appeals, tribunals, school consultations and local authority processes — often while caring for a child who may be struggling to attend school, experiencing anxiety or overwhelm, or simply not receiving the support they need.

Then there are the acronyms.

EHCP. EHCNA. SALT. OT. EP. SENCO. SENDIASS. EOTAS. AP.

Once you work within SEND, these terms become familiar. But for a parent encountering the system for the first time, it can feel like learning another language.

That matters.

Because parents should not need to become SEND professionals simply to understand how their child will be educated.

An EHCP is about a child, not a document

I spend a lot of time reading EHCPs now.

It is very easy for the process to become focused on wording, sections, reports, deadlines and disagreements between professionals.

But behind every plan is a child or young person.

That is something I try never to lose sight of.

When I review an EHCP, I am not simply asking whether it contains enough words. I am asking whether it actually describes this child.

Does Section B accurately explain their needs?

Does Section F provide support that genuinely responds to those needs?

Can someone reading the plan understand what must happen, who should provide it, how frequently it should happen and what it is intended to achieve?

Most importantly: could this plan actually work for this child in real life?

A beautifully written EHCP is of little value if the provision cannot be delivered or the educational environment itself is inaccessible to the young person.

Provision needs to mean something

Another major lesson has been the importance of specificity.

Words such as access to, opportunities for, regular, as required or when necessary can sound supportive.

But parents need to ask what those words actually mean.

How often?

For how long?

Delivered by whom?

Individually or within a group?

What training or experience should that person have?

How will progress be monitored?

If everyone can interpret a piece of provision differently, it becomes much harder for a parent to know whether it is actually being delivered.

That is why I encourage families to look beyond whether an EHCP sounds positive and consider whether the provision is clear enough to understand what their child should actually receive.

School attendance is not the same as access to education

This has become particularly important in my advocacy work.

There are children and young people who desperately want to learn but cannot currently access a traditional school environment.

For some, even walking through the school gates has become impossible. Others may manage short periods before becoming overwhelmed. Some cannot engage with online learning simply because it is offered from home.

We need to be careful about interpreting this as a child refusing education.

Sometimes the environment has become inaccessible.

The question then needs to change.

Instead of continually asking:

“How do we get this child back into school?”

we may need to ask:

“What does this child need in order to access education safely and successfully?”

That might involve a trusted adult, individual tuition, therapeutic support, alternative provision, carefully supported community-based learning or a gradual package built around the young person's current needs.

The starting point should be the child — not fitting the child into the provision that happens to be available.

Parents know their children

Professional evidence is extremely important within the SEND system.

Educational psychologists, speech and language therapists, occupational therapists, clinicians, teachers and other professionals can provide essential evidence about a child's needs.

But there is another source of evidence that should never be underestimated:

the parent.

Parents see what happens after school.

They see the exhaustion, distress and recovery that professionals may never witness.

They know whether their child spends the weekend recovering from the school week. They know which transitions cause difficulties, which strategies work at home, what their child says when they feel safe and what happens when demands become too much.

Listening to parents is not an optional courtesy.

Their knowledge of their child is an important part of understanding the whole picture.

And wherever possible, the voice of the child or young person must sit at the centre too.

You do not always need to start with a fight

Advocacy does not automatically mean confrontation.

Sometimes a carefully written email asking the right question can move a case forward.

Sometimes it is about identifying an inconsistency within an EHCP.

Sometimes it is asking whether updated professional advice is needed.

Sometimes it is sitting around a table with a parent, school and local authority and saying:

“We all agree this isn't working. What needs to change?”

There will, of course, be times when parents need to challenge decisions formally. Mediation and the SEND Tribunal exist for a reason.

But effective advocacy is not about creating conflict.

It is about understanding the issue, understanding the evidence, knowing the relevant duties and keeping the discussion focused on what the child or young person needs.

Keep everything

If I could give parents one practical piece of advice, it would be this:

Keep records.

Keep emails.

Keep professional reports.

Keep copies of every version of the EHCP.

Keep Annual Review paperwork.

Keep notes from telephone conversations and meetings.

Keep evidence showing what provision has or has not happened.

Create a timeline if things become complicated.

SEND cases can stretch across months or years, with different professionals and caseworkers becoming involved along the way.

A clear paper trail can make an enormous difference.

My experience as a parent still shapes my advocacy

Becoming an advocate has given me knowledge that I wish I had possessed when I first entered the SEND system.

But I never want professional knowledge to replace the perspective that brought me here.

I know what it feels like to be the parent sitting in the meeting.

I know what it is like to read an email from a local authority and wonder what it actually means.

I know how overwhelming it can become when you are trying to care for your child while simultaneously researching processes, chasing professionals and trying to work out what should happen next.

That experience influences how I work with families today.

I don't want parents to feel that somebody has simply taken their case away from them.

I want them to understand it.

Because knowledge gives parents confidence.

What I would tell the parent I was at the beginning

I would tell her to ask questions.

I would tell her not to be embarrassed when she didn't understand the terminology.

I would tell her to read the plan carefully and ask what every piece of provision actually means.

I would tell her to keep records.

I would tell her that a professional disagreeing with her does not automatically mean she is wrong.

I would tell her to listen to her child.

And I would tell her that she doesn't have to understand the entire SEND system overnight.

Sometimes you only need to understand the next step.

That principle now sits at the heart of my advocacy work.

Helping families understand where they are, what the evidence says, what their options are and what they can do next.

Because ultimately, SEND advocacy should not be about winning arguments.

It should be about ensuring that children and young people are seen, understood and able to access an education that genuinely meets their needs.

Rebekah Herbert

Rebekah Herbert Advocacy Ltd