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“Will My Child Still Get Help?” — Understanding Needs-Led Support in a Changing SEND System

As a parent of a child with Special Educational Needs and Disabilities (SEND), you, like us, may well be feeling anxious about the national changes being proposed around SEND support. One common concern we keep hearing is this: “Will my child still get help if they don’t have a formal diagnosis?”

It’s an entirely valid fear. For years, many families have had to fight hard to get their children assessed, often being told that you can only access some services, some support and some schools with a diagnosis. So the idea of moving toward a more needs-led system can feel frightening, unclear—or even like a step backwards.

Diagnosis-Led vs. Needs-Led: What’s the Difference?

A diagnosis-led approach says: “We need to label this before we can help.”

That means waiting for your child to be assessed and formally diagnosed (for example, with autism, ADHD, dyslexia) before they can access some types of support or services.

This system does cause frustration for many families. We know that there are extremely long waiting lists, and even getting on a waiting list can be difficult. This can lead to delays in early support. The feeling of having to “prove” your child is struggling before anyone will listen. And for some, no clear diagnosis ever comes—just more uncertainty.

A needs-led approach says: “Let’s focus on what your child needs right now, regardless of labels.”

This model should look at your child as a whole person. If they’re struggling with reading, regulating emotions, social communication, or anything else—it should ask: What can we do to help them thrive? Not: What box do they fit in?

However, again this model can lead to frustration- who actually is going to do the assessment, who is going to look at what needs the child has, are they appropriately qualified to do so? Also, again is there enough access for these assessments or are children going to be stuck on waiting lists again. And also- if you are going to do an assessment of need, what is the point in then not providing the diagnosis that those needs show?

We also know, that even NHS England, talk about how early diagnosis is important:

NHS England

So What May be Changing in the National Reforms?

The Government has signalled that it wants the system to be more consistent, earlier-intervening, and less reliant on formal diagnosis. That’s a positive aim in theory—many parents and professionals agree that too much weight has been placed on getting a diagnosis just to unlock support.

But understandably, families are worried. Because if a diagnosis is no longer the “key” to getting help—what is? 

We are also still waiting for actual detail about what may or may not be in the reforms, uncertainty leading to further fear.

Would My Child Still Be Supported Without a Diagnosis?

Yes—but with a few caveats.

In a true needs-led system, your child should receive support based on their individual needs, not whether they have a specific diagnosis.

That might include:

• Differentiated teaching in the classroom

• Additional adult support or small group work

• Emotional and social development programmes

• Speech and language input

• Sensory breaks or adjustments to the school day

Many of these things can (and should) happen through what’s called SEN Support—which doesn’t require a formal diagnosis or an Education, Health and Care Plan (EHCP). It relies on schools identifying needs early, working with outside professionals and responding proactively.

However, for this to really work, schools need training, funding, and leadership that values inclusion. And parents need to be involved and listened to throughout. They need to be able to fund accessing support and professional input from services like speech and language, educational psychology, occupational therapy etc.

What Can Parents Do Right Now?

1. Keep records of your child’s needs
   Whether there’s a diagnosis or not, log behaviours, struggles, progress, and anything else that helps paint a clear picture of what support your child needs.

2. Stay involved with school
   Regular meetings with the SENCO (Special Educational Needs Coordinator) are essential. Don’t wait for a crisis—ask what support is in place now, and how it’s being reviewed.

3. Know your rights
   Even without a diagnosis, your child is still entitled to support under the SEND Code of Practice. Schools must identify and meet needs—diagnosis or not.

4. Push for assessment when needed
   A diagnosis can still be incredibly valuable—for understanding, for accessing specialist services, and for long-term planning. A needs-led system doesn’t mean diagnosis is “bad” or no longer relevant—it just means it’s not the only route.

In Summary:

You are your child’s biggest advocate. Diagnosis or not, their needs matter. And so do you.

How to Approach Your School’s SENCO

A Guide for Parents and Carers

If you’re a parent or carer of a child with special educational needs (SEN), knowing how and when to approach the school’s SENCO (Special Educational Needs Coordinator) can feel a little daunting. This guide will help you understand their role, what they can (and can’t) do, and how to work with them to get the best support for your child.

What Is a SENCO?

A SENCO is the teacher responsible for coordinating support for children with special educational needs and disabilities (SEND) in a school. Every mainstream school is required to have one. They:

• Oversee the school’s SEN policy
• Coordinate support for children with SEN
• Work with teachers, parents, carers, and outside professionals
• Help ensure that children’s needs are met in school

Preparing to Meet the SENCO

Before you contact the SENCO, it can help to:

• Write down your concerns: Focus on what you’ve noticed about your child’s learning, behaviour, or emotional wellbeing.
• Collect any supporting information: Examples from schoolwork, teacher comments, or reports from healthcare professionals can help clarify the picture.
• Know your rights: You don’t need to be an expert, but having a general awareness of the SEND Code of Practice (2015) can empower your discussions.

How to Approach the SENCO

• Ask for a meeting: A short email or phone call requesting a meeting is usually the best first step.
• Be collaborative: Use the meeting to work together. Try saying, “I’d like to understand how we can support [your child’s name] together.”
• Be honest: Share openly about your child’s strengths and challenges.
• Take notes: Write down what’s discussed and agreed on, so you have a clear record.

What the SENCO Can Do

• Identify whether a child has special educational needs
• Put support in place (like classroom strategies or small group interventions)
• Work with teachers to adapt lessons and monitor progress
• Refer to outside professionals (such as speech and language therapists, occupation therapist, siss and many more)
• Begin or support an Education, Health and Care Plan (EHCP) request if needed

 What the SENCO Can’t Always Do

• Diagnose conditions: SENCOs can identify needs and refer to the right services, but they can’t diagnose autism, ADHD, dyslexia, or other conditions themselves.
• Provide instant support: Sometimes extra help depends on available funding, staff, or waiting times for specialists.
• Guarantee specific outcomes: They can support and advocate, but decisions like EHCP approval are made by local authorities, not schools.
• Replace healthcare or therapy services: While SENCOs work closely with external professionals, they don’t provide those services directly.

What If You’re Not Getting the Help You Need?

If you’re worried that your child’s needs are not being met, you can

• Ask for a copy of the school’s SEN Policy and SEND Information Report
• Request a follow-up meeting with the SENCO or Headteacher
• Keep a written record of concerns and conversations
• Get in touch with your local SENDIASS (Special Educational Needs and Disabilities Information, Advice and Support Service)
• Explore support from national organisations like IPSEA or Contact for legal advice and family guidance

Final Thought

Remember: you are your child’s biggest advocate. Most SENCOs are passionate about supporting children, but they work within systems that can be complex and under pressure. Being calm, prepared, and persistent can make all the difference.

Together, you and the school can build a stronger support plan that helps your child thrive.

If you’re a parent carer of a child with special educational needs or disabilities (SEND), you may have heard of Parent Carer Forums, such as Solihull Parent Carer Voice. But what exactly are they? What do they do, and just as importantly, what can’t they do?

In this blog, we are lifting the lid on the essential but often invisible work of these forums.

A Parent Carer Forum is a group of parent carers with SEND who come together to influence the way local services are designed and delivered. They are formed to give families a voice. Every local authority area in England has one, and they are part of a national network supported by Contact, funded by the Department for Education.

Forums are run by parent carers for parent carers, they are networks of parent carers with lived experience working collaboratively with local authorities, health services and education providers to highlight issues, share experiences and ensuring that families’ voices are heard in.

What DO Solihull Parent Carer Voice and other PCF’s do?

At their heart, PCF’s aim to bring about positive changes in SEND services through co-production. Their main functions include:

• Gathering and representing the views of families- through surveys, events, direct conversations etc, PCF’s collect the lived experiences of families navigating the SEND system.
• Influence policy and service design- by attending strategic boards and meetings offering a parent carer perspective.
• Raising awareness- we help professionals to understand the real-world impact of their policies and actions, ensuring professionals understand the challenges that families face and advocating for better communication and support.
• Build community- many PCF’s, including Solihull Parent Carer Voice run coffee mornings and workshops, helping families to feel less isolated.

All of this is done not for personal gain, but to try to improve the system, not just for our own children, but for ALL families navigating SEND systems.

What DON’T Solihull Parent Carer Voice and other PCF’s do?

It is important to understand what PCF’s aren’t. They are:

• Not a complaints or advocacy service: while we may signpost families to support, we cannot take on individual cases.
• Not therapists, social workers or case managers- we do not provide one-to-one support, assessments or care planning.
• Not a decision maker- we wok to influence a really complex system, we challenge, advise and influence but we do not have the power to make or enforce decisions. Change is often slow and is outside our control.

This can often lead to frustration, when families turn to Solihull Parent Carer Voice and all PCF’s for help with urgent issues, while we want to help there are limits to what we can do.

The Challenges that Parent Carer Forums face

Running Solihull Parent Carer Voice, like all PCF’s comes with no shortage of hurdles, it requires time, energy and a deep commitment.

Among the most pressing challenges for parent carer forums are:

• Lack of funding- PCF’s are very poorly funded by the Department for Education, making every penny stretch as far is it can is a daily challenge.
• System Complexity- navigating multiple agencies and services, who all have constantly changing staff, policies and services and entrenched bureaucracy is exhausting.
• Time and capacity- PCF’s are run by people operating mostly as volunteers, whilst in Solihull we do pay some staff for a few hours a week, this is all at National Living Wage, and we all work significantly more hours than we are paid for. (Last year we paid staff for 76 hour per week, yet worked on average 246 hours per week!)
• Being heard- some parts of the system value co-production, in other areas we like all PCF’s have to fight to be listened to, to be taken seriously and to be able to influence change.
• Representation pressures- like all PCF’s we are expected to gather and reflect a wide range of views. No forum can speak for every family, but we work really hard to ensure we represent a wide range fairly.
• Limitations of influence- whilst we are able to influence locally, there are many areas that we would like to be able to influence but cannot because they are not in local control- national policies and priorities, accountability for academies, funding for services, are some examples of this.

And of course, the biggest challenge of all: trying to make change in a system that many feel is broken.

The Hidden Cost…….

Those working and volunteering for Solihull Parent Carer Voice, like all PCF’s are parent carers themselves. We juggle medical appointments, school meetings, care plans, health plans, therapies and meeting the day-to-day needs of our children, the same as all other parent carers. On top of this we are attending strategic meetings, responding to emails, running social media, collecting data, writing reports and surveys and managing difficult conversations with families and professionals alike.

There is a hidden cost for us all, constant advocacy in an under-resourced system is exhausting, we face personal financial strain- doing work that would normally command a full salary, listening to other families’ struggles, while managing our own can be emotionally taxing and the sense of responsibility, trying to ‘get it right’ for as many people as possible, whilst knowing it is impossible to help everyone creates overwhelming pressure and feelings of guilt.

Being part of a forum isn’t just a role, we do it because we care deeply. We believe the system can and must be better. We’ve experienced the worst of it and don’t want others to go through the same.

Parent Carer Forums- whether in Solihull or across the country, are one of the most vital, yet undervalued parts of the SEND landscape. If we are not there to give the voice of families, who will be? Who will stand up for families and talk to services about the impact their decisions, policies and processes have on children and families.

We work behind the scenes, fighting for a better system, even when that system is overwhelming, underfunded and slow to change. We do all of this without any thanks, and often with criticism- whether it’s from the services that we are challenging to do better, or from families who think we need to do more and quicker and who often don’t understand that we do not have decision making power.

Behind every Parent Carer Forum, is a group of parent carers who are already carrying a lot, and who are choosing, every day, to carry more for the sake of others.