28 October 2026 | AskEllie News & Benefits

The Autumn Budget has brought important announcements about household finances, unpaid carers and energy bills. But for millions of disabled people and SEND families, the biggest question remains: what will happen to the benefits they depend upon?

Chancellor John Healey has presented the Government’s latest financial plans, with measures aimed at easing some household costs and reforming parts of the benefits system.

At AskEllie, we’ve been examining the announcements alongside the ongoing welfare reforms to help families understand what is changing, what has already changed and what remains uncertain.

The most important message is this: there is no reason to assume that your child’s DLA or your PIP has automatically been cut because of today’s Budget.

However, there are several developments families should understand.

This is a Budget Day update based on announcements and official information available during the afternoon of 28 October. Further detail may follow in the final Budget documents.

1. Personal Independence Payment (PIP): Are new cuts being introduced?

PIP remains one of the biggest concerns for disabled people and families supporting young adults.

Over the past two years, the Government has considered substantial reforms to disability benefits, including changes to eligibility and assessment criteria.

One controversial proposal would have required claimants to score at least four points in a single daily living activity to qualify for the daily living component.

That proposal was withdrawn from the Universal Credit legislation in July 2025.

Instead, the Government established the Timms review to examine the future of PIP.

As of this update, we have not verified a new PIP eligibility cut announced specifically in today’s Budget.

But that does not mean the wider reform debate has ended.

Future proposals could still affect how PIP is assessed, the evidence claimants must provide and how eligibility is determined.

What should PIP claimants do?

If you currently receive PIP, continue following the conditions of your existing award.

Respond to any official review or reassessment correspondence and report relevant changes in circumstances.

If you’re preparing a new claim, focus on explaining how your condition affects daily living and mobility, including whether you can complete activities safely, repeatedly, to an acceptable standard and within a reasonable time.

Do not assume that a proposed future reform has already changed your entitlement.

2. Disability Living Allowance (DLA): What about children?

For SEND parents, DLA is often one of the most important sources of financial assistance.

It can help families meet the additional costs associated with caring for a disabled child.

These may include increased supervision, disrupted sleep, additional care needs and difficulties with mobility.

At the time of writing, we have not verified a new Budget-specific change removing or restricting children’s DLA eligibility.

Children do not automatically lose DLA because of the Budget.

DLA continues to be assessed according to the child’s individual care and mobility needs.

A formal autism or ADHD diagnosis is not, by itself, required to qualify.

Likewise, having a diagnosis does not automatically establish entitlement.

What should parents remember?

If your child needs substantially more care, attention or supervision than another child of the same age, it may be worth checking DLA eligibility.

For mobility, the legal criteria differ between the lower and higher rates, so limited danger awareness or a risk of bolting does not automatically establish Higher Rate Mobility entitlement.

Parents preparing applications should give clear examples of what happens in everyday life, the support required and the risks involved.

3. Universal Credit: Important changes are already affecting disabled people

While attention is focused on today’s Budget, some of the most significant Universal Credit changes have already taken effect.

From 6 April 2026, the Government reduced the Universal Credit health element for many new claimants.

This is the additional payment associated with having limited capability for work and work-related activity, commonly known as LCWRA.

For 2026/27, the two relevant monthly amounts are:

Universal Credit health element	Monthly amount
Lower rate for many new claimants	£217.26
Higher rate for protected or qualifying claimants	£429.80

The higher amount remains available in specified circumstances, including certain existing claimants and people meeting severe-condition criteria.

This means two people with significant health difficulties may receive different amounts depending on when they qualified and which protection rules apply.

The Government has also increased the standard Universal Credit allowance above inflation as part of its wider reforms.

However, an increase in one part of Universal Credit does not necessarily compensate an individual for a reduction in another.

What about disabled children?

Families receiving Universal Credit may also qualify for the disabled child addition where their child receives a qualifying disability benefit.

For 2026/27, the relevant monthly amounts are:

• Lower disabled child addition: £164.79.
• Higher disabled child addition: £514.71.

The higher amount applies where the child meets specified criteria, including receiving the highest rate DLA care component.

These are separate from the adult Universal Credit health element.

Parents should check that any qualifying DLA award has been correctly reflected in their Universal Credit entitlement.

4. Could younger disabled people face further restrictions?

This is one of the most important issues for families with teenagers approaching adulthood.

The Government has been examining the relationship between disability benefits, young people who are not in education, employment or training, and support into work.

Recent discussions have included possible restrictions on the Universal Credit health element for younger claimants.

There have also been reports about different approaches to disability support for people under 25.

These discussions must not be confused with confirmed changes in law.

The relevant proposals depend on further policy decisions, published reviews and, where required, legislation.

For families whose children are approaching 16 or 18, the uncertainty is understandably worrying.

A young person who has experienced autistic burnout, prolonged school absence or significant disability-related barriers may require substantial support when transitioning into adulthood.

At AskEllie, we believe any future changes must be examined carefully for their potential impact on young disabled people who cannot readily access education, training or employment.

5. Carer’s Allowance: The unfair earnings cliff edge is set to end

One of the clearest announcements is the Government’s commitment to reform the Carer’s Allowance earnings limit.

Currently, eligible carers receiving Carer’s Allowance can lose their entire weekly payment if their earnings exceed the permitted limit.

For 2026/27:

• Carer’s Allowance is £86.45 per week.
• The earnings limit is £204 per week after permitted deductions.
• Exceeding the limit can result in losing the entire allowance.

This has created significant problems for unpaid carers who work part-time.

Some have faced substantial overpayment debts after unintentionally exceeding the limit.

What’s changing?

The Government intends to replace the cliff edge with a gradual reduction.

Under the proposed approach, Carer’s Allowance would reduce by £1 for every £1 earned above the permitted threshold.

That would mean a small increase in earnings would no longer automatically remove the entire allowance.

But the change is not expected until the 2030/31 financial year.

Until then, carers must continue following the existing earnings rules.

For SEND parents balancing employment with caring responsibilities, this is a welcome reform, but the delay means the current financial risks remain.

Carer’s Allowance can also affect other benefits, including Universal Credit, so families should check their overall entitlement before making changes.

6. Energy bills: Gas standing charges are being removed

The Government has announced plans to remove standing charges from household gas bills in 2027, or as soon as possible afterward.

Standing charges are fixed daily amounts that households pay regardless of how much gas they use.

The change is expected to affect approximately 23 million households.

However, there is an important detail.

The costs currently recovered through standing charges are expected to be moved into the price charged per unit of gas.

This means some households may save money while others, particularly those using more gas, may not benefit.

The Government estimates that approximately 60% of affected households could save around £45 annually on average.

For families caring for disabled children, heating costs can be particularly important.

Some children and adults have temperature-regulation difficulties, medical needs or spend more time at home.

The actual impact will therefore depend on individual household circumstances.

7. What about the wider cost of living?

The Government has also announced measures involving food import tariffs, business mileage rates and parental pay.

These may benefit some families, but they do not necessarily address the additional costs associated with disability.

For example, some SEND families face higher food bills because a child has ARFID or significant sensory-related food restrictions.

A child may only accept a limited range of brands, textures or foods.

Parents cannot always switch to a cheaper alternative when prices increase.

Other families face reduced working hours, transport costs, specialist equipment expenses and additional household energy use.

General cost-of-living measures are welcome, but disability-related costs need specific consideration.

8. What should SEND families do following the Budget?

Our advice is to avoid making decisions based on alarming social media headlines.

Instead:

1. Check your existing benefit award letters and make sure you understand what you’re currently receiving.
2. If your child receives DLA, check whether you’re entitled to additional Universal Credit support.
3. If you receive Carer’s Allowance and work, continue monitoring your earnings carefully.
4. If you’re approaching a PIP review or DLA renewal, prepare accurate evidence about your current needs.
5. If your child is approaching adulthood, begin planning their benefits transition early.
6. Seek individual advice before making changes that could affect your household’s overall entitlement.

Most importantly, remember that a Government announcement, a policy proposal and a change in law are three different things.

AskEllie’s view: Families deserve certainty, not confusion

For SEND families, disability benefits are not simply figures in a government spending document.

They can help parents reduce working hours to care for their children.

They can contribute towards additional disability-related expenses.

And they can provide a measure of financial security when family life is already challenging.

The Government has argued that welfare reform is necessary to improve the system, support employment and manage public spending.

Disability organisations have raised concerns about whether some reforms could leave people with substantial needs worse off.

Both the stated objectives and the practical consequences deserve careful examination.

At AskEllie, our focus remains on helping families understand their rights and the support available to them.

A family should not have to spend every Budget Day frightened that the assistance their disabled child depends upon might suddenly disappear.

We need clear information, fair assessments, appropriate financial support and a benefits system that recognises the realities of disability and unpaid caring.

Need help with DLA, PIP or benefit entitlement?

AskEllie provides individual guidance for SEND families navigating disability benefit applications, renewals and Mandatory Reconsiderations.

We can help families understand the relevant criteria and present their circumstances clearly.

Explore our support options:

https://v2.stan.store/Askellie

Final message to SEND parents

Today’s Budget includes announcements that may affect household finances and the future of unpaid caring.

But the wider debate about PIP, Universal Credit and support for younger disabled people is far from settled.

Please don’t assume your child’s DLA or your PIP has been cut because of something you’ve seen online.

Check the official rules, understand what applies to your circumstances and seek support where needed.

AskEllie will continue following developments and explaining what they mean for families.

Because disabled people and SEND parents deserve facts, not fear.

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Sources and further reading

• GOV.UK — Universal Credit payment rates: https://www.gov.uk/universal-credit/what-youll-get
• GOV.UK — Carer’s Allowance: https://www.gov.uk/carers-allowance
• GOV.UK — Government’s October 2026 everyday fixes: https://www.gov.uk/government/news/everyday-fixes-to-make-life-easier-for-millions-of-britons
• GOV.UK — Gas standing charge announcement: https://www.gov.uk/government/news/chancellor-abolishes-standing-charges-on-gas-bills-to-make-payments-fairer
• Child Poverty Action Group — Welfare reform: https://cpag.org.uk/welfare-rights/whats-new/welfare-reform-health-and-disability-benefits
• Contact — Ongoing benefit changes: https://contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/ongoing-benefit-changes/
• House of Lords Library — PIP and linked disability benefits: https://lordslibrary.parliament.uk/personal-independence-payment-and-other-disability-benefits-and-linked-schemes/

Published 28 October 2026. This article is based on information available during Budget Day and should be updated when the final Budget documents and implementation details have been fully reviewed. Rules differ across parts of the UK, particularly Scotland and Northern Ireland. Individual benefit entitlement depends on personal circumstances.

Published: 27 October 2026 | AskEllie — SEND News & Benefits

Thousands of unpaid carers could finally benefit from a fairer Carer’s Allowance system after the Government announced plans to end the controversial earnings cliff edge. But the proposed changes are not expected to take effect until around 2030–31.

For years, parents caring for disabled children and other unpaid carers have faced a difficult choice: increase their working hours and potentially lose their entire Carer’s Allowance, or restrict their earnings to protect the benefit.

Now, the Government has announced plans to replace this system with a gradual reduction in payments as earnings increase.

At AskEllie, we welcome the direction of this announcement. However, the lengthy wait raises serious questions about how carers will be supported in the meantime.

What is the Carer’s Allowance earnings cliff edge?

Under the current rules for 2026/27, eligible carers can receive £86.45 per week in Carer’s Allowance.

To qualify, they must generally:

• Provide at least 35 hours of care each week.
• Care for someone receiving a qualifying disability benefit.
• Earn no more than £204 per week after permitted deductions.
• Meet the relevant age, education, residence and other eligibility requirements.

For SEND parents, the person receiving care might be a child awarded the middle or highest rate care component of Disability Living Allowance (DLA).

The problem is how the earnings limit operates.

If a carer’s earnings exceed £204 per week, even by a single penny, they can lose their entire £86.45 weekly allowance.

This is commonly referred to as the cliff edge.

Rather than losing a small amount of support as earnings increase, carers can suddenly lose the whole payment.

For families already struggling financially, the consequences can be substantial.

Why has the system been so controversial?

Imagine a parent caring for an autistic child who needs significant supervision, emotional support and assistance with everyday activities.

That parent might manage to work a few hours each week while also providing more than 35 hours of unpaid care.

If their earnings increase slightly because of overtime, a pay rise or changes in working hours, they could cross the earnings threshold.

Under the existing rules, that can mean losing their entire Carer’s Allowance for the affected period.

Even more concerningly, some carers have continued receiving payments without realising their earnings had exceeded the limit.

This has resulted in substantial overpayment debts, sometimes accumulated over several years.

Some carers have subsequently faced demands to repay thousands of pounds.

For families who are already managing disability-related expenses, reduced employment opportunities and significant caring responsibilities, these debts can be devastating.

What is the Government proposing to change?

The Government has announced plans to replace the current cliff edge with an earnings taper.

Rather than losing the entire allowance immediately, payments would reduce gradually as earnings increase.

The proposed approach is to reduce Carer’s Allowance by £1 for every additional £1 earned above the permitted earnings threshold.

How would this work?

Using the current 2026/27 figures as an illustration:

Weekly earnings after permitted deductions	Current Carer’s Allowance	Proposed Carer’s Allowance
£200	£86.45	£86.45
£204	£86.45	£86.45
£205	£0	£85.45
£214	£0	£76.45
£254	£0	£36.45
£290.45	£0	£0

These are illustrative calculations using current rates. The final rules, earnings thresholds and benefit amounts may differ when the reform is introduced. Tax and interactions with other benefits are not included.

The central difference is that carers would no longer face an immediate loss of their entire allowance simply because their earnings exceeded the limit by a small amount.

This would provide greater predictability for carers trying to combine paid employment with their caring responsibilities.

However, the proposed £1-for-£1 taper would not mean that carers immediately benefit financially from every extra pound earned above the threshold. Until their earnings exceed the taper range, their combined earnings and allowance would broadly remain level, before tax and other deductions.

Nevertheless, it would remove the sudden financial penalty created by the current cliff edge.

When will the changes happen?

This is the disappointing part of the announcement.

Although the Government has announced its intention to reform the system, the changes are not expected to be introduced until around 2030–31.

The delay is linked to the significant changes required to Department for Work and Pensions (DWP) systems.

The proposed reform involves modernising how earnings are assessed and how Carer’s Allowance payments are calculated.

These changes are intended to make the system more predictable and reduce the risk of overpayments.

However, it means carers could face several more years under the existing rules.

At AskEllie, we believe the Government should also consider what interim protections can be introduced for families who are currently at risk of losing support or accumulating overpayment debts.

What does this mean for SEND parents?

Many SEND parents have already made significant sacrifices to meet their children’s needs.

Some have reduced their working hours.

Others have left employment entirely.

For parents caring for children with autism, ADHD, complex disabilities or significant additional needs, the demands can extend far beyond a typical working day.

There may be school meetings, therapy appointments, disrupted sleep, emotional regulation support, supervision and ongoing advocacy.

Combining these responsibilities with employment can be extremely difficult.

The current Carer’s Allowance earnings limit can create an additional barrier for parents who want to remain in work.

A fairer earnings system could help some families maintain employment without the fear of suddenly losing their entire allowance.

But the proposed changes do not address every difficulty faced by unpaid carers.

The weekly allowance itself remains relatively modest compared with the number of hours of care many families provide.

And financial support alone cannot replace the practical help, respite and appropriate services that families often desperately need.

What should carers do right now?

Until the new system is introduced, the existing Carer’s Allowance rules remain in force.

If you currently receive Carer’s Allowance, it is important to:

1. Monitor your earnings carefully. The current 2026/27 limit is £204 per week after permitted deductions.
2. Report relevant changes promptly. Changes in earnings or circumstances can affect entitlement.
3. Check which deductions are allowed. Certain pension contributions and care-related expenses may be taken into account when calculating earnings.
4. Seek advice if your earnings fluctuate. DWP may be able to average earnings in appropriate circumstances.
5. Check how Carer’s Allowance affects other benefits. For example, Carer’s Allowance is generally deducted from Universal Credit, although eligible carers may also qualify for the Universal Credit carer element.
6. Seek advice if you receive an overpayment notice. Do not assume the amount or decision is necessarily correct without checking the circumstances and your options for challenging it.

There is also an ongoing DWP reassessment exercise relating to certain historical Carer’s Allowance overpayments. Some affected carers may have their debts reduced or cancelled.

Can SEND parents still apply for Carer’s Allowance?

Yes.

The announcement does not prevent new applications.

Parents who meet the existing eligibility requirements can still apply for Carer’s Allowance.

For example, a parent caring for a child receiving middle or highest rate DLA care may qualify if they provide at least 35 hours of care weekly and meet the earnings and other eligibility conditions.

A child’s autism or ADHD diagnosis alone does not automatically qualify a parent for Carer’s Allowance. The qualifying disability benefit and the parent’s circumstances are important.

Families should also check whether claiming Carer’s Allowance could affect other benefits received by the household.

AskEllie’s view: Welcome news, but why such a long wait?

At AskEllie, we regularly hear from parents who are struggling to balance caring responsibilities, employment and financial pressures.

For some, returning to work or increasing their hours is already complicated by their child’s support needs.

The prospect of losing an entire weekly benefit because of a small increase in earnings adds another unnecessary difficulty.

Replacing the cliff edge with a gradual reduction is a welcome step towards a more predictable system.

But the proposed implementation timetable is disappointing.

Why should unpaid carers have to wait until the end of the decade for a system that doesn’t immediately penalise them for earning slightly more?

The Government must also ensure that the transition is properly communicated, that carers understand the rules and that historical problems with overpayments are not repeated.

And while financial reform is important, we must not lose sight of the bigger picture.

Unpaid carers provide enormous support to their families and communities, often at considerable personal, professional and financial cost.

They deserve a system that recognises that contribution.

Need help understanding your benefit entitlement?

At AskEllie, we support SEND families with understanding disability benefits, including DLA, PIP, Carer’s Allowance and related financial support.

If you’re unsure whether you’re receiving everything your family may be entitled to, our individual benefits support can help you understand the relevant rules and identify areas worth checking.

Explore AskEllie support:
https://v2.stan.store/Askellie

What do you think?

Have you ever reduced your working hours, refused overtime or worried about losing Carer’s Allowance because of the earnings limit?

Do you think the Government should introduce the proposed changes sooner?

We’d like to hear from SEND parents and unpaid carers about how the existing rules have affected their families.

Because carers shouldn’t have to choose between supporting their loved ones and protecting their financial security.

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Sources and further reading

• GOV.UK — Carer’s Allowance
• GOV.UK — Carer’s Allowance eligibility
• Carers UK — Carer’s Allowance earnings limit
• GOV.UK — Government response to the independent review of Carer’s Allowance overpayments
• ITV News — Government promises to end carers’ cliff edge, 27 October 2026

Information correct as of 27 October 2026. The proposed reform has not yet taken effect. Benefit rates, eligibility conditions and implementation arrangements may change. This article provides general information and is not a substitute for individual welfare benefits advice.

Emotionally Based School Avoidance (EBSA), autistic masking and the devastating consequences of missing the warning signs.

A child can appear perfectly calm in school while experiencing overwhelming anxiety before and after the school day.

For thousands of SEND families, the words “They’re absolutely fine once they’re here” can be some of the most frustrating words to hear.

Because what happens when the child the teachers see is completely different from the child their parents see at home?

And more importantly, what happens when those differences are repeatedly dismissed until the child can no longer cope with attending school?

This article explores a mother’s powerful experience of EBSA, why some autistic children mask their distress, the warning signs parents should recognise, and the practical steps families can take before difficulties escalate.

“Please Don’t Do What I Did”: A Mother’s Warning About School Anxiety

A mother recently shared a deeply emotional video about her son’s experiences of Emotionally Based School Avoidance (EBSA).

Her message to other parents was simple:

Please listen to your instincts when you know your child is struggling, even if school tells you everything is fine.

She explained that her son had been out of school for three years.

For a long time, she had been reassured that there were no significant concerns about his presentation in the classroom.

Yet what she was experiencing at home told a completely different story.

Eventually, after pursuing an Education, Health and Care Plan (EHCP) herself, she said her son was identified as experiencing severe school-related anxiety and autistic burnout at just four years old.

He is now attending a specialist setting which, according to his mother, has been supportive and willing to move at his pace.

But there was one particularly heartbreaking part of her account.

Although things are improving, she explained that the new placement cannot simply erase the distress associated with years of struggling to get him into school.

Her experience raises a question every school and education professional should consider:

If a child repeatedly becomes distressed about attending school, should we be reassured simply because they appear calm once they’re inside the classroom?

I don’t believe we should.

And here’s why.

What Is Emotionally Based School Avoidance (EBSA)?

Emotionally Based School Avoidance, commonly referred to as EBSA, describes difficulties attending school because of significant emotional distress.

It’s sometimes referred to as Emotionally Based School Non-Attendance (EBSNA).

Children experiencing EBSA may feel intense anxiety, fear, panic or emotional overwhelm in connection with attending school.

Some want desperately to attend, see their friends and continue their education.

But they find themselves unable to manage the emotional demands associated with getting there or remaining there.

EBSA isn’t a diagnosis in itself. It describes a pattern of difficulty which may have several underlying causes.

Those causes can include:

• Anxiety and other mental health difficulties.
• Autism, ADHD or unmet special educational needs.
• Sensory overload.
• Bullying or difficulties with friendships.
• Learning difficulties and overwhelming academic expectations.
• Problems with particular staff members or lessons.
• Changes in routines or school environments.
• Previous distressing experiences associated with school.

Sometimes several factors are contributing simultaneously.

And sometimes a child cannot explain why attending school feels impossible.

The important point is that school avoidance is not automatically deliberate defiance, laziness or poor parenting.

For some children, it’s a sign that something about their educational experience has become overwhelming.

The Child Who Appears Fine at School but Falls Apart at Home

This is something that needs far greater understanding.

Some children, particularly autistic children, become extremely skilled at hiding their distress.

They may follow instructions.

Remain quiet.

Avoid asking for help.

Copy what their classmates are doing.

Suppress sensory discomfort.

Or work incredibly hard to avoid drawing attention to themselves.

This is sometimes described as masking.

To an adult observing them in the classroom, they may appear to be coping.

But that appearance doesn’t necessarily reveal how much effort the child is using simply to get through the day.

And then they come home.

Suddenly, the child who appeared calm in school is overwhelmed.

They may become tearful, irritable or withdrawn.

They might experience meltdowns.

They may need hours alone.

They could struggle to eat, sleep or communicate.

And by the following morning, the thought of returning to school may produce intense distress.

A child can comply with everything a school asks of them and still be struggling significantly.

Of course, not every difference between home and school is caused by masking.

There may be other explanations, and it’s important to investigate them carefully.

But when parents repeatedly describe distress outside school, those observations are relevant evidence of the child’s needs.

They should never be dismissed simply because staff haven’t witnessed the same behaviour.

“But They’re Fine Once They’re Here”

As a SEND dad, I’ve heard versions of this statement many times.

And I know how upsetting it can be when you’ve already spent hours trying to help an anxious child get ready.

Perhaps you’ve been awake half the night.

Perhaps your child is frightened about the next school day.

Perhaps getting dressed has taken an hour because they’re already overwhelmed.

You finally manage to get them through the school gates.

And then you’re told:

“See? They’re fine now.”

But what about everything that happened beforehand?

What about the panic?

The physical symptoms?

The emotional distress?

And the exhaustion they’ll experience when they come home?

The fact that a child can enter a classroom doesn’t necessarily mean their underlying anxiety has been resolved.

Equally, a parent seeing distress at home doesn’t automatically establish that the school environment is the sole cause.

The answer is to investigate the entire picture, including the child’s own perspective.

Schools and parents should be working together to understand why the child is struggling, rather than arguing over whose version of events is correct.

The Warning Signs Parents Shouldn’t Ignore

School-related anxiety doesn’t always begin with a child refusing to enter the classroom.

Sometimes the signs develop gradually.

A child who previously enjoyed school may begin complaining about stomach aches before leaving home.

They might struggle to sleep on Sunday nights.

They may become increasingly distressed when asked to get dressed.

Or they might begin withdrawing from activities they previously enjoyed because they’re exhausted from coping with school.

Other signs can include:

Physical symptoms

• Repeated stomach aches or headaches before school.
• Nausea or changes in appetite.
• Sleep disruption.
• Physical tension or panic symptoms.

Emotional changes

• Increasing anxiety about school.
• Tearfulness or distress during morning routines.
• Irritability or emotional exhaustion after school.
• Withdrawal or a growing need to be alone.
• Distress about particular lessons, staff or social situations.

Changes in attendance

• Increasing lateness.
• Difficulty leaving home.
• Repeated requests to be collected early.
• Missing particular lessons or days.
• Eventually becoming unable to attend at all.

These symptoms can have many explanations, and physical complaints should not automatically be attributed to anxiety.

But when difficulties occur repeatedly around school attendance, they deserve investigation.

Early recognition matters.

Because the longer a child struggles without appropriate support, the more difficult it can become to rebuild their sense of safety and confidence.

Why Repeatedly Forcing Attendance Can Make Things Worse

I want to be careful with this part of the conversation.

Education matters.

Children benefit from suitable education, social opportunities and maintaining connections with the world around them.

And avoiding an anxiety-provoking situation indefinitely can sometimes increase anxiety.

So the answer isn’t automatically to remove every expectation of attending school.

But neither is it simply to apply more pressure to a child who is already overwhelmed.

There is a difference between supporting a child to gradually overcome anxiety and repeatedly pushing them into an environment that they experience as unsafe or unmanageable.

When a child is showing serious distress, professionals need to understand why.

Is there bullying?

Are sensory demands overwhelming?

Is the child struggling academically?

Are they experiencing separation anxiety?

Are staff using approaches that increase distress?

Does the child need specialist provision or reasonable adjustments?

Without understanding these questions, repeatedly insisting on attendance can fail to address the underlying problem.

A carefully planned, supportive approach may involve rebuilding trust, adapting the environment, making reasonable adjustments and helping the child take manageable steps towards accessing education.

There is no single solution suitable for every child.

But there should always be an effort to understand what the child is communicating through their distress.

Seven Practical Steps Parents Can Take When Their Child Is Struggling With EBSA

1. Start documenting what happens at home

One of the most useful things parents can do is maintain a written record.

Record difficulties before school, during school when known, and afterwards.

Include:

• Dates and times of significant incidents.
• Physical symptoms such as stomach aches or headaches.
• Sleep difficulties.
• Emotional distress before leaving home.
• Anything your child says about school.
• Meltdowns, shutdowns or exhaustion after school.
• Attempts you’ve made to support attendance.

Try to describe what happened rather than making assumptions about the cause.

For example:

“Tuesday: Child cried for approximately 40 minutes before school, complained of stomach pain, said they were frightened of maths, and remained distressed after returning home.”

This kind of factual record can help professionals identify patterns.

It can also provide valuable evidence when requesting additional support or an EHC needs assessment.

2. Put your concerns to the school in writing

Don’t rely solely on conversations at the school gates.

Email the SENCO and, where appropriate, the headteacher.

Explain what you’re observing at home and why you’re concerned that your child may not be coping.

Make it clear that you’re requesting help to understand the underlying reasons.

You could write:

“I’m concerned that my child’s increasing anxiety about attending school may be linked to unmet needs. Although they may appear settled in school, we’re experiencing significant distress before and after attendance. I would like an urgent meeting to discuss what is causing these difficulties and what support can be put in place.”

Keep copies of your correspondence.

If the school responds verbally, consider following up by email to confirm what was discussed.

3. Ask for a proper assessment of your child’s needs

School staff should consider whether the difficulties are associated with special educational needs or disability.

This might involve gathering information from the child, parents, teachers and other professionals.

You can ask about:

• Sensory assessments or adjustments.
• Learning difficulties.
• Social communication needs.
• Emotional wellbeing.
• Bullying or peer relationships.
• Difficulties with transitions.
• Access to a trusted adult.
• Whether external professional advice is necessary.

Where SEN is identified, support should follow an assess, plan, do and review approach.

Don’t simply accept an informal assurance that staff will keep an eye on things.

Ask what will actually happen and when it will be reviewed.

4. Request reasonable adjustments and an individual support plan

Reasonable adjustments can sometimes make an enormous difference.

Depending on the child’s needs, possibilities include:

• Arriving through a quieter entrance.
• Access to a calm or low-stimulation space.
• Support from a trusted staff member.
• Adaptations to uniform where disability-related needs justify them.
• Changes to particular lessons or transitions.
• Planned movement or sensory breaks.
• Support during lunch and other unstructured times.
• An agreed response when the child becomes overwhelmed.

Some children may benefit from a carefully planned, time-limited phased return, but a reduced timetable should not become an indefinite substitute for suitable education.

Any plan should explain what support is being provided, who is responsible, how progress will be measured and when it will be reviewed.

5. Consider requesting an EHC needs assessment

In England, parents can request an Education, Health and Care needs assessment directly from their local authority.

You don’t need the school’s permission.

And you don’t need to wait for an autism or ADHD diagnosis.

Under Section 36(8) of the Children and Families Act 2014, the local authority must assess where the child has or may have special educational needs and it may be necessary for special educational provision to be made through an EHCP.

Evidence of significant EBSA, unmet needs, reduced access to education or difficulties despite existing support may be relevant to that decision.

An assessment does not automatically result in an EHCP.

But parents should not be discouraged from requesting one simply because their child appears calm at school or has not yet received a formal diagnosis.

6. Speak to your GP when anxiety or health difficulties are affecting attendance

If your child is experiencing significant distress, physical symptoms or deteriorating mental health, speak to your GP.

They may consider whether further medical assessment or mental health support is needed.

Depending on the circumstances, referral to children and young people’s mental health services or other appropriate professionals may be considered.

Ask for relevant medical information to be shared with school where appropriate.

And remember that a child’s physical symptoms should be properly considered rather than automatically assumed to be anxiety-related.

7. Understand your child’s education and attendance rights

This is especially important.

Some parents become frightened when attendance letters, warnings or discussions about unauthorised absence begin.

You should continue communicating with school and keep written records of why your child cannot attend.

Ask how absences are being recorded and challenge factual inaccuracies.

In England, illness, including mental health-related illness, can be a reason for authorised absence where the relevant requirements are met.

However, EBSA does not automatically mean every absence will be authorised.

The school’s attendance responsibilities and the family’s individual circumstances still matter.

If your child is missing substantial education because of illness, mental health difficulties or other reasons, ask the local authority to consider its duties under Section 19 of the Education Act 1996.

Where the legal conditions apply, the authority may be required to arrange suitable education otherwise than at school.

Don’t assume that simply remaining on a school roll means the child is receiving the education to which they’re entitled.

And don’t wait for the situation to become unmanageable before seeking independent advice.

What If Your Child Already Has an EHCP?

If your child has an EHCP but is still experiencing serious school-related anxiety, the plan may need reviewing.

Ask whether the needs described in Section B accurately reflect the child’s current difficulties.

Consider whether the special educational provision in Section F is sufficiently detailed and appropriate.

And question whether the placement named in Section I can meet the child’s needs.

Importantly, under Section 42 of the Children and Families Act 2014, the local authority has a legal duty to secure the special educational provision specified in Section F.

That provision should not simply disappear because attendance has become difficult.

If your child’s circumstances have changed significantly, consider requesting an early review of the EHCP.

The Emotional Cost to Parents

There’s another part of EBSA that deserves far more attention.

What it does to parents.

I’ve spoken openly about how difficult school mornings can become when a child is experiencing significant anxiety.

But unless you’ve lived through it, it’s difficult to explain just how exhausting those mornings can be.

Every day can begin with the same struggle.

Reassurance.

Negotiation.

Trying to understand what’s wrong.

Managing your child’s distress while worrying about being late.

Then perhaps receiving another attendance phone call.

Another email.

Another warning.

And the fear that somebody will assume you simply aren’t trying hard enough.

Now imagine experiencing that for months or years.

It can affect your ability to work.

Your sleep.

Your relationships.

Your concentration.

Your emotional wellbeing.

And sometimes your own physical health.

Behind a child who is struggling to attend school, there may be a parent who has spent years struggling to keep the family functioning.

That parent’s wellbeing deserves attention too.

Support shouldn’t only focus on persuading the child to attend.

It should also help the family manage the situation safely and sustainably.

Why Early Intervention Matters So Much

The mother whose video inspired this article said something that stayed with me.

Her son is now in a specialist school that understands his needs.

But the improvement in his current circumstances doesn’t erase the distress associated with his previous experiences.

That’s why early support matters.

We shouldn’t always be waiting for attendance to collapse before asking difficult questions about whether a child’s needs are being met.

We should be listening when parents first report that something isn’t right.

Investigating patterns.

Talking to the child.

Considering the school environment.

Making adjustments.

Reviewing the effectiveness of support.

And involving specialist professionals when necessary.

Not every child experiencing EBSA will require a specialist school.

Many can be supported successfully within mainstream education when the right provision is put in place.

But appropriate support needs to respond to the individual child, rather than expecting every child to manage the same environment in the same way.

A Message to Schools and Education Professionals

I want to be clear.

This isn’t about blaming every teacher or suggesting that schools aren’t trying.

There are some exceptional teachers, SENCOs and school leaders who work incredibly hard to support anxious children.

Many are managing significant pressures themselves.

But when a parent repeatedly tells you their child is struggling, please listen.

Even when the child appears settled in your classroom.

Even when they complete their work.

Even when they smile.

Even when they don’t display the same distress that their parents describe.

Because absence of visible distress is not proof of emotional wellbeing.

Ask questions.

Investigate what’s happening.

Work with the family.

And take the child’s own account seriously.

Sometimes the most important information about a child’s educational needs comes from what happens outside the classroom.

The Most Important Message: Please Don’t Wait for Crisis Point

If there’s one thing I hope parents take away from this article, it’s this:

You do not have to wait until your child has completely stopped attending school before asking for help.

You can raise concerns early.

You can document what you’re seeing.

You can request SEN support.

You can ask for reasonable adjustments where appropriate.

You can seek professional advice.

And, where the statutory criteria may be met, you can request an EHC needs assessment.

A child shouldn’t have to become desperately distressed before their difficulties are recognised.

And a parent shouldn’t have to spend years fighting to convince somebody that the child they see at home is the same child school sees in the classroom.

The real question isn’t simply:

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

It’s:

“What does this child need to feel safe, supported and able to access education?”

Because attendance matters.

But so do safety, emotional wellbeing and the right to an education that meets a child’s individual needs.

And when we start asking the right questions earlier, we have a better chance of preventing families from reaching crisis point.

I’d Love to Hear Your Experience

Has your child’s school ever told you they were absolutely fine, while you were seeing significant distress at home?

Have you experienced months or years of EBSA?

Did early intervention make a difference, or did you struggle to get professionals to listen?

Share your experience in the comments.

Your story may help another parent recognise the warning signs and seek support before things become overwhelming.

And if this article resonates with you, please share it.

Sometimes the first step towards change is helping somebody else understand what they’ve never had to experience themselves.

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For decades, they’ve managed, adapted, hidden their struggles and held everything together. Then something changes — and suddenly, the life they’ve worked so hard to manage begins to feel overwhelming.

By Oliver Lee | Founder of AskEllie.co.uk | October 2026

There are women who have spent their entire lives being told they’re coping brilliantly.

They’re organised.

Reliable.

Hardworking.

Good mothers.

Good employees.

The person everyone turns to when something needs sorting.

From the outside, they appear to have everything under control.

But what people don’t see is the extraordinary amount of effort that goes into maintaining that appearance.

The conversations they’ve rehearsed.

The social situations they’ve forced themselves through.

The constant mental lists.

The sensory discomfort they’ve learnt to tolerate.

The exhaustion they experience after spending an entire day trying to appear like everybody else.

And then perimenopause arrives.

Suddenly, things that once felt manageable become difficult.

Their concentration deteriorates.

Their sleep becomes disrupted.

Their emotions feel harder to regulate.

Sensory experiences become more overwhelming.

And the coping strategies they’ve relied on for decades don’t seem to work as well as they once did.

For some women, this is the point when they begin asking a question they’ve never seriously considered before:

“Could I actually be autistic or have ADHD?”

And I think we need to talk about why.

What Exactly Is Masking?

Masking is when somebody consciously or unconsciously hides, suppresses or compensates for aspects of their neurodivergence to meet social expectations.

For autistic women, this might involve forcing eye contact, copying other people’s expressions, rehearsing conversations or concealing sensory distress.

For women with ADHD, masking might involve developing elaborate routines, constantly checking their work, overpreparing, or working far harder than others realise to appear organised.

It’s important to recognise that masking isn’t always a deliberate choice.

Sometimes it develops gradually throughout childhood.

A girl notices that certain behaviours attract criticism.

She learns to hide them.

She watches how other children interact and imitates them.

She becomes particularly careful about making mistakes.

And as she grows into adulthood, those strategies become so deeply ingrained that she may not even recognise how much effort she’s putting into appearing comfortable.

For some women, masking helps them navigate education, relationships and employment.

But it can also carry an emotional cost.

Imagine spending decades feeling that you must constantly monitor your behaviour to be accepted.

You might look as though you’re coping beautifully while privately feeling exhausted by the effort of keeping everything together.

Not all autistic or ADHD women mask, and the experience varies considerably between individuals.

But for women who’ve spent years relying on these strategies, a major life transition can be particularly challenging.

Then Perimenopause Changes the Rules

Perimenopause is the transitional stage leading up to menopause, when reproductive hormone levels fluctuate and eventually decline.

Menopause usually occurs between the ages of 45 and 55, although changes can begin earlier.

According to the NHS, perimenopause can involve:

• Problems with memory and concentration, often described as brain fog.
• Disrupted sleep and night sweats.
• Increased anxiety or changes in mood.
• Fatigue and reduced energy.
• Changes to menstrual periods.
• Headaches, migraines and physical discomfort.

Not every woman experiences all these symptoms, and their severity can vary enormously.

But here’s where things become particularly interesting for women who are autistic or have ADHD.

Some of these changes overlap with difficulties they may already experience.

Someone who has always struggled with executive functioning may suddenly find everyday organisation significantly harder.

Someone who’s spent years carefully managing sensory overload may find herself becoming overwhelmed more quickly.

Someone who has relied on consistent routines to remain calm may find disrupted sleep and unpredictable symptoms difficult to accommodate.

It can feel as though the rules for managing everyday life have suddenly changed.

And when a woman doesn’t yet know she’s neurodivergent, this experience can be frightening and confusing.

What Does the Research Actually Say?

This is an area where research is developing, and it’s important to distinguish what scientists have established from what women are reporting through lived experience.

Autism and menopause: The experience of the mask beginning to crack

A published qualitative study titled When My Autism Broke explored menopause experiences among seven autistic participants.

Researchers identified several recurring themes, including difficulties accessing appropriate information, changes in everyday functioning and experiences described as the mask beginning to crack.

Participants described menopause as a period during which previously manageable cognitive, emotional, social and sensory challenges could become more difficult.

Some also described a lack of understanding from healthcare professionals.

This was a small exploratory study, so its findings cannot tell us how frequently these experiences occur among all autistic women.

Nevertheless, it highlights an important issue.

For some autistic women, menopause may coincide with a significant change in their capacity to manage everyday demands.

And that deserves recognition rather than dismissal.

ADHD, hormones and perimenopause

There is also growing interest in the relationship between ADHD symptoms and reproductive hormones.

A systematic review published in the Journal of Attention Disorders in 2025 examined research into ADHD symptoms and sex hormones in females.

The researchers identified 11 relevant studies.

Their findings suggested a possible relationship between hormonal changes and ADHD symptoms, particularly during puberty and across the menstrual cycle.

However, they also found that research specifically investigating ADHD during menopause was lacking.

This distinction matters.

We cannot claim that science has conclusively demonstrated that perimenopause worsens ADHD in every woman.

But there are plausible biological questions, developing evidence from other hormonal life stages and reports from women that justify further investigation.

The fact that the research is still developing doesn’t make women’s experiences unimportant. It means we need to study them properly.

When the Woman Who Always Coped Suddenly Can’t

Imagine a woman in her mid-40s.

She’s spent her entire life being the dependable one.

She manages the family calendar.

She remembers everyone’s appointments.

She juggles employment, household responsibilities and caring for her children.

Perhaps she’s always struggled with distractions, sensory sensitivity, anxiety or social exhaustion.

But she’s found ways to compensate.

She’s learnt to push through.

Then things begin changing.

She starts forgetting appointments.

She feels overwhelmed by ordinary conversations.

Sounds she previously tolerated become unbearable.

Her concentration deteriorates.

She feels constantly tired.

And everyday tasks require far more effort than they used to.

People around her might say:

“You’re just stressed.”

“Everyone gets forgetful at your age.”

“You’re overthinking things.”

“Perhaps you need to get more organised.”

But what if those comments are missing part of the picture?

What if she’s experiencing perimenopause while also navigating previously unrecognised neurodevelopmental differences?

Or what if her existing ADHD or autism-related difficulties are becoming more noticeable because she’s exhausted, sleeping badly or dealing with hormonal symptoms?

It isn’t necessarily that she’s suddenly become incapable.

It may be that the demands on her have changed while the resources she’s relied upon to manage them have become less effective.

And that’s a very different conversation.

Why Some Women Reach Midlife Without an Autism or ADHD Diagnosis

Historically, autism and ADHD have often been recognised differently in girls and women than in boys and men.

For some women, childhood difficulties were interpreted as personality traits.

A girl who struggled socially might have been described as shy.

A girl who constantly worried might have been labelled sensitive.

A girl who struggled to concentrate but achieved good grades might have been considered dreamy or disorganised.

A girl who worked incredibly hard to avoid making mistakes might simply have been praised for being conscientious.

In adulthood, those differences might continue to go unrecognised.

Particularly if the woman develops effective ways of compensating.

Of course, being shy, anxious, forgetful or overwhelmed does not automatically mean someone is autistic or has ADHD.

And perimenopause itself can cause difficulties that resemble ADHD symptoms.

This is why a proper assessment matters.

For ADHD, clinical assessment considers whether symptoms began during childhood, how they’ve affected different areas of life and whether another condition better explains them.

Autism assessment similarly involves examining longstanding developmental patterns rather than relying on difficulties that have appeared only in midlife.

Perimenopause may prompt somebody to recognise patterns that have been present for decades, but it cannot establish an autism or ADHD diagnosis by itself.

What About SEND Mums?

This is where the conversation becomes particularly relevant to the AskEllie community.

Many SEND mums are already managing substantial demands before perimenopause enters the picture.

School meetings.

EHCP paperwork.

Appointments.

Sleep difficulties.

Family routines.

Emotional support.

School attendance struggles.

Advocating for their children.

Trying to maintain employment and relationships.

And sometimes dealing with all of these responsibilities while getting very little time to recover.

Now imagine reaching perimenopause in the middle of that.

Your sleep is already disrupted because your child struggles at night.

Then you begin experiencing night sweats or insomnia yourself.

You’re already dealing with significant demands on your concentration.

Then brain fog makes things harder.

You may already be sensitive to noise, competing demands or interruptions.

And suddenly your ability to manage those experiences feels reduced.

For a neurodivergent SEND mum, that combination may be particularly challenging.

But it’s also important not to overlook SEND mums who aren’t neurodivergent.

Perimenopause can be difficult for anyone, especially when there are substantial caring responsibilities and limited support.

We should never assume a mother is simply struggling to cope when there may be genuine health needs that haven’t been recognised or addressed.

Is It Autism, ADHD, Perimenopause or Burnout?

Sometimes the answer isn’t immediately obvious.

And sometimes more than one issue may be present.

Consider these examples.

Brain fog and forgetfulness

These can occur during perimenopause, alongside ADHD, during periods of prolonged sleep deprivation or for other medical reasons.

Sensory overwhelm

Sensory differences may be longstanding features of autism, but tiredness, anxiety and physical discomfort can also reduce someone’s tolerance of everyday stimulation.

Emotional dysregulation

Changes in mood and emotional responses may be associated with perimenopause, ADHD, stress, anxiety or other conditions.

Exhaustion

Fatigue can result from sleep disruption, caring demands, menopause-related symptoms and a wide range of medical conditions.

Difficulty managing everyday tasks

This may reflect longstanding executive functioning differences, new cognitive symptoms, burnout or an interaction between several factors.

There is no simple checklist that reliably separates all these experiences.

That’s why understanding someone’s history matters.

Did the difficulties exist in childhood?

Have they become more noticeable recently?

Has sleep changed?

Are there menstrual changes, hot flushes or other menopause-related symptoms?

How much support does the person have?

Are existing health conditions or medications contributing?

A good clinical assessment considers the whole person rather than automatically attributing every symptom to one diagnosis.

What Can Women Actually Do?

If you’re reading this and recognising your own experiences, there are practical steps worth considering.

1. Speak to your GP about perimenopause

You don’t have to wait until your periods stop before asking for support.

The NHS advises contacting your GP if you’re experiencing symptoms that may be related to perimenopause.

For many otherwise healthy women aged 45 or over, perimenopause can be identified from their symptoms and menstrual history without routine hormone testing.

Assessment may be different for women aged 40–45, those under 40 or those with other medical considerations.

2. Look back at longstanding patterns

If you suspect autism or ADHD, consider whether the difficulties you’re noticing now have earlier roots.

Perhaps you’ve always struggled with time management.

Perhaps social situations have always been exhausting.

Perhaps you’ve developed very rigid routines because unpredictable situations feel overwhelming.

Write down examples from childhood and adulthood.

This information can be useful when discussing possible assessment with a healthcare professional.

3. Stop assuming you must keep masking

If you’ve spent years forcing yourself to meet expectations that leave you exhausted, consider whether some of those demands can be reduced.

That might involve more recovery time after social situations, reducing unnecessary commitments, asking for clearer communication or using practical organisational tools.

You don’t have to abandon every coping strategy.

But you’re allowed to question whether the effort required to maintain it is sustainable.

4. Discuss treatment and support options

For perimenopause, options may include lifestyle measures, hormone replacement therapy where appropriate, and other treatments depending on symptoms and medical history.

If ADHD is diagnosed, treatment and support may involve medication, environmental adjustments and psychological or practical interventions.

Hormone replacement therapy should not be presented as an established treatment for autism or ADHD themselves.

Treatment decisions should be individualised and discussed with an appropriately qualified clinician.

5. Ask for support with caring responsibilities

For SEND mums, reducing demands may require more than advice about self-care.

It might mean asking family members to take on practical responsibilities.

It might mean reviewing support arrangements for a disabled child.

It might mean exploring a parent carer’s needs assessment or appropriate short-break services.

And it might mean acknowledging that you cannot reasonably continue managing everything alone.

You should not have to wait until you’re completely overwhelmed before your needs are taken seriously.

What Partners, Friends and Families Need to Understand

One of the most difficult things about masking is that people often judge somebody’s needs by how capable they appear.

A woman may have spent years being incredibly dependable.

So when she starts struggling, people can find it difficult to understand.

“But you’ve always managed before.”

“You never used to find that difficult.”

“You’ve changed.”

Those comments may be intended as observations.

But they can leave someone feeling ashamed.

Instead of asking why she isn’t coping as well as she used to, perhaps we should be asking what has changed and what support might help.

Because being capable for decades doesn’t mean somebody has unlimited capacity.

And a woman shouldn’t have to prove she’s reached breaking point before other people recognise that she needs help.

The Bigger Problem: Women Shouldn’t Have to Discover Their Needs Through Crisis

I think this is one of the most important lessons from the emerging conversation around autism, ADHD and perimenopause.

For some women, midlife becomes the point when they finally begin to understand themselves.

They look back at childhood.

At friendships.

At the jobs they struggled with.

At the routines they needed.

At the exhaustion they couldn’t explain.

And suddenly, experiences that once seemed disconnected begin to make more sense.

For some, assessment eventually confirms autism or ADHD.

For others, difficulties are better explained by perimenopause, sleep problems, other health conditions or a combination of factors.

Either way, women deserve answers based on their individual experiences.

They deserve clinicians who listen.

They deserve appropriate support.

And they deserve to understand what’s happening to their bodies and minds without being made to feel that they’ve simply stopped trying hard enough.

A Message to Every Woman Who Feels She’s Suddenly Falling Apart

If you’ve spent your entire life being the person everybody relies on, this is for you.

The woman who always remembers.

The woman who always organises.

The woman who smiles even when she’s overwhelmed.

The woman who puts everybody else’s needs before her own.

The woman who has become so skilled at coping that nobody notices how hard she’s working.

And now, perhaps for the first time, you’re finding things genuinely difficult.

You’re exhausted.

You’re overwhelmed.

You’re struggling with tasks that once felt manageable.

And you’re starting to question yourself.

Please don’t assume this means you’re failing.

There may be very real reasons why everyday life has become harder.

And whether those reasons involve perimenopause, autism, ADHD, burnout or something else entirely, you deserve to have them properly explored.

You deserve support that reflects your actual needs.

Not simply another reminder to be more organised, more patient or more resilient.

Because sometimes a woman doesn’t suddenly become less capable.

Sometimes the life she’s spent decades holding together has been asking more of her than anyone ever realised.

And now she needs somebody to recognise that.

Let’s Start a Conversation

I’d genuinely love to hear from women who’ve experienced this.

Did you begin questioning whether you might be autistic or have ADHD during perimenopause?

Were you already diagnosed but noticed changes in your concentration, emotional regulation or sensory experiences?

Or are you a SEND mum navigating menopause while continuing to support your own neurodivergent children?

What changed for you, and what do you wish somebody had explained earlier?

Please share your experiences in the comments.

Because sometimes the most powerful thing we can do is help another woman realise that the difficulties she’s experiencing deserve understanding, investigation and support.

And if this article reminds you of somebody, please share it.

You never know who might finally feel understood after reading it.

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Oliver Lee is the founder of AskEllie.co.uk, supporting SEND families, neurodivergent people, disabled people and unpaid carers.

This article is intended for information and awareness. It is not a diagnostic tool or a substitute for professional medical advice. Autism and ADHD are neurodevelopmental conditions; perimenopause does not cause them.

I want to talk about something that I believe deserves far more attention.

The physical health of SEND mums.

Not just their mental health. Not just the stress, anxiety and emotional exhaustion that so many experience.

I’m talking about their actual physical health.

The mums living with persistent pain.

The mums who wake up exhausted before the day has even started.

The mums struggling with migraines, muscle stiffness, joint pain, brain fog and fatigue that doesn’t disappear after a night’s sleep.

And the mums who’ve been diagnosed with conditions such as fibromyalgia, ME/CFS or other chronic illnesses while continuing to care for children with significant additional needs.

Because what happens when the person holding everything together starts becoming unwell herself?

As a SEND dad raising two neurodivergent boys alongside my wife, Rebecca, I’ve seen how demanding family life can become when your children need additional support.

And I know our family isn’t alone.

For many SEND parents, the demands don’t end when the school day finishes.

Sometimes the school day barely begins.

Sometimes the night is more exhausting than the day.

And sometimes parents find themselves living in a constant cycle of caring, worrying, advocating and trying to recover just enough energy to do it all again tomorrow.

But there’s an important question we need to ask.

Could years of caring without adequate support be affecting parents’ physical health more seriously than we realise?

The research suggests that the physical health of unpaid carers deserves considerably more attention.

What the Research Actually Shows

In October 2025, Carers UK published its State of Caring report, drawing on the experiences of more than 10,500 unpaid carers.

The findings painted a concerning picture.

Among survey respondents:

• 42% reported that their physical health had suffered because of caring.
• 30% described their physical health as bad or very bad.
• 74% said they had felt stressed or anxious.
• 65% struggled to get a good night’s sleep because of caring.
• 43% felt lonely.
• 59% had lost touch with family or friends because of their caring responsibilities.
• 20% reported experiencing an injury because of caring.

These figures concern unpaid carers generally, including people caring for older or ill relatives, not exclusively SEND parents.

But they demonstrate something important.

Caring is not simply an emotional responsibility. It can place significant demands on people’s physical health, relationships and everyday lives.

And the evidence doesn’t stop there.

A 2026 Study Found That Parents of Disabled Children Face Greater Physical Health Challenges

A systematic review and meta-analysis published in the April 2026 issue of Disability and Health Journal examined physical health differences between caregivers of children with and without disabilities.

Researchers reviewed 28 studies.

Of the 36 independent groups included, 30 reported significantly poorer physical health among caregivers of children with disabilities.

The pooled analyses also found a statistically significant difference in physical health, with musculoskeletal health problems showing a particularly strong association.

In plain English?

The evidence suggests that parents caring for disabled children are more likely to experience poorer physical health than parents of children without disabilities.

That doesn’t mean every SEND parent will become unwell.

And it doesn’t mean the child’s disability is directly responsible for a parent’s illness.

Caregiving circumstances, access to support, existing health conditions and many other factors can all play a role.

But the findings reinforce something many parents have been saying for years.

Their health is suffering, and they need more support.

Fibromyalgia: Why Are SEND Mums Talking About It?

Fibromyalgia is a long-term condition associated with widespread pain, fatigue, sleep difficulties and problems with concentration and memory.

Some people also experience headaches, digestive symptoms, heightened sensitivity to pain and difficulties with everyday activities.

The NHS explains that fibromyalgia is thought to involve changes in how the nervous system processes pain signals.

Its exact cause remains unknown.

Physical or emotional stress can sometimes be associated with the onset of symptoms, and stress can make existing symptoms worse.

But it’s important to be clear about something.

There is currently insufficient evidence to establish that SEND mums are experiencing a specific rise in fibromyalgia diagnoses, or that caring for a disabled child directly causes the condition.

That distinction matters.

However, when we look at the wider research into unpaid caring, poor sleep, stress and chronic physical health difficulties, there are legitimate reasons to investigate the experiences of SEND mothers further.

And importantly, fibromyalgia is a genuine medical condition.

It should never be dismissed as somebody simply being stressed or failing to cope.

What Years of Broken Sleep Can Do

I can speak personally about this one.

For more than ten years, my autistic son has experienced significant anxiety around sleeping independently.

I’ve often needed to sit beside him until he falls asleep, and broken nights have become a familiar part of our lives.

Over time, that lack of consistent sleep affects you.

Your concentration.

Your patience.

Your memory.

Your energy.

Your ability to recover from an already exhausting day.

And for some SEND families, sleep difficulties are only one part of the picture.

Parents may also be waking throughout the night to help children with medical needs, distress, toileting, sensory difficulties or anxiety.

Imagine experiencing that not for a few weeks, but for years.

Research into sleep deprivation consistently shows that inadequate sleep can negatively affect physical and mental functioning.

And Carers UK’s findings suggest that disrupted sleep is a widespread issue among unpaid carers.

Yet we rarely hear serious conversations about what long-term sleep disruption is doing to the health of the parents providing that care.

Instead, we often hear:

“You need to get more sleep.”

But how?

How do you get more sleep when the person you’re caring for needs you throughout the night and there’s nobody available to take over?

That’s the conversation we should be having.

When Chronic Stress Becomes Part of Everyday Life

I think people sometimes misunderstand what stress looks like for SEND families.

It’s not necessarily one particularly difficult day.

It’s the accumulation of hundreds of difficult days.

Waiting months for assessments.

Challenging decisions about an EHCP.

Trying to secure appropriate educational provision.

Managing school attendance difficulties.

Worrying about your child’s future.

Attending appointments.

Navigating benefit applications.

Managing financial pressures.

And trying to maintain a relationship, family life and possibly employment alongside everything else.

For some families, these demands continue for years.

Chronic stress can affect sleep, contribute to headaches and muscle tension, and worsen symptoms of certain existing health conditions.

But this doesn’t mean every long-term illness can be explained by stress.

And it would be wrong to suggest that fibromyalgia, ME/CFS or other complex conditions are simply the result of parents becoming overwhelmed.

Those conditions have distinct clinical considerations and deserve proper medical assessment.

The issue isn’t that SEND mums are somehow less capable of handling stress. It’s that many are living with an extraordinary level of responsibility without the support needed to make that responsibility sustainable.

The Health Problems Parents Are Too Busy to Investigate

Here’s another part of the research that genuinely concerns me.

During Carers Week in June 2025, Carers UK reported findings showing that 43% of current or former carers surveyed had experienced a physical or mental health condition developing or becoming worse since taking on caring responsibilities.

And among people currently caring, 40% said they had cancelled a medical appointment, treatment, test, scan or therapy because of their caring responsibilities.

Think about that.

People responsible for looking after somebody else’s wellbeing are missing opportunities to look after their own.

And I wonder how many SEND mums reading this will recognise that experience.

The GP appointment you’ve put off.

The symptoms you’ve been meaning to investigate.

The exhaustion you’ve started to accept as normal.

The pain you’ve learnt to work around.

The medical appointment you’ve cancelled because your child couldn’t attend school that day.

At what point does caring for everybody else mean we stop looking after ourselves?

And what happens when those neglected health problems become more serious?

Could Some SEND Mums Be Living With Undiagnosed Conditions?

It’s possible that some parents are attributing symptoms to exhaustion or stress when there is an underlying health condition requiring assessment.

Persistent fatigue, widespread pain, disturbed sleep and cognitive difficulties can occur for many reasons.

These may include fibromyalgia, thyroid disorders, iron deficiency, inflammatory conditions, sleep disorders, ME/CFS or other medical problems.

The symptoms overlap, which is one reason self-diagnosis can be misleading.

The NHS advises people who suspect fibromyalgia to speak to their GP.

There is no single diagnostic test for fibromyalgia, and clinicians may need to investigate other conditions that could explain the symptoms.

This is particularly important for parents who’ve spent years prioritising their children’s medical needs.

Being a carer doesn’t mean you should automatically accept pain, exhaustion or deteriorating health as an unavoidable part of life.

Your symptoms matter.

And you deserve to have them taken seriously.

Why Respite Is About More Than Giving Parents a Break

When people hear the word respite, they sometimes imagine a parent wanting a weekend away or a few hours to themselves.

And there is nothing wrong with either of those things.

But for some families, suitable short breaks and practical caring support can play a much more fundamental role.

They may create opportunities for parents to sleep, attend medical appointments, maintain employment, spend time with other children or simply recover physically.

Yet accessing suitable support can be difficult, particularly when a child has complex needs or struggles with unfamiliar people and environments.

A parent cannot necessarily leave their child with a friend, relative or ordinary babysitter.

And support needs to be appropriate for the child, not simply available in theory.

In England, parents caring for disabled children can ask their local authority about a parent carer’s needs assessment under the Children and Families Act 2014.

The assessment should consider matters including the parent’s wellbeing and whether they are able and willing to continue providing care.

Families can also ask children’s services about short-break provision and the support available in their local area.

Support arrangements differ across the UK’s nations, so families should check the framework that applies where they live.

Respite isn’t about wanting time away from your child. It’s about making sure the whole family has the support needed to remain healthy and safe.

Five Things SEND Mums Shouldn’t Have to Feel Guilty About

1. Asking for help

You are not failing because caring has become too much to manage alone.

Support exists precisely because some responsibilities cannot reasonably be carried by one person indefinitely.

2. Putting your own health first occasionally

Your GP appointment matters.

Your treatment matters.

Your sleep matters.

And your physical wellbeing should never be considered less important simply because somebody else depends on you.

3. Admitting you’re exhausted

Being exhausted doesn’t mean you don’t love your child.

It means you’re exhausted.

Those are two entirely different things.

4. Needing proper breaks

Rest isn’t something you have to earn by reaching breaking point.

If you need support to recover, that need deserves to be recognised.

5. Wanting a life outside caring

You are a parent.

You may also be a partner, friend, professional, daughter, sister or somebody with ambitions and interests entirely separate from your caring responsibilities.

Those parts of your identity still matter.

What Needs to Change?

We need to stop treating the deteriorating health of unpaid carers as an inevitable consequence of caring.

That means taking their experiences seriously and addressing the barriers that prevent them from accessing support.

There are several areas that deserve particular attention.

Better identification of unpaid carers in healthcare. GPs and other professionals should be aware when a patient has substantial caring responsibilities, especially when those responsibilities affect their ability to access appointments or follow treatment.

Accessible, appropriate short-break services. Families need practical options that genuinely meet their children’s needs rather than services they cannot safely or realistically use.

Earlier support for SEND families. Delays in assessments, educational provision and appropriate help can add avoidable pressure to family life.

More attention to physical health. Discussions about carer wellbeing should include chronic pain, sleep problems, fatigue and other physical symptoms, rather than focusing solely on mental health.

Research specifically examining SEND parents. We need better evidence about the prevalence of individual health conditions, including fibromyalgia, among parents of disabled children, and how factors such as sleep, caring hours and access to support may influence outcomes.

Because what the existing evidence tells us is concerning enough.

And what it doesn’t yet tell us deserves investigation.

My Message to Every SEND Mum Reading This

I know many of you will read this and recognise parts of your own life.

Perhaps you’ve spent years struggling to sleep.

Perhaps you’ve developed unexplained pain.

Perhaps you’ve been diagnosed with fibromyalgia or another chronic condition.

Or perhaps you’re simply exhausted and can’t remember the last time somebody asked how you were feeling.

I want to make one thing clear.

Your health isn’t an afterthought.

You are not just the person attending the appointments, answering the school emails and keeping everybody else’s life running.

You are somebody whose wellbeing matters in its own right.

And if you’re experiencing persistent pain, unusual fatigue or symptoms that are getting worse, please seek medical advice.

Don’t assume it’s simply something you have to live with because you’re a SEND mum.

You deserve answers.

You deserve care.

And you deserve support.

The Question We Should All Be Asking

We spend so much time discussing what our children need.

Their education.

Their healthcare.

Their independence.

Their future.

And rightly so.

But what happens when the parents responsible for supporting those children are becoming increasingly unwell themselves?

What happens when the mum who keeps everything going can no longer manage because her own physical health has deteriorated?

We shouldn’t have to wait until SEND mums become patients themselves before we start taking their wellbeing seriously.

And perhaps instead of constantly asking parents to become more resilient, we should be asking why so many are being left to carry so much without adequate support.

Because the goal isn’t simply to help families survive another difficult day.

It’s to make sure the people caring for our children are healthy, supported and able to have a future of their own.

I’d Like to Hear Your Experiences

To every SEND mum reading this:

Have you been diagnosed with fibromyalgia, chronic pain, ME/CFS or another long-term health condition?

Did your symptoms begin or worsen during the years you’ve spent caring?

Have you struggled to access medical appointments because of your child’s needs?

And perhaps most importantly:

Do you feel that anybody is genuinely looking after your health while you’re looking after everybody else?

Please share your experiences in the comments.

Your story may help another parent recognise that their symptoms deserve attention.

And it may help us start a much bigger conversation about the physical health of SEND families.

---

Oliver Lee is the founder of AskEllie.co.uk, a platform supporting parents of children with special educational needs and disabilities, unpaid carers and disabled people.

This article provides general information and discussion of research. It does not establish that caring causes fibromyalgia or any other individual medical condition and is not a substitute for medical assessment.

Because sometimes the mums who seem to be holding everything together are the ones who need someone checking in on them the most.

By Oliver Lee | Founder of AskEllie.co.uk | SEND Dad

If you have a friend who’s raising a child with autism, ADHD or additional needs, I want to ask you to do something today.

Check in on her.

Not just once. Not just when she’s visibly struggling. But regularly.

Because there’s something about being a SEND parent that people don’t always understand.

You can be surrounded by people, have a family you love more than anything in the world, and still feel incredibly alone.

And for many SEND mums, that loneliness isn’t because they don’t have friends.

It’s because their lives have become so different from everyone else’s that maintaining those friendships can feel almost impossible.

The Mum Who Slowly Disappeared From Her Friendships

Think about the mum who used to come out for coffee.

The one who attended birthday parties, arranged playdates, went out for dinner and always seemed to have time for everyone.

Now she barely replies to messages.

She cancels plans.

She doesn’t come to social events.

And sometimes, weeks or even months pass without anyone hearing from her.

It’s easy to assume she’s lost interest.

But what if she’s simply exhausted?

What if she’s spent the entire night awake with a frightened child?

What if she’s just finished another exhausting meeting with school?

What if she’s spent the day managing her child’s anxiety, sensory difficulties or emotional distress?

What if she’s trying to keep her family functioning while quietly struggling herself?

Sometimes SEND mums don’t disappear because they want to. They disappear because they’re using every bit of energy they have just to get through the day.

And the sad reality is that the longer they’re absent, the less people tend to invite them.

Eventually, the invitations stop altogether.

When Your Child’s Needs Make Everyday Life Unpredictable

One of the hardest things about raising a child with additional needs is that you can’t always predict what tomorrow will look like.

Some days, your child is happy, settled and managing beautifully.

Other days, everything feels overwhelming.

A change in routine.

A difficult school day.

An unexpected noise.

A sensory issue.

Anxiety about leaving the house.

A night without enough sleep.

Something that another family might consider a small inconvenience can sometimes have a much bigger impact on a child who struggles with emotional regulation, communication or sensory processing.

And when a child becomes overwhelmed, it’s often their mum who has to help them through it.

That can mean cancelling plans at the last minute, leaving somewhere unexpectedly or simply being unable to commit to anything in advance.

It’s important to remember that autistic children and children with additional needs develop at different rates and have different strengths and challenges.

Some may need additional support with communication, understanding, emotional regulation or independence, even when they appear to be coping well in other areas.

And those needs can change from day to day.

It’s not necessarily that a SEND mum doesn’t want to see you. Sometimes she genuinely doesn’t know whether she’ll be able to leave the house until the moment arrives.

The Exhaustion People Don’t See

I’m a SEND dad raising two neurodivergent boys alongside my wife, Rebecca.

And I know from our own experiences just how exhausting family life can become when your children need additional support.

I’ve spoken openly about the difficulties we’ve experienced with our son’s sleep and separation anxiety.

For more than ten years, I’ve often needed to sit beside him while he falls asleep.

That has had an enormous impact on my own sleep, my concentration, our routines and the time Rebecca and I get to spend together.

And sleep is just one part of our experience.

Now imagine combining that with school meetings, assessments, appointments, paperwork, fighting for appropriate support and the constant worry about your child’s future.

For many parents, there’s no real opportunity to switch off.

Even when they’re sitting down, their minds are still working.

Thinking about tomorrow.

Thinking about school.

Thinking about the next appointment.

Wondering whether they’re doing enough.

Wondering whether things will ever become easier.

And sometimes, the exhaustion isn’t just physical.

It’s the emotional weight of constantly being responsible for making sure somebody else is OK, while rarely having the opportunity to ask yourself the same question.

Please Don’t Mistake Silence for Not Caring

This is something I really want friends and family members to understand.

When a SEND mum doesn’t reply to your message, please don’t automatically assume she’s ignoring you.

When she cancels another arrangement, try not to take it personally.

When she declines an invitation, please don’t stop asking.

Because there may be a very different story happening behind closed doors.

She may have spent hours helping her child through a period of distress.

She may be recovering from another sleepless night.

She may be dealing with a school that doesn’t understand her child’s needs.

Or she may simply have reached the end of another day with absolutely nothing left to give.

And sometimes, replying to a message can feel like one more demand when she’s already completely overwhelmed.

The friendship still matters to her. She just might not have the capacity to show it in the way she once did.

The Guilt That Comes With Being a SEND Mum

There’s another part of this conversation that deserves more attention.

Guilt.

The guilt of cancelling plans.

The guilt of not spending enough time with your partner.

The guilt of feeling exhausted.

The guilt of not giving siblings enough attention.

The guilt of wondering whether you could have handled a difficult situation differently.

And sometimes, the guilt of desperately wanting an hour to yourself.

We need to stop making parents feel that loving their children means they should never struggle.

You can love your child unconditionally and still find aspects of parenting incredibly difficult.

You can be grateful for your family and still miss the freedom you once had.

You can want the very best for your child and still need somebody to look after you occasionally.

Those feelings aren’t contradictions.

They’re part of being human.

And parents shouldn’t have to pretend they’re coping perfectly before they deserve understanding.

Seven Things Friends and Family Can Do That Genuinely Help

You don’t need to be an autism specialist or understand every aspect of SEND to be a good friend.

Sometimes the most meaningful support comes from the simplest things.

1. Keep inviting her, even when she says no.

She might not be able to make it this week, next week or even next month.

But knowing she hasn’t been forgotten matters.

Try saying: “No pressure at all, but we’d love to see you whenever you’re able.”

2. Ask how SHE is, not just how her child is.

So many conversations with SEND parents focus entirely on their children’s needs.

Sometimes it’s nice to be reminded that somebody sees you as a person too.

Ask how she’s sleeping, how she’s coping or whether she’s had any time for herself.

And be prepared to listen to the answer.

3. Don’t immediately offer parenting advice.

Unless she’s asked for suggestions, try not to jump straight into telling her what she should be doing differently.

You might genuinely mean well.

But she’s probably already spent years trying different approaches, seeking professional advice and learning what works for her child.

Sometimes she doesn’t need another solution.

She just needs someone to say, “That sounds really hard.”

4. Offer practical help rather than saying, “Let me know if you need anything.”

When someone is overwhelmed, asking for help can become another task.

Instead, offer something specific.

“I’m going to the supermarket. Can I pick anything up?”

“Would it help if I dropped dinner round?”

“Do you fancy a coffee at home instead of going out?”

Practical help should always be offered without pressure and with an understanding of the child’s routines and needs.

5. Be flexible with plans.

A SEND family might need to leave early, change arrangements or cancel unexpectedly.

Try not to make them feel guilty.

Sometimes being included in a flexible, understanding way can make socialising feel possible again.

6. Remember that her child’s needs may not be obvious.

Not every disability is visible.

A child who appears confident or happy in one environment may struggle considerably in another.

Please don’t assume that because you’ve seen a child coping well, the parent must be exaggerating their difficulties.

Listen to what the family tells you about their experiences.

7. Don’t disappear when things become difficult.

It’s easy to be present when life is going well.

But the friendships that mean the most are often those that survive the difficult periods.

You don’t have to fix everything.

You don’t even have to know what to say.

Sometimes just being there is enough.

What SEND Mums Wish Other People Understood

I think one of the biggest misunderstandings is the assumption that SEND parents simply need to become better organised, more consistent or stricter with their children.

But the challenges families experience aren’t always solved by changing a bedtime routine or introducing another reward chart.

Some children experience profound anxiety.

Others have significant sensory needs, communication difficulties or developmental differences.

Some require support well beyond what would ordinarily be expected for their age.

And in many cases, families are navigating those challenges while struggling to access suitable professional help.

Every autistic child is different.

Every SEND family is different.

And what works beautifully for one child might be completely inappropriate for another.

That’s why compassion and curiosity are so important.

Instead of asking, “Why can’t she just manage?”

Perhaps we should be asking:

“What is she having to manage that I don’t see?”

And What About the Mum Behind It All?

This is the part I really want people to think about.

Behind every appointment, school meeting, difficult bedtime and carefully managed routine, there’s a parent.

A person who had interests before becoming a mum.

Who had

School Says “We Can’t Help Until Your Child Has an EHCP”? Here’s What SEND Parents Need to Know

One of the most frustrating things a SEND parent can hear is:

“We can’t provide that support until your child has an EHCP.”

Sometimes it comes when a child is already struggling.

They may be unable to cope in lessons, experiencing sensory overload, becoming increasingly anxious, masking throughout the school day or beginning to struggle with attendance.

Parents ask what support can be put in place.

And the conversation somehow comes back to:

“They don’t have an EHCP.”

But there is something really important parents need to understand:

No EHCP does NOT mean no SEN support

Mainstream schools already have legal responsibilities towards pupils with special educational needs.

One particularly important duty comes from Section 66 of the Children and Families Act 2014.

It says that certain schools and settings must use their:

“best endeavours to secure that the special educational provision called for by the pupil’s or student’s special educational needs is made.”

In simple terms:

A mainstream school cannot simply ignore a child’s identified SEN because they don’t have an EHCP.

Children and Families Act 2014 – Section 66

What does “best endeavours” actually mean?

This wording matters.

Section 66 doesn’t mean that a parent can request absolutely any provision and the school automatically has a legal obligation to provide it.

That’s not what the law says.

But it does place a real duty on schools covered by the provision to use their best endeavours to secure the special educational provision called for by the child’s SEN.

So if your child is clearly struggling, the conversation shouldn’t simply stop at:

“They don’t have an EHCP.”

The questions should become:

What are this child’s needs?

What support are we currently providing?

Is that support working?

What else can reasonably be done?

And if the child’s needs cannot adequately be met through SEN Support:

Do we now need an EHC needs assessment?

Your child doesn’t necessarily need a diagnosis first either

This is another misconception families encounter.

Parents can sometimes be left with the impression that nothing substantial can happen until their child has received a formal diagnosis of autism, ADHD or another condition.

But SEN support is based on a child’s special educational needs, not simply whether they have acquired a particular diagnostic label.

The SEND Code of Practice explains that where a pupil is identified as having SEN, schools should take action to remove barriers to learning and put effective special educational provision in place. 

That matters enormously when families can face lengthy waits for diagnostic assessment.

A child’s needs don’t disappear while they’re sitting on a waiting list.

What should SEN Support look like?

The SEND Code of Practice describes a graduated approach commonly known as:

Assess → Plan → Do → Review

That is important because SEND support shouldn’t simply consist of trying one strategy indefinitely.

Assess

What difficulties is the child experiencing?

What are their strengths?

What is preventing them from accessing learning?

What are parents seeing?

What is the child communicating?

Plan

What support or adjustments are going to be put in place?

What outcome are we trying to achieve?

Who is responsible?

Do

Put that support into practice.

Review

Did it actually work?

If not, what needs to change?

Then the cycle continues.

The whole point is that provision should respond to the individual child, rather than waiting until their difficulties become severe enough to trigger a crisis.

“But the school says it doesn’t have the money”

This is where things become more complicated.

Schools operate within budgets.

Resources are not unlimited.

And Section 66 doesn’t magically create unlimited funding or mean every requested intervention must immediately be provided.

But lack of an EHCP is not, by itself, an explanation for doing nothing.

If a child’s needs are becoming increasingly significant and the school genuinely believes it cannot provide the level of support required through its existing resources and SEN arrangements, that raises another question:

Does this child need an EHC needs assessment?

You don’t have to wait for school to request an EHC needs assessment

This is something I wish more parents knew earlier.

Parents can make the request themselves.

Under Section 36 of the Children and Families Act 2014, a parent, young person or certain other people can ask the local authority to carry out an EHC needs assessment.

The legal test at this stage is whether:

1. the child or young person has or may have SEN, and
2. it may be necessary for special educational provision to be made through an EHCP.

Notice the wording.

It isn’t:

“School has tried absolutely everything.”

It isn’t:

“The child already has a diagnosis.”

And it isn’t:

“The SENCO agrees.”

The statutory test is whether the child has or may have SEN and whether it may be necessary for provision to be made through an EHCP.

Children and Families Act 2014 – Section 36

When might an EHC needs assessment become important?

Every child is different, but parents might start considering it when there is evidence that the child’s needs are becoming difficult to meet through ordinary SEN Support.

For example:

A child may require substantial or highly individualised support.

Their difficulties may persist despite interventions.

Their attendance may be deteriorating because they cannot cope with the school environment.

Multiple professionals may need to become involved.

The child may need provision that requires detailed coordination across education, health or care.

Or the school itself may acknowledge that the support required goes beyond what it can ordinarily provide.

None of those examples automatically guarantees an EHCP.

But they can be relevant when considering whether an assessment may be necessary.

Start getting things in writing

This is one of the most practical pieces of advice I can give SEND parents.

If important conversations are happening verbally, follow them up by email.

If you’re told:

“We can’t provide that without an EHCP.”

You could respond calmly:

“Thank you for discussing this with me. Please could you confirm in writing what SEN Support is currently being provided, what additional provision the school considers my child requires, and whether the school considers it able to meet those needs through its existing SEN arrangements.”

That changes the conversation.

You’re no longer arguing about whether somebody said something.

You’re asking the school to clearly explain:

What does my child need?

What are you providing?

Is it enough?

And:

If it isn’t enough, what happens next?

Keep evidence of what’s actually happening

Parents sometimes feel they need enormous professional reports before they can raise concerns.

Professional evidence can certainly be valuable.

But everyday evidence can matter too.

Keep records of things such as:

• attendance difficulties
• repeated calls to collect your child
• reduced timetables
• meltdowns or shutdowns connected with school
• interventions that have been tried
• exclusions or suspensions
• emails discussing difficulties
• SEN Support plans
• professional recommendations
• evidence of progress — or lack of progress
• changes in your child’s emotional wellbeing
• what happens before and after school.

This can help demonstrate the difference between:

“My child sometimes finds school difficult”

and

“Despite support, my child is consistently unable to access education without substantially greater provision.”

What if school says, “We’re waiting for the EHCP”?

An EHCP process should not become a holding pattern where a child’s existing support simply stops.

The child remains a pupil with needs during the assessment process.

If an EHC needs assessment is underway, continue asking:

What is being provided right now?

Because an assessment itself doesn’t educate your child.

A pending EHCP doesn’t regulate them when they’re overwhelmed.

And paperwork doesn’t replace provision.

What if your child already has an EHCP?

Then the position changes.

Section F of an EHCP should specify the special educational provision required by the child.

And under Section 42 of the Children and Families Act 2014, where an EHCP is maintained, the local authority must secure the special educational provision specified in Section F.

That is one reason the wording of Section F matters so much.

Children and Families Act 2014 – Section 42

If Section F says something vague like:

“access to regular support”

it may be much harder to establish precisely what should be happening than wording specifying the nature, frequency and amount of provision.

That’s why getting an EHCP isn’t necessarily the end of the battle.

The content matters too.

The key distinction every SEND parent should understand

There are really two separate ideas here.

SEN Support

A child doesn’t need an EHCP before a mainstream school begins responding to their identified special educational needs.

EHCP provision

Where a child requires provision that needs to be secured through an EHCP, the statutory plan creates additional legal duties — including the local authority’s Section 42 duty to secure the provision specified in Section F.

Those aren’t the same thing.

And understanding the difference can help parents ask much better questions.

So what should you say if you’re told “nothing can happen without an EHCP”?

Don’t immediately turn the conversation into a confrontation.

Ask:

“What SEN have you identified?”

“What SEN Support is currently in place?”

“What provision does my child need?”

“Which parts of that provision can you currently deliver?”

“What evidence do we have about whether the current support is working?”

And if school believes the child’s needs cannot adequately be met through SEN Support:

“Should we now be requesting an EHC needs assessment?”

Then get the important answers in writing.

The bottom line

An EHCP can be incredibly important for a child who needs one.

But:

NO EHCP DOES NOT MEAN NO SUPPORT.

Schools have existing duties towards pupils with SEN.

Support should respond to need, not simply diagnosis.

And where ordinary SEN Support isn’t sufficient, parents do not necessarily have to wait indefinitely for somebody else to decide when an EHC needs assessment should be requested.

The SEND system is complicated enough already.

Parents shouldn’t also be left believing their child has to reach crisis — or obtain a particular piece of paperwork — before anybody is required to help.

Identify the need.

Put support in place.

Review whether it’s working.

And when it isn’t enough:

escalate.One of the most frustrating things a SEND parent can hear is:

Earlier this year, I stood in Parliament with my son Joshua and spoke directly about the SEND crisis.

I told those in the room something I still believe today:

If we get SEND reform wrong, the consequences for children and families could be enormous.

Nobody I know in the SEND community believes the current system is working well.

Parents wait too long.

Children reach crisis before support arrives.

Schools struggle without sufficient resources.

Families spend years fighting local authorities.

EHCPs can take too long to obtain, and even when a child finally has one, parents can find themselves fighting again to make sure the provision written into it is actually delivered.

The system desperately needs reform.

But reforming a broken system should mean making children’s rights stronger, not reducing some of the protections parents currently rely upon when that system gets things wrong.

And when you look closely at some of the Government’s proposals, there are important changes every SEND parent needs to understand.

The SEND Tribunal could lose an important power

This is one of the proposals that concerns me most.

Under the current system, if a local authority names a school in your child’s EHCP that you believe cannot meet their needs, you can appeal to the SEND Tribunal.

The Tribunal is independent of the local authority.

And importantly, it can order the local authority to change the school named in the EHCP.

That matters enormously.

Because sometimes the dispute isn’t minor.

A parent may believe their child needs a specialist school.

The local authority may believe mainstream can meet their needs.

Or the LA may name one specialist setting while the family has evidence showing that another setting is appropriate.

The Tribunal gives families somewhere independent to put that evidence.

What is the Government proposing instead?

Under the Government’s SEND reform consultation, parents would still have a right of appeal about placement.

That’s important to make clear.

But the Tribunal’s proposed power would change.

If the Tribunal concluded that the local authority’s placement decision was unreasonable, it could quash that decision and require the local authority to reconsider it.

But the Government’s consultation explicitly says:

“the Tribunal will not name the placement for the child.” Consult Education

Think about the practical difference.

Currently, after hearing the evidence, an independent Tribunal can determine that the plan should name a particular placement.

Under the proposal, the Tribunal could instead tell the local authority:

You’ve got this wrong. Go back and reconsider it.

For families who have already spent months or years fighting over placement, that is a significant change.

And parents are entitled to ask:

What happens if the local authority reconsiders and the family still believes the decision is wrong?

Why placement matters so much

For a SEND child, the right school isn’t simply about geography or preference.

The environment itself can determine whether that child can access education.

Think about an autistic child experiencing severe sensory overload in a large mainstream secondary school.

Or a child with significant anxiety who cannot cope with busy corridors and constant transitions.

Or a child who needs specialist communication support throughout their day.

If we misunderstand that child’s needs, we can easily misunderstand what kind of setting they require.

That’s why identifying needs properly matters.

The provision follows the needs.

And the placement needs to be capable of delivering that provision.

The current EHC needs assessment has an important purpose

An EHC needs assessment isn’t supposed to be just another piece of bureaucracy.

It is a legal assessment designed to establish a child’s special educational needs and the provision they require.

Under the current legal test, a local authority must carry out an EHC needs assessment where it considers that the child or young person has or may have SEN and that it may be necessary for special educational provision to be made through an EHCP. Leeds SENDIASS

The assessment can draw together evidence from education, health and other professionals.

Done properly, this can create a detailed picture of the individual child.

What are their needs?

What provision do they require?

How much?

How frequently?

Delivered by whom?

In what environment?

Those details matter.

EHCPs themselves are proposed to change

The Government is not proposing to abolish every EHCP.

That’s an important distinction because there has been a lot of confusing information circulating online.

Instead, the Government proposes introducing nationally defined Specialist Provision Packages for children and young people with the most complex needs.

In future, only children who require the overall support contained within one of these packages would be entitled to an EHCP. Consult Education

For many other children with SEND, support would increasingly be delivered through mainstream provision and a new Individual Support Plan — ISP.

The Government says this will create earlier, more consistent support and reduce the need for families to fight for statutory assessment simply to access help. GOV.UK

Again, the ambition sounds positive.

But parents need to understand what changes.

What is an Individual Support Plan?

An ISP would be produced by the child’s education setting with parents.

It would contain more detailed information about the child’s day-to-day support, including interventions and resources.

Under the proposals, education settings would have a statutory duty to produce them for relevant children. Consult Education

That could absolutely improve accountability for children currently receiving poorly documented SEN Support.

But an ISP is not simply another name for today’s EHCP.

The proposed framework is different.

And that is why SEND families are asking what individual legal protections will exist for children who no longer qualify for an EHCP.

“But parents shouldn’t have to fight tooth and nail”

I completely agree.

Nobody should have to become an amateur SEND lawyer just to educate their child.

Parents shouldn’t have to spend evenings reading legislation.

They shouldn’t need folders containing hundreds of emails.

They shouldn’t have to threaten judicial review simply to get provision delivered.

They shouldn’t have to reach Tribunal repeatedly.

But the reason parents currently use legal remedies isn’t because they enjoy fighting.

It’s because sometimes the system gets things wrong.

That’s the crucial distinction.

The answer to parents having to fight shouldn’t simply be:

remove some of the mechanisms they use to fight.

The answer should be:

build a system that gets decisions right earlier — while retaining meaningful independent protection when it doesn’t.

What about “Experts at Hand”?

This is another major part of the Government’s answer.

Experts at Hand is intended to bring professionals including educational psychologists, occupational therapists, speech and language therapists and specialist teachers closer to mainstream education.

The aim is to identify needs earlier and put evidence-based support in place without children necessarily needing to wait for a diagnosis first. GOV.UK

Again:

I support that principle.

We desperately need earlier intervention.

But there is an obvious question.

Where are all these experts coming from?

If my child cannot cope in a classroom, I don’t simply need somebody to suggest another generic strategy.

I need somebody capable of understanding why they cannot cope.

Is it sensory processing?

Communication?

Anxiety?

Executive functioning?

Autistic burnout?

Learning needs?

The environment?

Or several of those things interacting?

The quality and availability of those professionals will therefore be crucial.

Because a system called Experts at Hand only works if genuine expertise is actually at hand.

We shouldn’t have to choose

This is what frustrates me most about the SEND debate.

It sometimes feels as though parents are being offered a choice between:

Earlier intervention

or

strong legal rights.

Why?

We should demand both.

Give schools more resources.

Train teachers properly.

Put occupational therapists into the system earlier.

Increase speech and language provision.

Train more educational psychologists.

Intervene before school attendance collapses.

Stop children reaching crisis before somebody takes their needs seriously.

Absolutely.

But retain meaningful legal safeguards for those occasions when the system still gets it wrong.

Because it will.

No national standard will eliminate every disagreement.

No package will perfectly describe every child.

No professional will make the right decision every time.

SEND children are individuals.

And when a decision profoundly affects an individual child’s education, families need an effective way of challenging it.

The Government says children’s rights will remain important

It’s important to represent the Government’s position accurately.

The Government says the reforms will provide earlier support, stronger legal duties and nationally consistent provision.

It argues that EHCPs will continue providing statutory entitlements for children with complex needs through Specialist Provision Packages. GOV.UK

It has also proposed transitional protections intended to prevent children losing effective support while the system changes. Education Hub

Those commitments matter.

But parents are entitled to scrutinise whether the detailed legal framework ultimately delivers them.

Because promises and enforceable rights are not necessarily the same thing.

Why I’m speaking about this now

When I stood in Parliament with Joshua, I wasn’t arguing that everything should stay exactly as it is.

Quite the opposite.

Our family knows how badly the existing SEND system can fail children.

I want reform.

I want early intervention.

I want properly funded schools.

I want professionals involved before children reach crisis.

I want parents to stop having to fight tooth and nail.

But I also know something else from our own journey:

when the system gets your child wrong, independent legal protection matters.

That’s why I remain deeply concerned about reforms that could change how individual needs are assessed, who qualifies for an EHCP and what an independent Tribunal can ultimately order regarding placement.

We shouldn’t discover whether those protections were important after they’re gone.

The question I want every SEND parent to ask

Forget the political arguments for a moment.

Ask yourself something very simple:

If the new system gets my child’s needs or placement wrong, what power do I have to put it right?

That is the test.

Not whether the new terminology sounds better.

Not whether a government graphic looks impressive.

Not whether we’re promised earlier intervention.

What happens when the system gets it wrong?

Because that is precisely when rights matter most.

SEND reform must leave children better protected, not less

The existing SEND system needs radical improvement.

But we cannot solve one crisis by creating another.

Earlier intervention and legal protection are not opposites.

National standards and individual needs are not opposites.

Expert support and parental rights are not opposites.

We can — and should — demand all of them.

My message to Government remains the same:

Fix what is broken.

Fund what is missing.

Get genuine expertise to children earlier.

But when a child’s future depends upon a decision made by the system:

don’t weaken the family’s ability to challenge that decision when it’s wrong.

Because SEND reform should mean more support, earlier intervention and stronger outcomes for children.

Not fewer ways to protect them.

Please support the Save Our Children’s Rights campaign

If you haven’t already signed the Save Our Children’s Rights petition, please do.

The campaign is asking for children’s legal rights and protections to remain at the heart of SEND reform.

Whatever happens next, parents need to make sure decision-makers understand that SEND families aren’t resisting change.

We’re asking them to get the change right.

Sign the Save Our Children’s Rights petition

Please sign it, share it with friends and family, and encourage others to understand what’s being proposed.

Our children need SEND reform.

But they also need us to make sure reform doesn’t leave them with fewer protections when the system fails.

“Just wait a minute.”

It sounds like one of the simplest instructions we can give a child.

But think about what we’re actually asking them to do.

How long is a minute?

What exactly are they waiting for?

What happens when the waiting finishes?

And perhaps most importantly:

What are they supposed to do while they’re waiting?

For some autistic and PDA children, waiting can be incredibly difficult. From the outside, it might look like impatience, demanding behaviour or an inability to accept that they can’t have something immediately.

But sometimes there’s much more happening underneath.

The problem might not simply be that your child doesn’t want to wait.

They may not understand how to wait.

Waiting contains a lot of uncertainty

Imagine telling your child:

“We’ll leave soon.”

What does “soon” mean?

Two minutes?

Ten minutes?

Half an hour?

Adults are generally able to tolerate that uncertainty because we’ve developed ways of estimating time, reading situations and occupying ourselves until something happens.

Some neurodivergent children may find those invisible skills much harder.

For an autistic child who relies heavily on predictability, an open-ended wait can feel particularly uncomfortable.

They know something is going to happen.

They just don’t know when.

And uncertainty itself can become stressful.

“Wait a minute” often doesn’t mean a minute

This is another problem.

Adults use incredibly vague language around time.

“Give me a second.”

“We’ll go in a minute.”

“Nearly ready.”

“Won’t be long.”

“Later.”

“Soon.”

None of those expressions necessarily tell a child anything concrete.

If your child interprets language literally, “I’ll be there in a minute” might reasonably mean 60 seconds.

Then five minutes pass.

From our perspective, nothing unusual has happened.

From theirs, the information they were given was wrong.

So they ask again.

“Are we going now?”

“No. I said wait.”

Thirty seconds later:

“Now?”

And before long everybody is frustrated.

Waiting can be particularly difficult with PDA

For some children with a PDA profile, waiting can introduce several pressures simultaneously.

They don’t control when something happens.

They don’t know exactly when the situation will change.

Someone else is determining what happens next.

And there may be an expectation that they simply remain calm until that unknown point arrives.

That combination of uncertainty, loss of control and expectation can sometimes increase anxiety.

What looks like:

“I want it NOW!”

may therefore have something else underneath it:

“I need to know what is happening.”

Adults don’t actually “just wait” either

This is something I think we often forget.

Imagine sitting in a doctor’s waiting room for 40 minutes.

What do you do?

You probably get your phone out.

Scroll social media.

Read the news.

Reply to messages.

Listen to something.

Look around the room.

Maybe talk to whoever came with you.

At an airport, we find a coffee shop.

At a train station, we put headphones in.

Waiting for somebody who’s getting ready, we find something else to do.

Adults have learned how to fill waiting time.

Yet sometimes we tell a neurodivergent child:

“Just wait.”

And expect them to stand there doing absolutely nothing.

Perhaps waiting is a skill we need to make more explicit.

Instead of saying “just wait”, provide the missing information

One of the simplest changes is explaining what is actually happening.

Instead of:

“Wait.”

Try:

“I’m finishing this email. When I’ve sent it, I’ll come and help you.”

Now the child has an identifiable endpoint.

Instead of:

“We’re leaving soon.”

Try:

“We’re leaving after I’ve put these dishes away. Then we’ll get our shoes on and go to the car.”

You’re turning something vague into something more predictable.

Tell them how long when you can

If you genuinely know how long something will take, make it visible.

You might say:

“We need to wait five minutes.”

Some children may find a visual timer useful because they can actually see the waiting period disappearing.

Others might prefer a countdown:

“Ten minutes.”

Then:

“Five minutes.”

Then:

“Two minutes — shoes next.”

But be careful not to promise an exact time when you don’t actually know.

If you’re waiting for a doctor, for example, saying:

“The doctor will call us in five minutes”

could create more distress if 20 minutes pass.

Instead:

“I don’t know exactly when the doctor will call us. We’re waiting for our name, and I’ll tell you as soon as I know anything.”

Sometimes honesty about uncertainty is more helpful than false certainty.

Give them something to do while they wait

This can make an enormous difference.

If waiting is going to happen, immediately pair it with an activity.

“While I’m making dinner, you can play your game.”

“While we’re waiting for the appointment, you can use your tablet.”

“We’re going to be here for a while, so bring your headphones.”

Depending on your child, useful waiting activities might include:

• a tablet or phone
• headphones
• a favourite video
• a book
• drawing
• a fidget
• a small toy
• music
• a game
• a preferred snack where appropriate.

The goal isn’t necessarily to “distract” the child from everything.

It’s helping them understand:

This is what we do during the gap.

Make the sequence predictable

Some children cope much better when they understand not only what they’re waiting for but what happens afterwards.

For example:

“First we wait for the dentist. Then the dentist checks your teeth. Then we’re going home.”

Or:

“Dad is finishing work. You can play your game while you wait. When I’m finished, we’ll get in the car and go to Grandma’s.”

Now the child isn’t floating in an undefined period called waiting.

There’s a sequence.

Now → waiting activity → next thing.

That can make the situation easier to understand.

Preparation can help before the waiting even begins

If you know you’re going somewhere that involves waiting, tell your child beforehand.

You might say:

“We’re going to the doctor. Sometimes doctors run late, so we might have to wait. Let’s take your headphones and tablet.”

That gives your child information before they’re already dealing with the environment.

It also allows them to choose something that might help.

For some children, visual schedules or a simple written sequence may be useful:

Car → Doctor → Wait → Appointment → Home

Different children will need different levels of detail.

Don’t assume repeated questions mean they weren’t listening

This is another common frustration.

You’ve already explained what’s happening.

Then they ask again.

And again.

And again.

“When are we going?”

“Is it nearly time?”

“How long now?”

It can feel as though they’re ignoring everything you’ve said.

But repeated questioning can sometimes be connected with anxiety or a need for reassurance and predictability.

Simply saying:

“I’ve already told you!”

may not address what is driving the question.

Sometimes pointing back to something concrete can help:

“Remember, when the timer finishes.”

or:

“We’re waiting for Mum to come downstairs. Then we’re leaving.”

Waiting isn’t only about time

There is another important point.

A child may cope brilliantly waiting for something they don’t particularly care about but find it almost impossible to wait for something exciting.

Birthday presents.

A favourite activity.

A delivery.

Going on holiday.

Seeing somebody they love.

High excitement can make regulation harder too.

So difficulty waiting doesn’t necessarily mean the child is distressed in the traditional sense.

Sometimes anticipation itself is overwhelming.

What looks like impatience may be missing information

This is probably the biggest takeaway.

When a child struggles to wait, our instinct can be:

“They need to learn patience.”

And perhaps patience is part of it.

But before assuming that, ask:

Does my child know how long they’re waiting?

Do they understand what they’re waiting for?

Do they know what happens afterwards?

Do they have something appropriate to do while waiting?

Is uncertainty making them anxious?

Is the environment already overwhelming them?

Those questions may tell you much more than simply deciding the child is impatient.

Teach waiting rather than repeatedly demanding it

Waiting is something most adults have practised thousands of times.

We’ve developed strategies without even noticing.

Some autistic and PDA children may benefit from those strategies being made explicit.

So instead of:

“You need to learn to wait.”

Try:

“I’m going to help you understand what happens while we wait.”

Give information.

Create predictability.

Offer something to do.

Explain what happens next.

And where possible, remove unnecessary uncertainty.

Because sometimes the child isn’t refusing to wait.

They simply haven’t been given the information or tools they need to know HOW to wait.

---

At AskEllie, we share practical information and lived experience around autism, ADHD, PDA and SEND family life to help parents understand what may be happening underneath behaviour.

Every child is different. Difficulty waiting can have many causes, and the strategies that help one child may not work for another.

If you’re a SEND parent and you’ve been hearing phrases like “Experts at Hand”, “Individual Support Plans” and “Specialist Provision Packages”, you could be forgiven for wondering what on earth is actually happening.

There has been a huge amount of discussion around the Government’s proposed SEND reforms in England.

The Government says it wants to create a system where families receive support earlier, without having to fight “tooth and nail” for it.

That ambition sounds positive.

Most SEND parents would probably agree that children shouldn’t have to deteriorate before somebody finally helps them.

But there is also considerable concern about what happens to the individual legal protections families currently rely upon, particularly EHCPs.

So let’s strip away the political language and explain what is actually being proposed.

First: are EHCPs being abolished?

No — but access to them is proposed to change significantly.

Under the Government’s proposals, EHCPs would remain for children and young people whose needs qualify for a new nationally defined Specialist Provision Package.

The Government says those EHCPs would provide a legal entitlement to the provision contained within that package. GOV.UK

However, the consultation also says:

“only children and young people who need the overall package of support detailed in a Specialist Provision Package will be entitled to an EHCP”

For children whose needs can be supported without one of those packages, the expectation would instead be that their education setting provides support through the new system. GOV.UK

That’s the part many parents are concerned about.

What would replace an EHCP for other children?

One of the new mechanisms is called an:

Individual Support Plan — or ISP.

This is the correct terminology; you may also have seen people mistakenly referring to an “IHCP”.

The Government proposes placing a legal duty on education settings to create ISPs for children receiving targeted or specialist SEND support.

The ISP would record things such as:

• the child’s barriers to learning
• provision
• reasonable adjustments
• intended outcomes.

It would be developed with parents and reviewed at least annually. GOV.UK

That may sound similar to an EHCP.

But they are not the same thing.

An EHCP is currently an individual statutory plan backed by specific legal duties, including the local authority’s duty to secure the special educational provision specified in it.

The proposed ISP is a different mechanism, largely operated at education-setting level.

That distinction is at the heart of much of the current debate.

So what is “Experts at Hand”?

This is one of the Government’s flagship ideas.

The basic principle is actually quite straightforward:

bring specialists closer to children instead of making children wait until they reach crisis before accessing specialist help.

Experts at Hand is being introduced across England from September 2026.

Depending on local provision, mainstream settings will be able to access professionals including:

• educational psychologists
• occupational therapists
• speech and language therapists
• specialist teachers.

Importantly, children will not need a diagnosis before they can benefit from Experts at Hand support. GOV.UK

The Government is investing £1.8 billion over three years in the programme. GOV.UK

And honestly?

There is a lot about that principle that I like.

Early intervention is exactly what SEND families have been asking for

Think about the current experience of many families.

A child starts struggling.

School puts some strategies in place.

Things get worse.

The parent asks for help.

Everyone waits.

The child’s attendance deteriorates.

Their anxiety increases.

The family starts fighting for assessment.

Months pass.

Sometimes years pass.

Eventually the child reaches crisis.

Then suddenly everybody agrees they need specialist support.

That is completely backwards.

If Experts at Hand means an occupational therapist, educational psychologist, speech and language therapist or genuinely knowledgeable specialist can become involved before that child reaches breaking point, that’s potentially a very positive change.

The Government also says Experts at Hand is an additional service and does not currently replace existing EHCP support or statutory duties. GOV.UK

But there’s an enormous question.

Where are all these experts coming from?

This is where I think parents are entitled to ask difficult questions.

Because if my autistic child cannot cope inside a classroom, I don’t simply need somebody to walk into school and say:

“Have you tried a movement break?”

I need somebody capable of understanding:

Why can’t this child cope in this classroom?

Is it sensory overload?

Communication?

Anxiety?

Executive functioning?

The physical environment?

Autistic burnout?

Unmanageable demands?

Or several of these things interacting?

The word “expert” matters.

A job title alone doesn’t necessarily mean somebody has specialist expertise in every presentation of autism, ADHD, PDA, sensory processing or complex SEND.

And there’s another issue.

Many families are already struggling to access some of the professionals Experts at Hand intends to provide.

So parents are reasonably asking:

How many additional professionals will actually be available?

The Government says it will expand the educational psychology workforce, including investment in training more than 200 new educational psychologists per year from 2026 and 2027. GOV.UK

But this is an enormous national programme.

Parents will want to see whether the workforce actually exists to deliver what is being promised.

Why are parents worried about legal rights?

This is probably the most important part to understand.

The concern isn’t necessarily:

“Early intervention is bad.”

It isn’t.

Nor is it:

“Experts in schools are bad.”

They aren’t.

The concern is what happens if access to individually enforceable statutory provision becomes narrower while families are expected to rely more heavily on support delivered through mainstream settings.

The Government argues its reforms will actually strengthen the legal framework by introducing new duties on settings and creating nationally consistent support. GOV.UK

Campaigners are worried that some children who might currently obtain an EHCP could instead receive an ISP without equivalent individual statutory protections.

Those are two different interpretations of the proposed system.

And parents deserve to understand both.

What happens to my child’s existing EHCP?

This is important because there has been a lot of frightening information circulating online.

Nothing suddenly happens to your child’s EHCP today.

The Government’s consultation says the current system, with its existing rights, duties and funding routes, will remain until new legislation takes effect, which is not expected before September 2029.

It also says there will be:

“No changes to support received through EHCPs before at least September 2030.” GOV.UK

Children and young people already in specialist placements are also promised protection for their placement until the end of their education. Consultation Hub

So please don’t panic and think your child’s EHCP disappears next month.

It doesn’t.

But that doesn’t mean parents shouldn’t pay attention to what is being proposed for the future.

Why the Save Our Children’s Rights campaign matters

This is why so many SEND families have been supporting the Protect legal right to support for children with SENDpetition created by autistic young campaigner Tee-Jay Chetwynd.

The petition argues that the reforms could restrict EHCP access and weaken important individual rights.

The Government disputes that characterisation and says its reforms will strengthen legal duties and maintain EHCPs for children with complex needs. Petitions UK

But something significant has now happened.

The petition has passed 100,000 signatures.

As of 30 September, it had more than 104,000 signatures, meaning the Petitions Committee will consider it for debate in Parliament. Petitions UK

That is a significant achievement for the SEND community.

What is Lucy Powell saying?

Since becoming Education Secretary, Lucy Powell has been defending the direction of SEND reform while acknowledging the anxiety surrounding it.

The central Government argument is essentially:

families shouldn’t have to fight for an EHCP simply to make ordinary support happen.

Support should arrive earlier.

Schools should have more resources.

Specialists should be closer to children.

Needs should be identified before they escalate.

Again, those objectives are difficult to disagree with.

The real argument is about how we get there and what protections children retain along the way.

This shouldn’t become “EHCPs versus early intervention”

That’s a false choice.

SEND parents shouldn’t have to choose between:

early help

or

legal protection.

Why can’t we have both?

Put occupational therapists in schools.

Increase educational psychologists.

Improve teacher training.

Provide speech and language support earlier.

Give schools enough money to make genuine reasonable adjustments.

Stop forcing families to wait years before intervention.

Absolutely.

But at the same time, where a child’s needs require individually specified and enforceable provision, parents understandably want confidence that those protections remain available.

What happens if we get this right?

Potentially, something genuinely transformative.

Imagine noticing at seven that a child is struggling.

Instead of waiting until they’re eleven, barely attending school and experiencing severe anxiety, somebody intervenes immediately.

The school gets specialist advice.

The environment changes.

Teachers understand the child’s needs.

Parents aren’t required to become amateur lawyers.

The child remains engaged with education.

That is what early intervention should look like.

But what happens if we get it wrong?

That’s why this matters so much.

If access to statutory protection becomes narrower before mainstream schools and Experts at Hand are genuinely capable of meeting children’s needs, some families fear children could fall into a gap.

Not complex enough for the new EHCP threshold.

But far too complex for ordinary mainstream provision.

Those are precisely the children parents are worried about.

Because SEND families already know what happens when a child falls between thresholds.

They wait.

Their attendance deteriorates.

Their mental health deteriorates.

Their family reaches crisis.

Then everyone asks:

“How did things get this bad?”

The question SEND parents should keep asking

I don’t think the SEND community needs to oppose every reform.

The current system clearly isn’t working properly for far too many families.

Change is necessary.

But parents are entitled to ask:

Who qualifies for an EHCP under the new system?

Who decides whether my child needs a Specialist Provision Package?

What exactly will an ISP legally guarantee?

Who are the Experts at Hand in my area?

How quickly can my child actually see them?

What specialist training will they have?

What happens if their support doesn’t work?

What can I challenge or appeal?

And perhaps most importantly:

What happens to the child who doesn’t fit neatly into either system?

Those questions aren’t parents resisting reform.

They’re parents doing what SEND parents have learned to do:

looking at the detail.

The bottom line

The Government is promising something SEND families have wanted for years:

earlier intervention, more expertise in mainstream schools and less fighting for help.

That deserves serious consideration.

But reassurance alone isn’t enough when you’re redesigning a system that determines children’s education and legal entitlements.

SEND parents need to see the detail.

They need to see the workforce.

They need to understand the safeguards.

And they need confidence that no child will lose meaningful support simply because the name of the plan has changed.

So my position is straightforward:

Earlier help? Yes.

Experts in schools? Yes.

Better mainstream SEND provision? Absolutely.

But before changing children’s existing routes to statutory protection:

prove the replacement can actually deliver.

Because SEND reform isn’t just about reorganising a system.

It’s about what happens to our children when that system gets it wrong.

Help Protect SEND Children’s Rights

If you haven’t already signed the Save Our Children’s Rights petition, please take a moment to do so.

Whatever your view on SEND reform, we believe one principle should remain clear:

Earlier intervention should strengthen support for our children — not come at the expense of their legal rights and protections.

The SEND community has worked incredibly hard to make its voice heard. Please add yours.

Sign the petition, share it with friends and family, and help keep children’s rights at the centre of SEND reform.

Sign the Save Our Children’s Rights petition

Our children need better support. They also need their rights protected.