The SEND Crisis and Our Call for Reform

SEDSConnective
4 days ago
5 min read

An analysis of the 5th SEND Report and the evidence we submitted to ensure complex needs are not overlooked.

The SEND system in England is under immense pressure. Families, schools and local authorities all describe a landscape where needs are rising, pathways are unclear and support is inconsistent. Earlier this year, Jane Green MBE submitted written evidence on behalf of SEDSConnective to support the national inquiry into the SEND Crisis. With the publication of the 5th Report on “Solving the SEND Crisis,” it is timely to reflect on what this crisis represents, the challenges highlighted and why our community’s voice is essential in shaping reform.

What the SEND Crisis Represents

Over the past decade, the number of children and young people identified with special educational needs and disabilities has increased sharply. Needs are also becoming more complex, yet the system designed to support them has not evolved at the same pace. The result is a cycle of:

Long waits for assessment
Inconsistent support between local authorities
Schools stretched beyond capacity
Families left fighting for provision
Children falling out of education entirely

The crisis is not new. Historical reforms, including the Children and Families Act 2014 and the introduction of Education, Health and Care Plans (EHCPs), aimed to create smoother, more coordinated support. Instead, demand rose faster than systems and funding could adapt. The current inquiry acknowledges that the 2014 reforms were not matched with the training, infrastructure, or multi-agency capacity needed to make inclusion work in practice.

What's Changed — and What Still Hasn’t

The 5th SEND Report outlines several long-term issues:

1. A mainstream system that cannot meet diverse needs

Many schools do not have the flexibility, environment or knowledge to support children with complex, overlapping needs.

2. A lack of joined-up work between education, health, and social care

Families still navigate fragmented systems. Without coordinated pathways, children who present with both neurodevelopmental and physiological symptoms fall through the gaps.

3. Pressure on EHCPs

EHCPs have become the only reliable route to support, even for needs that should be met at a local or school level. This has left families waiting months or years for help, while local authorities struggle with unsustainable caseloads.

4. Inconsistent provision across the country

Access to specialist schools, therapies and trained professionals depends heavily on postcode. This inconsistency leaves many families navigating very different levels of support depending on where they live.

The Latest Challenges Highlighted in the 5th Report

The 5th Report identifies several urgent and systemic issues facing the SEND system today:

Rising levels of absenteeism Persistent absence continues to increase across many local areas, with emotionally based school avoidance highlighted as a growing concern. The Report notes that schools and services face difficulties in identifying needs early enough to prevent absence from escalating.
Insufficient specialist training across the workforce Teachers, SENCos, health professionals and social care teams do not consistently receive the depth of training required to meet rising levels of need. This lack of confidence and capacity contributes to delays, miscommunication and uneven provision.
Limited capacity in specialist and alternative provision Many areas face shortages of specialist places, leading to long waits, out-of-area placements and significant pressure on mainstream schools to support children whose needs require more tailored environments.
Inconsistent understanding and identification of complex needs
The inquiry found that children with more complex or overlapping needs often experience delays in assessment and inconsistent levels of support, largely due to the variation in practice and expertise across local authorities and services.

The message is clear: without a more joined-up and consistent system, many children and young people will continue to face barriers to accessing support.

SEDSConnective’s Contribution: What Our Written Evidence Says

Our written evidence, submitted by Jane Green MBE (Reference SEN0842), brings attention to a group of children and young people rarely recognised in national policy discussions: those who are both neurodivergent and have symptomatic hypermobility.

Why this matters Research shows that if you are neurodivergent (Autistic, ADHD, dyspraxic, Tourette's) you are more than double likely to have differences in connective tissue (hypermobility) and more pain, chronic fatigue and dizziness (dysautonomia ) than the general population. If you have Ehlers-Danlos syndromes (EDS) you are 7.4 times likely to be autistic and 5.6 times to have ADHD. Yet the education and health systems largely treat these as separate categories. This leads to:

misdiagnosis / underdiagnosis or misattribution
pain and fatigue being mistaken for behaviour or anxiety
children being labelled as school avoidant rather than physically unwell
attendance absence issues
parents wrongly positioned as “the problem”

Our evidence highlights how symptoms affecting multiple body systems - dizziness, digestive issues, headaches, joint instability, fatigue, soft-tissue injuries - often appear before any neurodivergent diagnosis, yet are rarely recognised within SEND processes. Anxiety is often only understood as a social, emotional, or mental health issue, without recognising that it can have physical and biological causes associated to differences in connective tissue and symptomatic hypermobility. Even after diagnosis, these physical symptoms can be misattributed to school environment or social pressure, rather than recognised as co-occurring health conditions.

This submission follows the written evidence we also provided for the Autism Act review, where we highlighted similar gaps in recognising the connection between neurodivergence and hypermobility.

Our Recommendations and Solutions

SEDSConnective advocates for systemic changes that centre the lived experiences of hypermobile and neurodivergent children and young people:

1. Mandatory training for all school and health staff

Training must cover the connection between neurodivergence and physical health, recognising hypermobility as multisystemic , not simply “bendy joints.”

2. Integrated diagnostic and support pathways

We call for dual or transdiagnostic pathways that recognise the overlap between neurodivergence and hypermobility. At present, children and young people may be referred to CAMHS for mental health, while paediatricians/rheumatologists for support with some connective tissue disorders but no pathway exists to connect them.

3. Adjustments that reflect physiological needs

Schools should adapt timetables, environments and physical education requirements to prevent injury, fatigue and distress.

4. Earlier screening

High absence linked to fatigue, pain or unexplained symptoms should trigger screening for hypermobility alongside neurodevelopmental assessment.

5. A more mixed educational offer

Some children thrive in non-mainstream environments with smaller classes, lower sensory load and built-in flexibility. The system must widen access to specialist and mid-range provision.

6. EHCP reform that reflects the whole child

EHCPs rarely consider physiological symptoms. We propose an integrated biopsychosocial approach that recognises both brain and body needs.

These solutions reflect patterns we see across our membership and align with findings from our collaborations with leading researchers and clinicians.

Why It’s Important for SEDSConnective to Contribute to This Reform

SEDSConnective is a user-led charity. Our evidence is grounded in lived experience, community engagement and emerging research. Children with hypermobility and neurodivergence represent a significant but often invisible cohort within the SEND system. Without our contribution:

Their needs risk being misinterpreted
Their absence data becomes inaccurate
Their voices are lost in national policy
Their families continue to face distressing and preventable barriers
It costs us all more money

Contributing to this inquiry allows us to shape national reform so it reflects real experiences, not assumptions.

What Happens Next: The Path Forward

The 5th Report signals the start of a major phase of reform. The Government is expected to outline next steps for reform, potentially including updates to national standards, early intervention, assessment pathways, and EHCP processes. Strengthening training across education and health with our support, alongside expanding the range of suitable school environments, will be essential to creating a system that recognises the reality of neurodivergent and hypermobile children’s needs.

SEDSConnective will continue to ensure that lived experience remains at the centre of these reforms, so that no child with complex, multisystemic needs is overlooked.

Further Reading