In the coming weeks, the Government is expected to set out its plans to reform the special educational needs and disabilities (SEND) system in England.

For disabled children with complex needs and their families, this is a critical moment. 

Families are clear that the system needs to change to deliver the support their children need to access education. But many are also worried that reform could make things harder, not better. Too often, previous attempts at change have reduced rights or shifted responsibility without fixing the barriers that disabled children face every day. 

At Sense, we have been working with families, the government and other charities to push for the right reforms. Reforms that mean every disabled child can access the support they need, wherever they live, and get an education that truly works for them. 

Why change is needed 

We need to be honest. The SEND system is not working. 

Disabled children with complex needs should be able to expect an ordinary education where they feel safe, supported and part of their school community. Where they can learn, communicate and achieve. For too many families, that is not the reality. 

Education, Health and Care plans (EHCPs) are a vital legal right and must be protected. They give families an entitlement to support. But in practice, the system is fragmented, inconsistent and deeply unequal. 

Families experience a postcode lottery. What support a child receives depends less on what they need and more on where they live or what services exist locally. Too often, families have to fight the system to receive any support. Even when support is written into an EHCP, there is often little accountability to make sure it is delivered, particularly by health and social care services. 

This means children miss out on essential therapy, nursing care or mental health support. Some are unable to attend school at all. 

Workforce shortages make this worse. There are not enough specialist teachers, therapists or healthcare professionals. Training routes are not keeping pace with demand, and vital roles are treated as optional. As a result, children wait months or years for support that has already been agreed by law. Others are sent far from home to access provisions that should exist in their community, often without the transport to get them to school and back. 

The system also relies too heavily on diagnosis to unlock help and too often ignores parents’ expertise. Children face long waits even when their needs are clear. Transitions between education stages and into adulthood are poorly planned, leaving families without support at crucial moments. 

The impact is huge. Parents are pushed into stressful and costly tribunals just to secure basic provision, despite the vast majority of appeals being upheld. Families experience exhaustion, financial strain and declining mental health. Children miss months or years of education, and needs escalate because early support was not there. 

What Sense is doing 

The upcoming White Paper is a chance to reset the system and get this right. 

We have been listening to families to understand what needs to change and what must be protected. We have supported parents to meet ministers leading the reforms, making sure lived experience is heard. We are working with partners, including the Disabled Children’s Partnership, to build clear evidence of what disabled children with complex needs need from reform. 

Above all, we want to make sure the reforms deliver in three key areas:

1.  The legal right to support for all disabled children with complex needs must be protected at all costs. 
2. Greater accountability holding local authorities, education and health and social care bodies to the same standards, with clear and effective routes for redress if those standards aren’t met. 
3.  Clear, long-term workforce strategy for everyone supporting disabled children with complex needs in education.

Our work will not stop when the proposals are published. The Government plans further consultation, and we will continue to represent families’ views throughout. 

We also need to hear from you.

If you are affected by SEND reform, your experience matters. When the reforms are announced, we will be hosting listening sessions with parents and sharing ways you can feed directly into government consultations. 

Together, we can push for a SEND system that removes barriers and delivers the education disabled children with complex needs deserve.