The government recently unveiled its long-awaited SEND reform proposals in the new Schools White Paper, promising a brighter, more inclusive future. Ministers have confidently described these proposals as “a radical expansion in rights for children with SEND.”

Along with the Independent Provider of Special Education Advice (IPSEA), our view is that the Government is proposing to significantly weaken existing SEND legal rights. The existing The SEND Code of Practice: 0 to 25 years is statutory guidance for organisations working with children and young people (0-25) with Special Educational Needs and Disabilities (SEND). It provides legal requirements on duties, policies, and procedures under the Children and Families Act 2014.  For young people with Duchenne Muscular Dystrophy (DMD) this framework provides statutory assessment and provision for an Education Health and Care Plan (EHC Plan) that can provide holistic support from multiple agencies. 

The problem Duchenne families face is that this legislation has not been properly resourced and implemented across the UK. Parents have been  increasingly forced to Tribunal appeals to make Local Authorities comply as we have seen school funding cutback.

Here is why the new White Paper  misunderstands complex SEND, and why young people with DMD require mandatory, legally binding Education, Health and Care (EHC) Plans from the moment of diagnosis.

The IPSEA Critique: Stripping Away Legal Protections

Legally enforceable protections cannot be replaced by reassurances that schools will simply “provide what children need.” Good intentions do not buy powered wheelchairs, fund 1:1 support, or mandate multi-agency health interventions.

As IPSEA’s campaign powerfully highlights, the proposals risk weakening several vital, hard-won protections for children and young people with SEND:

• The right to provision based on an individual child’s needs: The White Paper proposes a shift towards standardised “Specialist Provision Packages” (SPPs). This moves the system away from asking “What does this specific child need?” to “Which pre-funded box does this child fit into?” Individual children with complex conditions rarely fit easily into standardised national templates.
• The right to enforceable provision: The government plans to move many children from legally binding EHC plans to Individual Support Plans (ISPs). While ISPs are being touted as a new statutory duty for schools, they appear to have absolutely no clear mechanism for legal enforcement. A plan without enforceable provision is not a protection; it is merely a suggestion.
• The right to an EHC needs assessment and plan: The proposals suggest restricting EHCP eligibility to children with undefined “complex needs,” raising the threshold for support and leaving families in the dark about who qualifies.
• The right to request a suitable school or college placement: The reforms appear to reduce the SEND Tribunal’s power to name a specific educational placement, limiting families’ ability to secure the specialised setting their child desperately needs, often forcing them to choose from a restricted, cost-saving local authority list.

SEND legal rights must remain as a backstop, regardless of any welcome improvements in mainstream inclusion. For a child with Duchenne Muscular Dystrophy, that backstop ensures it has a means of survival in the education system.

The Complex Reality of Duchenne Muscular Dystrophy

To understand why standardised “Specialist Provision Packages” and unenforceable “Individual Support Plans” are likely to fail, we must look at the reality of Duchenne Muscular Dystrophy.

DMD is a severe, progressive genetic muscle-wasting condition. Typically diagnosed in boys between the ages of three and five, it leads to a gradual loss of mobility, profound extreme fatigue, and eventual reliance on respiratory and cardiac support.

The SEND needs of a young person with DMD are not static. They are complex and constantly evolving, requiring:

• Extensive Physical Adaptations: Powered wheelchairs, specialized seating, hoists, and fully accessible environments that often require significant capital building works at schools.
• Seamless Health Integration: Expert Neuromuscular Centre assessment including advanced medication, cardiology, respiratory, endocrinology, physiotherapy with 6 monthly reviews, local paediatric assessment,  daily physiotherapy, fatigue management, and emergency protocols that must be woven into the school day.
• Social Care: Assessment from the disability social work team, short breaks, domiciliary care, disabled facility grants, Motability vehicles
• Cognitive and Psychological Support: Adjustments for specific learning differences, ADHD, ASD, Executive Function that often accompany DMD, alongside critical psychological assessment and support for navigating a life-limiting diagnosis.

Why DMD Demands a Mandatory EHCP from Diagnosis

Under the proposed reforms, a child diagnosed with DMD at age four might be handed an unenforceable ISP and told to “wait and see” until their physical decline hits the arbitrary threshold of “complex needs” to qualify for an EHCP. Or the assessment for cognitive and psychological support remains poorly understood.

This is unacceptable. Young people with Duchenne Muscular Dystrophy require a mandatory EHC Plan triggered immediately upon diagnosis. Here is why:

1. Anticipation, Not Reaction: Despite improvements in treating DMD it remains relentlessly progressive. Physical adaptations and transition planning must take place well in advance and have resources made available. Support must be anticipatory.
2. Multi-Agency Mandates: An ISP drawn up by a school cannot legally compel a local health trust to provide a neuro-muscular physiotherapist or occupational therapist. An ISP will not provide the complex assessment of SEND required to understand the learning, communication, social emotional needs needs of young people with DMD.  An EHCP is the only legal mechanism that forces education, health, and social care to collaborate and fund a child’s holistic needs.
3. Standardised Packages Cannot Accommodate Progressive Decline: A generic “Specialist Provision Package” (SPP) designed for a general physical disability will not capture the highly individualised, sudden changes a child with DMD experiences during growth spurts or periods of rapid muscle loss. Boys with DMD will require multiple packages that might also identify SEND for learning, communication and social emotional and mental health needs. They need provision tailored to them, not a cohort.

The Bottom Line

You cannot standardise a progressive, life-limiting disease. If the government truly wants a “radical expansion in rights,” they must start by protecting the ones disabled children already have. Replacing individualised, legally enforceable rights with rigid packages and unenforceable school-level plans will push children with Duchenne out of the education system.

We must stand with IPSEA and the Campaign demand that the legal foundations of SEND support are strengthened, not diluted. For conditions like Duchenne, an EHCP isn’t a “last resort”—it is the only way forward from day one.

Action

The Government have given until 18th May 2026 for consultation on the SEND Reform White Paper

Save Our Children’s Rights Campaign

IPSEA on White paper reforms

Special Needs Jungle

Write to your MP