Author: George Fox brings over 25 years of specialist education and SEND leadership experience, alongside a deep, practice-based professional understanding of SMS…. Read more
This article is the first in a series exploring the importance of person centred planning for children and young people with Smith Magenis Syndrome (SMS). We begin by considering why person centred planning matters and what is fundamentally important for individuals with SMS. Future articles will explore the whole child in greater depth, including regulation, relationships and readiness to learn, and the important shift from behaviour plans to genuinely person centred approaches.
Start with the person, not the diagnosis
When I reflect on my experience as a teacher and school leader, it became clear that the child must remain at the centre of all decision making. This understanding deepened further when working with a child with SMS. He experienced many of the common characteristics associated with the syndrome, including disrupted sleep, strong attachments to specific adults, distress when those adults were unavailable, communication barriers, and challenges relating to physical health. These experiences reinforced the importance of working as a unified team rather than in isolation. The voice of his parents was essential. He spent six hours a day in school, but eighteen hours at home, and decisions made in one setting had a direct impact on the other. This required genuine collaboration, shared understanding and careful planning across all those involved in his life.
Supporting a child with SMS is challenging, particularly when professionals do not fully understand the nature of the condition. Families can find themselves navigating systems, processes and paperwork, rather than feeling that their child is truly understood. I recognise this from earlier in my own career, when my focus was often on completing plans and procedures correctly. Over time, I came to understand that unless we begin with the individual, it becomes very difficult to identify what meaningful support should look like.
Educational planning for people with SMS can easily become a checklist, dominated by support plans, risk assessments and organisational procedures. These approaches are often designed to protect systems and services, but they can sometimes lose sight of the child themselves. This is a common pattern that is not unique to one school, one local authority, or even one country.
When planning begins with systems rather than the individual, important parts of the whole picture are missed.
Every person with SMS is a person first, with their own interests, relationships, circumstances, strengths and motivations, like the rest of us.
SMS is a complex neurodevelopmental profile, not just a diagnosis
For families of children with SMS, it is rarely just one area that becomes a barrier to success. More often, there is a clear link between several areas of challenge, all interacting with each other across the day.
We understand that SMS commonly affects:
- Sleep
- Communication
- Regulation
- Sensory processing
- Cognitive development
- Physical health
Each of these areas interacts constantly with the others. Changes in one area will often have a direct impact on another. Families within the SMS community show enormous resilience as they navigate these constantly shifting cycles of behaviour, sleep patterns and emotional regulation, often facing challenges they could not have predicted or prepared for.
For example, a child who has not slept well is already starting the day at a disadvantage. Many children with SMS experience disrupted and fragmented sleep because their circadian rhythm, often described as a ‘flipped body clock’, is out of sync with typical day/night patterns. If that same child also has communication difficulties and does not yet have an effective system to express their needs, frustration can build quickly. Add to this a sensory environment that feels overwhelming, and the child may become dysregulated. At that point, they may be unable to engage in even the most basic routines that others might take for granted.
What can appear to be “behaviour” is often the visible outcome of several interacting needs that have not been fully understood or supported.
Why behaviour led planning often misses the point
In many schools, behaviour is still seen as something that everyone should comply with. It is encouraging to see some schools beginning to rethink their approaches in order to better support children with more complex profiles, including those with SMS. However, traditional behaviour plans often place compliance at the centre. They rely heavily on consequences, rewards and reasoning, assuming that the child has full control over their actions.
For a child with disrupted sleep, communication differences, and regulation challenges, this expectation can be unrealistic. Much of what is difficult for them may be beyond their immediate control. A plan built on rewards and consequences may be well intentioned, but it can offer little meaningful support. In some cases, it may even increase distress, because the child is being asked to meet expectations that they are not neurologically ready or able to meet.
These approaches often provide short term responses without the deeper understanding or long term planning that children with SMS require. When planning is driven by the need to fix behaviour, improve compliance, or manage complex actions – the root causes are easily overlooked.
Behaviour, in these situations, is not a problem to be solved. It is a message that something more fundamental needs attention.
The cost of misunderstanding SMS in education
Support for a child or young person with SMS is often discussed in terms of cost. This is usually calculated through placement fees or the level of direct support written into a plan, particularly at key transition points. However, when challenges arise and support becomes reactive rather than proactive, those costs can increase dramatically.
I have often found myself sitting in multi-disciplinary meetings, looking around the table and wondering what the true cost of that moment is. Not just in financial terms, but in time, energy and professional resources. When a large group of people are gathered to respond to a crisis, it usually means that something earlier in the process has not worked as it should.
Cost, however, is only part of the story. More important is the quality of support that a child with SMS receives. When planning is not thoughtful and person centred from the outset, we lose the opportunity to support them well from the beginning.
When a placement breaks down, the impact goes far beyond budgets and services. The emotional cost for families can be exhausting and deeply distressing. For the child, repeated breakdowns in support can lead to confusion, anxiety and a growing mistrust of the very services that are meant to help them. Over time, this can make it even harder to build the stable, trusting relationships that are essential for progress.
Why fragmented provision does not work for SMS
When there is a misunderstanding about the nature of SMS, and no central point for gathering and sharing information, planning is likely to fall short of what is truly needed. Without a clear, shared understanding of the individual, preparation for the next phase, transition or step in their journey can become fragmented and inconsistent.
Bringing together all the important points of reference that support effective planning is not simple work. It requires careful coordination, strong partnerships and a shared commitment to supporting both the young person and their family. When this happens well, transitions can feel purposeful and supported rather than rushed or reactive.
However, when support is split across different services and plans are written separately, often using different language and priorities, misunderstandings can easily develop. Professionals may work with different assumptions, and families may find themselves repeating the same information in multiple places.
From the young person’s perspective, the day is not divided into separate services or plans. They experience it as one continuous journey. For that reason, the planning, communication and support around them must also be interconnected.
What person centred planning really means in SMS
So what does a person centred plan really mean for a child or young person with SMS? At its heart, it means starting with the individual first and foremost. We begin by asking what truly matters to them, what helps them get through the day well, and where they experience the greatest sense of success and comfort.
Person centred planning means looking at the whole day, not just the hours between nine and three.
It requires us to bring together the parts of life that really matter: education, health, family life and social experiences. None of these areas should take precedence over others. Instead, they need to be woven carefully around the young person, so they can lean into different types of support at different times.
What a person with SMS needs is a coherent life, one that is rich in experiences and opportunities to learn about themselves and the world around them. Planning should go beyond compliance or fitting the young person into systems that work for everyone else. Compromise is sometimes necessary, but it should never be at a level where experiences become barriers or unnecessary limitations in their life.
How planning frameworks shape outcomes
England: The Education, Health and Care Plan (EHCP)
In England, the primary statutory framework is the Education, Health and Care Plan, known as the EHCP. Like the Scottish model, it is intended to bring together education, health and care services within one legal document.
The EHCP currently has strong legal weight within education, and this has helped secure support for many children and young people. However, the recently published Government white paper on SEND reform has created some uncertainty about how the system may change in the future. While we wait for clearer guidance, it is important that planning does not become focused only on the framework itself.
In practice, education often takes the lead because it has the clearest legal duties. Health and social care support can sometimes feel less clear or less firmly in place. This makes it even more important to start with a person centred understanding of the child, so their needs across education, health and care are properly recognised and supported, whatever changes lie ahead.
While EHCPs are designed to be person centred, very often they become heavily outcome driven and compliance focused. Plans may prioritise measurable targets and behavioural expectations, sometimes at the expense of a deeper understanding of regulation, sleep disruption or communication differences.
For a child with SMS, this can create risk and challenge. If the plan focuses primarily on educational attainment or behavioural compliance, without equal emphasis on health and regulation, the child is unlikely to receive the support they genuinely need. Outcomes may be written clearly on paper, but the lived experience of the child across the day may remain disjointed.
The strength of the EHCP lies in its legal enforceability, which is why proposed changes can create so much uncertainty and anxiety for parents who are worried about whether their child will continue to receive the support and school placement they need. However, its limitation can be the uneven balance between education, health and care when not carefully managed. As with Scotland, the framework itself is not the deciding factor. The quality of understanding and coordination around the individual remains critical.
Scotland: The Coordinated Support Plan
In Scotland, the Coordinated Support Plan, known as the CSP, is designed for children and young people with complex, long term needs that significantly impact their learning. A key feature of the CSP is that it requires involvement from more than one agency. Education, health and other services must work together, and the support must be formally coordinated.
The CSP sits within the wider Getting It Right for Every Child framework, often referred to as GIRFEC. This approach places strong emphasis on wellbeing, holistic assessment and multi-agency collaboration. In principle, it encourages joined up thinking and shared responsibility around the child.
For young people with SMS, this structure has clear strengths. Because the condition affects learning, regulation, communication, and health — a coordinated plan across services reflects the interconnected nature of their needs. The framework allows for the child to be placed at the centre of planning, with agencies required to work together rather than in isolation.
While the CSP framework encourages coordination across education, health and other services, the quality of support still depends on how well the child is understood in practice. Without a clear, person centred view of the individual, planning can become fragmented. Starting with the child, rather than the paperwork, helps ensure that education, health and care support are brought together in a meaningful and consistent way, regardless of how systems or processes evolve.
Why person centred planning matters even more in SMS
People with SMS are among those with the most complex and interconnected needs. For this reason, it is vitally important that support brings together different frameworks, services and areas of expertise in a coordinated and thoughtful way.
When support is reduced to a diagnosis, a behaviour profile, or a checklist of needs, it becomes easy to lose sight of the person at the centre of the plan.
SMS affects many aspects of development, including regulation, communication, learning and health. These areas cannot be understood or supported in isolation. Planning must begin with the individual, bringing together the people, knowledge and environments that help them feel safe, understood and able to engage with the world around them.
Effective planning reflects the reality of the child’s whole day, not just isolated moments within services. It recognises their strengths, anticipates their challenges and creates the conditions in which they can succeed and develop over time.
Good planning for SMS is not about producing better paperwork. It is about developing better understanding. When we truly understand the person, planning becomes meaningful, support becomes effective, and the child has the opportunity to experience stability, trust and genuine progress.
There is much to consider, whether as a parent or a professional. However, it is important to pause and reflect on what is fundamentally important. The next article in this series will explore the whole child in greater depth, focusing on regulation, relationships and readiness to learn, and why understanding these areas is essential for supporting children and young people with SMS effectively.
Specialist Mental Health and Social Care Support for SMS