Putting children’s rights at heart of neurodevelopmental support

On 2 March, Marie Harrison, Services Manager – Children’s Views at Children in Scotland, presented at the second Neurodevelopmental Summit, chaired by the Minister for Social Care and Mental Wellbeing. She gave evidence from her work managing the Children’s Views service, which gives a voice to children, including those requiring neurodevelopmental support, in decisions about their education. In our latest blog she outlines her key messages from the event.

When we talk about neurodevelopmental support for children and young people, we are talking about more than services. We are talking about rights, dignity, and life chances.

Across Scotland, more children and young people are being identified with neurodevelopmental differences. This shows us that our society is wising up to the fact that our brains work in many different and beautiful ways – and this is not something we should shy away from.

Neurodivergent children are not broken – they don’t need fixing, but they do need access to systems and structures that will allow them to learn and live in ways that are meaningful to them – the flipside to this increased understanding and awareness is that it has brought with it long waiting lists for children and their families; complex pathways, and systems that can feel fragmented and diagnosis-dependent.

But in that space — between identification and intervention, between referral and diagnosis — that is where we in the third sector are operating.

The third sector is not at the margins of this system. We are a core part of the support landscape, and we work closely with statutory services. It is critical that these partnerships continue to develop.
In the third sector we provide early and preventative support — often before diagnosis and often without requiring one in order for us to become involved. We offer family support, peer networks, mentoring, advocacy, and practical guidance. We create spaces where children, young people and their families are met with support, compassion and given a safe space to talk. Very often, we are the first door families knock on.

And critically — we also amplify the voices of children and young people themselves. Through advisory groups such as My Rights, My Say’s young advisors and the Inclusion Ambassadors, we see clearly that children and young people want to be heard and involved in decisions about their lives. These groups are built up around incredible young people with additional support needs who are not afraid to tell us when we don’t get it right. And trust me, they do tell us when we don’t get it right!

Systems designed with, not for neurodivergent children

Neurodivergent children do not want systems designed for them. They want systems designed with them. The third sector often provides the space and trust that make that participation meaningful rather than tokenistic. We can be the conduit between tenacious young people – and decision makers at the heart of policy development.

We know that early access to third sector support can have a positive impact not only on neurodivergent children, but also on their families. Parents often feel they are “fighting” the system and third sector support relieves this pressure and helps to repair relationships between families and professionals when they break down. As a young person told me – “you don’t belong to my mum and dad, or to school, or to social work – you are kinda like a nobody – so I think I can probably trust you”.

The important role of advocacy

Advocacy ensures that children and young people — and their parents and carers — can understand their rights, express their views, and challenge decisions where necessary. Yet access to advocacy across Scotland remains inconsistent. It can depend on a child’s age, their local authority, or the specific need involved. For too many families, it is a postcode lottery.

Alongside this, our current system is struggling to cope with an increase in demand for diagnoses and support. Families continue to experience long waiting periods and pathways that are not always easy to navigate.

And while the third sector is proud to support statutory services to address these gaps, many organisations are themselves operating under significant pressure.

Short-term funding cycles make it increasingly difficult to retain skilled staff. Competitive commissioning can make it feel like we in the third sector are at war with each other, rather than playing for the same team. Rising and increasingly complex demands makes it harder to deliver services on a shoestring budget. Despite this, we love what we do, and we are not going anywhere – but we cannot build a preventative, rights-based system on precarious foundations.

Making a rights-based system a reality

If we want genuine co-production and meaningful participation, we must design for it – and fund for it – from the outset. So, if I had a magic wand, this is what I would do:

First, multi-year funding agreements that allow organisations to retain skilled staff and provide consistent, resilient, and trusted support.

Second, formal recognition of the third sector and the importance of services that directly gather the experiences of neurodivergent children both within national and local neurodevelopmental pathways. Participation should be designed in, not added on.

Third, commissioning models that reward collaboration and shared outcomes between organisations, rather than competition.

Fourth, strengthened and equitable access to advocacy and views gathering services across Scotland, so every child and young person – regardless of age, diagnosis or postcode – can have their views heard.
The third sector does not replace statutory services. Nor should it. But it can strengthen them. And it can ensure that children’s rights and views are not an afterthought, but a foundation for service and support development.

The question is not whether the third sector adds value. That is evident every day in communities across Scotland. The question is whether we want to design a system that recognises that value, sustains it, and places children and young people – and their rights – at its centre.

If we get this right, we move from a system that strains to manage demand, to one that builds trust, resilience, and potential.

And that is what children and young people in Scotland deserve.