As a disabled young person, I spent a long time feeling like I existed outside of the rooms where decisions were being made about me and my community. Whether it was watching other young people not get their Education Health and Care Plans (EHCPs are a legal document used in England to outline the educational, health and social care needs of a child or young person) or wait years for an autism assessment (this is part of the process to understand if a person is or isn’t autistic) to access their education.
Listening to young people directly brings insight that cannot be captured in statistics or by reading reports about us. We know where the gaps are, because often we’ve fallen through them. We have felt the impact first-hand. But we also know where the areas of effective practice are and what good looks like. For example, the professionals who go above and beyond to genuinely listen and build trust with us or the organisations who centre access in all that they do. We have imagined the systems that we need. We bring bold and creative ideas.
That is why it feels essential to hear from children and young people directly. To understand what it feels like from the inside and to recognise how much we rely on the decisions that are made by those with power.
Recently, members of FLARE (a national advisory group to the Department for Education made up of disabled children and young people and those with special educational needs) had the opportunity to meet with the Secretary of State for Education, Bridget Phillipson. At the meeting, we shared our experiences of the education system to inform the government’s planning for changes to the school system, including support and services for students who are disabled and/or have a special educational need. We highlighted the importance of ensuring teachers have effective training on disabilities and special educational needs, the importance of individual support in schools and how we think this could be facilitated by EHCPs, and support for children and young people with unmet mental health needs. These conversations feel like a key part of bridging the gap between lived experience and policy.
As a FLARE member, I’ve done quite a bit of speaking to decision-makers. Here are some things that I wish I had known as a young person before speaking to decision-makers:
- It is okay if you feel a bit nervous when speaking to decision-makers. Perhaps we might question if we ‘know enough’ or are the ‘right person’ to be in the room. But your experiences and insight as a young person are really important. You bring an experience that decision-makers might not be used to hearing, and that is exactly why it is so needed. They need to hear from you.
- Think in advance about what you feel comfortable sharing and what you would prefer not to share. You never have to share anything that you don’t want to. You might also choose to share experiences in a way that feels more distanced, like speaking about something as if it happened to a friend, even if it happened to you.
- Think of phrases that you could say in advance if you don’t want to share something. For example, if you are asked about your personal experiences and would prefer not to share, it could be helpful to have a phrase to use. This means that you don’t have to think on the spot. For example, saying “That’s an interesting topic. I think on a wider level, a lot of people have experienced…” or “More generally, what I’ve noticed is…” or if there are a group of people in the conversation, “I wonder if anyone else has any thoughts on this?”.
- Prepare what you would like to talk about. It can be helpful to think about the topics that you would like to share in advance. You might even consider how these connect to areas that the decision-maker is interested in or how they relate to wider issues that matter to young people. If you wanted to, you could practice sharing what you would like to talk about in advance to build your confidence.
- Think about what could change to make things better. I have found it helpful to think about not just my own and other young people's experiences but also what could change to make things better. This could include examples of what you think would improve things, examples of other places where things are working well or lessons learnt from another project.
- Remember, change takes time. When I first started doing this work, I thought that change would happen quickly. I thought that as soon as ministers knew the issues and solutions, things would immediately shift. It can be helpful to remember that meaningful change often takes time and not to get discouraged along the way. It is each step forward that matters.
Meeting with lots of different decision-makers (including Ministers, government committees, local authority representatives, civil servants, and policy advisers) over the last few years has also made me reflect on what they can do during these conversations. Here is what I would like decision-makers to know about engaging with children and young people:
- Engage with young people regularly. Involving young people regularly and consistently can help to build trust, ensure that young people feel heard and that the voice and experiences of young people are embedded in decision-making.
- Involve us from the earliest stage. Involving young people should be included right from the beginning, rather than asking for feedback on something that has already been decided. It is key for young people to be involved in shaping ideas, identifying the key priorities and co-producing solutions.
- Engage with a diverse range of voices. Young people are not a single group. Our experiences vary based on lots of different factors and it is important that a wide range of voices are heard to ensure that decisions are inclusive and relevant to different experiences.
- Take action and be honest. Young people want to see that our voices make a difference. It is important that decision-makers take action on what we share and are honest about what can and can’t be done.
- Share feedback. If young people share their thoughts, it is important for us to be told what happens next. It is important that we get feedback on how our input will be used, any decisions that were made and what will happen going forward.
- Let us raise topics which matter to us. Young people should be listened to on a wide range of issues, not just on topics decided by others. Young people should have the opportunity to bring topics that are important to us and our communities.
Looking ahead, I have the hope that support will be better for the next generation of disabled young people, and those with special educational needs. Maybe one day, their needs will be met without years of waiting. They will be believed the first time. They won’t need to fight for support. To make this a reality, young people must be embedded throughout every stage of decision-making, not just consulted occasionally after decisions are made, but involved as equal partners in shaping policy and services. The policies that are created and written today impact generations of young people to come.