‘What Matters to Me’ Project

Influencing policy with the experiences, preferences and views of young people with severe or profound and multiple learning disabilities


The What Matters to Me Project is a 3-year project funded by The Blagrave Trust and Children in Need and extending on previous similar work with the Seldom Heard Project. We have currently recruited 12 young people aged 16-25 who have severe or profound and multiple learning disabilities, across two project partner sites. We will plan and carry out direct engagement with the young people individually and in small groups, using creative engagement methods to gather their experiences, preferences and views to influence local and national policy.  

The CBF are working alongside the Tizard Centre at the University of Kent; a leading UK academic centre working in autism, learning disability and community care, to develop individualised approaches and models to creatively engage with the young people participating in this project.  The project is being supported by an advisory group of members including family carers, providers, MENCAP, Policy Leads and Independent Advisors.   

Often, the experiences, preferences and views of young people with severe or complex needs are not sought, as it can be viewed as ‘too difficult’ if the young person has no or very limited verbal communication. Through What Matters to Me, we want to be able to demonstrate that adaptable approaches can be used to obtain the experiences, preferences and views of young people who have complex communication challenges and by evidencing this work we can drive change and influence policy at a local and national level.   

Project Progress 

We are working with two project partners based in the Southeast of England, Demelza and Ifield, and we also are in the early planning stages for our third strand of work; working with a young person in their own home. Across the two partner sites, we have completed robust consent and best interest processes for each participant in partnership with their family carers and support circles. 

The project officer has built strong relationships with the project partners, the young people and their support circles and has started to develop and carry out tailored engagement activities. Through this relationship building and exploring stage, we have started to focus on the main themes of the project, and this is developing into some key and important learning points.  

The key aims for this project are to firstly show that consulting with young people who have such complex communication needs can and should be done if we adapt our way of consulting – -and then to demonstrate how we use what we learn from the young people to have an influence and impact. 

Our vision for the project is to create a multimedia manifesto, evidencing through photo and film the things that are important to the young people taking part. We will use this impactful manifesto to influence policy and share good practice to deliver improved outcomes for young people who have severe or profound and multiple learning disabilities and who have complex communication needs.  

We will share updates as the project delivery gets underway through our project network forum and we plan to launch the manifesto in Summer 2024.  

What Matters to Me Network 

The project delivery will be carried out with young people in the Southeast of England; however  we aim for this project to have an impact nationwide!   

We have brought together a network for this project to create a community of interest and welcome all individuals, family carers, advocates and practitioners to join this forum. This forum will provide an opportunity to connect and share updates, discuss important topics, share good practice and learn about other similar work.   

If you would like to sign up to the network, please follow the link here

Click here to sign up 

Projects and research

Projects and research

The CBF aims to improve lives for individuals with severe learning disabilities who display behaviour that challenges through our project work, using new approaches and encouraging others to learn from this work and improve their practices.