‘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. This project will involve creatively engaging young people aged 16-25 years with a severe or profound and multiple learning disability to gather their experiences, preferences and views to influence local and national policy. The CBF will be working alongside Tizard Centre at the University of Kent; a leading UK academic centre working in autism, learning disability and community care, to develop approaches and models to creatively engage with the young people participating in this project.  

Often, the experiences, preferences and views of young people with severe or complex needs are not always obtained, as it can be viewed as ‘too difficult’ if the young person has no or very limited verbal communication. With the What Matters to Me Project, 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.  

The project is being supported by an advisory group of members including family carers, providers, MENCAP, Policy Leads and Independent Advisors.  


Project Planning  

Whilst we are still in the planning stages of this project, there have been some very exciting developments for shaping the next steps.  

To assist us in facilitating the project we have partnered up with two organisations who support young people with severe or profound and multiple learning disabilities, and we are incredibly excited to be working with them on this. 

Over the coming months, our project officer will be working closely with these sites to build relationships with young people and explore areas of interest for policy influencing.  

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!  


What Matters to Me Network 

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

We have put together a network for this project to create a community of interest and welcome all individuals whether you are a professional or a family carer to join this forum. Here we will share updates, discuss important topics, share good practice and other similar work.  

If you would like to find out more or see how this project could support other work, please get in touch at

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.