Valuing individuals and their families
Read about the CBF's projects and research, both past and present, relating to valuing individuals and families.
Introduction
What Matters to Me is a 3-year project funded by The Blagrave Trust and Children in Need and builds on previous similar work with the 2021 project ‘Seldom Heard Voices’. What Matters to Me has involved directly engaging with 11 young people who have severe or profound and multiple learning disabilities, and their families and support circles. The direct engagement has involved carefully planning and facilitating direct engagement activities with the young people individually and in small groups, using creative methods to gather their experiences, preferences and views and using what we learn to influence local and national policy and shape support and services.
The CBF have worked alongside the Tizard Centre at the University of Kent and Birmingham University 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 profound and multiple learning disabilities 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 meaningfully engage with this group and by evidencing this work we can drive change and influence policy at a local and national level.
Project Progress
We have been working with two project partners based in the Southeast of England, Demelza and Ifield, as well as carrying out a more individualised approach with a young person in their own home and community. At the start of the project, we worked in partnership with family carers and support circles to complete robust consent and best interest processes for each young person.
Over the past 18 months we have built strong relationships with our project partners, the young people and their support circles and have planned and carried out a range of creative engagement sessions. This includes activities incorporating arts, sensory materials, music and individuals own communication aids as well as exploring new ways to interact with the young people such as using Talking Mats and StorySharing. Through the project journey, we have been able to use our observations and engagement and interpret this into understanding what is truly important to and for young people with severe or profound and multiple learning disabilities. The project topic was transition, and we have focused our learning on this.
We have captured much of our project journey through photographs and videos, and these will form part of our multi-media manifesto to showcase our project learning. The manifesto will consist of films, resources and practical tools based around the three strands to our learning:
- The Principles of Meaningful Engagement: for people with severe or profound and multiple learning disabilities
- Using Engagement to have an Influence: highlighting the importance of ensuring that engagement translates into change
- Project Learning: Transition – identifying key elements that are important to and for young people with severe or profound and multiple learning disabilities as they transition into adult services
The project has been shaped by what we have learnt from the young people, their families and support circles, and our steering group.
What Matters to Me Launch
We are excited to be launching the What Matters to Me manifesto at two events in March 2025. The aims of these events are to raise awareness of the importance and value of engaging with this group who are so often not given the opportunity to be involved in consultations or decision-making processes. As well as providing practical ways for other professionals and organisations to reflect on how they include this group and ensure they are included in decisions that impact their lives.
Parliamentary Reception at the House of Commons
We are excited to be launching the project at the House of Commons, with support of Sittingbourne and Sheppey MP, Kevin McKenna. The purpose of this event is to share the project with MP’s, decision-makers and key stakeholders and highlight the need for more steps to be taken so that people with severe or profound and multiple learning disabilities have opportunities to be consulted with at all levels.
Online Launch Event: 27th March 2025
Join us for a morning of recognising the value of the What Matters to Me project, and take forward ways in which you can spread our message within your existing networks and workspaces – How are you finding out ‘what matters’ for people with severe or profound and multiple learning disabilities?
The online event will be an interactive session, sharing the project manifesto including our practical toolkit, giving attendees a chance to reflect on their own organisations practice, and hearing about similar good practice work going on and from those involved in What Matters to Me.
Sign up to book your free place here
Get Involved – What Matters to Me Network
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:
