What Matters to Me

What Matters to Me Project Background

What Matters to Me was an innovative three-year project which built on previous approaches led by the CBF and involved directly engaging with 11 young people who have severe or profound and multiple learning disabilities, and their families and support circles.

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What Matters to Me A Guide on Consent and Best Interest for People with Severe or Profound and Multiple Learning Disabilities

Obtaining consent for individuals who lack the capacity to consent themselves, and adhering to a comprehensive best interest process is an essential aspect of direct engagement. This guide examines the complexities involved and outlines the process and considerations followed by the project to ensure compliance with best practice.

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What Matters to Me Methodology Using a Mixed Method Approach

Working in partnership with academics at the Tizard Centre (University of Kent) and Intellectual Disabilities Research Institute (IDRIS – University of Birmingham) we identified a range of ways to consult with and engage the young people who participated in the project, and their families. Our methodology and approaches are explored in more detail here.

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Finding out what matters: The Principles of Meaningful Engagement

Working with young people and the families and staff who support them, we identified 6 principles of meaningful engagement. The film, featuring the young people we worked with, explores these principles. The written resource looks in more detail at why these principles are important and why all six need to be in place.

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Direct Engagement: What did we do?

To help with ideas about creative engagement activities this resource shares examples of the activities we used, including individual and group activities, simple accessible options, and more structured sessions.

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Co-Production: Nothing Without Us

A guide to co-production at the CBF: Meaningful, Collaborative, Focused and Personal.

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Using what matters: Circles of Influence

This case study film examines how learning through direct engagement led to a service-wide transformation benefiting all young people who use the service. The circles of influence resource explores the significance of meaningful engagement and its ability to drive change at various levels, from individual services to systemic reforms.

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Influencing what matters: Transition to adulthood

Moving from child to adult services (a process often called “transition”) can be a worrying and stressful time for people with severe or profound and multiple learning disabilities and their families. The film shares what matters to young people during transition and the written resource explores each finding in more detail.

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What Matters to Me: A Practical Toolkit

The What Matters to Me Practical Toolkit provides materials and resources that can be used by both professionals and families to improve how people with severe or profound and multiple learning disabilities are consulted with and engaged in processes that impact their lives.

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Looking Ahead at What Matters

Engaging directly with people with lived experience is vital to ensuring that policy, resources and funding truly reflects the needs of those it impacts upon.

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