A groundbreaking initiative led by the Challenging Behaviour Foundation (CBF) and supported by Kevin McKenna MP (Sittingbourne and Sheppey), this milestone event marks the culmination of a three-year project designed to amplify the voices of people with severe or profound and multiple learning disabilities (PMLD), ensuring that their lived experiences directly inform both local and national policy.
Beyond Policy: The Power of Lived Experience
Achieve together’s Michael Fullerton, Director of Wellbeing, Strategy, and Communications, joined a distinguished group of advocates, MPs, sector leaders, families, and individuals with lived experience to celebrate this transformative project. The heart of the event was an essential message: Policy must be shaped by the people it affects the most.
The What Matters to Me project has engaged with 11 young people with PMLD, using innovative approaches such as sensory arts and hydrotherapy to create meaningful ways for them to share their perspectives. Their voices were represented through interactive stands at the event, illustrating key findings from the research.
(Shown from left to right are Michael Fullerton, Elmi Terjavjainen, Julien Baird, Michael Stalder, Crystal Higgins, Stephen Adamson.)
The Need for Systemic Change
Speaking at the event, Campaign 4 Change members reinforced the importance of recognising individuals with severe or profound learning disabilities as active contributors to the conversation, not just passive recipients of care. Their message was clear: real change happens when lived experience is central to decision-making.
The launch also featured insights from Viv Cooper OBE (Founder, Challenging Behaviour Foundation), Marie Baker (Family Carer), and MPs including Josh Babarinde OBE (MP for Eastbourne), highlighting the need for actionable steps to ensure meaningful inclusion, robust policy change, and better support systems for people with PMLD and their families.
Why This Matters
For too long, the voices of those with PMLD have been overlooked in key policy discussions. This event was a reminder that by working together – families, self-advocates, professionals, and policymakers – we can drive forward tangible, lasting improvements in support, access, and inclusion.
At Achieve together, we are proud to support this movement. Through our commitment to co-production, advocacy, and sector-leading care, we will continue to push for a future where every person, regardless of ability, is heard, valued, and included.
Join the conversation: Explore the full What Matters to Me report on the Challenging Behaviour Foundation website and follow the discussions using #WhatMattersToMe #LearningDisability #InclusionMatters. What Matters to Me | Challenging Behaviour Foundation
