CBF Announces Making it Matter Project
The CBF is pleased to announce Making it Matter, a new flagship UK wide project to increase direct engagement with young people with severe learning disabilities.
The CBF is pleased to announce a new project today, building on two areas of work which have been shown to make a difference to individuals and families.
First, the Challenging Behaviour Foundation (CBF) has a well-established track record in designing and delivering co-produced training workshops, spreading evidence-based practice. Workshops lead to reported changes to practice by professionals and adoption of new approaches by families. The workshops equip family carers and professionals with expertise in supporting relatives whose behaviours may be described as challenging.
Second, the (CBF)’s What Matters to Me project showed that it is possible to find out what matters to people with severe or profound and multiple disabilities and it is possible to use what matters to make a difference. The project was acknowledged as offering “a compelling case for rethinking how inclusion, engagement and influence are defined and designed.*”
Now, building on both these areas of work and thanks to National Lottery players, the CBF has received more than £2.2 million of life-changing funding over five years from The National Lottery Community Fund. The funding will be used for Making it Matter: no voice but a lot to say, a five-year project to increase direct engagement with young people who have been historically excluded from engagement activities.
This comes from The UK Fund, one of The National Lottery Community Fund’s significant commitments as part of its 2023-2030 strategy, ‘It starts with community’, funding projects that help children and young people thrive – one of the funder’s four key missions.
The project will involve:
- Co-producing a new training workshop to support and encourage other organisations to directly engage with young people in a way which will influence policy and practice.
- Ensuring the perspectives of young people with severe or profound and multiple learning disabilities whose behaviours challenge inform the work of the Challenging Behaviour-National Strategy Group.
- Establishing a national online community of practice to share learning and identify themes for UK-wide policy influencing.
The CBF will work closely with partners on this project: PAMIS in Scotland and the Southern Health and Care Trust in Northern Ireland will work closely with the CBF to support work to embed this approach across the UK; the Race Equality Foundation will support a specific focus on working with racialised communities to identify systemic issues where race intersects with disability; and, the University of Birmingham will continue to ensure that the approach used is rigorous, ethical and based on the latest evidence.
Dr Karen Jankulak, family carer and Vice Chair of Trustees at the CBF said:
“As the parent and carer of a young adult with profound learning disabilities, one of my greatest challenges is understanding and representing his ‘voice’, which can so easily be obscured by his complex needs and, at times, challenging behaviour. I have seen how badly wrong things can be without this understanding, and, with the help of the Challenging Behaviour Foundation, how brilliantly things can improve if we get this right. On a personal level, this is critical to my son’s wellbeing. On a policy level, his needs are so easily disregarded, being both specific to a (relatively) small cohort of very vulnerable people, and, equally, being so (apparently) intractable. This must change! The difference between my son’s life when his voice is and is not heard is astonishing: we all need to be ambitious as to what can be done to provide robust support that makes such a difference. Engagement is the key to every possible benefit. Our children deserve no less.”
Jacqui Shurlock, CEO of the CBF said:
“We are delighted that the National Lottery UK Fund has recognised the importance of this work to directly engage with individuals with severe or profound and multiple learning disabilities whose behaviours may challenge. For nearly 30 years the CBF has ensured that the voice of family carers is heard by those with the power and influence to change things. At a time when the rights of individuals with severe or profound and multiple learning disabilities feel under greater threat than in recent history, fuelled by misinformation about challenging behaviour, this is a timely project. It aims to directly understand and share the perspectives of young people across the UK and their families to influence systemic change, including a specific focus on the under-explored inequities faced by young people with severe or profound and multiple learning disabilities from minority ethnic communities.”
Jabeer Butt, CEO of the Race Equality Foundation said:
“We are pleased to support this vital work, which places people with severe or profound learning disabilities at its centre. The We Deserve Better report** highlighted how ethnic inequalities result in significantly lower life expectancy and poorer outcomes for disabled people from ethnic minority backgrounds when accessing support services. By meaningfully involving these individuals in the co-production of services that affect their lives, we believe this project will drive genuine and lasting improvements in both the quality and equity of those services.”
Dr Heather Hanna FRCPsych, Consultant Child & Adolescent Psychiatrist in Intellectual Disability Southern HSC Trust, Northern Ireland said:
“We are delighted to partner with the CBF in this dynamic and important project. They have a proven track record in ensuring those who cannot use words are heard loudly and clearly. Ensuring the needs and wishes of those with severe or profound intellectual disability are understood can make a difference between life and death. This is an issue of justice because everyone deserves a happy, healthy life. We need to work together to bring about change and this project builds on a strong foundation”.
Professor Jill Bradshaw, Professor of Communication, Health and Social Care, Intellectual Disabilities Research Institute, University of Birmingham said:
“people with severe and profound and multiple learning disabilities are at real risk of being ignored and excluded. They are often given very few opportunities to influence what happens to them. We need to spend time getting to know people and to understand their communication skills. To do this, we also need to involve families and people who are very familiar to the person with severe or profound learning disabilities. By working together and being creative, we have shown that we can have a better understanding of what matters to and for people. We can use this knowledge to make a difference and to start to improve the quality of support and people’s quality of life. Having this funding is so important!”
*The Young People in Policymaking Fund Final Learning Report 2022-2025, Blagrave Trust https://www.blagravetrust.org/wp-content/uploads/2025/12/Blagrave-Trust-Young-People-in-Policymaking-Final-learning-report.pdf