Multimedia advocacy for young people with learning disabilities (REF 2021)

The Research and Media Centre (RIX)

Reducing inequalities in care quality, improving service provisions and access to opportunities for people with learning disabilities.

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The Research and Media Centre (RIX)

Reducing inequalities in care quality, improving service provisions and access to opportunities for people with learning disabilities.

Multimedia advocacy for young people with learning disabilities (REF 2021)

In summary

People with learning disabilities in the UK experience exceptional social exclusion and inequality. In 2017, the Equality and Human Rights Commission reported that in terms of education, standards of living, health and social care, and participation, people with disabilities achieve poorer outcomes than their non-disabled peers.

Professor Andy Minnion MBE is the founder and director of the Research and Media Centre (RIX) at the University of East London (UEL). Founded in 2004, the RIX Centre utilises person-centred approaches to promote self-advocacy for people with disabilities, developing ways of using emerging technologies to transform the lives of those with learning disabilities, particularly those who do not use speech-based communication. This is known as multimedia advocacy.

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Multimedia advocacy for young people with learning disabilities

Hear from Professor Andy Minnion MBE

What did we explore and how?

Professor Minnion and his team developed the "RIX Wiki", a software tool where portfolios of media content helps enable children, young people and adults with learning disabilities to self-advocate and communicate their choices, needs and aspirations as they plan their futures and engage with a wide range of professionals.

The software has benefited people with learning disabilities in the UK by enabling them to communicate their views, wishes, aspirations and preferences to ensure improvements in the services they receive.

The RIX Centre team co-developed the software and training resources with professionals and carers to ensure young people's needs and wishes were more effectively communicated to provide person-centred planning support.

Pilot trials took place between 2013-2016, with 14 UK local authorities and 11,550 young people and their families on the SEND Pathfinder programme, to research and develop the RIX Wiki software. Professor Minnion hosted an active and inclusive 'community of practice' for disabled people and carers to establish multimedia advocacy with support staff, professionals and service-provider organisations.

What is the impact of this research?

Multimedia advocacy practices and the RIX Wiki software have improved the education and advocacy of young people with learning disabilities in transitions into adulthood, enhanced services' accessibility, and addressed issues around information sharing across services.

Work with the Social Care Institute for Excellence addressed the need for easy-to-understand information about community services for adults with learning disabilities. A group of experts reviewed services and shared their findings with peers using the RIX Wiki. This resulted in the development of accessible websites for six London councils.

Additionally, commissioned research with NHS Trusts and health and social care teams enhanced the RIX software for use in Health and Care Plans, Hospital Passports, Mental Health Wellbeing Plans and a multimedia 'NHS Family & Friends Test' for Primary Care.

During the Covid-19 pandemic, the RIX Centre team worked with the London Borough of Redbridge and three care provider organisations to introduce a RIX Wiki toolkit for people with learning disabilities, receiving community-based care services to help reduce social isolation and maintain links with professionals during periods of lockdown and the closure of community services.

Since 2014, the RIX Wiki has been used in 65 UK schools and colleges, resulting in 2,890 learners engaged in the person-centred planning process. Evaluation has evidenced significant improvement in communicating individuals' views and wishes, better communication between home, schools and professional services such as NHS therapies and social work and improved provision of local information to support their journey to adult life in the community. The use of the RIK Wiki in schools and colleges has significantly developed the 'pupil voice' and informed self-advocacy for those with learning disabilities.

Inclusive education for employability, independent living and social inclusion has also been a focus of five large-scale EU projects undertaken by RIX since 2014. They engaged 1,200 learners with learning disabilities in face-to-face workshops and reached thousands more via these projects' accessible multimedia learning resources. These resources have been translated into seven languages and distributed freely online. School and college leavers' employability has improved by creating personal multimedia CVs that help prospective employers understand learners' support needs alongside their skills and abilities.

Professor Minnion's action research has resulted in 20,000 annual RIX Wiki accounts for use with adults, training and consultancy across 20 UK local authorities, NHS services and social care providers. In total, 6,019 professionals and parents/carers have completed training over this period, with 75 per cent provided via face-to-face provision.

This work has transformed traditional care and support practices, pioneering digital person-centred tools for the first time for 88 per cent of trainee participants. This has driven culture change for organisations struggling to adopt personalised care provision over legacy paper-based processes that interpreted assessment as a one-off service-led process that failed to engage effectively with the voice of young people and their carers. RIX software has also helped positively engage parents and carers, which local authorities report has helped reduce adversarial meetings and costly tribunals, saving public costs.