People with learning disabilities are one of the most disadvantaged groups in our society (EHRC, 2016); they experience the most barriers to schools, services and communities. They are often isolated; their skills are not recognised and their voices are rarely heard. Among people with learning disabilities, the most disadvantaged are those with profound and multiple learning disabilities (PMLD) – a group of people who rely on 24-hour support in most areas of their lives and use alternative means to communicate effectively – (see Ware, 2019).

Whose role is it to challenge and address the exclusion of people with PMLD? Who can support this group of people to amplify their voices and recognise their skills and abilities? How do we provide opportunities to enable everyone to be active participants in their local communities? The answer to these questions is everyone – we all have the responsibility to support each other to have a voice. This answer might sound simple, but the implementation of it is more complex, as it challenges the core values and beliefs that we all hold as individuals.

People with PMLD from a very young age rely on a lot of support, initially from their main carers and family members, and then education, health and social care professionals, as well as community members. Many of us who are in the lives of people with PMLD are keen and willing to support and take care of them. There is a danger that by caring we might unconsciously disadvantage individuals with PMLD by promoting high dependency on our support at the expense of their independence, confidence building and abilities to advocate on their own behalf. Another danger is that this caring attitude helps us to develop a ‘charity’ view of people with complex needs. This can be problematic as it shapes how we perceive people with PMLD, what credit we give them for their abilities, how we support them, how we teach and how we listen to what they have to teach us.

‘There is a danger that by caring we might unconsciously disadvantage individuals with PMLD by promoting high dependency on our support at the expense of their independence, confidence building and abilities to advocate on their own behalf.’

Through our unique practice-based experience we aim to challenge the values and beliefs of social work trainees to shift from the ‘charity model’ of care and protection, to an inspired-aspiration and capacity-building one, where people with lived experience of PMLD have more opportunities to practise and further develop their communication (see Mencap et al., n.d.) and multimedia self-advocacy skills (see Kwiatkowska et al., 2012).

The collaboration between the Charlton Park Academy and the RIX Centre of the University of East London has always been about empowering young people with complex needs through the use of new media technologies to communicate more effectively and express their wishes, wants and preferences while promoting person-centred practice. By providing appropriate technologies to people with PMLD and creating supportive environments, that maximise their potentials, we discover that people with lived experience have more skills and abilities, and not only improve their self-advocacy skills but also are able to teach future education, social and health care professionals about communication and person-centred support.

Two key aspects which make the shift of the model of working possible, are the non-verbal communication and relationship building between individuals, which each give a unique opportunity for the young people to take the role of a teacher. Effectively, social work students learn from young people with lived experience of PMLD through their interaction, multimedia advocacy and active listening, while being fully emersed in a classroom environment where communication strategies, participation and person-centred interactions are taking place.

We developed this model of teaching and learning between secondary school and higher education over a decade-long partnership. This collaboration benefited everyone involved. It highlighted the strength of inclusion at all levels of education and raised questions about who is recognised as doing the teaching. The extraordinary contributions made by the young people involved inspired us to examine, share and promote this work more widely in the hope that it will encourage others to build similar partnerships and models of working. This research reframes the involvement of young people with PMLD from being passive recipients of support and education, to individuals with the ability to educate social work professionals. As a result, young people have developed their skills and confidence, social work students have learned from those who face the most complex of barriers and been challenged to reassess their limiting beliefs about disability. Our hope is that this approach could be replicated or adapted beyond social work education to other disciplines, for example teacher training and health professionals. This work has the potential to enhance understanding and to transform attitudes, ultimately improving practice and achieving better lives for young people and their families.

To find out more, see our recent article which reports on our methodology and outcomes.

References

Equality and Human Rights Commission [EHRC]. (2016). England’s most disadvantaged groups: People with learning disabilities. https://www.equalityhumanrights.com/sites/default/files/is-england-fairer-2016-most-disadvantaged-groups-learning-disabilities.pdf 

Kwiatkowska, G., Tröbinger, T., Bäck, K., & Williams, P. (2012). Multimedia advocacy. In K. Miesenberger, A. Karshmer, P. Penaz, & W. Zagler (eds.) Computers helping people with special needs. Springer. https://doi.org/10.1007/978-3-642-31534-3_54

Mencap, British Institute of Learning Disabilities, & The Renton Foundation. (n.d.). Involve me. Practical guide: How to involve people with profound and multiple learning disabilities (PMLD) in decision-making and consultation. https://www.mencap.org.uk/sites/default/files/2016-06/Involve%20Me%20practical%20guide_full%20version.pdf

Ware, J. (2019). Autonomy, rights and children with special educational needs: The distinctiveness of Wales. International Journal of Inclusive Education, 23(5), 507–518. https://doi.org/10.1080/13603116.2019.1580928