The capabilities of people with intellectual and developmental disabilities under personalisation: A qualitative analysis of work, learning and social inclusion

Abstract

Statistics suggest that employment is inaccessible to people with intellectual and developmental disabilities. This creates a social, spatial and experiential divide that limits opportunities for social participation and learning. In the UK as elsewhere, social care is framed by ‘personalisation’ policy, which aspires to support personal autonomy yet is associated with a cost-cutting agenda and fragmented provision. The option to employ a Personal Assistant (PA) might support social participation.
The conceptual framework for this study is the capability approach, chosen for its focus on the practical opportunities available to people to achieve a life they have reason to value. Building on sociocultural learning theories, the study links work, learning, and social participation or ‘inclusion’. It explores how learning arising through social participation might enhance the capabilities of the people concerned.
Video-supported qualitative methods were used. Five young people with intellectual and developmental disabilities took part, each employing a PA and working in a context matching their preferences. For each, a parent, a co-worker or supervisor and the PA took part. Young people were filmed at work. This video supported recall and reflection in semi-structured discussion with participants. Video and discussion content was analysed by case, then thematically, in an iterative process.
PA support opened opportunities for social participation outside domestic and disability settings. The contribution of personalisation was ambivalent. People found work through bottom-up initiatives outside ‘social care’ parameters and in implicit challenge to them. Joint negotiation of preferences and opportunities resulted in unpaid work in not-for-profit contexts. Working this way enhanced the capabilities of young people to differing degrees. Collaborative relationships between young people, PAs and people in the workplace underpinned reciprocal learning processes, shown in themes of effort and recognition, mutual adaptation and affiliation. Findings for participatory learning were significant against a backdrop of substantial constraints on young people’s opportunities. This study challenges conceptions of autonomy as solo performance and social norms that delegitimise work outside employment both of which can impede access to participation and reciprocal learning in public settings.

More information

Identifiers

ORCID for Melanie Nind: orcid.org/0000-0003-4070-7513

ORCID for (Andy) Power: orcid.org/0000-0002-3887-1050

Catalogue record

Export record