The operation of the social support sector serving siblings of people with disabilities: A cross‐country analysis

Abstract

AbstractSibling support is a form of support often offered to the brother or sister of a person with disability. While practiced around the world and the subject of much research interest, most research about sibling support has been outcomes evaluation of individual sibling support programs, rather than about the operational/structural circumstances of the organizations providing sibling support or of the sibling support sector at large. Within this context, this paper offers the first research of its kind: an exploratory study of the business operation of sibling support in Australia, New Zealand, the UK, USA and Canada. Drawing on semi‐structured interviews with 13 leaders of sibling support provider organizations in these countries, the paper focuses on sibling support providers' business models, funding, staffing, leadership and governance. The findings highlight that across countries, sibling support is a sub‐section of the not‐for‐profit/charity sector that mostly operates with minimal funding and staffing, and which is largely driven by the passion and personal experience of those who run sibling support organizations. The paper discusses the implications of the findings, with the conceptual lens of seeking to formalize recognition and legitimacy for sibling support as a distinct social service type within the disability/health/social care and not‐for‐profit/charity spaces. Further, by aggregating the experiences of sibling support providers across countries, the paper is able to show that—while a distinct service type and sector—the successes and challenges of the sibling support sector nevertheless also very much reflect the broader struggles of many other small not‐for‐profits/charities.