Management, leadership, and user control in self-advocacy: an english case study.
Let people with ID share board power with advisors—funders keep paying and the group keeps running.
01Research in Context
What this study did
Pellicano (2013) followed one English self-advocacy group run by people with intellectual disability.
She watched how the group stayed open when money was tight.
The group let nondisabled advisors share power instead of running everything alone.
What they found
The group lived on by using an “interdependent” board.
Self-advocates and advisors made choices together.
Funders liked the shared model and kept paying the bills.
How this fits with other research
Storch et al. (2012) show the problem this model fixes. Their US survey found students with ID rarely lead their own school transition plans. Elizabeth gives a real-life way to add true user control.
G Williams et al. (2025) built a youth board for an autism project. Both papers describe shared boards, but Elizabeth centers people with ID as full governors, not just advisers.
Golnik et al. (2012) link shared decisions to happier parents in autism care. Elizabeth stretches the same idea into governance: share power and the whole agency survives.
Why it matters
You can help self-advocacy boards stay alive. Invite funders to meetings where members with ID vote and speak first. Write roles that pair advisors and self-advocates as co-chairs. A shared table keeps the lights on and the voices real.
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02At a glance
03Original abstract
This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disability, I seek to explore how one particular organization managed to survive and grow. In particular, the paper explores themes of management, leadership, and user control, linking these to external perceptions about self-advocacy organizations. The organization in my study developed an "interdependent" governance model based on key organizational roles for nondisabled advisors and self-advocates, which proved popular with external funders. Despite the organization's notable achievements, its success raises questions for the wider self-advocacy movement, notably how leadership capacity can be developed among self-advocates.
Intellectual and developmental disabilities, 2013 · doi:10.1352/1934-9556-51.6.470