Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.