For a special issue on “the participatory society”, this article reflects on personal conversations at a campground for families with special needs children. The Dutch government seeks to enhance inclusion by encouraging citizen commitment and initiative. In practice this means: less funding for “special needs care” and more reliance on volunteers. Our campground stories argue that while inclusion and participation are important, chronic intensive care requires professional commitment. First, specialized custom solutions are more effective and efficient. Second, volunteers can or will not perform every job, and coordinating volunteers is a professional job in itself. Third, care is never free: it always requires an effort, yet this effort weighs harder on family. Families in chronic intensive care situations need professional support, so that they have energy for being good citizens too, starting with their role as loving family.
|Number of pages||3|
|Journal||Podium voor Bio-ethiek|
|Publication status||Published - Nov 2016|