In my last post about Patient and Family-Centred Care, I made a passing reference to ‘fake work’ – a term I use to describe the administrative busywork required by parents and families in order to access and maintain services. I’ve written about it before but it’s worth repeating.
When I say fake work I am to referring to the paperwork, goal-setting, output measurement, follow-up, assessment etc, required of parents and patients, by institutions and agencies, in order to avail ourselves of their services or to prove that a service is working. Some of it masks as ‘intake’, some of it is job evaluation or monitoring of the employee, some of it is for auditing purposes so that the institution can decide about funding, placement etc. Whatever the institution’s reasons for the paperwork, it only adds to the family’s burdens.
The work of jumping these hurdles is fake because it’s performed by the family for the benefit of the institution, but often framed as some sort of benefit or helpful tool for the family. In addition, the output–the paperwork–serves as a blunt instrument by which a family might inadvertently strip themselves of services. In some cases, service delivery is linked directly to the child’s performance–if the family can’t show on paper that an intervention is successful according to stated criteria, they risk losing their services. Knowing this, form-filling becomes an exercise in creative non-fiction (or outright fiction, depending). I recall walking the line between honest-to-god-truth and good-enough-truth many times.
Again, as with many Patient and Family-Centred Care initiatives, fake work primarily serves the institution–it’s their requirement, not the family’s–and ends up discriminating against all sorts of people: those who don’t speak English, those who work all day, those with other children, those without community supports. Frankly, disadvantage goes to anyone who is not an educated, middle-class, stay-at-home parent.
To be clear, I’m not referring to the services themselves. Whether the therapies and interventions themselves are useful is beside the point. The commentary here is that the extensive requirements to report and justify and prove eligibility over and over again encourages parents to bend the reporting of their situations to fit the criteria. Parents who are successful at obtaining services for their children know how to work the system and say what the administrators or assessors want to hear. Parents who are good at completing the forms get more services and resources. In this current environment of brutal service delivery rationing, those who are not good at fake work, and who arguably likely need more support, end up with less.