John O’Brien – Dec. 2019
This paper explores the interlocking trends in managing our system of assistance for people with developmental disabilities that worry me deeply. The extent to which I am troubled shows in the argumentative tone of the paper, which is written as a position to initiate debate.
I am arguing against trends produced by the whole long term-care system. The managers who accelerate these trends are responding to demands shaped by the whole system, which includes me, people with developmental disabilities and their families and advocates as well as a political system that is unable to engage the adaptive challenges posed by growing numbers of people who require long terms assistance and a society in flight from difference and interdependence. It is not a matter of fixing blame on a few interfering bureaucrats or politicians with a hostile agenda but of all of us assuming responsibility for establishing a balance of relationship and transaction that will sustain good support.
I think part of the trouble comes from a way to think about personal assistance whose consequences have come to seem inevitable. The made-up word “cogworld” is a device to make a taken for granted mindset odd enough to discuss.
This paper ends with questions. I have no solution to the difficulties I identify other than the invitation to join in figuring out how to make progress in a troubled environment.