A PARTICIPATION PARABLE: By Janet Meagher
In the beginning, there was "placement", and lo we were happy when it happened, as placement was not mandated for adults who happened to experience severe disabilities. And so, we said, this is good. And placements multiplied and filled the earth.
And then, we said let us make "programs", which focus on serving clients. And clients were defined and labelled and grouped according to their labels and assigned to programs based on their labels.
And programs created services for each label, and state agencies developed unit costs for each service. And programs prospered and multiplied, and we said, this is very good.
As programs multiplied, a cry arose:
Let us evaluate these programs to see how good they really are.
And program evaluation, state regulations, quality assurance, compliance plans and other program measures were created. And they multiplied and filled volumes.
And in those times, a person arose who was a client, but who was also a prophet, and said:
I don't want to be a client, I want to be a person. I don't want a label, I want a name. I don't want services, I want support and help. I don't want a residential placement, I want a home. I don't want a day program, I want to do meaningful, productive things. I don't want to be "programmed" all my life; I want to learn to do thing I like. I want to have fun, to enjoy life and have friends. I want the same opportunities as all of you: I want to be happy.
And there was a long silence.
And, lo, everyone realised that they must look beyond their programs. But they were troubled, and they asked: How can we do this? Would not each person need their own unique program and system of support and his own individual measurement of its quality?
And the prophet replied:
Even as you say, so it should be done -- just as you do for yourselves.
If the road to hell is paved with good intentions then the road back from hell is that road where we travel together in _partnership_. Where we travel as equals and as collaborators in the journey to a new era of services where cooperation and camaraderie replace coercion and constraint.