The First Metric
“I’m not opposed to metrics. I just prefer the ones that reinforce my worldview.”
–Tim Vogt
There’s a term in the medical profession: iatrogenic disease.
It’s the kind of malady that comes from an interaction with the medical system. Think of staph infections, bedsores, medication mix-ups or an unanticipated side effect of a procedure.
Doctors, of course, take the “Hippocratic Oath,” swearing to “do no harm or injustice” to their patients. Nurses make a similar commitment through “The Nightingale Pledge.”
But medicine and science is always evolving, so this vow is difficult to live up to without a crystal ball.
For example, before human beings discovered germs, a common cause of death was from infections from the unwashed hands of physicians. People believed that if the doctor was “a Gentleman,” there was no need to clean his hands before attending to a patient!
That belief had tragic consequences for many people.
In our day program at Starfire, we had to track “Unusual Incidents” and send them to the local government every quarter. This was a way of insuring we were reporting and addressing any trouble people with disabilities experienced in our programs.
These “Unusual Incidents” could range from simple things – burns from handling a hot pan in a cooking class, tripping over a curb and scraping a knee – to more serious things like getting lost in a downtown crowd or reporting that two people with a disability had touched each other sexually and we couldn’t discern if consent was present.
Sometimes, “Unusual Incidents” rose to the level of “Major Unusual Incidents,” such as serious reports of abuse, someone needing an ambulance after having a grand mal seizure, or in one case, a staff who neglected to do the Heimlich maneuver as someone in their care choked on a bit of their lunch, even though they’d been thoroughly trained on it.
We took these reports seriously and wrote up plans of correction. We talked with families and caregivers to fill them in on what happened. We revised policies to prevent any future repeats and disciplined staff under who’s watch it had occurred.
At the high point of our group-based programs, I calculated that we had one “Unusual Incident” for every 648 hours of service we provided over a three-year period.
Once we desegregated our programs and completely individualized our service, I tracked those numbers over another three years to see if there was a difference.
I found that number had dropped to one “Unusual Incident” every 2,764 service hours.
That means that people with disabilities in our group-based settings were 400% more likely to experience trouble as a result of being in our group-based programs than they were when we supported them uniquely and individually.
It was easy to understand why. Staff were managing groups of three to ten people with disabilities at a time in our groups. They were distracted and lost count, or helping someone else while another person had trouble.
That’s an “iatrogenic” trouble. It’s trouble that’s caused by their involvement in our care systems.
When I share that data with other people, their eyes get wide and they seem to grasp the reality of the problems that face people with disabilities when they spend their days in groups together.
But this data doesn’t even scratch the surface of the danger our care systems inflict on people with disabilities. The more we studied grouping effects of our system on people with disabilities, the more we came to understand the social violence our groups create for them. They become segregated and isolated, and eventually lonely to the point of being nearly anonymous to anyone outside of the rotating care providers we hire and the other people with disabilities trapped in our care.
And that, of course, begets an entirely deeper danger: No one is there to notice if someone is choking. No one is there to check in on a person’s well-being in the service system, to look for abuse or neglect.
And what about the psychological violence of never being known?
In short, this loneliness, in my experience, is the most worrisome iatrogenic disease people with disabilities contract from interacting with our system of care.
Every service our system offers purports to emanate from some good intention. But more often than not, the help we offer starts in the wrong place, assuming that all people with disabilities are alike, and that the economic efficiency of grouping people with disabilities is a good thing to achieve.
These institutional assumptions come from cultural assumptions and reinforce them, giving them validity and energy. In turn, the cultural assumptions give validity and energy to our institutional assumptions.
It’s a vicious cycle that no one seems able to interrupt at the scale of the problem.
Over my career, which has coincided with the emergence of “big data,” people have asked me for metrics, both as a way of holding Starfire accountable to the public and charitable funds it received, as well as a means of determining if the work we do is even effective.
This hope for proof became especially critical as we started to understand a new way was necessary. “How do you know it will work?” and “Why not do both?” were questions I felt pressure to answer in order to convince people that we were on the right path. Never mind that they rarely held group-based models to as high a standard as they did us.
I do believe data points and metrics are important, but in reality, most proof points are too far downstream.
We have to start in a similar place to doctors in the 1800’s as they started to confront the reality of iatorogenic disease. They had to look for a cause of trouble and found they were the culprit. They had to start washing their hands.
We need to take a similar journey of accountability and introspection in our own system of non-profits and helping organizations.
Instead of starting with data that proves what helps, maybe we should take a step back and start with eliminating what hurts.
The first metric for our system to take stock of itself is best counted with a simple question: Does my program ask people with disabilities to compromise their unique identities, personal purpose and sacred individuality as a condition of receiving the help I offer?
If so, my program is part of a lifelong pattern that leads to terrible outcomes, and many violences, for the people I claim to care for. That’s an iatrogenic problem.
If we don’t remove the harm that is baked into our service models and social assumptions, we will never be able to overcome that and get to a place of support and inclusion.
We must wash our hands, so to speak, of the segregation and group-based services we’ve been forcing upon people with disabilities. If not, everything we try will fall short of what we hope.
From there, we can start to take action. If the good and important supports we offer – learning, building out personally meaningful days, getting a break from our families, engaging in important therapies, finding jobs or good places to live – originate in a group-based structure, we must take steps, either small or large, but absolutely forward, into more personalized iterations if we are to truly win a more inclusive future.
It won’t be easy, as “groups” are an entrenched social and organizational structure around disability.
But organizations are exploring new models. Even State and Federal entities are encouraging this evolution in our field.
It’s beautiful.
And it’s slow work.
Part of that slowness is because it is also difficult work. We have to confront our own egos. We have to find new ways of financially sustaining our organizations that don’t depend on segregated billing schemes. We have to assume that each person with a disability fully belongs to their community, family and selves, rather than assuming we are the end point of care for them. That hurts to consider, but it’s worth it.
It’s hard to let go of things we are comfortable with. But what we have isn’t worth keeping, if we really take stock in how it is affecting the people it’s supposed to help.
Where we start from matters, and our social mindset around disability is in desperate need of a better starting point, one that will be a guiding light to our culture and enhance the belonging of all human beings, including people with disabilities.
Let’s start with the first metric, and see where we might get to from there.