#ThinkAboutIt

 When the Familiar Becomes the Default

One of the most concerning things I have learned over the years is that when a system does not understand an unfamiliar situation, it may default to the nearest familiar category.

And then familiarity can begin to look like accuracy.

My son Alex has an extraordinarily rare combination of injury, physiology, technology, and physical dependence. He is cognitively intact(so weird we have to try to PROVE that)and fully self-directing, but requires highly individualized physical assistance and respiratory support.

When I needed both knees replaced, more than one person suggested—more than once—that Alex could “just go to” a facility…and that suggestion was made without having reviewed Alex’s case, ever meeting him, and certainly never asking what he thought. 😕

Specifically, it was suggested that Alex go to an ICF, Intermediate Care Facility. 

So I did what I always do…I did my own research. 

I called  the facility and another one as well. 

I asked questions and I gathered facts.

I spoke with the facilities themselves.

And what I learned did not reassure me that those settings were actually equipped to provide the individualized support Alex requires.

I shared that information back with decision makers in various ways and multiple times. And Alex has been injured close to 22 years. There are well established patterns of complexities, documentation of complexities, and most importantly, of his stability despite all of that. 

But the familiar defaults remained:

facility

ICF

skilled nursing

licensed nurse

Those are categories the system already understands.

But the question should never be:

Which existing category is easiest for the system to recognize?

The question should be:

Which model actually fits this person?

That distinction matters enormously.

Because if a person does not fit the existing framework, the answer cannot simply be to keep pushing them toward the closest familiar option.(especially this many years later)

Especially when the evidence suggests that option may be less capable of meeting the person’s actual needs.

That is why I keep coming back to this:

When the system does not understand the unfamiliar, it may default to the nearest familiar category—and then mistake familiarity for accuracy.

And this is where outliers matter.

The outlier is not a nuisance at the edge of the model.

The outlier is the test of whether the model actually works.

If a system works only for people whose needs already resemble the categories it was built around, then the edge cases are not the problem.

They are revealing the limits of the framework.

This matters especially when systems are being modernized through more standardized assessments, more standardized support levels, and more standardized provider requirements.

Because standardization can improve consistency.

But if the underlying framework does not accurately understand the most complex people, standardization may simply make the misunderstanding more consistent.

For Alex, my concern is not theoretical.

If something catastrophic happened to me, I know the system would likely reach quickly for the option it already understands:

facility placement.

But that does not mean a facility is the safest or most appropriate model for him.

It may simply mean the system has not built another structure capable of recognizing and sustaining the individualized support that already works.

That is a very different problem.

And before any system describes facility placement as “inevitable,” it should have to answer:

Did the person truly fail in the community—or did the system fail to build the support necessary for community living to remain possible?

Those are not the same thing.

If the bridge fails under the heaviest or most unusual load, we do not blame the load.

We learn something about the bridge.

#TheGoalIsLife
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