The Baseline is Different

 

When the System Doesn’t Understand the Baseline

Over the past several months, I have been involved in ongoing conversations with Ohio DODD and legislative offices regarding high-acuity home care, nursing approvals, and the structural gaps affecting medically complex individuals living at home.

One of the clearest realizations to come from these discussions is this:

The system has evolved in language and setting—but not always in structure.

Many current systems were originally designed around developmental and cognitive support models, task-based care, and generalized assumptions. But today, more individuals are surviving severe neurologic injuries and living at home with levels of medical complexity that often require highly individualized physiologic understanding.

My son Alex is one of those individuals.

Alex has a high cervical injury, autonomic instability, and uses a diaphragm pacer. Over many years, through setbacks, observation, collaboration, and constant adaptation, Alex and those closest to him have developed a deep understanding of what helps keep him stable.

One of the ongoing challenges is that standardized approaches often do not fit highly individualized neurologic physiology.

For example, during a recent appointment with Alex’s primary care physician, we were discussing “vitals” and monitoring. I was trying to explain something that is difficult for many systems to understand:

The baseline is different.

In Alex’s case, numbers alone do not always accurately reflect physiologic stability. Sometimes interventions based only on standard assumptions can actually worsen instability rather than help.

Safe care often depends on:

• recognizing individualized patterns,

• understanding subtle changes,

• integrating what Alex himself reports he is experiencing,

• and adapting thoughtfully instead of forcing standardized responses.

At one point during the discussion, I said:

“Look at Alex. Ask Alex. He is often the best indicator of what his body needs to remain stable.”

That statement reflects something much larger than our individual situation.

Alex does not need someone to supervise his thinking, direct his decisions, or create a completely new plan for his body. He already knows what has helped maintain stability over many years.

What he primarily needs are capable hands that can safely carry out what his body can no longer physically do on its own.

The difficulty comes when systems built around generalized assumptions and lower-acuity experiences begin overriding individualized knowledge with standardized approaches that may not fit his physiology.

In high-acuity neurologic injury, this can create instability rather than improve safety.

Stress itself also takes on a very different meaning.

For Alex, stress is not simply emotional. Changes in environment, unfamiliar caregivers, disruptions to established routines, or physiologic instability can trigger very real autonomic responses affecting blood pressure, heart rate, oxygen levels, and overall stability.

This is one reason continuity and familiarity matter so deeply in high-acuity home care.

Over time, I have heard statements such as:

• “It will be different, but it will be good.”

• “You’re just anxious.”

• “You want perfect.”

But this is not about perfection.

It is about recognizing that some individuals require a fundamentally different type of care than systems were originally designed to support.

Placement decisions should be based on clinical appropriateness—not system limitations or staffing shortages.

For some individuals, the question is no longer home versus facility—it is whether the system recognizes that home is the only clinically appropriate setting.

I continue sharing these experiences because I believe this issue extends far beyond our family. Advances in medicine are allowing more medically complex individuals to survive and live in the community. Systems now have to evolve to recognize the realities of that care.

This is not simply “higher-needs caregiving.”

It is dynamic, individualized, high-acuity clinical support that depends on familiarity, interpretation, adaptation, and trust.