Advocacy Axioms: A Different Way to Think About Medically Complex, Person-Directed Care

 Advocacy Axioms: A Different Way to Think About Medically Complex, Person-Directed Care

Over the past several years, one thought has continued to get tossed around in my noggin. Sometimes the greatest barriers are not a lack of compassion, but instead the way things are viewed which can really make a difference. 

Systems naturally develop ways of measuring need, allocating resources, and evaluating outcomes, and those things matter.

But sometimes the questions we ask, or way we ask, determine the answers we find.

Perhaps we need to ask different questions and/or in different ways, perhaps from a different perspective. 

These are some of the principles that have emerged through more than two decades of walking alongside catastrophic spinal cord injury, extraordinary medical complexity, and a young man who continues to direct his own life despite profound physical dependence.

Advocacy Axioms…nuggets I call these. 

The goal is life, ..Not merely survival…Not simply completing tasks.

Life.

A life with purpose, relationships, growth, community, dignity, and opportunity.

Avoid crisis.

The best crisis is often the one that never happens. Our motto is always avoid crisis. A crisis with Alex can be, as I described it once, like unleashing a beast you would not have. 

The goal of support is not simply to respond to crises. It is to help prevent them.

Excellent care is proactive before it is reactive. 

What a neat thought isn’t it? 

The absence of crisis is not evidence of the absence of need. It is often evidence that someone’s needs have been consistently and skillfully met.

Success should never become the justification for removing the very supports that produced it.

When something is working well, the first question should not be, “What can we remove?”…what a weird thought, but it happens. 

It should be: “What is working so well that we should preserve it?” Hmmm…

When systems evaluate only visible needs, they risk overlooking the invisible work that keeps people healthy.

The healthiest outcomes are often built upon thousands of unseen decisions..thousands. 

Healthy is an outcome. It is not a diagnosis.

Health can be the result of exceptional support, individualized knowledge, prevention, and persistence.The healthiest outcome is often the least visible one…nothing dramatic happened.

Prevention rarely makes headlines because nothing happened. 

Every avoided hospitalization, avoided pneumonia, avoided pressure injury, and avoided emergency represents countless acts of intentional and thoughtful care. 

Physical dependence is not the same as cognitive dependence.

A person may require hands to carry out their decisions while remaining fully capable of making those decisions themselves.

The amount of assistance a person requires is not the same as the complexity of the assistance they require.

Two people may require help with every activity of daily living.

The knowledge, judgment, and skill required to provide that help may be entirely different.

The person living inside the body is often the greatest expert on that body.

Listening is not simply respectful.

It is clinically valuable and wise. 

Person-directed care is more than honoring preferences.

It means recognizing that the individual’s lived experience may provide essential clinical information.

Support should extend a person’s abilities—not replace their autonomy.

Helping someone physically should never require taking away their voice. Ouch..but it happens more than most realize. 

The least restrictive environment is not merely the place where someone can survive.

It is the place where they have the greatest opportunity to live.

Stability should not be confused with simplicity.

Someone who is medically stable may still have extraordinary medical complexity.

Their stability may simply reflect that the right supports are consistently in place.

Before asking whether someone still needs support, ask what has made them successful.

Outcomes do not happen by accident.

Perhaps the most important question we can ask is not:

“How much help does this person need?”

But rather:

“What supports have allowed this person to live, thrive, avoid crisis, and participate fully in life?” What works? 

Because if we fail to recognize the invisible work behind visible success, we risk dismantling the very supports that made that success possible.

And when that happens, we haven’t discovered that the need was gone.

We’ve only discovered how much the support mattered.

#The goal is life….and everything should “support” that.