What Is Missing From the Conversation?

 Over the past several months, I have spent a great deal of time listening and reading.

….to families.

….to providers.

…..to legislators from both sides. 

….and to testimony.

For over 21 years I have lived and had many discussions about the caregiver workforce crisis.

Some thing that has become increasingly clear to me.

There is an important part of the conversation that often gets missed.

The workforce shortage is real and it is not new. This crisis has been worsening for decades. 

There are not enough caregivers.

There are not enough nurses.

There are not enough providers.

Families across Ohio and across the country are feeling that reality every day.

But there is another issue hiding underneath the workforce discussion.

A complexity gap.

And they are not the same thing.

My son Alex represents a population that often does not fit neatly into existing systems.

His injuries involved the upper cervical spinal cord, brainstem structures, autonomic regulation, and long-term ventilator support with diaphragm pacing.

His survival is extraordinarily rare, but his wellness is even more extraordinary.

His physiology does not always follow standard expectations.

Pain may not produce the response many providers are trained to expect. For instance, pain can cause his heart rate to plummet not go up as many might expect. When I say plummet, I mean within seconds, the heart rate can drop into the low 30’s/upper 20’s. 

Subtle changes can matter enormously.

Pattern recognition matters way more than checklists.

And stability depends heavily upon continuity, individualized understanding, and listening to Alex. 

The challenge is not simply finding a caregiver.

The challenge is finding caregivers who can safely learn, understand, and function within a highly individualized system of care.

That is a very different problem.

When discussions focus solely on workforce numbers, an assumption is often made:

If we simply have more providers, the problem will be solved.

For many situations, that may be true.

For others, it is not.

In Alex's case, increasing the number of aides does not solve the problem because aides are not legally permitted to perform many of the functions involved in his care. Aides are not allowed to touch medical equipment which Alex has a lot of. An aide could not be left alone without someone qualified and competent that could help Alex if say a diaphragm pacer wire comes disconnected, or his ventilator circuit comes disconnected, or his heart rate drops, etc.. 

Generalized training does not automatically solve the problem because much of what keeps Alex stable has been learned through years of observation, adaptation, and understanding how his specific body behaves.

A licensed individual does not equate with competency. 

If you go into have brain surgery, would you want a general surgeon to perform the operation? 

This is where I believe many systems struggle.

Systems are often built around averages.

Categories.

Expected trajectories.

Standardized assumptions.

But some people do not fit neatly into those structures.

Alex never has.

His injuries were not typical.

His survival was not typical.

His outcome was not typical.

His combination of extreme complexity and extreme wellness is not typical.

One phrase I have used recently is:

"Extreme complexity, but also extreme wellness."

I think that combination can confuse systems at times.

Because systems often understand extreme illness.

And they understand stable wellness.

But they do not always know what to do with someone who is medically extraordinary and yet thriving within a highly individualized environment that has been carefully built over decades.

That environment did not happen by accident.

It was built through:

observation,

adaptation,

collaboration,

failure,

learning,

faith,

and persistence.

It was built by people who refused to stop asking questions.

People who studied patterns.

People who learned what worked and what did not.

People who learned to work with the body rather than against it.(one of my favorite lines😊) 

And perhaps that is the deeper lesson.

The answer cannot simply be more of the same.

The answer cannot simply be more money, more staffing, or more standardized processes layered onto a structure that may not fit the population it is attempting to serve.

The growing population of medically complex individuals living successfully in the community deserves something more thoughtful.

It deserves a framework that recognizes complexity.

A framework that values continuity.

A framework that understands individualized physiology.

A framework that learns from what is already working.

Because families all across the country have been building these systems out of necessity for years.

Not because it was easy.

Not because it was ideal.

But because there was no existing roadmap! 

And despite all the challenges, many of these individuals are not only surviving.

They are thriving.

That success should not be ignored.

It should be studied.

It should be understood.

And perhaps most importantly, it should help shape whatever comes next.

One of my favorite phrases from Scripture is simply:

"But God."

Because over and over again, we have watched situations that looked impossible on paper unfold very differently in real life.

Not because the challenges were not real.

Not because the complexity disappeared.

But because wisdom, perseverance, relationships, faith, and individualized understanding matter too.

Our situation is unusual.

But perhaps that is exactly why it carries an opportunity.

An opportunity to learn.

An opportunity to help others.

An opportunity to ask better questions.

And ultimately, an opportunity to bring glory to God through a story that continues to remind us that impossible and improbable are not always the same thing.

#TheGoalIsLife