The Name Changed. The Structure Didn’t.
Alex is always working on learning.
The Name Changed. The Structure Didn’t.
Over the past several months, I have been involved in ongoing conversations with Ohio DODD, nursing providers, physicians, respiratory therapists, and legislative offices regarding high-acuity home care and the structural gaps affecting medically complex individuals living at home.
One realization keeps becoming clearer:
The language changed.
The setting changed.
But much of the underlying structure did not.
Many current systems were originally built during the MRDD era of the 1960s–1980s.
At that time:
care was largely institution-based,
the primary focus was developmental and cognitive disabilities,
staffing models centered around supervision and routine support,
and there was limited expectation that individuals with extreme medical complexity would survive long term.
Then came major civil rights and disability-rights changes.
In 1990, the Americans with Disabilities Act broadened the understanding of disability to include physical and neurologic disabilities while emphasizing access, rights, and inclusion.
In 1999, Olmstead v. L.C. established the legal expectation that individuals should receive services in the least restrictive setting possible, including at home when appropriate.
Over time, counties removed outdated terminology and Ohio formally changed the language statewide.
But while individuals increasingly moved into the community and home settings, the system itself largely remained rooted in the same structural assumptions:
task-based care,
generalized staffing models,
standardized assumptions,
and developmental/cognitive frameworks.
At the same time, medicine advanced dramatically.
Individuals with diagnoses and injuries that previously would not have survived are now surviving and living at home for decades.
My son Alex is one of those individuals.
Alex has survived and thrived for more than two decades after a catastrophic high cervical neurologic injury involving autonomic instability and diaphragm pacing.
His stability did not come from forcing standardized systems onto his body.
It came from learning how to work with his body instead of against it.
It came from:
careful observation,
pattern recognition,
adaptation,
collaboration,
and years of lived physiologic understanding gained through extremely difficult experiences.
Alex is not “a body in a bed.”
He is highly intelligent.
His thinking is clear.
He understands his body extraordinarily well.
What he primarily needs are capable hands that can safely carry out what his body is not physically able to do right now.
He does not need someone to supervise his thinking, replace his judgment, or create an entirely new plan for him based on generalized assumptions from lower-acuity experiences.
That distinction is critical.
Physical dependence does not equal cognitive dependence.
Yet many systems supporting waiver-based care are still structurally rooted in models originally designed around developmental and intellectual disabilities, where the assumption is often that:
the person needs decisions made for them,
needs supervision,
or requires others to direct their plan of care.
That structural assumption becomes deeply problematic in high-acuity neurologic injury.
Because in cases like Alex’s:
care is not task-based,
physiology is dynamic,
early warning signs are subtle and individualized,
and safe care depends heavily on familiarity and real-time interpretation.
Even something as simple as “taking vitals” can become more complicated than it appears on paper.
During a recent appointment with Alex’s primary care physician, we discussed how numbers alone do not always accurately reflect Alex’s physiologic stability.
Sometimes interventions based only on standard assumptions can unintentionally worsen instability rather than help.
I explained it this way:
“The baseline is different. Look at Alex. Ask Alex. He is often the best indicator of what his body needs to remain stable.”
That statement reflects a much larger issue.
The question is not whether vitals matter.
The question is whether they are being interpreted within the correct physiologic context.
This is one reason task-based models often fail in high-acuity home care.
Real-world care frequently requires:
Pattern recognition
Testing targeted interventions
Evaluating physiologic response
Willingness to adapt and change direction in real time
One recent example involved unexplained nighttime oxygen instability.
Alex’s oxygen levels began dropping during sleep, then recovering spontaneously. Initially the issue was intermittent, but eventually became more consistent and symptomatic.
Supplemental oxygen helped somewhat at first. Later, adjustments to diaphragm pacer settings provided temporary improvement. An ICU evaluation did not identify a clear explanation.
Eventually, through collaboration with an experienced respiratory therapist from a DME company specializing in complex care, a different approach was considered:
improving oxygen retention without increasing ventilator burden.
A small increase in PEEP from 5 to 6 significantly improved stability.
The solution did not come from a standardized protocol.
It came from:
experience,
collaboration,
individualized reasoning,
and understanding how Alex’s body uniquely responds.
This is the kind of care many high-acuity individuals now require.
Not generalized supervision.
Not routine task completion.
But dynamic, experience-based clinical reasoning.
And this becomes even more important when discussing stress and environmental change.
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.
Stability itself becomes part of the treatment.
This is why continuity and caregiver familiarity matter so deeply.
Unfortunately, many families encounter responses 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.
Because 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.
Ohio has successfully moved more individuals into the community.
Now the challenge is ensuring the system itself evolves to recognize the realities of the people it now serves.
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