Who Determines Whether a Placement Is Medically Appropriate?
Alex and his good friend, Gabe, watching the World Cup together.
I keep asking the same question:
What is the actual plan?
That question has become even more important as we continue trying to understand who is responsible for evaluating the medical appropriateness of any suggested placement for Alex.
DODD has acknowledged the seriousness of Alex’s situation and the need for any guidance regarding his care to reflect his full medical complexity. But we were also told that DODD cannot provide the type of clinical consultation or physician-level review we requested, and that direct communication with Dr. Laura Sorg (the medical director) is not something DODD can facilitate for individual case review.
That raises a very serious question:
Who determines whether a placement is medically appropriate?
If DODD cannot provide physician-level clinical review, and the county board is not clinically equipped to evaluate Alex’s rare medical complexity, then who decides whether a suggested facility could safely meet his needs?
This is not a minor issue.
This is not a paperwork question.
This is not simply about whether a facility has a bed, staff, or a category that appears to fit on paper.
For Alex, medical appropriateness cannot be reduced to:
“We take vents.”
“We can learn a diaphragm pacer.”
“We have 24/7 staff.”
That is not enough.
Alex’s Stability Is Not Accidental
Alex sustained a catastrophic high cervical/brainstem-level injury when he was 6½ years old. His injury involved the cervicomedullary junction/upper cervical cord area and resulted in profound physical dependence, respiratory complexity, and significant autonomic instability.
His survival itself was extraordinary.
But Alex’s long-term stability is not accidental.
Alex has lived at home for more than 21 years because his care has been built, refined, individualized, and sustained around his actual body, communication, equipment, and responses. Getting to this stability was not easy.
His stability depends on people who understand his respiratory support, diaphragm pacer, autonomic instability, positioning, equipment, early warning signs, and communication.
His monitors matter, but Alex often recognizes and communicates what is happening in his body before a monitor clearly shows the problem.
His heart rate, blood pressure, color, voice, temperature regulation, and other signs can shift quickly. Pain, bladder/bowel changes, positioning, equipment issues, illness, or other stressors may affect him differently than standard assumptions would anticipate.
That is why familiar, individualized care is not a luxury.
It is a safety factor.
This Cannot Be Reduced to Equipment
One concern I have is that Alex’s care could be reduced to equipment familiarity.
But Alex’s care is not simply:
“Does the facility take vents?”
or
“Can someone learn a diaphragm pacer?”
The diaphragm pacer is his main breathing support and is central to his stability. But his care is not just device management.
His care requires understanding the interaction between his respiratory support, high cervical/brainstem-level injury, autonomic instability, positioning, communication, equipment, and body-specific warning signs.
A person or facility learning the name of a device is not the same as understanding Alex’s rare, complex, lived medical reality.
“Complex Needs” Is Not Always the Same as “Complex Medical Needs”
This distinction matters.
Many systems are built to support people with complex needs. That is important.
But complex needs are not always the same as complex medical needs.
Alex’s needs involve rare medical technology, respiratory support, autonomic instability, brainstem-level injury, rapid physiologic changes, and highly individualized responses.
Those needs cannot be safely captured by generic staffing categories, task lists, cognitive/behavioral support models, or facility assumptions.
A checklist may show that a task was assigned.
It does not show whether the person providing care can recognize and respond to life-threatening changes in time.
The Same Message Has Been There From the Beginning
This concern is not new for our family.
When Alex was a child on the rehab floor after his injury, he had been deemed unable to participate in rehab at that time. The rehab floor functioned largely as a place to teach us how to take him home “as is.”
During that time, a caseworker repeatedly reminded me, in front of Alex and his siblings, that there were places Alex could go.
That message was constant.
Now, more than 21 years later, after Alex has lived safely at home and remained medically stable through individualized care, it is deeply concerning to see facility placement still treated as the default backup when the system has not built enough home-based support.
Recent Examples Show the Gap
We recently went through an almost nine-month process to get a provider approved for hours to help Alex at home. We are grateful that Jenny is finally approved.
But Alex’s needs did not pause for nine months.
His respiratory needs did not stop.
His autonomic risks did not stop.
His equipment needs did not stop.
His positioning needs did not stop.
His communication needs did not stop.
His need for trained, consistent, familiar support did not stop.
I am here, but the question is, what is something catastrophic happens to me? The answer should not be “where would Alex go” but instead “how can Alex be supported at home.”
This week, another example came up. Alex needed diaphragm pacing batteries. These batteries support the diaphragm pacer, which is Alex’s main breathing support. Medicaid does not cover them. In the past, the local board has reimbursed them. This time, after the batteries had already been purchased, we were told reimbursement could not be provided because local funding is being cut due to the failed levy and fiscal emergency.
I understand local boards face financial constraints.
But this illustrates the exact medical-complexity gap I am trying to explain.
When Medicaid does not cover an essential support, local funding disappears, provider approval takes months, and facility placement is treated as a possible fallback, where is the actual plan for preserving safe home-based care?
A diaphragm pacer battery is not just a battery.
For Alex, it is connected to his breathing support. It’s the main support for breathing!
A Facility Is Not a Plan by Itself
A facility is not a backup plan simply because the system says the word “facility.”
A building is not a care plan.
A body in the room is not a care plan.
And a facility is not automatically safer simply because it is called a facility.
If the system cannot provide clinical review of Alex’s full medical complexity, then how can the system safely suggest or rely on facility placement as a backup?
If home care is difficult to staff and facilities are also difficult to staff, moving people away from home does not solve the crisis. It only moves the risk.
If a facility has never heard of a diaphragm pacer, does not understand Alex’s autonomic instability, does not know his communication, and does not recognize his early warning signs, then that is not automatically safer than the home setting where his care has been built and proven for more than two decades. He
What Is the Actual Plan?
That is why I keep asking:
What is the actual plan?
Who evaluates whether a placement is medically appropriate?
Who determines whether a facility can safely support rare medical technology?
Who determines whether staff understand high cervical spinal cord injury and brainstem/autonomic instability?
Who determines whether the setting can recognize Alex’s early warning signs?
Who determines whether his communication, privacy, faith, relationships, and community life will be preserved?
Who determines whether home remains the most integrated appropriate setting?
For Alex, home is not simply our preference.
Home is where his care has been built. Home is where he was stabilized and remains stable.
Home is where his communication is understood.
Home is where people recognize the signs that matter.
Home is where his medical stability, family, faith, relationships, privacy, and community life come together.
A paperwork delay cannot be allowed to become an institutionalization risk.
A funding gap cannot become a breathing-support gap.
A facility cannot be the backup plan for a system that failed to build a home-based safety net.
Presence is not safety.
A body in the home is not a care plan.
And “complex needs” is not always the same as complex medical needs.
The goal cannot be survival alone.
The goal must be life.
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