Stability
Sometimes systems talk about “choice” as if people with disabilities are being offered equal options.
But that is not always what is happening.
If the supports that allow a person to live safely at home are weakened, restricted, or removed, and no safe home-based alternative is built, then a facility may start to look like the only option.
But that does not mean the facility is the best option. It may only mean the system made home impossible. That is not real choice nor is it true community living.
For medically complex people, the supports around them are not extras. They may be the very reason the person is stable, healthy, and able to remain in the community.
When those supports are pulled away, the person may become less stable. Then the system may point to that instability as proof that the person needs a facility.
But the crisis may have been created by removing the support that was preventing the crisis in the first place.
That is dangerous!
For my son Alex, this is not theoretical. He has lived at home for more than 21 years after catastrophic injuries because highly individualized supports were built around him. His stability did not happen by accident nor did it happen in a specialized setting. Alex was stabilized at home. It happened because I learned his body, listened to him, responded early, and helped prevent crisis..and I prayed. I have always sought God’s wisdom and direction
A facility should not become the default simply because the system failed to protect the supports that made home work.
I have lived this concern.
When I was struggling physically and later needed knee replacement surgeries, the pressure toward facility placement surfaced. Instead of the system first asking how to preserve Alex’s stability at home while I recovered, facility placement was raised as an option.
The same thing happened during one of the hardest seasons of our lives, when my ex-husband sued both Alex and me to evict us from the home we had lived in for 18 years.
At a time when Alex’s stable environment was already being threatened, it was suggested that Alex could “just” go to a facility and I could rent an apartment.
But there is no “just” in that sentence.
Not for Alex.
Not for someone whose stability depends on familiar surroundings, known equipment, established routines, consistent support, trusted people, and a body that can be destabilized by stress, disruption, and unfamiliar care.
That suggestion may have sounded practical to someone looking at housing or caregiving as separate problems.
But Alex and I are not separate problems to be solved by separating us.
For Alex, home is not simply a roof over his head. Home is part of the support structure that has helped keep him medically stable for more than 21 years.
So when systems suggest facility placement during moments of family crisis, caregiver illness, housing instability, or physical vulnerability, they may not realize they are adding medical risk to an already fragile situation.
That is why this matters.
A facility should not become the default simply because a family is under pressure, a caregiver is recovering, housing is threatened, or the system has not built a medically competent home-based backup plan.
That is not real choice, nor is it person-centered planning. And for medically complex people, it can be dangerous.
Alex’s medical complexity has not only challenged family caregivers or home-care providers. It has challenged ICU physicians in major hospitals.
There have been times in two different large hospitals when I was given the “death talk.”
There have been times in PICU when multiple doctors stood around, puzzled by what Alex’s system was doing.
There was a moment in ICU at Ohio State when the question became, “What is he doing now?”
At Rainbow Babies and Children’s, one resident tried to explain Alex’s complex system to a colleague and said, “You just have to experience Alex.”
That was in a PICU.
That matters.
Because if Alex’s body has challenged ICU-level understanding, then suggesting he can “just” go to a facility with generalized staffing, higher ratios, rotating workers, and less familiarity is not a safe plan.
That is not disrespectful to facilities.
It is reality.
A setting should not be presumed appropriate simply because it is medical. The question is whether it understands this medical complexity.
A facility saying it accepts ventilators does not mean it understands Alex’s diaphragm pacing, ventilator interaction, autonomic instability, airway clearance needs, temperature dysregulation, stress responses, positioning, equipment, communication, and rapid-response needs.
A nurse having a license does not automatically mean that nurse has case-specific competency for Alex’s body.
A facility having staff does not automatically mean the setting is safe for him.
Moving a uniquely injured, medically complex person into a generalized setting without documented case-specific competency is not a backup plan.
It is a risk plan.
A facility default, without demonstrated competency, may look like a solution on paper while functioning like a disaster plan in real life.
The promise of community living means very little if the supports that make community living possible are taken away — and then institutional placement is presented as the only remaining option.
That is not informed choice.
That is a system backing someone into a corner.
And for medically complex people, that corner can be dangerous medically, emotionally, physically, and legally.
Community living should not mean: “You can stay home only until the support becomes inconvenient for the system.”
It should mean building and protecting the supports that allow people to live safely, fully, and with dignity in the place they call home.
For Alex, the question should not be: Where can we put him?
The question should be: What does Alex need to remain stable, healthy, self-directed, safe, and living?
That requires more than a bed. More than a facility name. More than a license. More than a yes to the question, “Do you take vents?”
It requires understanding, case-specific competency, and listening to Alex.
It requires valuing the knowledge that has kept him alive and stable for more than two decades.
The goal should not be to find somewhere to put a medically complex person.
The goal should be to understand what that person actually needs to live safely and fully.
That requires better questions.
And it requires systems willing to listen to the answers.
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