They Say They Can Take Ventilator Patients. But What About the Person Who Breathes With a Diaphragm Pacer?
When institutional care is presented as an alternative, who is responsible for proving it can actually meet the person’s needs?
Recently, I began contacting facilities in Ohio that advertise or report an ability to care for individuals who require ventilatory support.
I wasn’t looking for a place for my son, Alex, to live.
Alex is 28 years old. He is cognitively intact, communicates, makes his own decisions, and directs his own care. He has no desire to move into a facility.
I was asking questions because institutional care continues to be discussed as an alternative when adequate community supports are difficult to obtain.
And I wanted to understand something.
Could these facilities actually care for someone like Alex?
My friend Joel, who lives in Iowa and also uses a diaphragm pacer, has been asking similar questions.
Joel contacted four facilities in Iowa that accept ventilator-dependent individuals.
According to Joel, none of the four knew what a NeuRx diaphragm pacing system was.
I contacted two facilities in Ohio.
Neither demonstrated familiarity with the NeuRx system during my initial inquiries.
Six facilities. Two states. The same troubling question.
If a facility doesn’t recognize the life-support system someone depends on, how can anyone assume it is prepared to safely provide that person’s care?
First, a little about diaphragm pacing.
Alex sustained a catastrophic injury at the cervicomedullary junction and upper cervical spinal cord in November 2004, when he was six years old.
In January 2009, he received the NeuRx Diaphragm Pacing System, implanted by Dr. Raymond Onders in Cleveland.
The system electrically stimulates his diaphragm, allowing it to contract and draw air into his lungs through negative-pressure breathing.
Alex also uses a ventilator, but this is an important distinction:
His diaphragm pacer is his primary ventilatory support. His ventilator provides supplemental assistance.
His pacer is set at 16 breaths per minute. His ventilator provides 10 assist breaths per minute.
The ventilator, at its current settings, is not sufficient to replace his pacer.
His respiratory care also involves continuous humidification, tracheostomy care, specialized monitoring, and careful attention to his unusual autonomic responses.
Alex can appear remarkably stable.
But stability does not mean the absence of risk.
Recently, Alex and his nurse, Jenny, identified and troubleshot an alarm caused by a developing problem with his diaphragm pacer cable. The pacer was still functioning, but the cable was beginning to fail.
They recognized the problem, adjusted the cable’s position, and knew when additional help would be necessary.
I replaced the cable with a backup.
That situation illustrates something we’ve learned over more than two decades.
Competent care is not simply responding when someone stops breathing. It is recognizing and addressing problems before they become emergencies.
Now imagine that alarm occurring in a facility where the staff have never encountered a diaphragm pacer.
Would they recognize the alarm?
Would they understand the difference between a patient cable problem and a failure of stimulation?
Would they know whom to contact?
Would they understand why simply turning off the pacer and relying on Alex’s existing ventilator settings is not an appropriate substitute?
These are not hypothetical concerns about convenience.
They are questions about life-sustaining respiratory care.
Here’s where federal law becomes particularly interesting.
Federal regulations governing Medicare- and Medicaid-certified nursing facilities establish requirements for individualized care, staffing competency, and respiratory services.
42 CFR § 483.25(i) — Respiratory Care
This regulation requires covered nursing facilities to provide necessary respiratory care consistent with professional standards, the person’s individualized care plan, and the person’s goals and preferences.
42 CFR § 483.35 — Nursing Services
This regulation requires sufficient nursing staff with the specific competencies and skills necessary to meet residents’ individually assessed needs.
Notice something important.
The requirement is not simply that a facility employ licensed nurses.
It addresses the competencies necessary to care for the actual people living there.
Licensure does not automatically establish competency with every specialized medical condition or life-support system.
And there’s another regulation.
42 CFR § 483.71 — Facility Assessment
Covered nursing facilities must evaluate the resources, equipment, staffing, and competencies necessary to care for their residents during ordinary operations, overnight shifts, and emergencies.
These regulations do not mean that every nursing facility must already know how to operate a NeuRx diaphragm pacer.
They do mean that a covered facility caring for someone with specialized respiratory needs must be able to meet the applicable individualized care and competency requirements.
A facility’s unfamiliarity during an initial telephone conversation does not establish that it is violating the law.
But it certainly raises questions that deserve answers before anyone treats that facility as a realistic care alternative.
Now consider the families.
Joel’s parents are 69 and 70 years old.
They have spent years supporting their son and navigating the extraordinary responsibilities that come with complex medical care at home.
I have been Alex’s primary caregiver since his injury in 2004.
Families like ours have learned specialized equipment, respiratory care, emergency responses, subtle physiological warning signs, and the importance of continuity.
Much of this knowledge has developed through years of working with physicians, specialists, nurses, therapists, and, most importantly, listening to our sons.
But parents age.
Caregivers become exhausted.
Equipment requires maintenance and replacement.
And the need for competent support doesn’t disappear simply because families can no longer provide every hour themselves.
In Alex’s case, 40 hours per week of independent nursing have been authorized, but only approximately 20–25 hours are currently being delivered.
I provide another 60 hours of billed homemaker/personal care services each week, along with substantial additional care, including overnight interventions.
There is no regular overnight staffing.
Authorized care is not the same as delivered care. And delivered care is not necessarily competent care.
When community staffing is inadequate, the conversation sometimes shifts toward institutional alternatives.
But what happens when the proposed alternative cannot yet demonstrate that it can safely provide the specialized care the person requires?
That is the gap I want people to understand.
And what about the individual’s choice?
Alex is not a child.
He is not cognitively impaired.
He does not have a guardian.
He directs his life and his care.
His inability to physically perform many tasks does not eliminate his ability to make decisions.
Physical dependence does not equal an inability to direct one’s life.
The Americans with Disabilities Act and the Supreme Court’s Olmstead decision establish important protections against unjustified institutional segregation, although their application depends on individual circumstances and current legal standards.
Community living is not merely a question of whether someone has complicated medical needs.
Nor should a shortage of qualified community caregivers automatically be treated as proof that the person belongs in an institution.
And even when a facility has the necessary clinical resources, that does not erase an adult’s rights concerning residence, treatment decisions, and informed consent.
This raises a larger question.
We have systems that assess needs, authorize services, develop support plans, and identify institutional alternatives.
But where is the corresponding demonstration that those alternatives can actually meet the person’s needs?
For individuals who rely on diaphragm pacing, what does a safe transition even look like?
Who verifies staff competency?
Who evaluates the respiratory plan?
Who confirms that the facility can obtain and maintain the equipment?
Who develops the emergency response procedures?
Who ensures the person’s existing life-support system will not be discontinued merely because staff are more familiar with another form of ventilation?
And who listens to the individual?
These questions are not an accusation that every facility is incapable of learning diaphragm pacing.
They are a request for evidence of actual capability before an option is presented as appropriate.
There’s one more thing.
Alex and Joel are not simply people who need help breathing.
They are individuals with lives, relationships, interests, preferences, goals, and futures.
For Alex, that includes standing, exercising, participating in his community, directing his daily routine, and continuing to work toward what is possible.
His life is not defined by the number of breaths a machine provides.
Respiratory support makes his life possible.
It is not the purpose of his life.
And as the parents who have provided decades of care grow older, we need to be asking difficult questions about the future of community supports.
Not after a crisis.
Not after a family can no longer continue.
Not after someone is transferred into an environment that hasn’t demonstrated the ability to safely meet their needs.
Before.
Because the ability to accept someone into a facility and the ability to safely care for that person are two very different things.
And the inability of a community system to provide qualified caregivers does not establish that institutional care is the appropriate answer.
We need individualized solutions, demonstrated clinical competency, meaningful choice, and accountability.
For Alex, the goal has never been simply to keep him alive.
The Goal Is Life. ❤️
Federal legal references
- 42 CFR § 483.25(i): Respiratory care and individualized treatment.
- 42 CFR § 483.35: Nursing staffing and competency requirements.
- 42 CFR § 483.71: Facility assessment, resources, equipment, staffing, and emergency preparedness.
- Americans with Disabilities Act, Title II; Olmstead v. L.C.: Protections concerning unjustified institutional segregation, subject to applicable legal standards.
These nursing-facility regulations apply to covered Medicare- and Medicaid-certified facilities. Other types of residential facilities may be governed by different requirements.
#TheGoalIsLife #DisabilityRights #HCBS #CommunityLiving #DiaphragmPacing #SpinalCordInjury #PatientSafety #CaregiverSupport #Olmstead #MedicalComplexity
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