Imagine a world where a simple breath becomes a luxury, a battle against an invisible enemy. This is the reality for countless individuals living with debilitating conditions like ALS, spinal cord injuries, and neurological diseases. Their story is one of resilience and a desperate search for a basic necessity: the ability to breathe.
A Fight for Air: Navigating the Ventilator Maze
In a heart-wrenching turn of events, Michael DiPlacido, an avid scuba diver, found himself diagnosed with amyotrophic lateral sclerosis (ALS) after a series of fainting episodes during a vacation in Mexico. This incurable disease often requires mechanical ventilation, a lifeline for those who can no longer breathe on their own.
Michael's son, Adam, embarked on a daunting mission to find a suitable care facility for his father, now dependent on a ventilator. However, the journey revealed a shocking truth: none of Missouri's nearly 500 nursing homes could accommodate them. Adam's words echo the frustration of many: "I never thought it would be easy, but I never imagined it would be this challenging."
A KFF Health News investigation uncovered a disturbing trend, shedding light on the flaws and gaps in care for some of the country's most vulnerable individuals. Tens of thousands of Americans, permanently reliant on ventilators, face immense barriers, highlighting the fragmented nature of the US healthcare system and the added struggles of severe illness.
The Battle for Ventilator Access: A Costly War
The investigation revealed frequent roadblocks for patients trying to secure appropriate home ventilators from their insurers. The consequences are dire: some patients end up spending hundreds of thousands of dollars on private nurses to ensure they don't succumb to their condition overnight. For those requiring nursing home care, the situation is no less daunting, often forcing them to relocate to other states, away from their support systems.
Dr. Tyler Rehbein, who treats ALS patients, paints a stark picture: "It seems insurance companies expect these individuals to live the rest of their lives tethered to a wall outlet." He often finds himself battling insurers to secure coverage for battery-powered ventilators, a necessity for many.
Specialized Care: A Rare Commodity
The scarcity of specialized care units for ventilator patients is alarming. A KFF Health News analysis of federal data shows that only 347 of the nation's approximately 14,750 nursing homes have dedicated units for ventilator care. This means that in 15 states, including Missouri, there are no nursing homes equipped to handle these complex cases.
From April to June 2025, the analysis found that fewer than 10% of nursing homes had long-stay residents breathing with the assistance of invasive mechanical ventilators. This statistic underscores the dire need for specialized care and the challenges faced by patients and their families.
The Cost of Home Care: Perilous and Pricey
Many ventilator-dependent individuals prefer to remain at home, but the reality is often perilous and expensive. While some state health programs provide ventilator care for low-income patients, the process is fraught with bureaucratic hurdles and waitlists, which can take months to navigate.
Insurers often resist providing advanced home ventilators, which can cost over $10,000, until patients have significantly lost their breathing capacity. However, these expensive models offer significant advantages, including alerts for collapsed lungs, airway leaks, and other malfunctions. Tyler Rehbein, an assistant professor of neurology, emphasizes the emotional toll: "Feeling suffocated is a horrific feeling, and it can persist for months as ALS patients battle with insurers."
A Personal Story: David Goldstein's Journey
David Goldstein's journey with ALS began with a limp in the fall of 2022. It took six months for doctors to diagnose him with this neuromuscular disorder, also known as Lou Gehrig's Disease. ALS attacks the nerve cells in the brain and spinal cord, affecting muscle control, including breathing. It eventually leads to complete paralysis, while most patients remain mentally alert.
Now 69 and on a ventilator, David can only move his eyes and mouth. His ex-wife, Janis Goldstein, who has power of attorney, shares their struggle: "We've spent around half a million dollars, mostly on nurses and aides. We raised much of it through online campaigns and a fundraiser featuring country singer Larry Gatlin."
Janis plans to move David into a nursing home, but she fears the lack of overnight supervision, concerned that a slight shift in position could prevent him from calling for help through his eye-tracking machine.
Ventilator Deserts: A National Crisis
Michael DiPlacido's son, Adam, spent weeks searching for a facility in Missouri that could accommodate his father, who required a ventilator with a tracheostomy tube. The only potential option faced a setback when its lone respiratory therapist resigned.
Adam's frustration is palpable: "It's incredible that in Missouri, there's not a single place that can take a patient like my father." Michael eventually moved to a nursing home north of Chicago, a five-hour drive from St. Louis. However, the distance proved too much, and Michael left after three months.
Adam helped his father move to a long-term care hospital in suburban St. Louis, but the cost was exorbitant, with Michael's insurer refusing to cover hospital-level acute care. Adam then assisted his father in moving to another Illinois nursing home, an hour away, which they initially rejected due to online reviews and a Medicare warning about abuse.
After finding this facility deficient, Michael opted for a private nursing home company that provided care in his home, at a cost of $960 a day. Unfortunately, Michael's health rapidly deteriorated, and he was admitted to a hospice facility in October, where he passed away later that month at 75.
The Nursing Home Dilemma: A Lack of Specialized Care
Gene Gantt, a respiratory care consultant, highlights the issue with state Medicaid programs, stating that less than half provide adequate reimbursement rates for ventilator patients. Most state Medicaid payment formulas don't measure outcomes or incentivize nursing homes to provide better care, such as weaning patients off ventilators or preventing infections.
David Gifford, the chief medical officer for the American Health Care Association, acknowledges the challenges: "Equipping a nursing home with ventilators and getting state approval is expensive, and outside urban areas, many markets lack enough local patients who need ventilators to make it financially viable."
Derek McManus' Story: A Victory Against Insurer Denials
Derek McManus' journey with ALS began with a weakening right hand and occasional twitching. By August 2024, his lungs were operating at only 78% capacity. Doctors often prescribe advanced home mechanical ventilators for ALS patients due to the rapid progression of the disease.
These machines deliver high-pressure air through a mask or a tube down the airway or via a tracheostomy. They can calibrate themselves based on a patient's breathing and have alarms to detect leaks, blockages, and malfunctions. They can run on portable power sources and backup batteries, allowing patients to talk and eat.
However, some insurers have "fail first" policies, requiring patients to try simpler respiratory assist devices before authorizing ventilators. These simpler machines, like those used for sleep apnea, are less effective in removing carbon dioxide and lack safety features.
In November 2024, McManus' insurer denied his physician's request for a ventilator, stating that he hadn't "failed treatment" with the simpler device. By April, Derek's breathing capacity had dropped to 60% of normal. His wife, Lesley, feared he would suffocate overnight if his basic device stopped working, as it lacked a safety alert.
Lesley appealed to an independent medical reviewer, who overturned the insurer's decision and ordered them to provide a ventilator. The doctor emphasized the importance of the machine's alarm system and its ability to automatically clear airway secretions, protecting Derek from pneumonia.
Since getting the new machine, McManus says he's breathing easier, both physically and emotionally. "If I'm not breathing right, it will give an alert, and it will let us know if I don't have the mask on properly," he said.
Insurance Policies: A Complex Web
John Hansen-Flaschen, a pulmonologist, notes that some patients give up when insurers deny their requests, lacking the energy to appeal. Doctors treating neuromuscular disorders report the most resistance from private Medicare Advantage plans, but commercial policies are also an issue.
Insurers dispute that they refuse ventilators for patients who need them. Excellus BlueCross BlueShield, for example, requires simpler breathing machines to fail before authorizing ventilators. However, after a KFF Health News inquiry, Excellus clarified its policy, stating it considers mechanical ventilators as first-line therapy for certain situations, like ALS, on a case-by-case basis.
UnitedHealthcare confirmed some policies require trying less complex devices first, while Aetna's policy considers mechanical ventilators based on the severity of the condition and the risk of death without respiratory support. Humana and Cigna did not respond to requests for their policies.
Chris Bond, a spokesperson for AHIP, the health insurance industry's trade organization, stated: "Health plans work to connect patients with safe, clinically appropriate care and welcome opportunities to improve access and address coverage-related issues."
A Model of Hope: The Leonard Florence Center
In 2019, David Marion, a 36-year-old plumber, fractured his neck, rendering him quadriplegic and paralyzed his abdominal and diaphragm muscles, requiring a ventilator. Over the next year and a half, he lived in two long-term acute care hospitals.
His luck changed when he was accepted into the Leonard Florence Center for Living in Chelsea, Mass., which offers an alternative to the institutional life most nursing homes provide for ventilator-dependent individuals. The center follows the Green House philosophy, with small residences serving 10 people each, offering private bedrooms, a common living room, and outdoor space.
The center's respiratory therapists helped Marion become independent, no longer needing a feeding tube and only requiring his ventilator for portions of the day. He now has a portable ventilator attached to his wheelchair and a computer tablet he operates with his mouth, allowing him to control various aspects of his environment.
Barry Berman, the CEO of Chelsea Jewish Lifecare, which owns the Leonard Florence Center, emphasizes: "This gives back independence to people who never thought they'd have it again. There are alternatives; it doesn't have to be the way it is."
The Future of Ventilator Care: A Call for Change
Some states have licensed non-nursing home facilities to care for ventilator patients. In California, some live in "congregate living health facilities," residential houses providing 24-hour skilled nursing for the terminally ill, severely disabled, or physically disabled but mentally alert.
However, researchers expect states to face pressure to reduce or eliminate such programs to make up for nearly $900 billion in coming Medicaid reductions. The federal government doesn't require states to cover respiratory care for ventilator-dependent individuals or nursing home alternatives.
Denise Valliere, David Marion's mother, questions why there aren't more places like Leonard Florence: "How can we be so behind in this kind of care and these facilities if we're the best country in the world? Why is this?"
The story of ventilator-dependent individuals is a call to action, a reminder of the urgent need for specialized care, improved access, and a healthcare system that prioritizes the most vulnerable among us.
