Vulnerable Patients Struggle to Access Ventilators

Michael DiPlacido, diagnosed with amyotrophic lateral sclerosis, or ALS, struggled to find nursing home care that could accommodate his need for a ventilator. His son, Adam DiPlacido, discovered that none of Missouri's nearly 500 nursing homes could take him.

According to a KFF Health News investigation, there are significant flaws and gaps in care for patients who cannot breathe on their own, often due to conditions like spinal cord injuries, strokes, and chronic obstructive pulmonary disease.

The report highlights that only 347 out of approximately 14,750 nursing homes in the U.S. have specialized units for ventilator care. Alarmingly, 15 states, including Missouri, have no facilities that can provide this specialized care.

Less than 10% of nursing homes had long-stay residents on invasive mechanical ventilators between April and June 2025. Many patients requiring ventilators prefer to live at home, but the cost of private nursing can be exorbitant, often reaching hundreds of thousands of dollars.

David Goldstein, another ALS patient, and his ex-wife Janis Goldstein reported spending around $500,000 on home care due to inadequate state Medicaid support. David had to wait over a year to receive 12 hours of care a day from Texas' Medicaid program.

This left them scrambling for additional nursing coverage, fearing the consequences of insufficient care. The report also mentions that innovative alternatives to traditional nursing homes exist but have not been widely adopted.

The Leonard Florence Center for Living in Chelsea, Massachusetts, offers a model that provides small residences for ventilator-dependent patients, promoting independence and quality of life. However, such facilities are rare, and many states are facing Medicaid cuts that threaten the availability of these alternatives.

Concerns are growing about the inadequacy of insurance coverage for ventilators, with some insurers requiring patients to use less effective devices first, a policy many find burdensome. John Hansen-Flaschen, a pulmonologist, noted that vulnerable patients often give up when faced with insurance denials, further complicating their already challenging circumstances.

The report underscores that the U.S. healthcare system's fragmented nature leaves many patients in dire situations, unable to access essential care. The investigation reveals a pressing need for systemic changes to improve access to ventilators and specialized care for those with severe respiratory conditions.