Challenges in Accessing Ventilator Care in the United States

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Challenges in Accessing Ventilator Care in the United States

Tens of thousands of individuals in the United States require permanent mechanical ventilation due to conditions such as spinal cord injuries, strokes, chronic obstructive pulmonary disease, and neurological diseases like amyotrophic lateral sclerosis (ALS). Obtaining consistent and appropriate care for these patients often presents significant difficulties within the U.S. healthcare system.

Challenges in Facility-Based Care

Limited Specialized Nursing Homes

A KFF Health News analysis indicates that only 347 of approximately 14,750 nursing homes nationwide operate specialized units for ventilator-dependent individuals. Fifteen states currently have no nursing homes with such specialized units. From April through June 2025, fewer than 10% of nursing homes provided care for long-stay residents using invasive mechanical ventilators, and fewer than 15% cared for short-stay patients requiring ventilators.

Financial and Operational Barriers

  • Reimbursement Issues: According to Gene Gantt, a respiratory care consultant, less than half of state Medicaid programs offer adequate reimbursement rates for ventilator patients. Most state Medicaid payment structures do not incentivize outcomes or reward better care quality from nursing homes.
  • Staffing Concerns: Instances have been observed where nursing homes admit patients with tracheostomy tubes despite nurses lacking sufficient training or the facility not employing respiratory therapists.
  • Financial Viability for Facilities: Equipping nursing homes for ventilator care and securing state approval is costly. David Gifford of the American Health Care Association notes that outside of urban areas, the patient volume may not justify the investment for specialized units.

Challenges in Home-Based Care

High Costs and Bureaucracy

Many ventilator-dependent patients prefer home care, but this option can be expensive. While some state health programs assist low-income patients, enrollment can involve lengthy bureaucratic processes and waitlists.

Insurance Denials for Advanced Ventilators

Some insurers have policies that delay approval for advanced home ventilators, which can cost over $10,000. These policies may require patients to first attempt simpler respiratory assist devices, such as BiPAP or CPAP machines, which are less effective for certain conditions and lack critical safety features like alarms for malfunctions. Physicians refer to these as "fail first" policies. Patients with conditions like ALS may experience a decline in breathing capacity while negotiating with insurers.

Appeal Process and Insurer Policies

Patients and their families often must appeal insurance denials. For example, Derek McManus, diagnosed with ALS, had two requests for an advanced ventilator denied by his insurer before an independent medical reviewer overturned the decision, citing "vital for patient safety" features. Pulmonologist John Hansen-Flaschen states that many vulnerable patients lack the energy to navigate complex appeal processes. Specific insurer policies vary: Excellus BlueCross BlueShield initially required simpler devices to fail, later clarifying that mechanical ventilators are considered first-line for certain situations like ALS on a case-by-case basis. UnitedHealthcare also requires less complex devices to be tried first in some policies. Aetna's policy considers mechanical ventilators based on severity, not mandating a stepped process.

Patient Experiences Illustrating Difficulties

  • Michael DiPlacido (ALS): Following an ALS diagnosis and the need for a ventilator via tracheostomy tube, Michael DiPlacido's son, Adam, was unable to locate any of Missouri's nearly 500 nursing homes that could provide care. Michael moved between facilities in Illinois and incurred over $47,000 in out-of-pocket costs at a long-term care hospital before receiving private home care at $960 per day. He died in hospice care at age 75.
  • David Goldstein (ALS): David Goldstein, aged 69 and on a ventilator for ALS, requires continuous assistance. After a year on a waiting list, Texas' Medicaid home health program authorized 12 hours of daily home care. His ex-wife, Janis Goldstein, reported spending approximately $500,000, primarily on nurses and aides, to cover the remaining hours. He planned to move to a nursing home that accepts ventilator patients, but concerns remained regarding overnight care.

Alternative Models and Their Challenges

Leonard Florence Center for Living (Massachusetts)

This facility utilizes a "Green House" model, featuring small residences for 10 individuals, including six dedicated to ventilator-dependent patients. Residents have private rooms, common areas, and set their own schedules. The center integrates portable ventilators and technology controlled by patients for mobility and environmental adjustments. David Marion, a quadriplegic ventilator user, experienced improved independence at this facility. The center is primarily funded by Medicaid and Medicare, supplemented by an endowment. Despite hosting numerous visitors interested in replication since 2010, the model has not been widely adopted.

California's Congregate Living Health Facilities

California licenses residential houses for 24-hour skilled nursing for terminally ill or severely disabled individuals, including those on ventilators. However, Medicaid managed care programs often do not cover these facilities, and the state's Home and Community-Based Alternatives waiver has a waitlist of over 5,000 people.

Future Risks

Researchers anticipate potential reductions or elimination of such alternative programs due to projected Medicaid cuts, as the federal government does not mandate state coverage for respiratory care for ventilator patients or nursing home alternatives.