The nationwide nursing shortage hits families of people with disabilities harder than almost any other group. When there aren’t enough nurses to fill hospital shifts, the ripple effects are felt most acutely in homes where children and adults depend on skilled nursing care to eat, breathe, manage seizures, or simply get through the day. More than 600,000 people sit on waiting lists for home and community-based services in 2025, and even families who qualify for care often can’t find a nurse willing to take the job.
Why Home Nursing Jobs Go Unfilled
Private duty nursing, the type of care most families with disabled members rely on, pays less than virtually every other nursing role. Medicaid sets the reimbursement rates for these services in most states, and those rates have historically lagged behind what hospitals, clinics, and travel nursing agencies offer. A nurse who can earn significantly more in a hospital or outpatient setting has little financial incentive to accept a home health case, especially one requiring complex medical skills like ventilator management or tracheostomy care.
The result is a workforce that is both shrinking and unstable. Home health aides and personal care attendants work in one of the fastest-growing employment sectors, yet these low-wage, low-status positions are persistently difficult to fill. Families routinely describe cycling through dozens of nurses, enduring weeks or months with no coverage, and watching qualified caregivers leave for better-paying work after just a few shifts. When a nurse doesn’t show up, a parent becomes the nurse, often sacrificing sleep, employment, and their own health.
The Weight on Family Caregivers
When professional nursing hours go unfilled, families absorb the gap. Parents of medically fragile children describe staying awake through the night to monitor breathing equipment, suctioning airways, and administering medications on schedules that would overwhelm a trained professional. This isn’t occasional or temporary. For many families, it is the default state of affairs, lasting years.
The toll is financial as well as physical. At least one parent often has to leave the workforce entirely because no nurse is available during working hours. Families that technically qualify for 16 or even 24 hours of daily nursing care may receive only a fraction of those hours, or none at all. The care doesn’t disappear when the nurse does. It simply shifts to unpaid family members who have no backup, no breaks, and no overtime pay.
Waitlists That Stretch for Years
Even getting approved for services doesn’t guarantee receiving them. In 2025, total enrollment on Medicaid home and community-based services waiting lists and interest lists topped 600,000 people across the country, a 14% increase from the year before. The average wait time to actually access services was 32 months, nearly three years of waiting for care that a person may need to live safely at home.
During that wait, families piece together whatever support they can. Some pay out of pocket for private caregivers at rates far exceeding what Medicaid reimburses. Others rely on aging grandparents, older siblings, or neighbors. Some families reach a breaking point and are forced to consider institutional placement, not because it’s what they want, but because the home-based care system failed to deliver what it promised.
School Nursing and Disabled Students
The shortage follows disabled children to school. Federal law, including the Individuals with Disabilities Education Act, requires school districts to provide a free, appropriate public education in the least restrictive environment. For many students with disabilities, that means having a nurse present to manage feeding tubes, administer medications, or respond to seizures during the school day. These services are often written directly into a student’s Individualized Education Program.
Here’s the catch: while federal law requires districts to provide these services, it does not mandate that a school nurse specifically deliver them. Many districts have used this distinction to avoid hiring dedicated school nurses, leaving buildings without any qualified medical professional on site. When a student’s IEP requires nursing care and no nurse is available, that student may be sent home, shifted to a more restrictive setting, or kept out of school altogether. Parents then face an impossible choice between their child’s education and their child’s safety.
Rural Families Face Deeper Shortages
Geography compounds the crisis. Finding and keeping home-based care workers is difficult everywhere, but in rural areas it becomes a fundamentally different challenge. Many people with disabilities live in places where personal care attendants are in short supply, and the workers who do exist face long, unpaid commutes between clients. This “windshield time,” along with added mileage costs and lower wages compared to urban positions, makes rural home care jobs even less attractive.
The consequences are stark. In rural communities, the combination of limited local workers, a lack of accessible public transportation, and fewer support services has led to people with disabilities being placed in nursing homes unnecessarily. Disability advocacy and independent living movements have historically been centered in cities and on university campuses, meaning rural-specific barriers like these have received less attention and fewer policy solutions. For rural families, the system isn’t just strained. In many places, it barely exists.
Growing Demand With No Clear Fix
The demand for long-term services and support is climbing steadily. Federal workforce projections estimate that by 2028, the country will need more than 436,000 home health aides and over 410,000 registered nurses working in long-term care settings. By 2033, those numbers rise to roughly 484,000 and 458,000 respectively. The agencies producing these projections have not attempted to forecast whether the supply of workers will keep pace, noting that the low barriers to entering and leaving these jobs, combined with the large role of unpaid family caregivers, make reliable predictions nearly impossible.
What is clear is that the current trajectory leaves families with disabled members absorbing more and more of the burden. States have begun experimenting with rate increases, signing bonuses, and programs that allow family members to be paid as caregivers. Some of these efforts have shown promise, but they remain inconsistent from state to state and rarely close the full gap between what Medicaid pays and what the market demands.
For families navigating this system right now, the nursing shortage isn’t an abstract workforce statistic. It determines whether their child can attend school, whether a parent can hold a job, whether someone who needs a ventilator can live at home, and whether the person providing 20 hours of unpaid care a day can get a full night of sleep.