When my medically complex son Declan came home from the hospital, he needed round-the-clock care, 24 hours a day, 365 days a year. A full-time worker puts in about 1,960 hours a year, assuming 40 hours a week minus vacation and holidays. Each year has 8,760 hours. That means caring for Declan required an equivalent of 4.47 full-time employees every year.
In Minnesota, where we live, for even the highest-acuity cases, coverage is essentially capped. Typically, you cannot be covered for more than 20 hours a day. This cap varies and is much lower in many states. Families are expected to cover the remaining four hours per day themselves, which equals 28 hours a week, plus be the backup when shifts go unfilled, day or night. A 2023 systemic review on pediatric home health care access found an average gap of 40 hours per week between hours allotted and hours actually received, on top of what parents were already expected to cover. Another utilization report from Virginia found that fewer than 46 percent of families received more than 79 percent of their allotted nursing hours.
Put that into the earlier equation: For high-acuity kids like Declan who are “covered” 20 hours per day, families are still responsible for 28 hours per week at minimum. But when the system fails to staff what it authorizes, families end up covering far more. With a 40-hour weekly shortfall, a “baseline” 28-hour family responsibility becomes 68 hours per week, nearly two full-time jobs, before you even count the overnight vigilance, the care coordination that comes with having a disabled child, and the constant anxiety of wondering who is showing up today.
It is a lot. How anyone is expected to hold down a job while serving as the backup nurse and the regularly scheduled part-time nurse, I will never understand. But that is not the point of this article. This article is not about nursing shortages. It is about what happens next: How shortages shape the culture of home nursing, and how they change what “accountability” looks like when something goes wrong.
“I could lose my license for that.”
Early on, I heard the same phrase again and again: “I could lose my license for that.” It came up around medication administration without clear physician orders, scope-of-practice questions, and mistakes that should have triggered real caution. That sentence carried weight. It implied there was a line, and that crossing it had consequences. I believed it, because I assumed oversight worked like people think it does: Report a serious violation, the board investigates, and unsafe providers are removed.
What I reported, and what happened
Over the course of Declan’s life, I reported multiple incidents to the nursing board. The only time I saw meaningful action was after we captured deliberate harm on camera by a nurse who was later convicted of a felony. Prior to conviction, his license status was changed to suspension. After conviction, his license was revoked, yet the disciplinary terms still allow the possibility of reapplication after a 20-year period. Twenty years is a long time. And still: How is there ever a path back for someone who intentionally harmed a patient? Every other time I reported something, nothing seemed to happen. There was no acknowledgement, no follow-up, and no questions. I never received a message saying they received my complaint; there was just silence.
The incidents I reported were severe. In one instance, Declan desaturated while a nurse slept in our living room and his machines alarmed. We had to intervene. I reported the nurse sleeping on shift while alarms sounded, but I never received follow-up. In another case, a nurse increased my infant’s ventilator settings beyond prescribed parameters against orders. I reported it as a safety violation and received no response, even though a physician later told me it could have caused catastrophic injury. I also reported a nurse who knowingly overfed him as an infant, intentionally altering his feeding for convenience because she told me she did not want to deal with the leftovers. I even reported pinch mark bruising. Eventually, I stopped reporting. It was not because the incidents became acceptable, but because reporting started to feel like throwing my voice into a void.
It is a systemic issue
Recently, I had lunch with a mom of a disabled adult who was severely abused in her day program. Her daughter came home with a handprint bruise on her breast, significant compression bruising around her arms that was documented by the physician who examined her, and bruising on her back. The program told the mother her daughter “did it to herself.” She reported it to the Department of Human Services and never heard back. DHS is not the nursing board, and they regulate different things: DHS regulates programs and facilities, while the nursing board regulates individual nurses. But in practice, families can run into a similar wall: Reporting produces little transparency, little communication, and no visible consequence.
Why this happens
It is hard not to conclude that the system is designed more to absorb complaints than to resolve them. I cannot claim to know every reason oversight fails. But there is at least one explanation that fits the reality families are living: When staffing collapses, accountability collapses with it.
In a world that is chronically understaffed, where agencies are desperate for anyone with a pulse and a license, disciplining the people who show up becomes harder to do. This is true not just practically, but culturally. The pressure shifts. The threshold shifts. The silence becomes the path of least resistance. So when a nurse says, “I could lose my license for that,” families are supposed to hear a deterrent. What many families actually experience is something else. The idea of oversight is powerful, but the enforcement of it often is not. And families like mine are left to fill the gaps in staffing, in safety, and in consequences.
What should be done about it?
We, as a society, have to decide: How much do we care? Because sooner or later, the conversation always circles back to the same thing: Money. If skilled nurses and caregivers could earn a decent living doing this work, and if agencies could staff safely without burning people out, more people would stay. Home care, group homes, and day programs are hard to staff because the work is demanding, the stakes are high, and the pay is often insulting for what is being asked. Yes, the nursing shortage is bigger than pay alone. Training pipelines matter. Clinical placements matter. Support, scheduling, and working conditions matter. But burnout is not a mystery when people are asked to do the work of two or three people, shift after shift, and then told it is “just part of the job.” And when staffing collapses, everything else collapses with it: Safety, consistency, accountability, and the ability of any oversight system to function as a real deterrent.
I do not trivialize money; someone has to pay. But we should at least be honest about what we are choosing. If the funding is not there, it is not because the need does not exist; it is because we are making a values decision about who deserves protection and how much protection they get. And some of the answer should not depend on funding at all: Licenses, boards, and oversight should mean something. It should be a privilege to hold a license, not an entitlement. Accountability should be the norm, not the exception.
So if we are serious, doing better needs to look like actual policy and actual process. We need pay that matches the responsibility in home care and direct-care settings, so skill does not have to choose between purpose and survival. We need staffing models that reflect reality, so parents are not silently drafted as the default workforce. There must be transparent complaint handling that includes the acknowledgement of reports, clear timelines, and plain-language outcomes when possible. We also need real consequences for serious violations, regardless of staffing pressures, and better coordination between agencies so families are not bounced between claims of “not our jurisdiction” and silence. Because right now, families are being handed a myth as a safety plan, and fragile people are paying the price.
Ashley Youngdale is a patient advocate.
