When I began this blog, my goal was to share the experiences our family has faced with little Zayden and his mother, Blaize, as we navigate the complex world of Myotonic Dystrophy. I aim to provide an honest perspective—not just on Zayden’s daily life or the weekly hurdles we encounter, but also on the joy we feel in celebrating his achievements. However, more recently, I find myself venting about the endless frustration of dealing with bureaucratic inefficiencies that waste valuable resources, energy, time—and frankly, patience.
Why do we have elected officials tasked with representing their constituents when their only action seems to be forwarding your concerns back to the very agency that failed you in the first place? Why bother having a chain of command if no one at the top holds those beneath them accountable? Instead, we’re left with agencies self-monitoring their failures, which is precisely why you escalated the issue to begin with. It’s a maddening cycle of passing the buck, with no resolution in sight.
It’s now been eight additional days since I first contacted the Governor of Florida’s office for help with the Department of Health, which manages the Board of Licensing for nurses. This agency refuses to answer their phones or return calls. The Governor’s office claims to have forwarded my contact information to their Department of Health liaison. Yet, here I am, still waiting. Yesterday, I tried contacting the Governor’s office again. The same aide (I think) told me—again—that they would pass my information along to the Department of Health and to allow another 2 to 5 business days for a response. Time is running out. If this situation isn’t resolved by May 31, 2025, Zayden will lose his daytime nursing care on June 1, 2025.
This isn’t just an inconvenience. Without daytime care, I won’t be able to manage Zayden’s needs and keep up with his doctor appointments. I can’t drive and provide care at the same time. The failure of a state agency to perform its most basic duties is putting Zayden’s life at risk and jeopardizing his access to timely medical care. Worse yet, the Governor’s office, instead of stepping in to resolve this, has twice handed the problem back to the same agency that failed us. It’s baffling—and infuriating. How can they expect a different outcome when nothing has changed? This feels like buying 10 boxes of Corn Flakes and expecting to find Cocoa Puffs or Captain Crunch in one of them, only to discover they’re all still Corn Flakes.
The most frustrating part of this situation is that government employees—such as aides in the Governor’s office and staff at the Department of Health—continue to collect their paychecks while taxpayers shoulder the burden of high taxes for a system that fails to provide even the most basic services. Meanwhile, professionals trying to meet licensing requirements are stuck paying outrageous state fees, only to be left in limbo. Patients in need of nursing care are left frustrated due to a lack of competent nurses, as countless qualified nurses are forced to wait indefinitely for their state licenses to be issued or renewed. This creates a massive bottleneck: patients desperately need care, while eligible nurses remain on standby as their applications sit unprocessed by the licensing board.
Take Zayden’s daytime nurse, for example. She submitted her nursing license application to the Board of Nursing on January 13, 2025, but didn’t hear back until late April—over three months later—when they requested additional documentation. The issue? The "required" documentation doesn’t even exist. Despite nearly daily attempts to contact the Board of Nursing for clarification, we’re met with silence. No one at the Department of Health or the Board of Nursing is reachable, leaving us with no solutions. Meanwhile, every phone call results in hours on hold, only to hear the same automated message about "allowing 30 days for processing," with a vague mention that high graduation periods may extend this timeframe, despite the reality of months-long delays.
Every day tasks seem to grow more overwhelming with each passing week.
#GovernorSantis
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