After months of struggling to secure skilled nursing care for my grandson, I find myself completely exhausted—both emotionally and physically. I’ve pleaded and fought for additional assistance, but progress has been painfully slow. The primary reason? Nurses simply cannot afford to work in home health care due to the low pay and immense responsibility it entails. It astounds me that, as a society, we seem to place more value on jobs requiring minimal education than on the critical, highly skilled care that so many vulnerable individuals desperately need. A quick search reveals that in Florida, nurses barely earn more than an assistant manager at a fast-food restaurant. How is it possible that flipping burgers can offer comparable—or even better—compensation than a professional who has invested in a costly four-year degree and holds responsibility for human lives? The disparity becomes even more glaring when comparing reimbursement rates. Insurance companies consider it "reasonable" to pay approximately $117.75 per hour (or $2,826 per day) for a standard hospital stay but only reimburse nursing agencies around $31 per hour for home care of medically complex patients. For specialized hospital stays, the rate jumps to $154 per hour ($3,700 per day). Why are doctors, lawyers, and legislators compensated according to the knowledge and responsibility their roles demand, yet nurses and other essential support service providers are not? This imbalance is not just unfair—it undermines the care and support so many rely on. It's time to reevaluate how we value our healthcare professionals.
This imbalance has added yet another challenge to my already overwhelming responsibilities. In an effort to address this and advocate for fairness, I have written the following letter to my grandson's medical insurance company. My goal is to bring attention to the situation and request the necessary funding to ensure Zayden receives the care and services he desperately needs.
To Whom It May Concern,
My grandson, Zayden, is almost 11 months old and has a rare genetic disorder called Congenital Myotonic Dystrophy Type 1. This condition affects multiple body systems, including his brain structure, all the muscles in his body, and his respiratory system. Zayden requires a tracheotomy, a G-tube for feeding, oxygen support, and a heart monitor. His mobility is greatly limited due to severe hypotonia. He spent his first six months of life in two separate NICUs before he became stable enough to come home. Since then, he has been hospitalized twice, including one life-threatening incident where Zayden went into cardiac and respiratory arrest at home. Thankfully, our day nurse had arrived early that morning and was able to help perform CPR and call 911 until EMS arrived.
Over the past six months since Zayden came home, our family has worked with six different nursing agencies to secure full-time skilled nursing care for his 24-hour needs. Unfortunately, due to the challenges of living in a rural area, only one agency, Angels of Care, has been able to provide minimal coverage. Two agencies declined to help because they could not find nurses willing to travel to our area for the low pay rates permitted by Sunshine CMS Medicaid. Another agency informed us they no longer accept Sunshine CMS because of the inadequate reimbursement rates. One agency initially promised full staffing but failed to provide even a single nurse after two weeks. Another agency presented conditions that we could not meet due to the extensive training required, which conflicted with Zayden’s numerous doctor appointments. As his primary caregiver, I rely on nursing assistance during appointments because I cannot safely drive and care for Zayden simultaneously.
Angels of Care is the only agency that has managed to provide two full-time nurses for Zayden. They have gone above and beyond, frequently paying these nurses overtime while continuing to search for additional staff to meet Zayden’s needs. One nurse travels one hour each way, while the other travels over an hour and a half. Neither is reimbursed for travel time or mileage. These dedicated professionals, with degrees and student loans to repay, earn wages comparable to or less than individuals working as fast-food managers or retail greeters—jobs that often require only a high school diploma or GED.
It is deeply disheartening that these skilled nurses, who hold the lives of vulnerable patients like Zayden in their hands, are undervalued to such an extent. Their work requires years of specialized training, yet their compensation does not reflect the critical nature of their responsibilities. How can someone entrusted with saving lives earn less than someone flipping burgers?
My grandson—and every person with special needs—deserves better. Families like ours, who rely on skilled caregivers, also deserve support and respect from medical insurance companies. As a former business owner, I understand the necessity of turning a profit, but at what cost? The current system prioritizes savings over the well-being of patients and their families.
Consider this: In Florida, the average hospital stay costs $2,826, which equates to $117.75 per hour. Meanwhile, skilled home nurses earn an average of $28.86 per hour, with the highest-paid earning around $35 per hour. Nurses working in hospitals, where they have the support of a team and on-site doctors, earn an average of $45.62 per hour. Since December of 2024, I have personally provided an average of 86 hours of direct care to my grandson each week, not counting the additional time I spend managing his doctor appointments, ordering medical supplies, and advocating for the services he needs. I am emotionally and physically exhausted, averaging only a few hours of sleep each night. I live in constant fear of another cardiac or respiratory emergency, terrified that I might be alone when it happens or fail to respond in time due to sheer exhaustion.
Zayden needs alert, well-rested, and skilled caregivers. Yet every nursing agency I have contacted has cited low reimbursement rates as the reason they cannot provide adequate staff. Nurses have personally told me they cannot afford to work for the wages offered in home care when hospitals pay $45 to $60 per hour for far less responsibility.
Zayden did not choose to be born with this condition, and our family had no knowledge of the genetic disorder prior to his birth. Regardless, he—and every child like him—deserves competent, qualified, and compassionate care. The only barrier to this is the low pay tied to high-responsibility work. The phrase “you get what you pay for” could not be more applicable here. I ask Sunshine CMS Medicaid this: Would you accept this level of care for your own family members? Would you be comfortable knowing that those entrusted with your loved one’s life are paid less than a fast-food worker?
I am pleading with Sunshine CMS Medicaid to execute a Single Care Agreement with Angels of Care, allowing for higher reimbursement rates. This will enable the agency to offer competitive pay to nurses, ensuring my grandson receives the care he desperately needs.
Sincerely,
Sherri Gabel
919-344-3035
#trachgrammie
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