This month has been a rollercoaster as we navigated the complexities of coordinating Zayden's care with various agencies and providers. Frustration has been mounting due to the constant obstacles and a persistent lack of communication—both unintentional and, at times, seemingly deliberate. I had hoped that with time, familiarity, and mutual understanding of boundaries, some of these issues would begin to improve. Unfortunately, that has not been the case, and the same challenges continue to arise, again and again.
It’s disheartening, though not surprising, that government agencies and private companies often prioritize administrative cost-cutting over ensuring that resources reach the people these programs were created to help. While I understand this unfortunate reality, I can’t help but feel immense frustration each time I encounter unnecessary waste—of time, funds, and energy—when trying to navigate the systems designed to support families like ours.
Take, for example, the process of obtaining essential medical supplies. Health insurance companies pay third-party durable medical equipment providers, who then source these supplies from other vendors before they finally reach the families. Each party in the chain adds its own costs—personnel, overhead, office expenses—marking up the price at every step. By the time the supplies arrive, the cost has ballooned to several times more than it would if families could simply purchase the needed items directly using an insurance allowance. This inefficient system places an unnecessary financial burden on taxpayers while complicating access for families who depend on these supplies for daily living.
A prime illustration of this inefficiency is the medical crib we needed for Zayden. If we had been able to purchase it directly from the manufacturer, it would have cost $3,500. However, because the order had to go through a third-party provider, the process took nearly six weeks, required countless phone calls and denied paper requests, and ultimately cost the insurance company $20,211. This represents an 82.68% increase in cost—an incredible waste of funds that could have been used to support other families in need. And this is just one example of the many pieces of medical equipment Zayden requires.
Currently, Zayden has two ventilators, a nebulizer, an oxygen concentrator, two portable suction machines, two oxygen monitors, a stationary suction machine, two feeding machines, a medical crib, a bath chair, a feeding chair, a medical stroller, and a stander on order. In the future, he’ll likely need a wheelchair and additional equipment. On top of this, there’s a continuous need for monthly medical supplies like stoma cleaning materials, tracheotomy replacements, G-tube kits, feeding bags, bed pads, gauze pads, syringes, ventilator circuits, filters, trach HEI filters, trach ties, suction hoses, and more. If every item comes with an 82% markup, the waste is staggering. Imagine how many more families could be supported if these funds were allocated directly to them instead of lining the pockets of intermediaries.
Furthermore, families often receive supplies they don’t need or use, while struggling to obtain adequate quantities of the items they rely on daily. This leads to unnecessary storage challenges or the disposal of unused supplies. The prevalence of Facebook groups where families trade surplus medical supplies speaks volumes about the inefficiencies of the current system.
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