“So, Because I Work Full-time and Have Primary Insurance, You Won’t Cover a Back Up Ventilator?”

“Ma’am, I’m just sharing with you the reason your request was denied. I can help you file a grievance if you’d like to do that.”

“Yes. Let’s go ahead and do that.”

“What is the reason you need a back up ventilator?”

“We live 30 minutes from the hospital. If something were to happen to my daughter’s ventilator, if something were to go wrong, I would need to bag her until an ambulance came, or until we could get her to a hospital. My daughter is HEALTHY. She breathes on her OWN. She uses the ventilator for pressure support. You want me to take away her ability to breathe on her own, just because of a machine malfunction? You want me to breathe for her instead of letting her breathe?”

“Is that it?”

“Yes, that’s it.”

This is what I had the opportunity to explain to the Medicaid insurance provider yesterday afternoon. Yes, ladies and gentlemen. THIS is precisely what is wrong with our healthcare system.

Callie in Pink

If I didn’t work, if I didn’t have primary insurance, this provider would provide me with a back up ventilator, no questions asked, no hesitations. But because I’m a responsible parent that works to provide for myself and my family, this insurance provider has denied us a back up ventilator. This is real life. I can’t make this up.

When you have a special needs child, you see, you have the opportunity to answer absolutely ridiculous questions like this all the time. You can the opportunity to watch your mailbox for the ridiculous letters and bills. Then you get to make countless phone calls to correct their mistakes. Then you get to make countless phone calls to ensure your child has all of the appointments and follow up appointments that they require. Because you’re a good parent, you provide for your child, and that’s what you NEED to do for your child and your family.

Isn’t our healthcare system fabulous?

Now, don’t get me wrong. They have been extremely helpful in many areas of our “medically fragile child” journey to date. But it’s these “opportunities” that make you question whether you’re cut out to be a parent. Not loving your child, or spending time with them, or providing their care – the crap that makes you question whether you’re cut out for this all-important job is dealing with these “opportunities.”

For the record, I’ll do whatever it absolutely takes to ensure we retain a back up ventilator in this house for us and our nursing staff. Come hell or high water. But I like to do things the right way.

After all, I’m responsible for setting an example for this kid, now, right?! HA!


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