So needless to say I am thoroughly disgusted with our Durable Medical Equipment Coverage. We came home from the hospital with the knowledge that BJC Home Health will be providing the supplies that we need for Trystyn's feeding tube. Also, I knew that this was billed through out Durable Medical Equipment coverage. I am just fuming at how much this is now going to screw our daughter. You see we have a limit of $5,000.00 coverage per year. BJC is billing our insurance almost $2,000.00 a month for her supplies. Now mind you this is not the amount that the insurance will pay as they will only pay what they deam is allotted. But, let's just say they alot to pay half of that amount at $1,000.00 per month then in about 5 months we will be out of insurance coverage for her g-tube supplies and we will have to pay 100% out of pocket for the rest of the year. I called BJC and found out that they will generously only charge us the amount that the insurance company will have to pay and that they have financial assistance. Literally, I was crying on the phone, because as you can guess I am freeking out about this. Because in reality after Trystyn is out of the First Steps Program and we are responsible for her actual equipment, i.e. wheelchair, then we will literally have no insurance coverage for this. Because really how do you choose??? Uhhh get the wheelchair that she needs when she outgrows her Kid Kart or get the supplies that she needs to get the nutrition she will need to live... I mean really obviously the people that write up these plans don't have kids like Trystyn or really just don't give a shit.
It is forever the families like mine that are continously getting screwed by the system. If you go to apply for SSI for your child you will be told that you make to much money. Did you know that they go by your gross income. Um, seriously, that is not what we bring home to pay our bills. You can forget about getting Medicaid if you don't qualify for SSI. And slowly but surely I am finding out that any kind of agency that you think might be able to help you uses the same guidelines. So really what are families like mine supposed to do?? We live paycheck to paycheck.
I am really not asking for much. I just want to be able to provide the stuff that my daughter needs. Just like I provide my son what he needs. It just so happens that their needs are totally different. I also have found that as soon as you put the lable "Special Needs" on anything the cost for it triples. Take onsesies for example, you can buy a 5 pack of Gerber onsesies for $9.00. If you want to buy a onsesie for a special needs child, meaning larger size or with a g-tube opening, they are $40.00 a piece. Seriously, I must be missing something. I have since been on a quest to find larger size onesies and then I will figure out how to make a hole for the g-tube with a little flap that covers the hole, so Trystyn won't mess with the tube, all on my own and hopefully pay the $9.00 for a 5 pack.
I know that I am venting, but I am sure if you are in my situation you will understand. Oh and by the way my insurance company won't pay for the formula. UGHHHHHHH
Well, I guess that's it - Trystyn is doing good and so is Rain - I on the other hand am about to loose it.
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