I knew it wasn’t likely. Seeing as I had just been contacted by a friend with the same exact hope. She, too, learned the hard way.
You know what they say about hope. It springs. Eternal. Unfortunately it makes no promises about actually panning out.
Reed and I have talked before about trying to get a portable oxygen concentrator for Parker.
Right now we either haul oxygen bottles, or we lug the monster concentrator along with us.
When Parker goes outside we move the monster concentrator to the back of the house, plug it in the furthest socket. It just makes it to his play set.
It’s seriously heavy.
There are some places where oxygen bottles just don’t cut it. Like when Parker attends an adaptive PE class or physical therapy…..or when we (gasp!) venture out on a grand adventure……like say my parent’s house.
Picture me having to run after Parker with the oxygen bottle in tow a few feet away during adaptive PE classes. It isn’t pretty, people. And what kid wants to be confined to a mere few feet when they finally get to paint the town red?
Imagine your entire life tethered to some kind of oxygen machine able to wander just 50 away. Except for the time that you can only move a few feet away.
That’s Parker’s usual. Take one step too many and he winds up clothes lining himself as the slack between the oxygen bottle and his trach gives out. Not the smoothest of moves, iykwim.
With that in mind I decided to make some calls and see if between our private insurance and Parker’s waiver we might get a portable oxygen concentrator for him. Easier than oxygen bottles. Plugs into the wall or into the cigarette lighter of a car, light enough for this Mama of ‘advanced maternal age’ to drag along behind her.
I would have been better off spending the day banging my head against the wall.
Insurance Dude! Who do you actually think is buying that excuse?
I started out by calling our private insurance. Nope. They won’t cover portable oxygen bottles. The technology is still too new. Uh. Huh? Technology too new? Do I really sound that naive over the phone? Is there some blow off 101 course insurance reps are required to take that include lame excuses? In my mind I’m seeing a note taped to the phone listing all the reasons to turn a family down.
After figuring out that I was serious about getting a portable oxygen concentrator my private insurance company told me that the best they MIGHT be able to do is to purchase one using their discount and then billing us monthly until it was paid off. It’s not unusual for insurance companies to get a major price break when they purchase durable medical equipment.
This would work well, if our budget had room for a monthly payment.
I decide to move on to Plan B.
I asked if Parker’s waiver would pick up the cost of a portable concentrator. Medicaid picks up the cost of Parker’s vent……our private insurance won’t.
No, I’m told Parker’s waiver will only pay the MONTHLY RENTAL fee for this concentrator. Because of this our private insurance would have to be responsible to maintain it and track it…..cause you know a little note somewhere saying that it’s at Parker’s house is way too much effort.
Meh. I figure that I’ll call Parker’s case worker and get the real story. I wind up calling the Dept. of Health and Human services. Sure enough. Parker’s waiver would pay an ongoing RENTAL FEE, but not pay outright for a portable concentrator.
Because paying a never ending rental fee is so much cheaper than just covering the one time cost of a portable concentrator outright.
Then I remember the extremely close relationship our private insurance and HHC have with Medicaid. Hands in each other’s pockets kind of close.
It starts to make sense.
I remember how cheaply a Home Health Care company can get an oxygen tank…..and how freakin’ much they charge each time that oxygen bottle is refilled.
Providing portable oxygen concentrators would put an end to that gravy train, no?
Finally, it hits me.
We’ve been set up.
It’s not just us. As I mentioned above, I have other friends who have been down this road just to find a big old ‘sorry, sucker’ at the end.
I’ll keep lugging the monster concentrator around. I’ll continue running to keep up with Parker in order to maintain that few feet of space between him and his life line.
This kid? Totally going to rule the world one day. Count on it.
Instead of being frustrated with a system that makes no sense, I’ll focus on the blessing of having this kid’s footsteps to trot along in.
I looked into this when Paelyn was about 8 months old and I had no luck with insurance paying either. But I just wanted to say how much I LOVE the last picture of Parker on the the tire swing! I have only sat on our front porch stairs with Paelyn. I envision the day she can actually go outside and swing.
Candice,
Reed and I have talked about when I can no longer even haul around a zillion oxygen bottles or that monster sized concentrator. These are some of my real concerns as Parker gets older.
My Mom and I are putting our heads together to see if we could put together a yard sale and come up with enough stuff to sell on Ebay to cover maybe a used one.
Twitter: kadiera
says:
You know, the up side to them paying the rental fee is that if it breaks, it’s their problem to fix it, not yours. Which is what they’re supposed to do with things like ventilators too.
We are, this very moment, replacing the power supply for our portable concentrator for the second time in the less than 3 years we’ve owned it….at a $400+ cost the first time, and about 10 hours of spouse’s electronics guru work plus some amount of cash I didn’t want to know about. We bought ours out of pocket, so we’re responsible for it.
Another part of the problem may be that portables aren’t FDA approved for pediatric use (go figure – the most likely to be active people on oxygen are the least likely to get useful equipment).
kadiera recently posted..Now that we’ve been home a few days…
kadiera, yet at the same time they do this same exact deal with Parker’s vent. Parker’s waiver pays TWO THOUSAND dollars a month for rent on Parker’s vent. The vent cost about $20,000. So his vent has been paid for several times over, with our HHC coming out the winner. I know these numbers are correct because we had them checked out….we couldn’t believe a charge that high was right, it had to be beefed up in insurance terms, right? uh…nope.
(BTW, OUCH! on the concentrator fix.)
And I can’t see that the up keep for our HHC to tend to this portable O2 concentrator would cost more than what it costs to refill a lot of oxygen bottles a month. Surprisingly enough, refilling oxygen bottles is expensive for the consumer/one who writes the checks, but not the supplier.
Portables are approved for pediatric use. Our HHC will loan you one if you go on vacation or something……which I will admit is pretty nice.
I think, over all, what has really affected me the most with all of this is the reality that Parker will be tethered to an oxygen cord for life. I mean I’ve always known that, but it just kind of made it into my reality with grand smack! yesterday.
I think of him as a teenager, trying to carry his own oxygen bottle around and I realize that he might not be able to really be a part of the world due to this dumb oxygen thing.
This kinda hurts considering he isn’t able to get out and about much right now. I’ve always kind of thought that all our hard work to get him healthy now would pay off later on by Parker being able to get out and go as his health improved.
It isn’t life threatening. It isn’t his vent they are refusing to provide and for that I’m eternally grateful. It’s just more heart hurting if that makes any sense? We’ve always tried to keep our footprint light on Parker’s waiver so here’s another chance to practice that, huh?
Off to read your update! xoxo
Twitter: kadiera
says:
Have you seen the oxygen backpacks? Busy Breathers, I think is the name. Parker might need to be a little bigger for that to work, but it’s a thought – much like a backpack for a feeding pump when doing continuous feeds (the current bane of my existance), it cuts back on the tethered feel…
kadiera recently posted..Now that we’ve been home a few days…
Kadiera,
YES! I was sent one that I have yet had an opportunity to use. I’ll be doing a review on it soon. Then when the NEW prototype comes out I’ll be reviewing that one too.
Thanks for reminding me of this!
Thanks for sharing an actual picture of this, for sharing how absolutely insane it is to try to figure anything out with insurance, home health companies etc. Thanks for also in the same post managing to also capture the beauty of daily life despite it all. Love that picture of Parker on the swing. You are keeping me sane. Through your blog, your phone calls, you have no idea.
Shannon, recently I’ve had a couple of people try and paint a picture where Parker’s waiver pays for everything. Uh. Nope. I just talked to Parker’s case worker today and was told that there was no way a committee was going to provide a portable oxygen concentrator for Parker.
As a matter of fact, her Mother is no longer able to drag an oxygen bottle along after her and her insurance turned her down on a portable concentrator as well.
This isn’t the first time we’ve been denied. It won’t be the last. But it does prove a point.
We’ll figure it out. I’m still thankful that it’s not Parker’s vent in question. So I’ll keep counting my blessings. :0)
Give that little one a huge hug from me,k? xoxo