One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Friday, February 10, 2006

a rather boring account of our current workings

Thank you, thank you, thank you for all your offers of help and suggestions for strategic planning to make sure that Annika's care is still paid for. And I lapped up the sympathy like a kitty happening upon a spill of tuna oil. Jörg has been all over this situation. He's in a good position, since he is the chair of the committee that negotiated the insurance plan last year. So he really does know the ins-and-outs of this area. The problem is that none of the contracts that we or the university were sent said anything about figuring yearly maximums according to the date billed, rather than the date of the service itself. This particular contract was made between our insurance company and a reinsurer, which is used to handle large claims, and we've never actually seen it. Jörg did contact an insurance attorney, as well as the Illinois insurance commission and various other places. Basically he burned up the telephone lines tracking down every possible lead. And the answer always came back that since our insurance plan is a self-funded one, we basically have no recourse whatsoever. Whatever rules they make up are the rules that we have to follow, no matter how unintuitive they may seem. Jörg also checked into Illinois public aid (that is the KidCares site that you sent me, Emily), and we only qualify for a "spin-down" program, since Annika has only used up her yearly max and not her lifetime max. This is the option I mentioned before, which will have a $2-3,000 per month deductible. A deductible like that will send us into some serious debt. But still, it's obviously better than trying to pay for a room at Children's on our own. At this point, Jörg is still holding out some hope that the president of the university will be able to appeal to the board of trustees that administers the insurance fund (the funds are pooled from a group of universities). The hope is that they will just allow us to keep Annika covered through the year. We do at least have the feeling that the university and that our insurance company (not the reinsurer) are trying very hard to find a solution for us. And Jörg just called to tell me that Children's is looking into re-running our bills with a higher discount applied in order to get our total back down under a million and allow us at least a few more months' coverage. It is fairly shocking to think that we could have hit a million in the early days of February, even including bills from December. If we could get a few more months' coverage, we would at least have enough time to come up with a decent plan. Jörg is looking at finding a job at our old grad school, Indiana University, for the summer and fall semester, just so that we could get new insurance to cover Annika until she can go back on his university's plan. This would involve taking an unpaid leave of absence from his current job. Thank goodness that he already has tenure, so that this is an option for us. Of course, this would involve selling our house and moving. And it's not even clear that that insurance plan would cover Children's, but at least it would give us insurance coverage until next January. Still, it's less than ideal. So we're thinking this all over, and Jörg is getting very creative in coming up with options to get us through this without having to declare bankruptcy. Finally, we have also looked into fundraising, particularly since it looks like our best option for continuing insurance coverage on Annika will eat up the majority of our monthly income, even before you include any of the other expenses of living at the hospital for months on end. I think that we will probably set up an account with COTA, rather than just putting up some kind of a paypal button. First of all, this means that we don't have to deal with any tax issues since COTA is a not-for-profit (non-profit? I have no idea of the difference. See what I mean? I definitely don't want to be involved in any tax mess.) Secondly, they offer a lot of support to help us set up fundraising efforts, since we are absolutely clueless as to how to even begin such a thing. Thirdly, we like the fact that if we have donations go through COTA, there will never be any questions about whether we are using the money to fund a beachfront vacation for the whole family (although I do think I could make a pretty good case why such a vacation might be deemed medically necessary). COTA disperses donated funds only for approved medical expenses. Finally, I like that COTA will use any donated money that is not used toward the funds of other children. It's hard enough to ask for donations, but it's nice to know that if the worst happens and we lose her, that the money will go to other children who need it. Is that a morbid thought? Am I just too tired to avoid fatalistic thinking? Setting up the COTA account will take us a few days, as there is quite a bit of paperwork involved. But I'll link to it once we get it all up and running. Again, thank you so much for all your wonderful support. I laughed so hard at the thought of contacting Michael Moore (suggested in the comments) with our little story of insurance woes. It's only sad because we were so confident that we had great coverage. Well, also because it happened so quickly that we didn't even see it coming. But the truth of the matter is that I have no doubt that there are insurance stories out there that make our tale of insurance terror sound like a veritable happily-ever-after fairy tale. So, wow. Thanks to all of you who have commented or sent us suggestions of places and people to contact. And thanks also, unendingly, for kind words.


Blogger Phantom Scribbler said...

Thanks for the update, Moreena. I swear, we are going to burn up the internet with our fundraising activities once your account is set up.

If we don't burn down some insurance offices first.

2/10/2006 4:15 PM  
Anonymous peripateticpolarbear said...

okay, tell me how, on this earth it is logical for someone to have to take a job in another state, move his family (including his sick child) in order to get enough insurance to make it through? insane. insane. Let us know when the account is up. I assume the account could be used to pay for that 2-3K/month deductible since that's the cheapest option it looks like?

2/10/2006 4:27 PM  
Blogger Kim said...

I have been following Anni's story for several months now, but this is my first time posting. I want to tell you that I am so very sorry for everything your entire family is going through. I can't begin to imagine how hard all of this is to deal with. I only hope you guys can come up with a solution to this senseless insurance debacle soon, and that Annika's bleeding stops and your family can return to some sense of normalcy. You are all in my thoughts every single day.

2/10/2006 4:34 PM  
Anonymous Anonymous said...

so glad you and Joerg are smart folks...glad to hear the both of you know so very much about all of this insurance stuff...continued prayers for your family.....hugs

2/10/2006 4:34 PM  
Anonymous Crystal said...

I like phantom's idea! I just have to say that COTA is a wonderful program, although I haven't been able to set up an account for our son, since noone seems to be very helpful on my end! But besides all that, they seem like a very sound group. And it is NOT morbid to think about the future in those regards, unfortunately in our situations, that is LIFE! I just live in a nice little fantasy world where everything is perfect! Every once in a while reality snakes it's way in, but I deal with it! You are a strong person, who has had to deal with a lot more than I have, and I respect you so much! Good luck with the insurance thing, and you and your family are always in my prayers!

2/10/2006 4:39 PM  
Anonymous Beanie Baby said...


I'll be checking back frequently to see the COTA link.

2/10/2006 4:54 PM  
Blogger Jane Dark said...

Okay. Like the others, I'll be waiting with the COTA link. Thank you very much for the update.

Phantom, be careful with those gas cannisters...;-)

2/10/2006 5:14 PM  
Blogger ccw said...

Thank you for the update. I will also be waiting for your COTA link.

2/10/2006 5:28 PM  
Blogger Brenda said...

I just have to say that I feel like we are about to witness (and have the honor of participating in) generosity of epic proportions.

And for a very deserving girl and her family - I might add!!

2/10/2006 5:34 PM  
Anonymous peripateticpolarbear said...

Waiting on the link and then planning on letting it rip! Someone on Phantom's site agreed to create a special button for us to put on our blogs.

2/10/2006 6:19 PM  
Anonymous Kristy and Ashlee said...

Moreena, its just not fair!! I have LOTS of fundraising Ideas!!! Make sure you have at least three people you TRUST to get this going for you!!! A media person, a campaign manager and a trustee! We use COTA... and so do lots of others!! Im sure you will have NO problem raising money!!! If you need anything let me know!!!

2/10/2006 7:40 PM  
Blogger Scrivener said...

Oh, the self-insurer loophole! I have fallen victim of that one on a smaller scale--Georgia state law requires that children's immunizations be covered by insurance, but our insurance was through the university system here, which was self-insured and therefore exempt from that law and we suddenly found out half-way into Chloe's first year that immunizations weren't covered under our insurance policy. "Suddenly found out" meaning I got a bill for $1000 for the immunizations she'd already received and was astounded to find out it was actually legitimate and not some kind of accounting mix-up.

PPB raises a good question: can that money be used to pay for the $2-3k/mo additional insurance policy?

2/10/2006 7:41 PM  
Blogger Laurie said...

Glad to read the update. I still think it's crap...but it's also real. I stand by my offer to help fight...or just to offer support.

2/10/2006 7:54 PM  
Anonymous Nikki said...

I'm keeping up with both you and Phantom, Moreena, and my husband and I are going to to whatever we can.

2/10/2006 7:58 PM  
Anonymous Marisa said...

This is totally off topic but can Anni eat cookies right now?? I REALLY NEED to know Moreena. :)

2/10/2006 9:13 PM  
Anonymous Stacy - Tanner's mom said...

Hey Moreena -

We ended up doing ALF because we didn't have the people locally - or the energy to do all the fundraising stuff for COTA. ALF is sign up & that's it (not a lot of fundraisitng ideas, but very easy).

If something does happen to Tanner, the ALF funds are used for liver research. And, quite frankly - I'm okay with that since I really want to know what causes BA someday.

Just a thought because I know that we didn't have the people to do all the COTA stuff.

2/10/2006 9:46 PM  
Anonymous Kristen (Havalah's mom) said...

Hi Moreena
I've ben checking your site constantly, but haven't said hi because I've been feeling a little depressed and feeling sorry for myself the last week or two, and the whole current state of affairs with Annika angers and frusterates me to no end, and I'm not even talking about the insurance stuff.
Anyhow I was thinking after your last post .... that you would need to raise an insane amount of money .... because you know all to well how fast those bills add up, but 2-3 thousand a month seems totally reasonable to me, I mean it seems more than do-able. If you ever want to talk about COTA stuff or fundraising, or just how bad it sucks to not be able to be blindly optimistic, give me a call or email me.

2/11/2006 1:56 AM  
Blogger Kathryn said...

So longing to be able to do something practical at last...You are the most remarkable family not to be crushed by all this. There must be some way round this that doesn't involve Joerg having to move you all.
I'm still trying to get my head round the fact that you can be bound by the small print of an insurance contract you didn't actually get to see...and am so unbelievably glad of the National Health Service here, even with its crop of m.r.s.a. superbugs. Though, of course, here parents fundraise to send their kids to the States for procedures that don't happen here, so it's probably catch 22 with sick children anyway.
Meanwhile, sending hugs and prayers as always x

2/11/2006 7:09 AM  
Blogger moxiemomma said...

many, many thanks for the update. COTA link will be on every blog on the internet at this rate! great news about the button maker.

2/11/2006 7:25 AM  
Anonymous Beanie Baby said...

In case anyone doesn't follow the story on Phantom's blog, I've put up a quick and easy page on different fundraising ideas we're bouncing around. It's here:

Any and all welcome! The page will change as the situation develops.

2/11/2006 8:23 AM  
Blogger Running2Ks said...

I have been out of the loop, and I am shocked and horrified about your insurance woes--I hate insurance companies.

I am so sorry. I know that something good will come of all of this. You have a lot of friends. Hugs to you!

2/11/2006 9:26 AM  
Blogger Running2Ks said...

BTW, I'll post a link to you here, and the amazing Andrea--the most helpful blogging buddy. Thank you, Andrea!

2/11/2006 9:30 AM  
Blogger halloweenlover said...

Thank goodness we have at least a plan. I'm with Phantom. It'll be the biggest fundraising the blogging world has seen ; )

2/11/2006 10:20 AM  
Blogger Moreena said...

PPB - yes, the fund could be used toward the deductible. All medical expenses are included, and insurance costs to continue treatment fall under that umbrella.

Marisa - yes to cookies! Since Thursday, all eating restrictions have been lifted. Of course, at the first sign of bleeding she'll be back to the no eating or drinking rule, so no promises on how long this will last...

I am flabbergasted at all the outpouring on Phantom Scribbler's site, and the organizational skills of Beanie Baby, as well all the creative genius of so many of you out there.

We really are working very hard to get this insurance thing straightened out, and, failing that, getting something set up that is completely straightforward and an unquestionably honest fund going only toward medical expenses.

Thank you all, again.

2/11/2006 10:23 AM  
Blogger Amanda M said...

Wow. You all are so on it! Way to go Joerg!!

Off to check out phantom and andrea's ideas.....

2/11/2006 11:44 AM  
Anonymous Kristen (Havalah's mom) said...

I think that even IF you can find some sort of insurance solution you should STILL do fundraising, because this current situation goes to show you ... you just never know, and you're right if you don't use the money yourself, eventually it will just go to help other kids, and it will be in Annika's account for her whole life .... if somehow you don't end up hneeding all of it in the next couple of years .... she could have it left when she is 25 and faced with meeting deductibles etc.
Plus for us, one of the best parts of fundraising is ... that it helps everyone else .. family and friends to feel more involved and not feel so helpless. when epople feel like they can actively DO something to help a situation it enpowers them and makes them feel better about the situation in general, and helps get rid of all of the guilt people have over they're own better luck.

2/11/2006 1:50 PM  
Anonymous Rowan said...

I'm sure that by now, someone has mentioned this. But I can't find it, so I'm going to. Have you thought about a press release. Nothing condemning, mind you. Just an informative piece.
It seems like once or twice a month we see something coming out of Phoenix about a kid at PCH who needs help. Usually there is a follow-up story about a week later, covering "the great outpouring of support" that ensued.
It might be a really hard step to take. But if it can make a difference, it would be so worth it.

2/11/2006 1:51 PM  

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