This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Don't lose head

This week, as I do every Monday, I’m checking in on financial matters. I’m alternating between looking mid-to-longterm one week and checking in on bills and programs the next.

Which is as much fun as it sounds!

No, it’s madness. Monday morning money madness….


The way hospitals bill is an outrage. It is an incredible headache just to organize and tackle your bills after extensive medical care. From the children’s hospital where Eli has received most of his care, we’ve gotten bills from separate departments — radiology, anesthesiology. We’ve gotten bills from a phycisian’s group. We’ve gotten separate bills from the hospital. The physicians group has auto deduct options, the hospital doesn’t — this is the same place, ppl. It’s a straight mess. Gee, maybe we should have gone elsewhere. Oh yeah, there’s only one children’s hospital in Oklahoma.

Hospitals need to do better. Much, much better.

Here’s the deal – after I had Eli, I was physically weak, mentally battered. Our son needed surgeries and we didn’t know why. Then we found out why: Eli has cystic fibrosis, an incurable, life-shortening chronic illness.

Through that early terror and confusion, the hospital’s guidance via an employee here or there felt wishy-washy and unclear.

Had I applied for a certain program, called TEFRA, starting the month Eli had surgery — I found out today — all of his medical expenses not covered by insurance could have been covered by this special Oklahoma program. The program is funded by either a tobacco settlement or cigarette tax. It’s for people who don’t qualify for things like Medicaid or Social Security benefits because they make too much money.

That means TEFRA is for hard-working schmucks in the middle like us — who, for whatever reason, always seemed to be screwed the hardest financially when something goes amiss in life — namely, chronic illness.

So ya know, back in December, the month I had Eli, I did understand there might be some kind of help, and I had the vague notion this help was time limited. I first went to the Social Security office and applied on Eli’s behalf for supplemental security income. I got my ghost-faced postpartum self there just before Christmas, while my son was still in the hospital. I did understand the first thing I would need was a denial letter from the SSI program to qualify for this TEFRA program. Or, if Eli qualified for SSI we could sneak our way into another program.

I spent three hours spent around Christmastime at the government office, where a woman asked me if my not-yet-1-month-old son had ever committed a felony or spent time in prison.

Well, there was that off-shore online gambling ring in week 1, but…he’s since cleaned up his act.

I followed up five or six times over the months, since we never got a final decision in the mail after my visit.

This spring I got a letter from a hospital program. It said, if I didn’t take advantage of this hospital program’s help, my file would be closed. File? What file? I didn’t recall a file, but someone was trying to help me through this mess! Someone somewhere I did not know even existed! I called and made an appointment with the infant transition program worker who sent the letter.

Gina has been a big help. I don’t know if she or someone else visited me while Eli was in the NICU. I don’t remember it. That doesn’t mean it didn’t happen.

The amount of information I was trying to process at the time overwhelmed my brain. I actually only remember what I wrote down on this blog, little else.

I finally got my act together, met with the Gina from the program, and took further steps to apply for TEFRA. This morning I called Social Security, based on a contact provided by Gina, to nail down our denial letter, which I need to qualify for TEFRA. Then I called a worker with the Oklahoma Department of Human Services — John — who surprised me by being friendly, efficient and capable. That’s right. I get to work with – not one, not two, but THREE separate government agencies to apply for this program! Next up is the Oklahoma Health Care Authority. Wee!

Unfortunately, John told me, to receive help with Eli’s surgical and hospital stay expenses, we would have needed to put in our application with the state human services department in December, when Eli first received care. Now, to do do that, all I would’ve needed was the denial letter from Social Security. The one I never got.


The more you knoooooow.

The good news is, if our application is approved, TEFRA can help with co-pays for things like medicines and doctor visits.

Mark and I only started getting a handle on our paper life within the last few months, and have much to sift through and organize still.

Through our pile of statements and program applications and lost opportunities, a realization:

Hospitals need to lay out options in a way that’s crystal clear to families that are living in a state of trauma. Departments need to communicate, and billing systems need to be consolidated. Someone needs to make sure families are pointed in the right direction in a timely manner.

Get your @#%^ act together, hospitals.

Listen —> I once got an estimate for over $200,000, for one aspect of the care Eli received over 30 days in the hospital. The insurance company took the hospital to task and beat that down $90,000. That’s almost half the bill!

What gives?

What would happen to a consumer who had no insurance, or had a plan that didn’t have clout to throw around like a major carrier?

I don’t really know.

The insurance and the hospital negotiated, the dust settled.

A birth, two NICU stays, an expensive helicopter transport and two surgeries later, the bills after insurance, from two hospitals Eli received care, hover around 7 to 9K. We’ve managed to knock that down some.

The way that’s all come at us – a piece here, a piece there, a piece from seemingly everywhere — is not good customer service. It’s crummy. It’s confusing. It’s maddening!

Hey – the care Eli received at this hospital saved his life, and let’s not forget that. That’s worth every penny.

We will pay these off, just like every other hard-working schmuck in the middle who wants to do the right thing.

Now it’s time for the hospitals to do the right thing.

Hospitals, hear my cry: When it comes to working with families stuck in medical emergencies and sending the final bill, just do better!


2 thoughts on “Hospitals need to do better helping families navigate financial options

  1. Very thoughtful post. I aggregate healthcare stories, and I’ve seen a lot of articles about how providers need to be more aware of the patient experience and engage patients more: What do you think of that concept? Seems like it might help with billing issues.


  2. megan says:

    What a nightmare for your family!


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