As of July 27, 2020, I am elated to announce that I am no longer in debt to my local hospitals. I’m also very angry that it’s taken as long as it has.

To give you some background: I have Functional Neurological Disorder(FND), which is a relatively common (but rarely properly diagnosed) neurological condition that doesn’t show up on standard tests. FND is recognized by the presence of neurological symptoms but the absence of standard neurological causes.

For many patients, myself included, FND is generally a trauma-induced and stress-responsive condition. This isn’t a condition that generally requires regular visits to the hospital, but instead may involve physical and psychological therapy and various other supports.

Why I had three hospital visits in 2 months

Visiting the hospital isn’t a normal thing for me, but a new symptom(constant, moderate headache) had me feeling like a hospital frequent flier.

I went to a hospital three times last fall because I have recently developed migraines—another neurological disorder that seems to be primarily stress-responsive.

The first two visits, in September, were due to my having an unrelenting headache and my neurologist recommending the trip.

I ended up going twice due to the ER handling my first visit so poorly. Among other issues, they didn’t give me the appropriate medication, then sedated me so I couldn’t protest, and then they sent me home with Valium instead of migraine medication.

This hospital was not very close to me. I went there because my neurologist was there and I hoped that he would be able to protect me from the stigma that people with FND often face in emergency situations.

The third hospital visit was to a hospital a little closer to home, where I had other procedures done.

I went there for a detailed series of MRIs in order to double-check if I had any blood clots or brain damage or other such things that can also cause intractable headaches.

I had to do it in the hospital because of my FND.

In my case, FND expresses in sudden uncontrolled movement, of almost any body part at any point while I am under stress.

Over the years, I’ve built up some control, so I can keep a limb still for a blood draw, or hold still for an X-ray. But the idea of me being able to safely stay still for a detailed MRI is laughable.

I had to do it under sedation. To do it under sedation, I had to be in a hospital.

Billing issues

So on the day of, I had minimal problems on the billing front.

The first ER visit, I was just sent home without paying a penny.

The second one, I paid $51 (I guess the billing person didn’t get to me the first time or something). And the third visit at the second hospital, I wasn’t expected to pay a penny.

Knowing how my insurance (Medicare) works, I knew I’d eventually have to pay a residual 20%, but also knew that hospitals have Charity Care programs, so I most likely wouldn’t end up needing to pay anything, because while I’m not Medicaid-eligible, my income is low enough that I usually qualify for the charity care coverage.

So I just waited for the bills to come out.

In November, I got a bill for a couple of hundred dollars for each ER visit.

I called the payment line, was connected to the Charity Care folks, and had an appointment set for early December.

It turned into a bit of a fiasco (the hospital apparently had two programs referred to as “Charity Care” and I was sent to the wrong location), but I had an application that seemed complete to turn in that day.

A couple of weeks later, I was informed that they wanted proof that my part D coverage was paid before I got my check every month, to explain the difference between the amount SSDI said they paid me and the amount actually paid into my account each month.

To be clear, I had multiple pieces of paper explaining this, including a letter I wrote and signed, and a printout from my part D provider showing that they got a monthly payment from Social Security.

This apparently wasn’t good enough—they wanted a statement directly from my provider that showed that it was my account and that they got the money directly from Social Security.

The struggle to find the exact paperwork they wanted

As instructed, I called Social Security’s main line to make the request—and was informed (after that lovely couple of hours of waiting) that it was a Medicare issue, so I had to call Medicare.

After several failed calls (the phone would ring, then I would be put on hold for 10 or more minutes, then the line would disconnect), I finally got through to a human being, who told me that while this was Medicare-related, the billing was handled by my part D provider, so I needed to call them.

I ended up spending two months trying to get my part D provider to mail me an itemized receipt of the past year so that I could send it to the Charity Care office.

Two months.

My first call, it sounded like it was all taken care of, but I never got the form.

I called back a few weeks later to learn that there was no record of my request (which explained why I never got it).

What followed was a nightmare of people failing to comprehend my request, misunderstandings about who I was filing a complaint about, and the absolute failure of the insurance company to send me the information I requested.

I wrote a post about that experience, and when I posted it on Twitter, I directed it to the insurance company that had failed me so badly.

They don’t like bad publicity.

Within minutes, they responded by DM and asked what happened and if they could resolve it.

I was on the phone with one of their representatives that day, and had the receipt I’d asked for faxed to my mother later that week (I don’t have a fax machine and the only options were mail or fax).

I highly recommend that if an insurance company gives you a hard time, you direct some bad press their way and notify them of it. It sure worked wonders for me!

During those two months of fighting with the insurance company, the hospital decided that I’d abandoned my claim, so sent it back to billing. They were threatening to send it to collections, so I had to set up a payment plan.

I highly recommend using payment plans instead of letting bills go to collections. Once they are in collections, they cannot be forgiven by the hospital, so you just have debt that could negatively impact your credit.

Keeping the debt with the hospital allows you to eventually get it settled through Charity Care or similar programs.

COVID-19 makes everything harder

By this point, COVID-19 was recognized as a danger, and everything related to the hospital became more challenging.

Many departments, including Charity Care, were less available and frequently didn’t answer their phones. I was given an insane amount of wrong numbers to call when I tried to contact the Charity Care department and get them to understand that I had not given up, but was trying to get the paperwork they requested.

When I finally got my bill from the second hospital (apparently, they got into a turf war with my neurologist about billing), it was pretty much at the height of the COVID-19 outbreak.

I made a few calls and learned that the work had been subcontracted to this other company.

In order to contact that other company, I had to receive their phone number by mail.

When the letter arrived, I called, and upon explaining that I have too much income for Medicaid, they told me I needed to wait for the application from the hospital to be mailed to me.

I was told it would take two or three weeks.

Two months later, I still hadn’t received it. On the bright side, I also hadn’t received a follow-up bill.

However, I was still getting monthly bills from the first hospital.

I agreed to make the smallest possible payments (an option I highly recommend, especially if it’s likely the bill will eventually be forgiven).

In my case, that meant I was giving the hospital $10 a month, which, while annoying, wasn’t much of a hardship.

Important life lesson: hospitals have a customer service department!

With COVID-19 in the background, the hospital billing department was being a little nicer than usual about things, and so I was able to get that $10 monthly payment pushed back for a month or two, and each time I called and talked to Billing, they did try to be helpful—they just didn’t have many tools to do it.

One person I talked to mentioned something that I either hadn’t known about or had forgotten: most hospitals have a department specifically designed to help patients make sure their needs (both in the hospital and afterward) are met. Basically, these are the folks to go to when things go wrong and you’re not getting your needs met.

Every hospital should have one. They go by somewhat different names, but “patient experience” is one of the nice euphemisms, and “patient satisfaction” is another one. Basically, this is your go-to department for when things don’t go right. Think of it as the hospital’s version of a customer service department.

As I said, there’s one in each hospital. So I had to call two hospitals and call each department by the right name, but eventually, I was able to get through.

Each time I called the Charity Care department number, I would get a recording telling me to leave a voicemail, followed by a recording that said the voicemail was full.

I was really out of options.

I called those two departments, and once I got through, things started moving forward.

At the first hospital, once I reached the Patient Experience department, they were able to reach out and confirm that the information I had faxed in had actually gone through and that now, finally, Charity Care had all the information they needed, and my application was being processed.

At the second hospital, I still hadn’t received an application, so once I explained the situation, they connected me with an employee in Charity Care via email, and I was able to electronically submit all my information. In a couple of days, my application which I had literally waited fruitlessly months for, was submitted—even though I didn’t receive the form in the mail for another week.

One final insult

To demonstrate just how poorly everybody involved communicates (COVID-19 made this worse, I believe), I got a bill with FINAL NOTICE on top from the first hospital.

The hospital which had told me that my application was complete.

I called their patient experience line and got the operator. Eventually, I got through to a real person, and they agreed that it should have been handled.

They asked me about my coverage letter—the one I’d been told was in the mail but never received. They agreed that was weird, and reached out to the Charity Care department for me.

I got an email the next day, with the letter—but it had the wrong month on it! It said I was covered from October 2019 to October 2020 (Charity Care coverage is good for a year), but my appointment had been in September (the other hospital had been October).

I’m still not sure if that was them sending me the wrong statement (the same subcontractor covers both hospitals because both hospitals are in the same medical group), or if they messed it up that badly.

I’m still waiting for a call back from the Patient Experience department to discuss that little fiasco.

But I called the billing line in the meantime. I talked to somebody there and confirmed that I owe $0 on the bill I got the final notice for—and that’s what matters most.

I had her check the other bill, and she let me know that that one is being processed by Charity Care—and I know I have everything in.

So, finally, after all this time, I don’t have this hanging over my head anymore. It’s been acknowledged that I don’t owe this money. It’s been a fight, but at least it’s done and I’m free.

Are you eligible for Charity Care?

If you are low-income, make sure that you investigate Charity Care and related coverage.

If you are on Medicaid, you shouldn’t ever owe the hospital anything. You are automatically eligible for Charity Care.

It is possible that the hospital will pull a fast one on you, so if you get bills, call the hospital back and try to set an appointment with the Charity Care department to discuss it.

Not being on (or eligible for) Medicaid doesn’t mean you can’t get Charity Care.

Medicaid coverage generally goes back three months prior to your acceptance as far as medical bills are concerned, so you can apply for Medicaid when you get out of the hospital, and if you’re found to be eligible, it retroactively pays your hospital bills.

For this reason, hospitals are happy to help you apply for Medicaid if you may be eligible and have used their services. Generally, that application help is part of the Charity Care umbrella.

While you need to be considered “low income” to qualify for Charity Care, the rules are different from those of other needs-based programs.

I am categorically unqualified for Medicaid because my SSDI payments are too high, but I am still low enough income for 100% coverage of the residual portion of my hospital bills.

Additional experiences

Al and I have both been helped by charity care programs. After his hip surgery, we were hit with a hospital bill of around $3000. That was low compared to the full cost of the surgery, but way more than we could afford.

Initially, Al wasn’t eligible for their charity care program because his income the previous 12 months was too high, but he was able to set up a payment plan(another good option to spread out the costs).

About 6 months later, he checked in with them again, and they recalculated his income taking six months of no earned income into account, and he qualified for their program. The amazing thing was that their program was total forgiveness of the debt, and coverage for current and near-future hospital stays.

I’ve used charity care a few other times, though my bills have never been catastrophic.

A few years ago, I had to have a biopsy taken, and because of my Functional Neurological Disorder(FND) symptoms, I needed to do it under sedation.

When all was said and done, I owed about $550, and had almost all of it forgiven by applying for charity care.

I still had to pay the residual on my anesthesiologist(I think that was $30 or so on a separate bill), but the bulk of the debt was forgiven.

I also was able to apply for similar assistance when I went to Louisville for treatment of my FND symptoms(a 6-day hospital stay), and again had most of the bill covered.

Both of us had insurance at the time(I have been on Medicare since 2006, Al was covered by his employer).

In my case Medicare covered 80% of the costs. That remaining 20% is what was forgiven, even with being financially ineligible for Medicaid.

I highly recommend asking about Charity Care whenever you end up visiting a hospital – it doesn’t hurt to ask, and if you are eligible, it can help a lot!

Lessons learned

Getting Charity Care coverage is different every time—even sometimes at the same hospital. Sometimes it’s relatively easy (I’ve had it done for two visits, with paperwork I could easily gather), and other times, it’s a nightmare (like this nine-month odyssey of inaccessibility).

Because of this, one nightmare experience doesn’t mean that every time will be one, and likewise, one good experience doesn’t guarantee that they all will be.

If during the process you have problems with your insurer, as I did, calling them out on social media may help get them to actually do their jobs.

Many people on Medicaid have their coverage provided by these private insurers (who contract with state government), and Medicare part C or D will also often use private companies for coverage.

If the going gets tough, get administrative help!

You often can have an employee at Charity Care walk you through the application process (in fact, that’s generally required), but on top of that, you can always call the Patient Satisfaction/Patient Experience department (there are multiple other possible names, but keep asking—one exists!) to get additional support to make sure that Charity Care is doing its job.

Persistence is key. When dealing with programs like that, there is always going to be some inherent bias against you.

Not you personally, but you as a representative of the poor, or you as a disabled person, or both.

Paperwork may get misplaced.

They may decide vital information is missing when you believe all the bases are covered.

Somebody may forget to add something vital, or information may not get through to the right person in time.

It happens.

Most (if not all) of the time, it’s not your fault.

It’s not an intentional expression of hatred against you.

Most of the time, it’s just the mountainous bureaucratic work done by overworked/underpaid/underappreciated employees, with you the unintended victim of it.

It isn’t fun, it isn’t easy, and it’s exhausting.

But if you keep organized and just take the steps you need to as you have the energy for it, you will be able to chip away at it, and eventually, you’ll wear them down, they’ll run out of excuses, and you’ll get heard.

This is work, there’s no doubt about it, but it is work that you can do, and it is work that you can generally do at whatever pace you can manage.

I just want to emphasize that Charity Care, like most needs-based programs, is a useful program that can help you financially but is often exhausting to work with.

I want to give you that essential vote of confidence: you can do it!