I don’t really know how interesting this is going to be for 95% of you, but someone asked me to write about it and after some consideration, I decided I would for two reasons: 1) A long-time reader asked, and I like her, and I’m a giver like that and 2) maybe even if this doesn’t apply to you and never applies to you, it is somehow informative to have some idea of how this goes, even if only just as a bit of an eye-opener about how health care works in this country right now.
So if you’ve been reading along here for a while, you already know that my daughter is now in her fourth month of residential psychiatric care, and our private insurance—which, for the record, goes though One Of The Gigantic Insurance Giants—carries exactly zero benefit for the care she’s receiving. Zip. Nada. Not a single cent of it is being paid for by insurance. I could write an entire book about why this makes me want to set things on fire, especially because our insurance DOES cover “acute care hospitalization,” which means that they DID pay for the times when the kiddo was an immediate danger to herself and spent anywhere from a few days to a couple of weeks being “stabilized” at a facility that costs twice what the residential place costs. The difference is that THAT kind of hospitalization is “meant” to be short-term and THIS kind is “meant” to be longer-term and insurance companies would rather pay more for less time and OH GOD GIVE ME A LIGHTER.
In case you’re not getting my drift here, I think this is beyond stupid. Unfortunately, I don’t run the insurance companies.
For anyone who likes to bitch about the government “getting involved” in healthcare in this country, let me just tell you this: My ex-husband makes an excellent living, and he pays child support. Otto makes a decent living, and so do I. Between the three of us we have two (mortgaged) houses, food on the table every day, all of our needs covered and—let’s face it—plenty of “wants” as well. (It helps that none of us have terribly expensive taste, but still.) We are solidly middle-class. My kids have THREE working parents, all of whom are deeply grateful to have escaped unemployment during this bleak time in our country’s economy. Sure, there have been salary freezes and I’ve lost clients, but we’ve all continued working. I don’t think any of the three of us have ever felt that we lacked or that our kids were left wanting for anything. We pay a hefty chunk of Otto’s salary towards our (subsidized) health insurance, but I have always felt like it was well worth the money we spent; our out-of-pocket costs, even when Monkey had surgery, even for Chickadee’s short-term hospitalizations, were very reasonable.
How long do you suppose two relatively fortunate households like ours can afford to provide necessary medical treatment in a situation like ours when there is ZERO insurance coverage?
I’ll give you a hint: The facility Chickadee is at—and it is one of the less expensive of its kind—costs $550/day. That’s $16,500/month. As we crossed the 3-month mark, we crested $50,000 in uncovered medical expenses (with no foreseeable end in sight).
As I spent hours upon hours doing research and looking for answers, I kept asking “How do people pay for this?” And the answer that came back, most frequently, was, “They don’t. They go bankrupt.”
So. This, right here, and the figures I just gave you? Mark this date on your calendar, because this is the most I’ve ever discussed money here, and it probably won’t ever happen again. I have a lot of neuroses surrounding money, anyway, and I was raised in the “we don’t talk about money in polite company” sort of way. Do I talk about money in the general, let-me-give-you-some-tips sort of way? All the time. Do I ever lay out my personal finances on the Internet? Oh lord, no, NO, A THOUSAND TIMES NO. It’s not my way. And as I finally told the whole story of what was going on with Chickie and said only that it was “expensive” and we were “worried” (wherein “worried” means “thinking OMG WE ARE GOING TO BE HOMELESS AND EVERYONE IS GOING TO DIIIIEEEE!!!”), people started talking about “helping” and “donating” and I put the kibosh on that just as fast as I could. Because this is scary—awful, really—but this is a kid with three parents with decent jobs and I’m well aware that we are fortunate. I could not, will not, take money from well-meaning folks when so many other families have it worse. Period.
A lot of families are living paycheck to paycheck. Again, we are both frugal and fortunate; the hospital required a cash deposit and we had enough money for that. And then they required another payment and we had enough money for that, too. Between the three of us, we managed, in part because of my aforementioned neuroses about money and resultant penchant for squirreling away savings for a rainy day. (It’s possible there was a point at which someone said, “Well, here’s the motherfucking thunderstorm!” but I admit to nothing.) But as my daughter’s hospitalization continued it became clear that yeah, we can’t do this indefinitely. Who could? I mean, really, except for those who are really rich?
All of that is background. The question I was asked, actually, was how we got Chickadee on Medicaid, because—spoiler alert! GOOD NEWS!—this weekend we finally received confirmation that she’d been approved. Quite honestly I feel a little hinky about it even now, because—see above—this is a kid with three parents who make a decent living. But on the other hand, NO ONE can afford the kind of treatment she needs as long as insurance companies are allowed to exclude it from their offered coverage.
Here’s how I did it:
1) I asked a lot of questions and did a lot of research on how a minor might qualify for Medicaid even if her parents make “too much money” for the “regular” qualification.
2) This led me to my local DFCS, where I was told I could apply for coverage for her under my state’s deeming waiver if she met the criteria to be declared disabled. (Fellow Georgia folks might better recognize this as the Katie Beckett program.) I went through the paperwork to apply on Chickadee’s behalf for this program.
3) A week later, I got a phone call from a nice gentleman who explained to me that Chickadee was ineligible for this program because she was currently hospitalized. This program is specifically geared towards keeping high-care-needing kids OUT of the hospital, he explained. Should she end up back at home but still in need of supplemental coverage I could reapply, but only if we’d already been turned down by SSI, which—he pointed out—was probably where we should’ve applied in the first place.
4) I started an SSI application on Chickadee’s behalf. Note that our income makes her ineligible for SSI, except that there’s this handy law that states that once your minor child has been hospitalized for over 30 days, she can be considered a “household of one” with independent assets. I don’t know about your 14-year-old, but mine doesn’t have any assets (at least I thought she didn’t… keep reading), so we went ahead and applied for her that way.
5) Our first SSI application on Chickie’s behalf was actually interrupted before completion and denied because I co-own a savings account with her which quite literally holds 14 years’ worth of birthday and holiday checks, allowance, etc. That account—her life savings—had more than the allowed limit in it ($2,000) for her to qualify. I was told that money needed to be paid to the hospital, and not only that, it had to be paid DIRECTLY to the hospital, DIRECTLY from that account, or the government would suspect fraud if it was moved in any other way.
6) I spent a very entertaining few days trying to get my (online) bank to take my child’s life savings and somehow give it directly to the hospital. For lots of stupid logistical reasons, this ended up being impossible. All I could do was move the money to my (non-online) checking account and then write a check to the hospital. I then had to investigate getting a sworn affidavit explaining what I’d done and why so that the government wouldn’t put me in jail for fraud because it was literally impossible to move the money directly. FUN!
7) I called an advocate and also spoke to a couple of disability lawyers, just to make sure I had all my ducks in a row. Like, for example, I thought I had to appeal the SSI denial, but actually, we had to reapply. You only appeal if the reason they turned you down wasn’t true. It was true that Chickadee had initially had too much money in the bank, so we needed to start a whole new application.
8) SSI application, take two: I’d done the first one over the phone; for the second one, Otto and I went down to Social Security in person, and we brought donuts. The rep we worked with liked us, appreciated that by now we had an organized folder of paperwork, and seemed amused by the donuts. (Hey, whatever works, man.) This time we got through the entire application and were told that Chickadee, if approved, would receive a $30/month SSI payment. I may have done my slightly-hysterical inappropriate laugh while explaining that the SSI was not really the point; we needed the Medicaid to cover her hospitalization. He said he understood. (If you qualify for SSI, you qualify for Medicaid automatically.) Once everything was done, he told us the state had 150 days to make a ruling. I cried most of the way home.
8) I started freaking out every time an envelope arrived at the house with a return address from the Social Security Administration. It was various pieces of paperwork, either telling us that they’d requested information from this or that doctor or asking us to give this sheaf of forms to this or that person. One packet requested that we have the enclosed paperwork filled out by Chickadee’s teacher. I gave it to the hospital.
10) Three weeks after the initial “teacher” packet, I got ANOTHER one, saying the first one had never been received and our application was “in jeopardy.” Commence major freak-out. I called the adjudicator listed on the cover letter and was able to ascertain that the packet HAD been returned, but as the psychiatrist paperwork and teacher paperwork had ALL come from the hospital, somehow the teacher stuff had been overlooked and misfiled with the doctor stuff. Phew. I had a really nice conversation with the adjudicator, a fellow mom who was not at all the “government robot” I expected. She told me the file was complete and “looked good” and that she was sending it to review that very day. “Sit tight for 30 days,” she told me. “I can’t promise anything, but… sit tight.”
10) Here I should probably point out a few things, like that being ruled disabled by Social Security as a minor is very different than being ruled disabled as an adult. When you hear horror stories about applications for SSI that drag on for years and through several appeals, those are stories about adults. Apparently for minors the rules are a lot less complicated; we’d been told that if you apply for a minor, pretty much if they’ve exceeded two related hospitalizations in a year, they qualify. Chickadee was on her fourth hospitalization in six months, so we were pretty sure she would qualify… it was just a question of WHEN. Also note that once you HAVE Medicaid, it’s like any other insurance in that they still review associated costs and decide whether or not to pay—it’s just another form of insurance, not a magical money tree—but again, the criteria for what they cover tends to be a little more inclusive than most private insurance.
11) Eight days (not that I was counting…) after I spoke with the adjudicator handling the application, we received a letter informing us that Chickadee had been deemed disabled by the government and eligible for both SSI and Medicaid, retroactive to August 1st.
12) I cried again (surprise), but this time with relief. We have already paid the hospital for June, and we’re still on the hook for July. It’s a ton of money, but still. We can manage, now. Probably the remainder of these bills will be covered.
13) I am still investigating what happens here when she’s discharged from the hospital. Once she comes home again, she’s ineligible for SSI because she’s no longer a household of 1 (and exceeds the income cap). I don’t know if this means she loses Medicaid as well; if she does, we can go back and apply under the deeming waiver, but I’m hoping she gets to keep the Medicaid without our having to do that (because it’s the whole entire process over again, please kill me, and the reality is that our private insurance will cover whatever she needs as an outpatient, but the chances of rehospitalization remain high and I don’t want to have to do this again if that happens).
I estimate that, all told, I spent about forty hours on this process… maybe more. I’m a relatively bright, educated person and parts of the process (figuring out who to contact, understanding all of the various rules and exclusions) were convoluted to the point where I often felt like I had no idea if I was doing the right thing or contacting the right office. As annoying as it was, we got through it pretty quickly compared to the horror stories I’d heard. Still, anyone who wants to tell me that medical care in our country is “just fine” is welcome to kindly do something unmentionable with those donuts I brought down to Social Security.