Donut Hole? Black Hole!

So after a two-year long low-grade struggle with the  American Social Security system, which ground through the process of initial rejection, denial of my appeal, and then finally a cameo appearance before a federal judge, I am Officially Disabled.  I was Disabled before that, according to my “Own Occupation” disability insurance policy (which was the only good financial decision I have ever made;  it has literally saved my life), but that applies only to the practice of Pediatrics and Adolescent Medicine and does not apply, say, to “Greeter At Walmart.”  Coincidentally, the Walmarts in my area have fired their greeters.  Perhaps the sales of Ol’ Roy Dog Food was flagging, and they needed to create a few more desperately poor elderly who might be able to spring for the 33 cent cans.  (Damn it, why does the “cent” sign no longer show up on keyboards?  Another of my conspiracy theories: the government is going to melt down all the pennies for the copper.  Think about it: we are walking around with FORTUNES worth of precious metals in our pockets and don’t even think about it!  N.B. it is a federal crime to melt down pennies, in case the idea should enter your head, as it did mine.

Where was I?  Oh yes. Normally when one gets Social Security Disability, there is a two-year waiting period before you can get Medicare health insurance.  So if you are trying to live on the approximately $1000 per month that most people are rolling in on SSD, what are you supposed to do in the meantime?  Medicaid, I guess, if you qualify.  But if you don’t qualify because your spouse had the good fortune to land a part-time job at McDonald’s with no benefits, well, you are just shit out of luck.  There is a very hole-y network of nonprofits that try to help people in this situation, but the need far exceeds the demand; thus we have an increasingly sick population, growing sicker all the time.

Should you happen to live through two years of being uninsured, then you get Medicare!  Yay!  I was extra lucky: because the Social Security system denied my claim automatically instead of looking at it, the judge ruled that my Medicare eligibility was up for “time served,” to begin not only immediately, but retroactively.  I got my hearing in December, and my benefits started ticking the previous October.  Confused?  Me too.

Strangely enough, the Social Security system does not give you a choice about federal insurance plans.  Previous to becoming Officially Disabled, I had a fairly expensive but pretty darn good plan through the Federal High Risk Pool, which is YES, PART OF OBAMACARE, which made it possible for me to get insurance after I had been denied by private insurers.  It was a standard choose-your-own deductible, then copays for doctor visits and 80-20 for hospital stuff up to a reasonably low out-of-pocket, which I found quite livable.  The drug plan was good, rarely demanded precerts, and had pretty standard copays.

And then.  And then….I am suddenly catapulted into the murky and confusing world of Medicare, because if you’re on SSD you have to be on Medicare. So at first gasp it doesn’t look too daunting:  there’s only part A, B, C, and D to worry about finding providers for.  I said to my therapist, whose idea this whole rat’s nest was in the first place (thank you, B__), um, don’t you think I should go and see a social worker to help guide me through the system?  Oh, no, she chirps, just call up the AARP.  They’ll walk you through it.  They have the best supplemental plans.  Oh. Er, what’s a “supplemental plan”?  That’s Part C, which pays for doctor visits, and Part D, which is your drug plan.  Parts A and B have to do with hospital care.

OK.  So I get my Medicare card, which automatically means my Federal Risk Pool insurance is cancelled.  So now I have to QUICKLY do something about transferring pharmacies, because I have my brand-new Part D card for medicines, and they have a mail-order pharmacy through which you can get three months’ worth of medicine with only one copay instead of three.  YEE-HAH!  So, off I go on the merry-go-round of chasing down doctors’ assistants and nurses to call my prescriptions in to the new pharmacy, because no, you CAN’T just transfer them from the one you already have.

One of my meds, the one I use to digest all my food with because for some reason my body doesn’t make those enzymes, took FIVE phone calls from the long-suffering physician assistant to get it right.  Ay-ay-ay, I’m having visions of chimpanzees in puffy white caps pouring pills into bottles.  Not encouraging.  So finally they managed to get everything right, and in the meantime I’m surviving on my hoard of meds that I brought back from Israel in October.  Had it not been for them, I would have been up shit creek without a paddle.

So the nice lady calls from the pharmacy and we go over the Rx’s one last time to make sure she’s got them right, and then we place the order, putting all the copays on my American Express Card that gets the mileage points for every dollar you spend, and…”Oh dear, are you sure you want this entire order?  It puts you into the Donut Hole right away.”  The what?  Donut Hole?  Isn’t that something you get with coffee?

Oh no.  That’s what you get with Medicare when the retail (I repeat, RETAIL, because that’s the part they don’t explain to you up front) expenditure hits $1950 (plus or minus a bit, I don’t have it in front of me.)  So here’s how it works:  You pay a premium of about $40 per month for prescription drug coverage.  When you buy a prescription, you pay a pretty normal copay based on a tiered system, anywhere from $3 to 1/3 of the actual cost of the drug if it is a specialty drug.  After the plan has bought you $1950 worth of drug, then the plan pays NOTHING until you have paid $4,750 out of your pocket (if you have one), at which point the plan goes into hyperdrive (“Catastrophic,” they call it, just for drama) and you pay almost nothing until the whole sonofabitching thing resets itself at the top of the year.

So what, I ask in my innocence, do you do if you do not happen to have nearly $5000 kicking around?  Oh, Medicare has a program for “Assistance,” but almost nobody qualifies for it.

There are community programs (in some communities) that help.   If you are indigent according to the Medicaid standards, you can just get Medicaid.

Otherwise you’re screwed.  Many disabled and elderly persons find themselves with too much money to qualify for assistance programs but not enough money to buy their medicines.  So let’s see, what happens when someone can’t afford their expensive blood pressure medicine and (G-d forbid) have a stroke?  Well then, Medicare Parts A and B kick in then.  No worries there, got you covered.  So if you can’t afford to take your medicine, don’t fret, because Big Government is gonna take care of you in the hospital after the heart attack you get when you can’t afford your Plavix (very expensive anti-platelet drug that sounds like a kind of mouthwash).

So what am I going to do about this?  Luckily, I just got one of those packets of checks from the credit card company where I can write myself an interest-free loan for a year.  That’s what I’ll do, because I don’t have any other choice.  And I’ll pay it off in installments over the year.  I’m damned grateful to have opened that packet instead of chucking it directly in the paper recycle like I usually do.  Must have been that guardian angel again.

And speaking of guardian angels, the one that convinced me back in 1992 when I was hale and healthy except for the occasional skiing wreck, and making what was for me a freakin’ lot of money, THAT guardian angel who convinced me to sign on the bottom line of a very expensive, very comprehensive private disability plan….THAT guardian angel gets a set of gilded wings from me, today and every day, because if not for that policy I would be, well, to tell you the truth I would probably be dead, because I would not have been able to support both my life and my diseases.

My blessings are many, many, many.  This whole SSD process has opened my eyes to the heinous and disgusting devaluation of the disabled and elderly that has become a legacy of shame in this country.  I want to do something, but don’t have a clue where to begin.  I can’t even go to Washington and set myself on fire on the White House steps because I’m terrified of fire.  But one thing is certain: with the aging of our population, if Medicare doesn’t get fixed, there will be many of our ill and elderly going not only into the donut hole, but into the black hole, never to emerge.

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  1. I went through the whole 2 1/2 year waiting period for my disability — WHICH I HAD BEEN PAYING INTO MY WHOLE FREAKIN’ WORKING LIFE — to be given to me. I had been told by my doctor I had to quit my job or I would die. I cannot tell you how deeply that bothered me b/c I had been raised with a good work ethic. I kept telling myself it was only until I got over this illness & then I could get back to work. I didn’t understand this was going to be my life from now on for better or worse — most definitely worse than better.

    What I don’t believe anyone has added to the healthcare mix is how many “baby boomers” are now past 65 or rapidly approaching it. This was easily foreseeable, yet not one of the POWERS THAT BE has done anything regarding healthcare or assisted living/retirement places that are affordable to someone living on SS. It’s just going to get worse and worse as more of the humongous “baby boomers” age.

    If they’d quit allowing the superrich — congressmen/women, presidents, etc — to receive both SS and their huge retirement benefits and their secret service people for life (in America) that would force them to live the way normal people live — especially if all they received was SS!! I’d like to see anyone of them live on what we live on!! They couldn’t do it!!

    I thank God for Tipper Gore getting the message out about mental/emotional illnesses. We need more people in power to get sick, to be disabled (although I’m not wanting to inflict these painful illnesses upon anyone) b/c it seems it’s only when celebrities, no matter in what field they shine, get sick that their illness makes the news and research is flooded with monies to find cures, PSAs are all over the tv, newspapers, billboards, etc., and regular people with those same illnesses are able to benefit.

    You are quite right — this is shameful indeed!!

    • Your next-to-last paragraph is critically important: if our legislators continue to be floated on an cloud of personal immunity from the consequences of the very monsters they legislate upon the rest of us, no change can ever arise, because there is no motivation.

      I am always happy when some celebrity “comes out” with their mental illness or other chronic illness/disability, because it serves as a sort of instant stigma-eraser. The problem is that most of these people have relatively mild symtoms that they can “triumph over” and lead “normal lives” despite their challenges. I admit being envious. Sitting here in my bathrobe at nearly noon, waiting for last night’s meds to wear off enough so that I can trust myself to get up and take a shower without falling and killing myself is not what I envisioned when I walked on stage to receive my medical diploma. The world needs to see THAT kind of disability, too, and that we live our lives and our daily struggles despite the fact that we see no particular endpoint in sight. Just managing to get up in the morning and live until bedtime (and in my case, live through the nightmares) is our daily triumph.

      And yet, rather than being treated as heros, (and it makes me want to crawl under a rock with embarrassment to think of all the veterans who are being treated like the rest of us as down-at-heel bums), we are treated as an undesirable element in society. Yes indeed, you bring up the terrifying issue of aging baby-boomers, and my blood runs cold with the thought.

      One reason my therapist thought it would be a good idea for me to get on SSDI now rather than wait another couple of years for Social Security to kick in on its own, is that she is afraid that with the flood of Boomers coming up, there might not even BE a Social Security system, broken though it is, and that it might give me a fighting chance to be “grandfathered” in. I tell you what, if this is the way it’s going to be, I might be better off going back to Israel and selling red strings on the street for a shekel apiece.

  2. I’m currently on a high-deductible insurance plan that involves an HRA, FSA, HRA arrangement that has the world’s most confusing paperwork. The insurance is great, but the plan administration (a separate f’n company) is horrid. I had to spend over an hour last week dealing with their paperwork and processes, and that’s not unusual – on a regular basis. The system is designed to make you avoid using it.

    Our “donut hole” is a $2K deductible contribution after the first $500 from the employer; after we do our part (through an FSA account from which payroll deductions are made at a steady rate throughout the year, fortunately) then the employer’s contributions kick back in for another $8500, after which the insurance company takes over.

    In the last 45 days, with no non-routine expenses, we’re already nearly through the FSA, which puts our health bills in the neighborhood of $1300/month. And that’s with insurer-negotiated rates on many services and prescriptions, and not that much “optional” treatment (therapy, basically, which shouldn’t be considered optional.)

    The system is simply nuts. Crazier than we are, that’s for sure.

    • Ouch! Ouch! Is the $1300 for both of you? If so, that’s “not so bad,” as the f’ing (well said) insurances go these days. Before I found Affordable Care, which is the Federal High Risk Pool, Blue Cross/BC offered me a plan for $1250 a month! Wasn’t that good of them? It’s partly because of that that I moved to Israel in 2007. My monthly premium there is about $150, with quite reasonable drug co-pays (largely because there is no such thing as “drug detailing” there: no middle-man, negotiated costs). I was hospitalized twice, once after getting bitten by a street cat for a week, and once because of GI bleeding, another week, and paid NOTHING. Yes, there are big problems, like for instance, sometimes resident doctors don’t get paid for a few months or a year. Yes, that’s right.

      Anyway. The best advice I ever got, although it came too late for me, is: never stop working. Even if it’s office hours half day a week, never, ever stop working.

  3. Thanks for the post. What an eye-opener! I am terrified of getting old because of this BS illness. I may be in a good situation mental healthcare-wise right now, but what happens when my husband and I want to move back to the States in another +/- five years? Healthcare in the US is in shambles and mental healthcare? Well, if you don’t have an exceptional plan from a Fortune 100 company you can forget it. I love my country, I am homesick as hell, but the truth is I may *never* be able to move back because of my Bipolar. That’s a pretty bitter pill to swallow, even if you chew your Ambien.

    • I hesr that loud and clear. When I’m in Israel my healthcare costs almost nothing. If it were not for my sick parents in the USA I would be back in Israel now, with no worries.

  4. Thanks so much for sharing your experience which unfortunately echoes the same sentiments of millions of people in our country on a daily basis. The stories I hear from people going through this and similar situations are so heart wrenching.

    • Thanks for participating! I think the only thing that is going to create change in this unjust and if I may state my mind, Machiavellian abuse of the poor, elderly, disabled, and disadvantaged is a grass roots movement. Individuals cannot impact this situation. We must come together in order to change this thing.


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