MS Strength

I’m becoming accustomed to the ins and outs of Social Security Disability Insurance (or SSDI): I was claimed disabled in January of 2006, I was eligible for benefits starting in July of 2006, and I started receiving compensation in July of 2008 (after a lengthy legal process.) However, I was mid- MS relapse at the time of winning my case and since my husband and I were on shaky financial ground (living pretty much on his moderate income), we decided that I should opt out of my voluntary Medicare coverage that came along with qualifying for SSDI. The monthly cost was small– $110 for Part B medical coverage— and Part A hospitalization coverage was a freebie, but since I couldn’t afford to be on Part D prescription coverage because of my costly injectible MS drug, it seemed like a logical plan to just forego the Medicare Part B coverage and stay with my husband’s company’s extensive group insurance. So this is what we did in 2008, after having to keep the Medicare Part B coverage for a month or two until the lengthy processing could remove me from their list. When I was officially removed, we figured I was in the clear and I’d save $100/month for my Roth IRA contributions. And my husband’s insurance was pricey but very thorough, so there was no need (in our minds) for me to have dual coverage. Case closed? Hardly.

In December of 2009, I had a visit to a satellite emergency room that was a part of our larger local hospital system. When registering I learned that my insurance company knew I was Medicare-eligible. I was asked to submit my Medicare card and even though I no longer carried Part B coverage, I had kept the Part A freebie (why drop free coverage, we thought) so maybe this was considered a “hospitalization” claim.  In a few weeks I received this claim, unpaid, from my insurance company with questioning about “coordination of medical coverage.” I wrote back explaining that I had no Part B coverage, only Part A. Soon after I received the bill again from the hospital with no Medicare payment and a partial insurance company payment. I was supposed to pay the remainder— about $600—- out-of-pocket.  I already knew my insurance provider was supposed to pay the bill and I would only be left with a $50 ER visit copay. What was going on??  I was beginning to feel that this was no Part A claim, but a misunderstanding over a Part B claim.

I phoned my provider and asked why I was being billed for an out-patient ER visit  that didn’t fall under Part A coverage. I reminded them that I had no Part B coverage and that they should resubmit the bill because I had always had just a $50 ER copay in the past.  I was told then and there that I would now be responsible for any “Medicare-eligible” portions of Parts A or B claims, since I was eligible for Medicare, and that the insurance company would “carve out” this amount from their payments. Basically my insurance provider wanted me on Medicare so that Medicare would be my primary and then they would not have to pay the entirety of all my claims.  I was livid and I told them that nowhere in their coverage material (neither in print nor online) was any of this mentioned. They responded that they would send me a letter with all of this information for my convenience. They could not provide any places where this information was made viewable to consumers. I was even more livid, but I figured my best option was to opt back into both Medicare Parts A and B.

Around the same time I received a bill from a care provider that I believed had been payed by my insurance in the summer of 2008.  When I phoned the provider about this, they explained that my insurance company was now renegging on this bill due to what they believed Medicare was responsible for. And since I was technically covered for a brief period by Medicare Part B right after my settlement, the bill was submittable to Medicare.  But instead of my insurance company sending a bill to Medicare after the fact, they simply withheld payment to that provider for a similar charge on someone else’s bill. So no proof that the payment was being rescinded, but an angry provider who now was billing me for their own loss. I was fuming. I was able to get the provider to relent with the bill, since they had no proof and I had proof in 2008 that my insurance DID initially pay. A similar bill came to me soon after and this time I had the provider resubmit the old bill to Medicare and have them get payment themselves. But I worried about how many old bills might be overturned in this way as an effort to get Medicare—or more likely ME— to end up paying. UGH.

Present day: I was just reinstated with Medicare Parts A and B, and even though I’m angry that my health insurance is now $110 more/month for the exact same coverage and will likely be complicated by having dual insurance, I suppose I have thwarted thousands of dollars in unnecessary bills that my original insurance company would continue to send me because I am “Medicare-eligible.” I didn’t get out of paying the $600 ER visit, or a separate $225 doctor’s bill, so I’m in the process of getting them off my plate and maybe this insurance fiasco off of my back.

What to Know Before Opting Out of Medicare

If you become eligible for Social Security Disability Insurance (SSDI) or any variation that qualifies you for Medicare, learn first from your insurance provider— if you already have insurance— whether they will “carve out” , “put aside”, or just plain “NOT PAY” a portion of your medical bills that they believe Medicare should pay, whether you are on Medicare Parts A and B or you wish to opt out. Not all companies do this, but when I contacted the billing company for the hospital, the representative seemed to know all about this Medicare-eligible “carve out” situation and further explained it to me.

Of course it’s frustrating to pay for Medicare insurance if you already have perfectly good coverage through private insurance, but when companies do audits to cut costs, they can learn about your Medicare eligibility and refuse to pay for Medicare-eligible services. It happened to me nearly two years after I thought I was in the clear.

Winning a social security disability insurance (SSDI) case can be very difficult, especially if you’re young and not completely incapacitated. Many disability case processors do not know the harrowing effects that multiple sclerosis can have and how fatigue and weakness alone can keep an otherwise motivated person from maintaining a steady, well-paying job. Sometimes it’s necessary to employ a disability lawyer to secure the case. And it is affordable, because reputable lawyers make it this way.

When I found myself going from a full-time, busy health career to a part-time, low-stress library job, I sensed that my multiple sclerosis would become an obstacle from that point forward. My premonition couldn’t have been more on-target: because of my MS, I began to have problems with fatigue and leg weakness that hindered me even at the library. A few years ago I was let go from the library due to MS-related absences, so I applied for social security (my sketchy employment had been a problem since 2003, so I knew it was time to seek some help.) My first application for disability was rejected about five months later, so I called my local MS Society chapter and inquired about disability lawyers.

I phoned and met with the first lawyer the MS Society recommended. He informed me that about 80% of his clients were through the MS Society, and he won about 95% of his cases. I felt very confident. But what made me feel the most secure was his payment policy: he would represent me and actively gather my evidence and and he would receive payment only AFTER he won my case. It was his gamble, not mine. He would receive payment through my accumulated back-pay, either a flat fee or 20% — the lesser of the two. This completely put my mind at ease and we moved forward. My case went on for 2 and a 1/2 years (from my initial application until my court appearance after my second rejection.) I doubt I could have presented as thorough a case to the judge— my lawyer presented full medical and work files with doctors’ and employers’ notes and surveys that he largely obtained himself— and so I was completely grateful to have employed him to represent me. The case dragged on so long that I ended up paying him the flat fee because it was less: between 15-20% of my back-pay.

I have come to note that this is the standard, ethical procedure for disability lawyers. They should not demand any sorts of fees up front— initial consultation or otherwise. The fee schedule is in place to afford middle- and lower-income clients a fair shot at SSDI. Anything else is unethical.

**To find a reputable disability lawyer, contact your local MS organizational chapter (The National MS Society in the United States.)

While working at Suite101.com’s health network, I found myself seeking the knowledege of fellow health writer Kathy Quan, a registered nurse with 30+ years of field experience. Kathy answered my questions about Medicare coverage and gave me some direction to find more information elsewhere. She has several websites and has written multiple books about the nursing profession, and her specialty is home health care with the senior and disabled populations. Kathy also disperses information about entering the nursing profession. If you know anyone with spirit and compassion who wants to become a nurse, Kathy is an excellent resource. We desperately need more nurses now and in the coming years. Kathy has a Suite101.com email account for correspondence.