MS Strength

I just came back from dropping my Medicare parts A and B coverage. I stopped in at my local social security office and opted out. Here’s why:

• My husband has us covered under his small (less than 35 employees) company coverage, and even though it socks us with an almost $800 monthly premium (combined), it doesn’t cover dental or vision expenses, and it has a $30 copay for all medical visits, it DOES cover my Betaseron ($2k/month) in full, so there’s no copay.

• I investigated Medicare’s coverage. Part A covers hospitalization, and it is similar in coverage to Bill’s company plan (and free with part B), but I have some issues with Part B, Medicare’s medical coverage. There is approximately a $97 premium each month (fine) and a $135 yearly deductible (again, fine.) But after the deductible, Medicare recipients pay 20% copayments on many medical costs. Even on Xrays/ MRIs. So routine MRIs, something that multiple sclerosis patients see as the norm, could end up costing about $4k a year or more, with a patient copayment of $800. Bill’s small company insurance copayment: $30/ per visit x 2 visits = $60. Just the crazy cost for MRIs put up a red flag for me.

• Next, I learned about Medicare Part D, which I am not automatically enrolled in and must elect. My father warned me about this prescription plan. He and my mom, who made modest livings as public school teachers, really lucked out in their retirement. They both have solid pensions and my father’s good health coverage (paid for by 25+ years of work as a guidance counselor.) So they have Medicare and also their own good coverage for prescriptions. Part D is a good plan if the recipient is in general good health and doesn’t have many expensive presciptions. Ironically, this is the coverage for seniors, who tend to acquire more and more health problems as they age, causing them to need more and more expensive prescriptions.

• For a lot of people with MS, good drug coverage is very essential. But when I asked for the best cost for my Betaseron (there are various drug plans under Part D), the best the Medicare rep could come up with was a $250 yearly deductible (fine) and a monthly copay of about $514 until I reached about $4k (after 8 months), and then the copay would go down to approximately $180/month. In the beginning of the year, the whole deductible and higher monthly copay would start again. UGH. Medicare Rx coverage: at least $514/month for most of the year v. Bill’s plan of a flat rate of about $390/month per person for prescription, medical, and hospitalization. And don’t forget the monthly Part B premium of $97. The choice seemed clear. I picked the lesser of the 2 evils.

Here is the part that makes me a little nervous about my decision: I will be getting the monthly Medicare premium back in my social security check, but because I opted out, if my husband somehow loses his job and we don’t have immediate coverage, to get back into Medicare coverage it will cost me another 10% on top of the Medicare $97 monthly premium for every year after I dropped the coverage. So if I find myself needing Medicare in, say, 14 years, I will then pay a monthly premium of about $240+/month for pretty mediocre to bad coverage. That’s not even counting the yearly increase in the original monthly premium. Or the $514+ monthly copays for the Betaseron!

If my husband worked for a larger company (100 employees or more), then I would incur no penalty for dropping and then reinstating Medicare at a later date. Fortunately I can reinstate it when I’m 65 with no penalty. Hopefully something better will come along in the meantime.

I want to add that if you seek the counsel of a disability lawyer, they should not charge you unless they win your case. Then they will charge you a predetermined fee or a percentage of your SSDI lump-sum back pay, usually the lesser of the two. Thankfully, this makes hiring a disability lawyer affordable. I would never have been able to hire one otherwise. The end result is much-needed financial relief and a little more peace of mind, so the investment is well worth it.

I’m writing about this topic because I am once again exasperated by another person’s battle with the Social Security Administration. I recently read a post by Blindbeard (a fellow MS blogger) about her third social security disability insurance rejection. Reminds me of my own battle, which after 2 1/2 years, has finally been won.

I first filed for disability in February of 2006. I had just been layed off from my part-time job with a local library, after various attempts at modifying my hourly schedule, taking unpaid time off, and modifying my amount of bending, reaching, walking, and so on. I was there (both as an employee and a volunteer) for almost 2 years. The reason for my termination was clear: the inability to keep a regular work schedule. At the time of dismissal, I was down to about 15 hours a week. My employer (bless her) gave me a written and signed letter about the reason for termination, which I sent in with my disability application.

I was rejected the first time in July of that year. I heard this was standard, unless the claimant was completely incapacitated or had additional complicating medical conditions. So I contacted my local MS Society chapter and asked them if they knew of any reputable disability lawyers. I called the first one on the list.

My lawyer had us send out the first appeal and new supporting medical information. He told me this process was usually pretty quick, because the appeal would most likely be rejected and we’d have to make a second appeal to go to court. Still, I did not receive the second rejection letter until early 2007. The next step was to file another appeal, which would get us a hearing with a judge. That was filed in March of 2007 and in April I received my letter saying to gather as much medical evidence as possible and wait for the court date. My lawyer contacted any relevant doctors I had seen in the past 3 years (neurologists, primaries, and neuro-opthamologists.) I waited for my letter telling us to appear in court.

Finally, a year later— March of 2008—- I received my letter about appearing before a judge. My lawyer had me get a medical questionnaire filled out and signed by my neurologist. Apparently judges respect signed questionnaires, but not medical records. I did just that, and pestered my neurologist, who is very accommodating, until the questionnaire was in my hands. Basically it indicated that I cannot work a regular (even part-time) schedule outside of the home. Dah.

I’m happy to say that we had our day in court this June. 10 minutes of the judge verifying that I have not had gainful, full-time employment in about 5 years, and have ceased to be able to even work part-time regularly since 2006. He loved that stupid questionnaire! That was all it took, after more than 2 years of struggling.

I have to say that I am still waiting for the benefits to start coming. The judge said it could take 60-90 days. My husband and I are hoping for something in early August. I have had sporadic, at-home work and a little outside work in the past 2 years, and we are completely broke. Our out-of-pocket premiums for our health insurance are now $775/month, and we are in a little bit of debt (again, it could be a lot worse.) My husband doesn’t make a ton at his small company, which he has been at for 2 years. It’s awfully hard to live on one income these days, with staggering gas prices, outrageous mortgage payments, and other basic costs of living. Thankfully, our parents have helped us keep our debt from spiraling out of control.

This is the kicker: a person on social security disability insurance (SSDI) can still make some money on top of their payments with part-time employment. So as a person is going through the whole rejection process and feeling guilt and uncertainty because he or she wants to work, doesn’t want to milk the system, or maybe is able to work a little, after winning and receiving benefits, it turns out it’s still okay to do a little work. Weren’t they just telling us we’re capable of work so we don’t qualify for disability?…….