The creeping paralysis that I’ve endured over the past 12 years has taken its toll. But no loss was more acute than being considered fully employed one day and completely and permanently disabled the next. Of course, that is not how chronic diseases really behave, but it is how disability policy does. My transition out of the workplace should have been a slow, gentle process. Maybe I’ll write about that in more detail later, but it’s not the primary objective of this blog post.
Other than its somewhat arbitrary date, my transition into disability retirement couldn’t have gone better. I had several things in my favor. First, I worked for a company which offered long-term disability insurance as part of their benefits package. Therefore, I now receive more income than people who rely solely on Social Security disability checks.
Second, Kim has a secure job with a good salary. This means that we still have enough combined income to maintain a comfortable lifestyle and enjoy a certain amount of financial security.
Third, Kim’s medical insurance policy covered me for the 2½ year waiting period between the time I stopped working and the time I qualified for Medicare. That’s right – when you become so sick that you can no longer work, and you subsequently lose your medical insurance which was provided by your employer, Medicare waits 2½ years before stepping in. That makes a lot of sense.
I am, however, the exception to the rule. Most people who take disability retirement because of multiple sclerosis or similar chronic conditions are not as fortunate. Many such individuals find themselves without affordable medical coverage for the first 2½ years and without adequate income for the rest of their lives. And these hardships occur when things have never been worse, medically or financially. Their cost of living has skyrocketed because this is such an expensive disease to live with. It’s not only the costs of doctors, hospitals, and medicines. There are also the expenses associated with mobility devices such as canes, scooters, wheelchairs, and vans, not to mention home health care workers, roll-in showers, ramps, and grab bars, if not an entirely new house.
For a well written, first-hand account of what I describe above, please read my friend Muff’s blog post here.
No other developed nation treats their most disadvantaged citizens so callously. It’s no way for people to live in the 21st century, in the world’s richest country. We are better than this.
I believe that most people aren’t even aware of how weak our social safety net is for people with chronic diseases. I certainly wasn’t until I became well-versed in these issues out of necessity about four years ago.
In the current political environment, government austerity measures seem inevitable. We are only debating the severity of the cuts, and the new levels of acceptable misery. I would argue, however, that the question regarding benefits for disabled individuals shouldn’t be, “How much less can we get away with doing?” The question should be, “How can we do more?”


