Wednesday, November 9, 2011

My Disability Status

This is the internationally recognized symbol ...
(Photo credit: Wikipedia)
In the United States there is a progression of steps that one must go through to fully transition from a healthy worker to a disabled non-worker with benefits. In my case I was fortunate enough to have private disability insurance through my employer in addition to government disability insurance (Social Security).

In May of 2009 I stopped working and began the process of applying for both of these programs. Despite the horror stories I had heard, I qualified without difficulty. That was a mixed blessing. I certainly dreaded an ugly appeals process and maybe even being required to return to the workforce with my tail between my legs. But getting so easily approved was confirmation that I was, well, a hurting unit. That was the mixed blessing part. I wrote about my initial disability approvals here.

My private disability insurance is two-tiered. For the initial 2.5 year period I only needed to establish that I could no longer perform my current occupation. After the 2.5 year period, which ends this month, I would be required to meet a higher standard. I needed to prove that I could no longer perform any occupation for which I was qualified. This summer, well ahead of the deadline, my private disability insurance company buried me with a mountain of paperwork that my doctors and I needed to dig out from underneath.

We completed our documents, sent them in, crossed our fingers, and held our breath. A few short weeks later, we get the "good news" that I am so disabled that I can't perform any occupation. As such, the insurance company is going to provide me with a monthly stipend until I'm 65 years old. Unless I get better, which is almost certainly not going to happen, this portion of my income will be the status quo for the next 17 years.

The other milestone that occurred 2.5 years after my last day of work, rounded off to November 1 of this year, is that I now qualify for Medicare, which is the public sector insurance most closely associated with elderly people in the United States, but also available to disabled people. So now I have low-cost medical insurance through the federal government. Not bad.

In terms of coverage, Medicare is very similar what I've always had through my employer, with one exception. My old insurance would only pay $3000 toward a power wheelchair, which is a ridiculously small amount. Therefore, my inside-the-home wheelchair, as opposed to my iBot which is primarily my outside-of-the-home wheelchair, is a very basic unit without many of the features that full-time wheelchair users should have. Now, with Medicare, I can own a power wheelchair that will in fact meet the needs of someone who spends 16 hours a day, seven days a week in a seated position. I just began that approval process, and I'm expecting a shiny, new wheelchair for Christmas (give or take a couple of weeks).

There is one disconcerting aspect of Medicare that I'd like to address here. As I explained above, there is a waiting period of 2.5 years after you stop working due to disability until Medicare kicks in. That was an inconvenience for me, but I was able to bridge the gap because Kim has private, family medical insurance available to us through her employer.

However, what if I had been the sole employed member of our family? What if Kim was a stay-at-home mom? What would we have done? This 2.5 year waiting period is something that I just cannot get my arms around. If someone goes on disability, it is almost certainly because they have a severe medical condition that requires significant, urgent, and expensive care. Yet, if the individual is no longer employed, which he isn't if he is going on disability, then he has no affordable, private medical insurance and he has no public medical insurance. This is just crazy!

I have a friend, let's call her Jill, who has progressive MS and is the only member of her family with medical insurance available through her employer. By all rights she should no longer be working. Continued employment can't be good for her advanced MS. Yet she feels she has no choice, because if she goes on disability then there will be no medical insurance for herself for 2.5 years, and no medical insurance at all for her husband and children. This is just crazy!

Now that I have my permanent, private disability insurance approved, and now that I have Social Security income and Medicare, my situation appears stable until I reach age 65. At that point I will lose my private disability insurance, but Social Security and Medicare will stay with me until I die, hopefully at a ripe old age, and hopefully cured of MS (ha, ha, good one Mitch).

I may be overly optimistic. Given the budget cuts that are being considered by our federal and state governments, I could very well see my public sector benefits erode over time. But I have a suggestion. Let's find ways to balance our budgets that don't further disadvantage the most vulnerable members of our society. Wouldn't that be nice?
Enhanced by Zemanta


  1. Funny, I wrote that very same thing to my Senator, Patty Murray, whose father died of complications associated with MS. Our country's view of a Health System is ... well, in a word, Republican. Take care of yourselves, peoples.

  2. Mitch, the situation you described is me to a TEE! I have PPMS, on disability and am eligible for Medicare in March (the end of my 2.5 yrs). My husband (who owns his own business and works from home and suffers from Crohns Disease))and I were insured through my employer. I was laid off in 2009 and we were covered through Cobra until November of last year. When Cobra ended there was no way we could afford coverage. I have been on pins and needles since then waiting for my coverage to begin. Luckily, we have a family doctor who accepts cash for office visits at discounted rates.

    I applied for SS Disability and was approved within one month. As I mentioned, my husband works from home and is my caretaker. I have only a manual wheelchair and am looking forward to a power chair so I will have more autonomy.
    I struggle to keep my spirits up and my worry down.

    Next year our youngest will graduate college, I will be on Medicare, we will sell our family home, relocate to an area where the taxes and cost of living are lower and get my husband coverage.

    If anyone stepped into our shoes for even a month, I guarantee there is no way they would support the Republican agenda.

  3. I'm in pretty much the same situation you are, Mitch. Since I had to retire, trying to patch together some kind of insurance coverage for everybody in the family has been a real adventure. My partner lost one job, but managed to find another. Our daughter is a college student, so we could buy her coverage through the University. I finally become eligible for Medicare next month. Between that, and SSDI, and a long-term disability benefit from my previous employer, I know I'm better off than a lot of people.

    I imagine the seemingly interminable waiting period for Medicare eligibility is there for the same reason as the "doughnut hole" in prescription drug coverage. It would just cost too much to do otherwise. Unlike healthy people who become eligible for Medicare at age 65, people who get Medicare because they're disabled are likely to be pretty darned expensive. Lucky us, eh?

  4. Mitch, Thanks for this topic. I am new to the Disability Ins. thing, but I can tell you its a nail biter for us. (private insurance stage) So far, so good. Please be careful about the messages about healing or not you send yourself. The brain is a powerful mechanism. Wishing you the best.

  5. I was diagnosed with PPMS in NOV 2011. I am a public high school teacher and use a scooter all day. I use a wheelchair around town. Some days I can barely type enough to sign in to my computer to take attendance. Unfortunately, I am the only fully employed person in the house. I don't feel like I can even consider disability because of the insurance issues. My husband takes me to work and the kids to school each day, goes to his part time job, then picks us all up and takes care of our evenings. Any suggestions for making our situation better?

  6. Seymour, see my response here: