Disability 101 – A Story of Stress, Patience and Process

I have been to the cliff of bankruptcy because of illness twice, looked over and managed to find a way to step back from it. The first time, was in January 2001; the second was in January, 2008 and we’re not out of the woods yet.

Anyone who has received a physical disability in the military – or who cares for someone who has – needs to talk with other women who have been through it. Dr. Nancy has encouraged me to tell my story here in hopes of helping other women handle the stress—and the system.

A study recently released in the American Journal of Medicine reported that 62% of all bankruptcies filed in 2007 were linked to medical expenses.  This figure increased by 20% since 2001. This was reported in a number of publications including the National Coalition of Health Care. No matter what your stance on health care reform and no matter how good your health insurance, serious illness can break you financially if you’re not prepared for a massive emergency. And, unless you have unlimited wealth, few of us are prepared for everything.

Short version of a long story: In July, 2000, my husband, John, awoke one morning and could no longer walk without excruciating pain. It followed that he could no longer work as a U.S. postal clerk He received no more pay checks and we embarked on a long, rigorous, expensive and confusing maze through the medical system.

Finally, in October, we tried a new internist, who communicated the diagnosis in a way we could understand. It was “spinal stenosis,” a narrowing of the vertebrae usually caused by one or more injuries and possibly aggravated by activities of living. I have only a lay person’s knowledge, but the symptoms are evident. My husband suffers from severe peripheral neuropathy (nerve damage) that feels like nails are being hammered into his feet at one point and complete numbness at another. Muscle spasms and debilitating cramps are more frequent than in most people. By February, 2001, when we filed our first disability claim, he could barely grip the pen to sign the forms at the Human Resources office at the post office where he used to work.

In March 2001, he received his first spinal lamenectomy (back surgery) in which the surgeon removed portions of Cervical 3-Cervical 7 to relieve pressure around the spinal cord and prevent paralysis. This surgery was successful, although John still drops things frequently and suffers from numbness and cramping in his hands and arms. In June, he received a second lamenectomy to relieve pressure around the nerves going to his lower extremities. The surgeon said that the bones were crumbling and he could not remove as much as he wanted to. John’s current doctor refers to him as “a victim of a failed back surgery.”

In April 2001, John received his disability award from the US Postal Service. From July of 2000 to April of 2001, we had no stable income. I hustled writing and pursued the hand-crafted jewelry business that we had begun together, sent cashiers checks by certified mail to keep our Federal Employees Health Insurance active and managed to keep everything afloat until January, 2001. We were broke and we had no immediate income.

Our “nest egg” was an extra retirement fund we contributed to that had been growing at 27% in the stock market. We cashed that in just before the market crashed that year. But we had to pay the previously deferred income taxes and a penalty until we filed a letter stating that we were withdrawing it “under duress.” The taxes were refunded as well.

We continued to limp along financially until June of that year, when John was granted an increase in his VA disability. With the VA income, he was receiving almost as much as he did working full time. I set up easy payment plans with the hospitals and doctors and, although he was still in excruciating pain, we had reached an equilibrium.

John’s original injury that caused his spinal stenosis happened while he was in the Army during the Viet Nam War. To receive disability from the VA, you have to prove that the incident causing the disability happened during your service. He has emergency room records that report the treatment he received for these injuries.

Now, 40 years later, his health is severely compromised. He’s on pain therapy, but has been declining and easily gets every infection that hits the general population. In January, 2008, he had 5 teeth removed and nearly died with the infection. The oral surgeon didn’t understand his condition and didn’t prescribe strong enough antibiotics.

By May, 2008, we had racked up about $5,000 in medical bills and I was back on easy-payment plans with hospitals and doctors. Maybe I’m just lucky. But when I receive these charges and know that I cannot pay them on time, I immediately call the office and ask to set up a payment plan. I have never been refused. And I have never been charged interest. I have heard that if they are carried over 12 months, hospitals will begin to charge interest, but I think this may depend on the individual hospital or doctor’s office. I also think that it helps to take a pro-active approach to paying this debt. Announce up front that you’re not a dead-beat and you’ll get a lot more cooperation.

In July, 2008, we helped some friends move. We’d barely begun and one of our friends pushed John though the house, ordering him to go sit out in the truck and wait for us to get things loaded. He was pale, clammy and looked like he would faint. His internist thought he spotted the problem as a side-effect of one of his medications. The doctor discontinued that particular medicine, but John still suffers from that symptom after only a few minutes of work.

So…John could no longer work at all. In August, after he sat out several art fairs where we sold our jewelry, I announced, “We must increase our disability income. This is too hard on me to do alone.” In September, we visited the Disabled Veterans representatives (DAV) to ask for help with increased VA disability. John’s internist wrote a 3 page letter describing his condition and how it has worsened in the three years since he began seeing him. The DAV rep submitted that letter and the request for increased disability to the VA. That was almost a year ago. We began a long correspondence with the VA. In November, 2008, John was examined for two medical conditions having to do with his disability. He has received requests for more information, which he answered. And we waited.

In January, 2009, we were broke again with about half the income we needed to pay the bills that had been building through the worsening economy, John’s increasing medical care and decreasing ability to work. We were privileged to have some friends and family to offer a personal “bail-out.” I hung out my writing shingle again and was fortunate to find work. But our disability income remains the same and we wait.

Yesterday, we received a notice (after about 3 months of silence) announcing another medical examination. This one seems to be a repeat of one of the exams last November, except that it will be done at a VA medical center. Last November, the VA was outsourcing the exams.  Phone calls asking about this new exam have been fruitless. The DAV rep is clueless. His advice was to do what they say. And we will.

I wish I could draw a happy ending…John gets his requested disability, rests as easily as possible and I go on to write the great American novel. But the fact is that he may get it and he may not or, here’s the really awful possibility, they could decrease his disability after a re-examination of the records. I can’t imagine that happening, but John keeps warning me that we took a risk when we asked for more.

My advice for anyone who is thinking about this path is to keep your records. If you or your loved-one is in the military and something happens (you are injured or witness something horrifying), request the records if there are any, keep a journal, name names of those who can provide corroborating evidence, and keep everything in a safe place. If you’re injured on the job or in some other way, keep those records and get ready to process paper work.

1.   Buy a file box and start organizing:

• one file for medical records (more than one if numerous conditions are involved),

• one file for letters back and forth from the agency you’re requesting disability from

• more files for individual incidents.

2.   Date everything.

3.   Keep copies of everything.

4.   Answer all correspondence

5.   Get a doctor who can communicate and will work with you…not a quack, but a sincere professional who takes “patient care” seriously and knows what she/he is doing.

6.   Become a patient advocate or get one if you are the one who is sick or injured.

People ask me all the time, “How did you manage to get disability without an attorney?” The answer is simple: we were persistent. We followed the rules; we made sure we had evidence for every claim and we didn’t give up. Even if you need the help of an attorney, you’ll still need to keep everything pertaining to your claim organized.

When the topic of disability comes up, someone always tells me about some person who got disability when they had an accident several years ago. Now, that person is well and is a world-traveler or leads some other luxurious life-style, still collecting disability. They are the abusers of the system. And there is a clause in most disability rulings that if your condition is “improved,” you must pay back fraudulent disability payments you received. I also want to know what disability they are receiving. So far, I know of no fortune available unless you’ve been able to sue for damages and won. Most disability is provided as a livable income. You can be comfortable, but not extravagant.

Questions are welcome. I’m glad to clarify and share what little I know.