What Is A Paralysis Funding Gap?

Posted by Michael Collins in Life After Paralysis on August 03, 2015 # Health

The date of my spinal cord injury in January, 1988 began like many other weekend days. I usually practiced or competed in amateur athletics of different types on weekends, and on that fateful Sunday afternoon it was a dual slalom ski race. Things went rapidly downhill, like the speed and direction I had been traveling, when I tripped after crossing the finish line. It is not uncommon to fall while ski racing, as even the professionals do that on a regular basis. However, I was in the runout area below the finish line when I fell and unfortunately it was located directly above a ski lift tower with a base that was not properly protected.

There was an audible crunch when the back of my neck collided with the metal ladder on the tower as I skidded into it. I didn't know it at the time, but that was the sound of three cervical vertebrae being fractured. During the following 20 minutes I wasn't worried much about that noise, as I was wrapped up in netting and struggling to breathe. I thought it was because my ski goggles had slipped down over my nose and mouth but it was actually because everything from my chest down was paralyzed, including my diaphragm. That's what a C5 injury does to us.

During the next six months in the rehab hospital I learned much about my body, which did not appreciate being paralyzed and found unique ways to let me know that every day. Staff, all specialists, educated me about such items as catheters, phlebotomy, radiology, bowel programs, bladder care, blood clots, sepsis, autonomic dysreflexia, range of motion, blood pressure, spasticity, contractures, decubitis ulcers, the meanings and roles of OT, PT and TR, as well as the many intricacies or unknowns related to spinal cord injury.

Important items that were left off that curriculum included the real lack of affordable, accessible housing; recruitment, screening and hiring of personal care attendants; how to deal with minimal public transportation options that were available at the time and--most importantly--the stark financial implications of being paralyzed.

As I began to get resettled in the community again, it didn't take long to run up against the realities that occur when insurers deny payment for items needed for independent living, or just to maintain one's health. One of the first things denied was a shower commode chair, which was an essential item like the one that I used daily during the more than six months that I was hospitalized. Fortunately I still had some "pre-injury" money in my bank account, so was able to pay the $900 needed for the chair.

During the past 27 years I have needed to purchase several "big ticket" items that were not paid for by my insurance, even after Medicare took over when I retired. Those items included an adjustable bed, a portable patient lift, replacement shower chairs, a special shower/commode chair for traveling, a ceiling-mounted tracked patient lift system, two wheelchair vans (the first one lasted for 137,000 miles), subsequent modifications to both vans so I could drive them and accessibility remodeling of five different homes or apartments where I have lived.

One of the items that has had a real financial impact was more than 50,000 hours of attendant care which has cost me about $750,000. If I had my choice, I would like to have that back as it would buy me the home of my dreams along with a nice vehicle to go with it.

Smaller items used for maintaining my health are not covered, even though I have been advised that I should use them on a regular basis; these include latex gloves for my attendants, vitamins, generic non-prescription medications (like allergens and antacids), and even laxatives. Those costs mount up.

Even when insurance does pay for an item, like durable medical supplies related to incontinence, they only cover 80% of the cost. The remaining 20% co-pay comes out of my pocket--and that can be several thousand dollars when it comes to a replacement power wheelchair or an expensive medical test. I paid a premium for private health insurance for many years, and now pay a Medicare premium as well as the cost of a Medicare advantage plan. That makes me more fortunate than many of my peers, because I can afford such premiums, and I have no idea how survival would be possible without insurance of some type.

Estimates (from back in 2011) that the cost of living with a cervical spinal cord injury exceeded $110,000 per year likely understated the actual costs involved, especially if independent living is the goal. The Seattle Times had a story in yesterday's paper about the costs of getting older. For everyone, not just those who are paralyzed, the median annual cost for a U.S. nursing home stay is $91,000. One year of visits from home health aides averages $45,760. Even without adding in disability-related costs, the financial needs of those who are aging far exceeds the earning capacity of the majority of people. The hordes of "baby boomers" are about to confront that reality and many will be unprepared for the costs that they will face.

At one time I encouraged people with new disabilities to obtain a higher education and seek employment so that they could be independent and accumulate funds for later in life. I didn't realize that following that path might permanently disqualify someone from receiving many of the benefits enjoyed by our peers who did not work. The pensions, retirement accounts and savings meant to allow us to enjoy our golden years could be the very factors that prevent us from doing so.

I no longer "look down" upon those who do not work. I have watched highly qualified people with advanced degrees and impeccable employment backgrounds who are also disabled search in vain for any job that might support them. Many disability-related benefits and programs serve mainly as disincentives to employment.

Work is good for the soul, and the ability to contribute to society is necessary for self esteem. Unfortunately it can't begin to fill in the paralysis "funding gap."

© 2015 Michael Collins | Like Mike on Facebook

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.