Learning to Self-Advocate in Today’s Medical Jungle

When I joined the ranks of the “invisibly disabled” back in 2010 after sustaining a traumatic brain injury, I never expected to have to work hard for quality, affordable medical care.

I grew up in an age where you simply carried a health insurance card, went to your family doctor, paid a small (if any) co-pay and simply went home after seeing a trusted and familiar family doctor.

Looking back on this time with the clarity that comes only with the passage of years, it’s nothing less than shocking how “big business” medical care has become.

In late 2010, I was struck by a car driven by a teenage driver barely old enough to shave. At the time of my injury, we were covered by what the health insurance industry calls a “catastrophic health plan.” Heavily promoted by the insurance industry as “affordable health care,” it came with one caveat that one never gives much thought to when all are healthy – a $10,000 yearly deductible.

Hit with a bit of a double-whammy as my injury was in November of that year, we had thousands of dollars of uncovered medical debt. Adding a bit more complication to the mix was the fact that a mere six weeks after my accident, our yearly deductible reset to its $10,000 limit again as the calendar turned to 2011.

Like many who enter the world of living as disabled person, my income dropped substantially as a direct result of my accident. My wife Sarah and I found ourselves with mounting medical debt and a sharp decline in income. I had heard for years that excessive medical debt was the leading cause of bankruptcy. But never had we expected this to be part of the life we planned together.

There are lessons we learned during that tough time that can be helpful to others. Of this, I am quite certain.

An MRI was ordered by my neurologist shortly after my accident. This well-intentioned doctor suggested a local facility, near his practice. We knew that our yearly deductible was still not yet met, and that the cost of the MRI would be paid by us directly. We embarked on an MRI shopping trip.

doctor shopping

Suffice to say, MRI shopping was an eye-opening experience. Our insurance company had a list of MRI providers on their website. It fast became a call-list for my wife Sarah as she methodically worked her way through the providers, calling each to inquire about their self-pay rate.

The results were nothing short of astounding. For the exact same MRI test, a high cost of over $4,000.00 was offset by a low of $780.00 – all for virtually the same test on comparable MRI equipment. We had decided early on that a four hour drive for testing was worth saving a couple thousand dollars.

We had even given consideration to driving to Canada as we are only four hours from the Canadian border. This, we knew, would have been an overnight trip. But again, if an overnight trip shaved thousands of dollars off the cost, it was a worthwhile investment of time.

Fate looked kindly upon us. On the lower end of the cost scale was an MRI provider only ten miles from our home.

We continued to walk through the insurance jungle through 2011. Tough choices had to be made. I was directed to get a sleep study by one of my doctors. At several thousand dollars, our choice was to either get the sleep study or pay our home mortgage. The mortgage won that one. In fact, to this day, much of what was recommended by doctors along the way is still out of financial reach. It’s one of those uncomfortable realities that you simply learn to live with.

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David A. Grant
About David A. Grant 7 Articles

David A. Grant is a freelance writer and traumatic brain injury survivor based out of southern New Hampshire.

He is the author of Metamorphosis, Surviving Brain Injury, a book that chronicles in exquisite detail the first year-and-a-half of his new life as a brain injury survivor. David is also a contributing author to Chicken Soup for the Soul, Recovering from Traumatic Brain Injuries.

As a survivor of a cycling accident in 2010, he shares his experience and hope though advocacy work including a public speaking as well as his weekly brain injury blog.

David is a regular contributing writer to Brainline.org, a PBS sponsored website. He is also regular contributing writer to Brain Injury Journey Magazine as well as a columnist in HEADWAY, the Brain Injury Association of New Hampshire’s periodic newsletter.

David is the founder of TBI Hope and Inspiration, a Facebook community with over 10,000 members including survivors, family members, caregivers as well as members of the medical and professional community.