Here’s how a Michigan family’s journey to care for their paraplegic wife and mother has led to life changing decisions and first-time discussions in 2020.
FLINT, MI — It was the phone call we all hope we will never get. It came on a spring day in May 2010.
“Harmony, there’s been an accident.”
It was my dad, Stan, calling me while frantically making the hour drive from work to the hospital.
Our family’s life had just changed forever.
The Day of the Accident
My mom, Sheila, had been working outside in the yard. She was on a ladder trimming trees when she lost her balance and fell 30 feet, landing on her back. She slipped into unconsciousness.
Her injuries were too severe for the local hospital, so she was transported by helicopter to Detroit Receiving Hospital, where she would stay for six weeks. She then spent another six weeks at the Rehabilitation Institute of Michigan.
But she lived. We didn’t lose our mom.
She had, however, sustained life-altering injuries. The doctors described it as her spine exploding when she landed on the ground. My mom was permanently paralyzed from the waist down.
She was paraplegic. She would be at the mercy of the healthcare system for the rest of her life.
My mom had been one of the most physically active people I knew.
She had been one of the first women journeymen bricklayers in Michigan, helping create the Detroit VA hospital and the Charles H. Wright Museum of African American History. She cut down trees and climbed ladders all the time. This time should not have been any different.
But in a split second, everything went horribly wrong.
A Healthcare Divide Between Those Who Have and Those Who Do Not
There were so many things to worry about after the accident, but the one thing my parents did not have to stress about was health insurance.
My dad thankfully had employer-based health insurance that covered most of over $1 million in costs that first year.
In the 10 years since the accident, the health-insurance journey hasn’t always been as simple. And now, my mom faces a turning point.
In 2010, just months before my mom’s accident, the Affordable Care Act (commonly referred to as the ACA or Obamacare) had passed and given millions of families access to health care that they didn’t have before.
My parents had not paid much attention; they were lifelong Republicans. Rather than being against Obamacare, they just did not really view it as an issue that affected them.
Paraplegia is not a simple health condition, though. It brings along with it a host of other issues, including the need for wheelchairs, ramps, and other modifications of your home; the need for a home healthcare assistant to help with daily living tasks like using the bathroom and showering; and the need for wheelchair-accessible transportation.
Other than the wheelchair, none of these things were covered by health insurance. They were “non-covered expenses” paid for by my parents, who were able to afford it.
But now my mom often thinks of the people who did not have the resources she did, like the woman she met in rehab who had a routine hysterectomy and came out of surgery paralyzed: She did not have anyone to care for her or the money to hire someone, so she was forced to live in a state-funded nursing home.
My mom says she often sees elderly people at her doctor’s office, struggling to get around in their manual chairs. They have shared with her how much they wish they could afford, or insurance would approve, an electric wheelchair.
Even with her paralysis, she sees not everyone is as fortunate.
The First Solution in 50 Years
Health insurance in the US is extraordinarily complicated and comes with out-of-pocket costs and many uncovered expenses. And that is only for those who have it.
For those who don’t have health insurance or enough to cover their medical expenses, there’s one hope: lifelong good health and no catastrophic injuries or illnesses.
The ACA was the first significant healthcare legislation in almost 50 years to try and improve this situation for Americans.
It helped families by prohibiting insurance companies from denying coverage due to pre-existing conditions, banning caps on essential insurance coverage, and providing a yearly maximum families would have to pay out-of-pocket.
President Donald Trump is fighting hard to repeal the ACA.
He campaigns to end it and as recently as June of this year, his administration argued to the Supreme Court that “… the ACA must fall.” The Supreme Court is expected to announce their decision in early November.
On the other hand, Democratic presidential nominee Joe Biden is an ardent advocate of the ACA. He acknowledges it is not a perfect system, but believes the solution is to improve it, not scrap it with no backup for families.
A Turning Point for My Family
Recently, I sat with my parents and we talked about their healthcare journey.
After 48 years of working in the manufacturing industry, my dad went on Medicare, which he describes as “outstanding.”
My mom, 63, does not qualify for Medicare yet, but her paraplegia comes with many additional illnesses: frequent bedsores, wounds, and infections that require extensive and ongoing treatment.
Her medical bills in any given year cost hundreds of thousands.
Next year, when her COBRA coverage from my dad’s employer ends, she will have to shop for new, more expensive insurance coverage. But, if the ACA was repealed, would they even be able to find it?
I ask my mom her feelings about potentially being one of the more than 100 million Americans denied coverage because of her pre-existing conditions if the ACA is repealed. She responds with one word: “Panicked.”
It’s the ACA that also keeps a cap on medical expenses families face.
“It would wipe us out financially,” my dad says about repealing the ACA. “Everything would go towards our healthcare costs. We couldn’t live.”
Towards the end of our conversation, I approached the topic of health care and politics.
“I know you have both identified as Republicans for a long time,” I say, treading softly. “But Mom, you are supporting Biden. And Dad, you are strongly considering it. Do you think this is one of the reasons you may have changed your views?”
My mom was silent as my dad talks about balancing his conservative values with his disappointment in President Trump. On many issues, he thinks Biden’s positions make more sense.
My mom finally chimes in.
Her voice carries the definitiveness of someone who has gone through a life-changing event—someone who has seen the difference that laws and policies make:
“I’m a Democrat now. I am voting for Biden,” she declares. “And, yes, it is because of health care.”