• Drew Clayborn

Mo' Money Mo' Problems - The Realities Of Paralysis

There are times when I reflect and think about the state of my life, living with paralysis, how I can help others, and right now, it's a sorrowful time. The pursuit of life, independence, healthiness, and happiness seems to be under attack for those in my situation by those who determine what they will and won't pay. The only culprit I can pinpoint is the greed of humanity. I word it that way because I include myself with society and understand the difficulty of money-making decisions. Although, if I asked you to give a quantifiable value to human life, what would you give it? How much is a human life worth? My answer, like many of you, is that there isn't a value to it. At least there shouldn't be. Unfortunately, that's not the case for all entities. 

I realize how extraordinarily blessed I am. Over the last 11 years, I haven't had to face as many difficult decisions that most of those with paralysis face frequently. It's difficult to explain fully, but the best way I can put it is a constant tug-of-war battle between the quantity of life v. quality of life. Most of us have these types of decisions every day, but the magnitude of them varies. Do I go home and make a salad for dinner, or do I stop and grab taco bell? Should I go to the gym, exercise at home, or finish binge-watching Squid Game for the second time? My daily decisions are not far off from these, but the magnitude of the consequences of my choices are. The same goes for everyone else with paralysis, such as mine. I'd say even more so because not everyone has had the resources and support that I've had. 

The most recent noteworthy story is Engracia Figueroa. She died after developing an infection from a pressure sore she suffered after being forced to use a manual wheelchair not fit for her body when United Airlines destroyed her custom-made wheelchair. You can raise many questions as to why all of this occurred; some things are out of our control. The reality for many of us with paralysis is that death can happen rather quickly. Based on a statistic by the world health organization, individuals with spinal cord injuries are 2 to 5 times more likely to die prematurely than those without SCI. With the decisions of what resources are and aren't available to us seemingly out of our hands, we ultimately make a decision. While I'm alive, do I focus my energy, time, and resources on preserving my quantity of life, or do I focus on living, experiencing, and doing something with the time I have here. Based on what I've read about Engracia Figueroa, she chose the latter and ultimately gave her life prematurely because of it. 

Like I said before, I am blessed by the fighting efforts of my dad, my family, and my community to make sure that I haven't had to make those decisions. I've been able to stay completely healthy while also devoting my life to helping others in my situation and also reaching for my personal goals in life. It's an insane rarity that just became even rarer. Right now in Michigan, there is an attack on my way of living. 

To help explain, I need to overview all of my resources and what they've allowed me to do. I have a complete nursing family with me 26 hours a day (including overlap time for transferring me in and out of my chair). They are my hands and feet, helping me do anything that otherwise I would've been doing while also observing, monitoring, and overseeing my health and well-being. With that help, I do over 4 hours of electric Stim Wearable Therapy every night (total cost in the last ten years has been over $100k), which prevents any of my muscles from becoming atrophied. Throughout the day, my nurses help me do any of my therapy that we want to do; Quadriciser ($18k), PEMF Therapy ($2.5k), floating arm exercises ($3k for specialized physical therapist), stomach breathing, tilt table (donated but valued at $2k), and anything else I decide to work on that day. They also clean me and get me dressed every morning. Feed me and prepare my meals (if I'm not going for the easy DoorDash😉). They also help me work, getting everything set up to go on my computer and phone. On top of all of that, they're also the source of my spontaneity. Anything I want to do, hang out with friends, see a movie, go out for dinner, attend concerts, they're my hands, feet, and extra pair of eyes that allow me the freedom to do so. It's the combination of the fantastic family and team of nurses I have, combined with all of the incredible therapies I've been able to purchase over the years, that allows me to live a life that satisfies both quantity and quality of life.

For everything that my fantastic team of 6-8 nurses has to do for me, we know that they are vastly underpaid and underappreciated by those who decide how much they are compensated. Knowing my circumstances, private insurance companies and state programs have to decide how much they'll reimburse for my nursing for how many hours each day. Depending on that reimbursement rate, our nursing agency then has to determine how much they can afford to pay my nurses, what benefits they can provide, and still cover overhead costs while remaining profitable as a company. The reimbursement rate is often only a few dollars higher than a competitive wage for nurses, which is why most staffing companies cannot offer many benefits to their nurses. It's for these trickle-down reasons that we know we must continue to fundraise, supplement, and advocate for my nurses. Otherwise, we couldn't find highly skilled nurses, or we couldn't retain them. We do a lot for our nurses, especially this time of year, but more could be done. We're striving to be in a position to give our nurses things that we know the agency can't, such as paid time off, good insurance so they can stay healthy enough to do the job, assisted savings and 401k, and so forth. 

I give a full breakdown of the financial side of my life for a few reasons. You need to understand how it currently works to understand the magnitude of what's now happening. Also, fellow paralyzed or disabled individuals often ask how I can do everything I do, and I wanted to give them the magnitude of expectations of families and individuals. My dad has navigated these obstacles to provide me with the life he has envisioned for the last 11 years, including taking the role as my last resort, like being with me overnight after working all day, which he's doing right now as I write. Just like any loving father, his ultimate goal is to equip me and prepare me for the day he no longer can be my fallback. This is why our stress levels rise when my independence is threatened. 

Your next question may be, Drew, why is your way of living under attack? Right now, insurance companies and legislation are shifting away from paying for private duty nursing. A giant pool of money is that of MCCA, Michigan Catastrophic Claims Association. A fund created in 1978 for those who suffer catastrophic injuries due to a traffic collision, which happens to be the leading cause of paralysis. For decades, this catastrophic fund provided above and beyond services and resources for people with disabilities. They provide full-time nursing care at a highly competitive reimbursement rate, building individuals an accessible home from the ground up, and much more. And then, as of July 2020, the catastrophic fund has stopped reimbursements completely.

All of a sudden lives mutilated. Patients being left to die. Hundreds of companies with no option but to close their doors. Thousands of people's way of life were destroyed by a group of decision-makers. In an instant, no more nursing help, no more resources, with very little to no explanation or alternatives besides living in a nursing facility. Whether it was the pandemic of 2020 or the recession of 2007, we've seen what the aftermath of drastic lifestyle changes looks like—the most notable being an increased suicide rate. I've heard from friends that people take their own lives rather than sitting in their beds with no one to help care for them, slowly deteriorating. Now the question I've heard becomes, "do I sit here and slowly die, or do I take this handful of pills?" It's not just the MCCA either. I've personally never had the benefits of the catastrophic fund as my injury occurred from a backflip gone wrong. Still, because I'm on a ventilator, we've been able to get insurances to pay for my private duty nursing, PDN. For the last 4 years or so we would be appealing our insurance all year trying to get them to pay for my nurses. It seems insurances are fundamentally moving away from paying for long-term PDN. Although recently, I was fortunate to have Michigan's MiChoice waiver step in to take care of my nursing care but it's at a much lower reimbursement rate.

With that said, I'll ask again, what is a human life worth? For my nursing care alone, at $30 an hour, I'd have to make almost $300,000 a year to pay for it myself. If I ever want to get to where I am no longer looking over my shoulder, worried about what other people decide what my life is worth, I'll need around $5 million. That's our ultimate goal as a family. That's the reality of my situation and many others like me. Meanwhile, when the catastrophic fund was shut down, there were over $26 BILLION in it. Enough for over 8 thousand families to never have to worry about whether or not their loved ones would be cared for after a catastrophic injury. Freedom to focus on both the quality and quantity of their life. Subsequently, while I'm pursuing my ultimate goal, they strip away all of my services if I have more than $2000 in my account. How does that make sense? Making it even more difficult for PWD to join the workforce even though we've seen numerous jobs become remote permanently and technology rapidly evolving. Prime example being metro Detroit native, RockyNoHands, becoming a professional gamer using the same Quadstick I use. For many others, the obstacles would be enough of a deterrent on their own not to work towards a better life. Luckily I've been blessed with the correct information given to me, I have family that I trust to be the trustee on my 3rd party special needs trust, and my parents have started and passed along to me a growing nonprofit. Between those two things, I know that I can get where I want to be. 

This is my reality, my life challenge, and I know that I'm up for it. Our Drew Crew motto, PUSH, pray until something happens, has served us well so far and will keep serving us well. I also know I have a lot of work to do to get there, and I'll be able to help a lot of other people along the way. I love every one of you. Thank you for reading my thoughts. Keep PUSHing. Keep fighting. I know I will. 

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