What’s More Paralyzing than Being Paralyzed?

It’s a really interesting question.  One would think that paralysis alone is enough make life challenging, but, ironically, not walking is the least of my challenges.  I’m not quite sure if I’m genetically wired like this, but I always do find the positive side of most situations even in the darkest of circumstances.  However, I’m not infallible and I do struggle just like so many with significant disabilities.

I often read incredible stories folks overcoming seemingly insurmountable challenges, but I don’t frequently read about the day-to-day life of what it takes to overcome these obstacles.  I’m a realist.  I always have been.  While I make the most out of, well, quite awful situations at times that does not mean I don’t feel as though I am Sisyphus rolling up the boulder of the mountain only to have it come toppling down on my head. 

I’m not sure if I’m a glutton for punishment, but I keep pushing the boulder up the hill with the belief that the universe has an odd way of working out even when you can’t see the trees beyond the forest at times.  Keep in mind though, I don’t just wait for things to happen.  I am constantly iterating different approaches in my own life each day.

Back to Paralysis…

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Corporate Wellness and Preventative Care – Not Optional for Success

Before we can dive into Wellness and Preventative Care programs in the corporate world, we have to take a step back into dissecting Diversity, Equity, and Inclusion (DEI) with respect to the different elements of “DEI.”  

It’s quite well-established now that DEI is a foundational component to the success of any business.  There is solid evidence and research that has been conducted to make a strong business case for DEI to increase engagement, productivity, and return on investment.

When I think about DEI, the final element, “Inclusion,” really goes beneath the surface of who we are or the structures in which we exist.  It’s all about what we do.  Inclusion, in a word comes down to behaviors.

One could argue that inclusion truly is the linchpin of DEI.  If you have an inclusive organization, you will naturally attract a more diverse workforce and foster more equitable practices.  Inclusive behaviors can be defined as the “actions that make others feel valued, respected, seen, and heard.”

Belonging

What really brings DEI full circle with the concept of belonging.  I have not reinvented the wheel with these ideas or concepts as there are many books written on this. 

Belonging is that feeling that one’s authentic self is valued, respected, seen, and heard.  It’s a very crux of inclusion and is consequently being added to many DEI acronyms today in the business world.

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A MAJOR VICTORY – CMS proposed to cover SEAT ELEVATION systems in power wheelchairs as a Medicare benefit !!!

February 15, 2023 UPDATE: Public Comments Needed Again to Lock in Decision: www.rise4Access.org by MARCH 17, 2023

CMS released its long-awaited proposed decision to offer Medicare coverage for seat elevation systems in power wheelchairs, for the first time ever. This is a MAJOR VICTORY for the disability community.

Over the last several years it has been such an honor to be part of the ITEM coalition with the most incredible advocates I have ever met. Everyone has worked tirelessly over the years and this is a tremendous step forward, but the work is not yet done. Thank you from the bottom of all of our hearts to all of the wheelchair users, providers, caregivers, advocates, and organizations who submitted comments during the first comment period – your voices clearly made an impact!

​Though this proposal is a huge step forward, our work is not yet done. CMS is now accepting more public comments for the next 30 days to weigh in on their decision, and we need your help to make sure the agency finalizes this as soon as possible. We urge all interested parties to once again SHARE YOUR STORY (www.rise4Access.org ) with CMS and let them know they are making the right decision.

If you’ve any questions please don’t hesitate to reach out to me!

WHAT KEEPS YOU UP AT NIGHT? 

I have been on a story collecting mission.  What’s really behind a story?  What makes a story successful, thought-provoking, empathetic, and above all passionate to move people in a way that they will not soon forget you! 

One of my dreams is to become a Tedx/Ted Speaker and I’ve been soaking up so much information by reading, listening to podcasts, joining speaking associations, taking specific storytelling courses, and watching countless Ted talks.  This is really just a life project of mine that I am so insanely and absolutely above the moon to the stars and back PASSIONATE ABOUT. 

I’m sure it’s not too tricky to figure out if you know me that I’m passionate about disability inclusion in every aspect of our society, the human experience, the workplace, etc.

I’ve been collecting stories from other wheelchair users around the country.  I’m preparing for a very targeted keynote speech and while I was preparing my presentation, I was getting bored just thinking about talking for an hour.  I had too many facts and figures.  An organization can hire me to work on strategic structures, processes, data, etc. However, when I am on stage, I need to inspire any audience to think about a change in perspective.  This will then lead to intent, actions, and most importantly, outcomes!

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Forward with National Association for Community College Entrepreneurship (NACCE) PODCAST

Such an amazing podcast with Dr. Rebecca Corbin, NACCE Pres. & CEO.  This podcast shares stories and lessons of entrepreneurs and entrepreneurial leaders who uplift their communities.  I was so honored to be featured on this amazing podcast to talk about a topic near and dear to my heart — Entrepreneurship.

We dive into so many topics on disability, equity, employment, and entrepreneurship.  

https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5idXp6c3Byb3V0LmNvbS8xNTg5ODE1LnJzcw

OR … Listen on any one of these sites

  1. Apple Podcasts: https://pod.link/1553969705.apple
  2. Spotify: https://pod.link/1553969705.spotify

Here are a few teaser clips for you!

North Carolina Medical Society Association Collaboration

I had the distinct pleasure to present to the Leadership College at the North Carolina Medical Association filled with doctors, legislators, and PA’s.

I spent an hour discussing my personal story, but more than that, talking about the need for disability inclusion as it relates to complex medical needs for those with significant, costly, and complicated medical diagnoses.

I was stunned to learn that most med students in school are not taught about complex diagnoses that require a multi-faceted solution’s for care.

To be fair, so many of our medical professionals are caught in the legal nightmare of malpractice suits and needlessly complicated health insurance policies.

I went through a very specific example where I underwent surgery for cervical cancer that led to a pulmonary embolism, hemorrhaging inside my body, weeks in the ICU doped up on morphine — AND, all because my medical team were not well-versed in spinal cord injury, nor did they talk to one another.

I had the top level neurosurgeons, pulmonologists, cardiologists, and gynecologists on my case, but I suffered. I suffered for nearly a month and almost died twice.

This cannot stand! We need advocates to work cohesively, inclusively, and strategically with top medical professionals in the field to humanize those of us who are the exception to the rule. It’s quite easy to treat high blood pressure or high cholesterol, but quite another to get to the root cause of so many challenging medical conditions.

One of my 2023 goals is to continue to speak to all audiences in the medical field from doctors, PAs, CFOs of hospitals, even folks in the medical reimbursement department to shed light on why they should care about the people behind the piece of paper.

We are human. We need help. We need to work together. Disability doesn’t discriminate and you will all join this club eventually if you have not already.

a Beautiful Partnership

It starts with Awareness and Determination.

On the front of my pro bono advocacy life with respect to health insurance to advance disability inclusion for all …

I am honored to partner with VGM and Associates, the nation’s largest and most comprehensive Member Service-Organization for post-acute healthcare.  Specifically working with their division called US Rehab, a membership network with over 1300 independent complex rehab providers.  

I spent the last month writing an article on the importance of Complex Rehab Technology (think customize power and manual wheelchairs) and the challenges many of us are facing in the industry who use wheelchairs. 

What was very cool is they inserted a video link inside the article with a segment from my time on Capitol Hill in September at our Congressional briefing urging Medicare to reclassify seat elevator’s and power standing wheelchairs as medically necessary.

The next project US Rehab and I are going to tackle is writing a comprehensive guide on how to get a wheelchair approved to be shared with their network over the next 4 months.  A Herculean advocacy effort, but one that needs to be addressed immediately.

The Importance of CRT: From the Perspective of Ali Ingersoll, Ms. Wheelchair America 2023

HEALTH INSURANCE and the “MAFIA”

Let’s think about what health insurance means:

HEALTH = Body and mind

INSURANCE = Protection of body and mind

PROTECTION = Keeping you safe from dangers

There is a cost to everything in life.  Health insurance is no different.  Money talks.

As the Mafia says when you don’t pay them their protection money to save your corner shop before they make you “disappear:”

“IT’S NOT PERSONAL, IT’S BUSINESS”

Sadly, health insurance is no different.  Think about it – when you’re denied a lifesaving cancer treatment because you don’t have the right health plan; money; or advocate behind you; you will get a denial letter stating something along the lines of:

“We regret to inform you, blah blah blah, your cancer treatment was denied due to our corporate medical policy and your health insurance plan not covering this specific treatment.  You have the right to appeal, blah blah blah, we care about your patient rights …”

Translation:

“It’s not personal, it’s business.  You did not have enough money to pay for a top tier medical plan, we have a cheaper alternative that will likely kill you (try that first, but if it doesn’t kill you we may consider your treatment request ), you are such a small percentage of the population that we really don’t care, but we pretend to care.  We’ve got your back if you pay for it.”

Let me reiterate, insurance is NO different to the Mafia.  It’s a sad truth.  It may be a bitter pill to swallow, but that’s, more often than not, in the landscape of health insurance in 2023 in United States of America the reality.

It comes down to Health Insurance Inclusion.  At present, health insurance companies are operating with policies and procedures that are far outdated from decades ago.  Health insurance plans are not created with inclusive policies in mind for those of us with significant, costly, and complex medical requirements.  Further, these policies are not created to sustain so many of us with significant disabilities or healthcare needs with solutions on a lifelong basis.

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2022 – Year in Review – “A Wild Ride”

My father raised me with so many incredible quotes.  Over the course of 2022 and throughout all of my wonderful successes and failures – this one in particular continues to drive me on a daily basis:

“Luck is the Residue of Design”English Poet John Milton (1608 – 1674)

Essentially, things worthwhile generally just don’t happen.  Luck is a fact, but nor should it be a factor.  Good luck is what is left over after intelligence and effort have combined at their best.  Negligence or indifference are usually reviewed from an unlucky seat.  Really, luck can be attributed to planning and hard work, which can take thousands of hours to experience that “Luck.”

The Unknown

Life as a complete quadriplegic is no picnic.  I’m sure anyone you know in a wheelchair will likely tell you the same thing, but that doesn’t mean we have to just accept the limitations accompanying a significant disability.  Yes, we need accommodations, both physical and digital, but were just people.  I know so many folks with seemingly insurmountable challenges and significant disabilities, but most of them don’t seem to let life knock them down.  They just keep getting back up!

I remember one day, in particular, in 2017 when I was sitting at my computer day trading, not successfully I might add that day, and contemplating the macrocosm of my life.  What did I have?  Where was I going?  Was I going to leave a mark on the world?  At the time, I remember thinking “I work, I don’t have any disability network, I’m fighting health insurance companies on my own and not sharing my lessons, and I have just come out of 7 years straight of being in and out of hospitals trying to survive for my life.”  

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