Life Possible with Karen Roy Podcast

Sponsored by Numotion

My dear friend, Karen Roy, was gracious enough to host a beautiful podcast with Billy Warden and myself on our outing where I took Billy for a night on the town. I offered Billy a different perspective on being a wheelchair user by fitting him with a Permobil F3 power wheelchair and taping his hands up to make little “paws” as my hands are as a C6 quadriplegic.

Naturally, I cannot offer any able-bodied person a true experience of what it’s like to be a quadriplegic, but I did have the ability to offer him a perspective shift for a day a few of the challenges many of us wheelchair users and quadriplegics go through on a regular basis.

As Ms. Wheelchair America 2023 I am constantly looking to push boundaries with respect to inclusion, but also focus heavily on changing people’s perspectives in many arenas in life. Karen Roy, Ms. Wheelchair America 2019 was such an inspiration for me running as we shared similar platforms with respect to health insurance, adaptive exercise equipment, and medically necessary equipment.

Accessible Pool Lift for My Community – Pushing Beyond Minimum Accessibility Standards

DONATION LINK: https://helphopelive.org/campaign/20851/

Dearest Friends, Family, and Supporters!

For many of you that know me, as a C6 quadriplegic paralyzed from the chest down in a shallow water diving accident in 2010, swimming is the one activity in my life that reduces the chronic nerve pain throughout my entire body and allows me to get out of my wheelchair to swim independently.

Swimming not only helps with many of the physical secondary complications that arise from being paralyzed, but allows me the dignity, grace, independence to have one activity in my life that is the most freeing experience in my life.

After being humbly crowned Ms. Wheelchair America 2023 in August on the platform of health insurance advocacy I spend nearly 30% of my week giving back to the community to make our society more inclusive in addition to working a full-time job to cover a very expensive disability life for caregivers, health insurance costs, and much more as many of us with disabilities are unfortunately put in the challenging situation to navigate ourselves.

I love what I do and I live by two philosophies in life. Paying it forward and Human Kindness. I was extremely humbled to connect with 21 incredible wheelchair advocates around the country at the Ms. Wheelchair America competition. Each of these extraordinary women work each and every day, as many of us do, to push the limits of minimal accessibility standards within our country to create a more inclusive society for everyone.

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A Completely Different Perspective – Walter Magazine Article

A dear friend of mine writes for many magazines and wrote a beautiful piece over the last several months on my life, but what I think was very different as compared to many profile pieces was a night out on the town with me.

I fitted Billy up for a power wheelchair and taped his hands up as a quadriplegic with little “paws” like mine for a night as we went bouncing around town and dancing at the Dueling Pianos Bar.

In no world would I be able to simulate what it would be like to be a quadriplegic for the day, but at the very least, I wanted Billy to get a different perspective on life for eight hours.

I won’t spoil it because he is such a talented and brilliant writer — you get life from his perspective as an able-bodied person.

He also wrote a beautiful and wacky piece on my life.

Part 1 – New Heights

Part 2: A Night on Wheels

How to Navigate the Health Insurance Appeals Process “Patient-to-Patient” Guide

I am humbled and extremely proud to have parted with National Nonprofit SPINALpedia. I’ve spent the last year writing a detailed guide to helping people navigate the health insurance appeals process with tips and tricks.

Navigating the health insurance approval and denial process can be a winding road filled with roadblocks at every turn, but if you understand where these barriers are placed you can divert around them in order to get to your destination. This will be a living guide and will consistently be added to over time by myself and many others around the country.

This guide is a culmination of my work over the last 10 years after being repeatedly denied medically necessary equipment I needed to not only survive in life, but to thrive. I have fought long and hard battles for equipment such as total hospital electrical beds, shower chairs, seat elevators for power wheelchairs, functional electrical stimulation bikes, pressure relieving mattresses, and more with much success.

My sincere wishes that people do not have to fight as hard as I have had to and please let this guide help you avoid some of the major mistakes I made along the way, and how I navigated multiple approvals with my health insurance company.

https://spinalpedia.com/health-insurance-appeals-process

Dating with a Disability

Thank you Wheel:Life sponsored by Comfort Medical to allow me to get back to my roots to dive into how the Quirky Quad first began with Dating and Disability.

Click Here for Wheel:Life Article

Excerpt:

“The Dating Mindset

Dating – a word loaded with so many emotions and often, a word that evokes the feeling of being utterly overwhelmed.  If you add in dating with a disability, heightened anxiety tends to be the “norm” in our community. 

After I broke my neck in 2010, becoming a C6 quadriplegic, I spent the better part of six years believing dating was a fairytale conceived for the able-bodied population. 

I went through internal struggles living in hospitals for years on end with seemingly insurmountable medical complications and learning to accept my body the way it was. I didn’t see myself as a sexually beautiful human being.  Essentially, I felt as if I was asexual, and I couldn’t fathom the concept of another person finding me sexy because I couldn’t muster up the strength to even look at myself in the mirror for nearly two years. 

When my medical life started to become stable, something very interesting happened to me almost overnight – I decided to take on the Herculean mission of trying to date.  I didn’t know where to start.  Prior to my accident I had no trouble dating.  I simply went to a bar and there were men everywhere.  When I went back to bars in my wheelchair, trying to meet men, I was devastated to realize men were not looking at me as they used to.  I didn’t look any different other than the fact that I was in a wheelchair.  This changed everything for me.

I quickly came to the realization that I was going to have to change how I date.  I spent several weeks researching different online dating websites and decided to take the dive into an unfamiliar world.  I asked many of my friends in wheelchairs what their experiences were like and most responses were quite negative, unfortunately. 

I had a different philosophy – the worst someone can say is no. ….”

Read the rest …

The Pitfalls of being a “Super” Communicator

I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times.  Since I was a child, I have always been “perky” as they say and never had a problem in social settings.  I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.

Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable.  This is what I’m told to my face anyway.  I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.  

I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved.  I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person.  On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.

On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.

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Financial Solutions for Life with Paralysis

Really honored to have worked with Help, Hope, Live, a non-profit national organization dedicated to raising money for medical bills and expenses through crowdfunding.

This is a topic that is certainly not new, nor unfamiliar to many of us with disabilities. It’s so expensive to live with paralysis, especially if you have to pay everything out-of-pocket or if you’re trapped within the governmental system.

I dive into some of the challenges of navigating the financial burdens associated with life as a C6 quadriplegic.

Check out the article here:

“Financial Solutions for Life with Paralysis with Ali Ingersoll”

Adaptive Exercise Equipment Legislation Introduced in North Carolina

This is a super proud advocacy moment for me!

Many of you that know me, know that I spend much of my time battling health insurance companies and helping individuals get the medically necessary durable medical equipment they need to not only survive in life but to thrive.  Over the last two years I’ve taken my mission one step further to focus on having adaptive exercise equipment for long-term wheelchair users put under a “Medical Necessity” Review under Durable Medical equipment. 

Today as it stands, under Medicare and private health insurance companies, any type of exercise equipment is considered a non-covered benefit item.  This means it does not have a code and will not get approved.  Unless you have specific laws in your state, are part of the VA, or have an “in,” you’re not going to have much luck in getting approval. I know … I’ve been fighting for an adaptive rowing machine called the Vitaglide for 2 years — With no luck I might add.  Even after writing a 35 page Letter of Medical Necessity backed up by over 130 peer reviewed journal articles, which took me 4 months to research & write, I was treading water.

Despite my 24 month herculean effort I still failed.

Step 2

I then decided to take my mission to Blue Cross and Blue Shield directly.  Through a series of internal contacts and help from the North Carolina Department of Insurance I started working with multiple policy directors.  I gave speeches, had zoom calls, created videos, and more.  This was a four tedious process trying to make a financial and medical argument for preventative healthcare for adaptive exercise equipment for long-term wheelchair users to be reclassified.  Honestly, this epically failed and several months ago I received a beautiful blow-off letter from Blue Cross and Blue Shield.  No bites.  You can see the attached letter yourself.

Step 3

Have no fear.  I was working behind the scenes with my North Carolina State Senator Jay Chauduri on this very issue.  In May 2020 we finally introduced legislation trying to mandate health insurance companies to put adaptive exercise equipment for long-term wheelchair users under a medical necessity review.  Very proud of this accomplishment.  However, I’m acutely and painfully aware, I might add, the success of this bill is slim to none.  However, this creates a beginning legislative track record for me.  I am now working on different plans over the next nine months to introduce more legislation.

It’s going to be a very long road, I’ve heaved advice from so many around the country, but I’m also kind of a one woman show on this front.  I just keep pushing and pushing and pushing.  I’m ridiculously determined, pleasantly persistent, and will continue down this road is long as there is someone to listen to me.

I simply won’t stop.  I don’t know how to give up.  I never have.  As Winston Churchill famously quoted “The Definition of Success is Moving from Failure to Failure without Lack of Enthusiasm.”  I live by this quote on a daily basis living with a long-term severe physical disability.

Change can start with one person.  You may not be able to affect national change by yourself, but you can ignite that spark in others, create a movement, and while you may not accomplish what you would like to in a year or two or 10 — I have no doubt I will ignite a spark in the younger generations to continue my work for many years to come!

Simply Open Awards

I am consulting with a beautiful organization called Open Inclusion where I am the Lead in the United States.  Open is an organization run for and by people with disabilities where we work with large brands to make products and services more accessible through different paid research opportunities.  We are also working on a brand-new project where we partnered with the freelance organization, Fiverr, where we are working with people with disabilities to help them become their own freelancers.  So many amazing things in the advancement of inclusion!

We are also working on an incredible competition called the Simply Open Awards where people with disabilities can submit a two minute video showcasing a simple and elegant solution or ”hack” that has made their lives better.  These solutions will be shared with the world, so that we can showcase how we come up with innovative solutions to make our lives just a little bit easier.

Collaborating with the Christopher Reeve Foundation we hosted a webinar on what the Simply Open Awards are all about.  If you have a disability, or a loved one of someone with a disability, a carer, a friend, etc. you can also submit a two minute video. 

Winners will win a few thousand dollars and have the chance to go to an all-inclusive paid trip to the Zero Project Conference in Geneva in 2023!

Thank you Christopher Reeve for such an awesome webinar:

Check out my Accessible Solution:

Voluntary Hostage Situation

This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.

I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.

Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.

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