United Spinal Association – Advocacy Live Podcast

Incredibly honored to be invited by United Spinal Advocacy Live with Annie Streit to be a returning guest to discuss my work as Ms. Wheelchair America, my work on promoting disability employment with Open Inclusion, and ongoing health insurance advocacy efforts.

We had such a wonderful interactive chat and a huge thank you Annie!

United Spinal is a second family to me and love working with so many incredible people in this disability space.

Watch on Facebook: https://www.facebook.com/UnitedSpinalAssociationAdvocacyNetwork/videos/877624949791785

Watch on LinkedIn: https://www.linkedin.com/video/event/urn:li:ugcPost:6984147721905483776/

PARTNERSHIP WITH NORTH CAROLINA STATE TREASURER — Dale Folwell

I am incredibly honored to be partnering with Treasurer Folwell and his entire team on an incredibly important non-partisan disability issue regarding raising the age of ABLE accounts.

Working with News Team at WRAL

I attended the famous North Carolina State Fair where I worked with the treasurer’s entire team to spread Awareness on this issue and even got to sneak in a turkey leg! So elegant with the crown 😎

The Treasurer and I will be hosting a video event together in December next!

WHAT IS AN ABLE ACCOUNT & WHY DOES IT MATTER TO PEOPLE WITH DISABILITIES?

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REAL Costs for Private Health Insurance – You May Want to Sit Down for This One!

I spent some time diving into how expensive it is to be paralyzed, but I wanted to take some time to dissect some of the true costs in the private health insurance market. 

Many with significant mobility impairments are in the boat of being tied to government benefits such as Medicare and Medicaid.  Unfortunately, I do not fall into this category of qualifying for such government aid as I make too much money in my life.  At first glance, many might think this is advantageous because I do make a decent living, but when you break down life costs in addition to health insurance costs when I am paying for every single dollar out-of-pocket – life does not appear as quite as rosy.

This puts many with disabilities in quite a conundrum.  Do you take the leap in life to work a full-time job and give up your government benefits when on any given day a medical emergency can arise or life with a disability can simply take you by surprise to simply knock you out of the game?  

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Ms. Wheelchair America 2023 Life – 1 Month Later

It’s been about a month since I was humbly crowned Ms. Wheelchair America 2023.  I’m still reminiscing on the incredible journey that led me to spending an entire week with, at the time, 21 of my competitors, but who are now all great friends.  When I was driving to the competition all I could think about was making sure I maintain my game face because, after all, this is a competition.

Unbeknownst to me at the time, 7 days later I left the competition feeling incredibly humbled and honored to have spent a week with such amazing women around the country who are all engaged in advocacy projects with the mission of making the world just a little bit more inclusive. 

I know I took home the title, and I plan to advocate on behalf everyone with disabilities for years to come, but the competition really was about camaraderie.  I built relationships with women in such a short period of time that I know will last a lifetime.  It’s an experience that profoundly changes you from within.

On that note, I spent the first week after the competition trying to garner as much media attention as I could on what Ms. Wheelchair America stands for.  I then proceeded to critically think about how to spend the next 365 days of my life in order to affect the greatest amount of change with the title.  I spent hours sitting out by the little stream in my community pondering on the best use of my time.  I have a year of travel, speaking engagements, and advocacy partnerships already underway.

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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

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