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

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:

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

You work so hard for so long on a specific project only to have it practically blow up in your face.  I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.

I have tried to play nice, it did not work, and that’s okay.  I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles.  I always try the path of least resistance first, this does not always work out, but it does not deter me either.

If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity.  It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts.  What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come.  This mission is going to be measured in many years, not months.

Fortunately, my spinal cord injury has taught me the definition of extreme patience.  For this I am thankful!

I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me.  However, I will start rolling the boulder back up the mountain in real time!  I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.

Check out the Article on Push Living Magazine:

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT