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!

JOINT CUSTODY (A Multi-Year Settlement Agreement)

Pain.  Chronic pain.  It’s no joke.  It’s debilitating.  It can lead to death.  It can be physically and psychologically crushing to your soul.  Living with physical paralysis, for me, pales in comparison to pain.  If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis.  This is a pretty powerful statement if you think about it.  I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc.  Think about what I am saying. 

This is how debilitating my chronic pain is.  For anyone who lives in chronic pain, your life has been undoubtedly changed forever.  I know mine has. 

When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times.  I thought “this was the worst of it” to myself.  Wow, was I in for a rude awakening 3 weeks after my accident!

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CBS Live Interview – Healthcare Policy Change

I am truly beyond humbled and incredibly honored that CBC17 News crew in Raleigh came out to my home to do a story on Ms. Wheelchair North Carolina 2022 and the efforts many of us are making in trying to reform healthcare policy within the insurance system.

“Self Advocacy” is the single driving mission I have in my life to help others with disabilities not only survive in their life, but thrive through aiding them in getting the medically necessary equipment and services they need in their own lives!

This will always be a long-term advocacy project of mine and I will not stop until we see systemic change, but in the meantime, we need to navigate the broken system we presented with, which takes a village of disability advocates standing up for the masses!

Without Further Ado:

Be Your Own Advocate & Fight For Your Life

It was such an honor to be a guest on Karen Roy’s Life Possible with a Disability Podcast. Karen Roy is a good friend and fellow Disability Advocate in the community. We talked on a range of subjects from love, life, adversity, and fighting for medically necessary equipment in the health insurance world, and what that entails.

Karen is a rock star in her own right who has been pushing for equal access to exercise equipment for those with disabilities, is Ms. former Wheelchair America, and now works with a large Durable Medical Equipment Company to push the boundaries for patient access in the health insurance world.

We had a great conversation and I do hope many people are able to take a lesson out of what we talked about in the podcast:

Disability & Inspiration – Common Misconceptions

As a C6 quadriplegic injured in a shallow water diving accident in 2010 leaving me paralyzed from the chest down and a full-time wheelchair user, I am no stranger to being called an inspiration on a regular basis as so many others with disabilities undoubtedly find themselves in similar situations.  

The challenge for many people with disabilities being called an inspiration lies in the perception beneath the word “inspiration.”  Are we being called an inspiration simply because we are living a life with a disability and able-bodied people find it inspirational that we are surviving a life simply because of our disability?  Or, are they calling us an inspiration because of our accomplishments and contributions to society just as any other member of the community?

Read the rest on The Rotary Club!