In 2020, I was eligible for a new power wheelchair. I worked tirelessly to make the medical necessity argument for a power seat elevator. My private insurance carrier denied me. I spent months appealing only to receive the dreaded letter titled “Final Adverse Determination of Benefits.”

My insurance provider essentially told me that I had no more avenues for appeals, and I would have to pay nearly $1,500 out-of-pocket for a seat elevator, which has now greatly improved my independence and quality of life.

I am now able to raise myself up to cook food on the stove safely, brush my teeth at the sink, and safely transfer to my bed, among numerous other benefits. Most importantly, the ability to perform these daily functions independently reduces my risk of secondary complications, such as pressure sores and broken bones due to falls from transferring to and from uneven services.

Life was going to be tremendously more complicated without this addition. I have given myself the middle name, “Pleasantly Persistent.”

After several weeks I received a written letter from my insurance carrier explaining that they now “magically” found that my seat elevator was medically necessary for my diagnoses. Really? They even put a disturbing and common line in the letter stating, “This is not a precedent.” This enraged me!

Why did I have to fight so hard to survive while trying to thrive in life and make a difference in my advocacy work? I developed a laser focus on this issue and started reaching out to people, legislators, and organizations nationwide.

I soon realized this was a national issue and needed attention immediately.

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