Regional Champion Spotlight: Ali Ingersoll

Posted by Reeve Foundation Staff in Life After Paralysis on March 29, 2021 # Advocacy and Policy

1. Please share a bit about your experience

As a C6 quad injured in 2010 after a shallow water diving accident, I found myself being repeatedly denied medically necessary equipment from my insurance company. So, I decided to take a stand and fight back. Over the last two years, I became exceedingly frustrated with our insurance system in the US, and the automatic denial's patients receive for equipment or services they need daily, especially for the disabled population.

I decided to take a stand. I read corporate insurance policies, learned how to draft my own letters of medical necessity, researched peer-reviewed scientific papers on specific pieces of equipment needed by the SCI population, and took control of submitting insurance claims myself.Ali Ingersoll

Over the last year, I've had quite a lot of success with navigating the insurance appeals system, connecting to the right people, and advocating for myself. Through my personal triumphs and failures, I started to build a large network of fellow spinal cord injury folks who have been dealing with the same frustrations I have.

As a result of the widespread encouragement in the SCI community, I started to make it my mission to help myself but help others learn to self-advocate.

I now partner with multiple national SCI organizations and individuals on teaching self-advocacy, as well as partnering with SPINALpedia to create a website to help individuals navigate the insurance appeals system. Essentially it is a "Patient to Patient Guide to Navigating Health insurance." I noticed a need for this in the market when I was doing my own research and found that there were many steps on the process by which an individual can navigate the appeal system, but not "Tips & Tricks" that really work to yield successful results for patients.

2. Why are you advocating for the Reeve Foundation?

The Reeve Foundation is by far one of the top leaders in the field and advocates for individuals with a SCI. The Foundation offers an excellent platform for individuals to speak up, reach out, and advocate for change.

It's one thing to be an individual advocating for change, but quite another to be able to partner and work with established organizations that have been working to change the system for decades. The Foundation aims to improve the quality of life for all individuals impacted by paralysis in addition to charging forward on advancing scientific research. The Foundation's mission in alignment with what so many of us as individuals are striving to achieve. Change in a word. We want the opportunity to live independently, improve her quality of life, and not have to fight so hard for what society thinks is best for us. We are the own best advocates in our life and having foundations like the Reeve Foundation backing us up creates greater systemic change in the long run.

3. Do you have any tips for advocacy?

The biggest tip I have for advocacy is to self-advocate. Unfortunately, we live in a country with a broken healthcare system, especially for those with debilitating long-term chronic medical conditions. While many are working to change policy for a better health care system tomorrow, we, as patients, need to learn to work within the broken system to get what we need to survive on a daily basis.

With that said, I have learned that the only way to do this is to partner up with organizations to work together to figure out the best practices and strategies to navigate within the present system we have.

There are no easy shortcuts to getting an approval from your health insurance company when they have to deny first, but there are strategies one can implement in order to make this process less daunting.

First off, you have to take control of their own health plan. What I mean by this is while you may have competent medical professionals, they are not the ones who have your best interests at heart. You do. For example, suppose you need a letter of medical necessity written by your doctor, and you do not have the ability to help them write it. In that case, it's really important to read over all of their work to make sure they have written a convincing argument for insurance, and why you need a certain piece of equipment or service. Don't trust your medical professionals blindly. There's an age-old expression, "Trust, but verify."

A patient can write a personal letter to an insurance company explaining why a piece of service is medically necessary for them, how it improves their quality of life, and why it would be life-altering to their independence.

Becoming your own self-advocate requires a certain amount of determination and perseverance. There is no one straight roadmap as every insurance plan is different, but each plan has systematic steps that are, unfortunately, intentionally confusing for many people, but possible to navigate around if you are motivated. Help is just around the corner, you just have to ask and be willing to put in the time.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.