The Importance of CRT: From the Perspective of Ali Ingersoll, Ms. Wheelchair America 2023

Published in Complex Rehab on January 18, 2023

Ali Ingersoll, Ms. Wheelchair America 2023By Guest Author Ali Ingersoll, Ms. Wheelchair America 2023

In a split second after breaking my neck in a shallow water diving accident in 2010, I was left a complete C6 quadriplegic. I simply couldn’t have known the challenges I would face in my life, let alone the complexities of navigating the health insurance process. One could argue, health insurance may be equally as challenging as the secondary complications arising from a disability.

Within a matter of days of my accident, I had an army of advocates within my family fighting on my behalf for medically necessary equipment I was going to need to not only survive in my life, but to thrive. Specifically, a piece of complex rehab technology (CRT), better known as customized wheelchairs. I am fortunate to continue to have a network of people behind me, but there are those who, more often than not, are left on their own to fight unnecessary battles for their own wheelchairs.

Hades, God of the underworld in Greek mythology, condemning Sisyphus to roll a boulder up the mountain only to have it fall back down on him and then start all over again, is akin to wheelchair users today figuring out who the multiple companies and medical providers are to help get a specialized wheelchair approved as medically necessary. It’s a never ending and repetitive cycle. It doesn’t have to be though.

There are any number of reasons and medical conditions requiring the use of a customized wheelchair. However, health insurance companies don’t make it easy to have anything approved  - even for seemingly obvious reasons such as paralysis due to a spinal cord injury. There is a deny, deny, deny policy at every turn. Trying to figure out the particulars of navigating the health insurance appeals process is a full-time and unpaid day job in and of itself.

Wheelchair User Fears

One of the greatest fears within the disability community, specifically for wheelchair users, is trying to figure out who is going to help them. Many may be their own self advocates, but it requires multiple parties working in unison to get the right-fitting wheelchair.

Think about what happens when you purchase the wrong pair of shoes. Your feet are likely to be sore, perhaps blistered, and you may end up taking a day away from work because it’s painful to walk.

Now, think about what it must be like to be fitted for the wrong wheelchair. A serious host of secondary complications, including pressure sores, spinal curvature, painful joints and muscles, etc., are likely to ensue, resulting in potential long-term stays in the hospital or in your bed at home.

I can personally attest to this, as I recently took a trip back home to the Bahamas after 12 years with a documentary crew to film a movie. I was unable to bring my Permobil F3 power wheelchair with me and had to use a manual chair. While I did feel blessed to have a specialized manual chair, due to the painful medical secondary complications I suffer from, I was seriously uncomfortable and in pain the entire time. I also lost my quality of life and independence as I was having to be pushed everywhere. This is no way to live.

Ms. Wheelchair America

Ali Ingersoll speaks at a Congressional Briefing in Washington D.C. held September 14, 2022 about why seat elevation is important to her. The briefing was held to continue the discussion about why it is incorrect for Medicare to list power seat elevation and standing systems for power wheelchairs as “not medically necessary” for people with disabilities.

Working with DME/CRT Companies

This is where durable medical equipment (DME) and complex rehab technology (CRT) providers are a critical component to the success of helping a wheelchair user not only get the proper fitting manual or power wheelchair, but also get approved for it. DME and CRT providers hold the keys to the kingdom with respect to ensuring all of the right paperwork is collected from PT evaluations, primary care physicians, letters of medical necessity, etc.

In the early days of my spinal cord injury, I was left on my own and was forced to use a very large national DME/CRT company. They made it extremely challenging for me to understand the prior authorization, approval, and denial process within health insurance. They also repeatedly did not double check their work before submitting anything to health insurance. At times, I was denied because the wrong diagnoses code or CPT code was entered.

This literally forced me into becoming my own self advocate and learning how to navigate the intricacies of the health insurance appeals process, which led to being recently crowned Ms. Wheelchair America 2023 for health insurance advocacy. I don’t want my fellow wheelchair users to have to go through what I went through. You definitely have to be your own self advocate, but it makes the process more delightful when you feel that you have a DME and CRT company by your side throughout the process.

I currently reside in Raleigh, North Carolina, where I have been incredibly fortunate to work with small to mid-size DME/CRT company called Stalls Medical and Adaptive Vans. They are a family-run business with multiple locations around the state. They are a second family to me.

Unfortunately, the smaller “Stalls Medical” DME/CRT companies around the country are getting swallowed up by nationwide DME/CRT companies. The challenge with this for many of us is that these larger companies do not offer the personalized and customized support we need to make sure we are fitted properly for “right” wheelchair. I can’t tell you how many times I have worked with individuals who feel utterly defeated when their DME/CRT company takes four months to get a footplate fixed. This is just simply unacceptable.

The Wheelchair Repair Conundrum

To further elaborate on the aforementioned repairs, this is a hot button issue in the world of DME and CRT providers and wheelchair users that is worth exploring further.

Sadly, many of the larger national DME/CRT providers have not made the necessary investments into departments dedicated to repairs and regular maintenance of the wheelchairs we use. The battle alone of trying to have a CRT wheelchair approved requires a Herculean effort in and of itself, but it is just one piece of the puzzle with respect to quality of life for us wheelchair users.

Once we take receipt of our brand-new shiny and customized wheelchairs, they require regular maintenance just as a car does. For example, new batteries each year, tires for our wheels, internal broken parts from wear and tear, the list goes on.

The reality of the situation is this - not only are there a lack of resources amongst these larger DME/CRT providers to offer timely repairs, but the approval process with a multitude of different insurance companies is absolutely mind-boggling for each component of a wheelchair that needs repairing. This requires resources and capital investment on the behalf of these providers in good faith.

Some examples of lack of funding for repairs include, but are not limited to:

  • Travel time to repair in-home
  • Diagnostic time for repair
  • Prior-authorization red tape that keeps the process going for far too long and denials for very simple, mundane issues

Wheelchair repairs need to be prioritized, but this is currently not happening. Why? It usually comes down to dollars and cents and the fact that wheelchair repairs are not a moneymaker. If the profit is not there, then many large companies in any industry will focus their efforts elsewhere.

This is absolutely unacceptable in the world of CRT because DME and CRT providers have taken an oath by opening their doors to provide good faith service to improve the quality of life of their clients. I’m not talking about an iPad that needs repairing and we could live without it for a few weeks. I’m talking about our (the clients and wheelchair users) primary mode of transportation offering us our independence.

Simply put, it is important for the larger providers to do better. I wonder if a family member of one of these larger DME/CRT companies required the long-term use of a wheelchair. They may be financially comfortable to pay out-of-pocket, but tens of thousands of us are not. This is not just a financial issue, it’s an ethical and moral one requiring complex, inclusive solutions.

Why Is This Happening?

This is happening for a plethora of reasons, but I know firsthand that there is a lack of communication, cohesion, and proper follow-up by many staff in these larger nationwide DME/CRT companies. Don’t misunderstand me, there are branches of these companies in states that are fantastic, but from a corporate perspective, many of us in wheelchairs feel as though we are just a number and a dollar sign.

Stalls Medical is incredibly unique in this respect. If I have a problem with my wheelchair, I know that someone will drive out and help me within several hours. You don’t get customer service like this anymore. That’s what it really comes down to – people.

Another challenge is that many of these smaller DME/CRT companies cannot compete with the in-network reimbursement rates that many of these larger DME/CRT companies are able to, thus forcing them out of so many health insurance networks today. A grave tragedy, in my opinion.

When I moved to Raleigh, I was due for a new power wheelchair according to my health insurance policy. I worked directly with ATPs at Stalls Medical and their insurance department. I had a specific person I could talk to who followed my case from start to finish. Taking that one step further, my ATP even accompanied me for multiple visits to my PT for my seating evaluation. It took a number of slight tweaks to make the chair perfect, but they just kept at it until I felt comfortable.

Strategies for DME/CRT Patient Relation Improvements

There are so many ways these larger DME and CRT companies could work more efficiently, patiently, and effectively with wheelchair user clients. A few strategies include:

  1. Reaching out to a handful of wheelchair customers for a focus group to find out where the company could improve.
  2. Creating an automated database reminder for regular maintenance schedules to send out via email or text to customers.
  3. Creating a “How to Guide” for DME/CRT staff members to work through with wheelchair users on steps to having a wheelchair approved by insurance. 
  4. Creating a dedicated department for customer relations so that wheelchair users can be assigned a dedicated "caseworker" who is responsive, polite, friendly, and compassionate.
    • Patience and compassion is key. It's so important to remember that the client (the wheelchair user) is the one who is struggling for survival, not the customer relations employee. Sometimes this involves the employee slowing down and being compassionate to the frustrations of the client and finding ways forward together in a productive manner.

There are dozens of other strategies I could think of to improve patient relations, which, more often than not, is where things take a turn for the worse. You might be surprised how far a phone call will go to building trust between a wheelchair user and their DME/CRT provider.

Trust is absolutely everything. Of course, one needs to “trust but verify” by being your own patient advocate too, but it needs to be a collaborative effort. Providers must remember that our wheelchairs are our legs, improve our quality of life, and increase our independence. The DME/CRT provider has made an unspoken oath by opening their company to improve the quality of life of their clients. Let’s work to live up to that on a regular basis with incremental improvements that include directly working with “us,” the clients.

Ali Ingersoll was crowned in August 2022 as Ms. Wheelchair America 2023 for health insurance advocacy. Ali sustained a spinal cord injury (SCI) in 2010 when a diving accident left her paralyzed from the chest down. After her injury, Ali learned about the complexities that come with complex rehab technology but quickly became a leader and an advocate for other end-users in the CRT space. She currently resides in North Carolina. Learn more about Ali on her website or by connecting with her on LinkedIn.

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