As a C6 quadriplegic, I’ve spent the last decade perfecting strategies to improve my odds of success in getting the durable medical equipment, prosthetics, orthotics and supplies I need from my health insurance provider. A few key pieces of equipment I have successfully obtained include a specialized shower chair, pressure-relieving mattress, hospital bed, FES bike, and seat elevator for my power wheelchair.

I’m not the only wheelchair user who’s figured out effective strategies for every step of the process, from prior authorization to putting together effective appeals if denied. I interviewed others who use wheelchairs, including two staff members of the United Spinal Resource Center team, to present you with the best strategies for obtaining the medically necessary DMEPOS you need to not only survive but thrive in life.

1. Carefully Craft Your Letters of Medical Necessity

When Bruce Stultz’ initial requests for a SmartDrive were denied, he realized his letters of medical necessity needed to be more carefully crafted. When he collaborated with his physical therapist to craft a LMN that specifically stated a SmartDrive would reduce his back injuries and improve weakness in his shoulders from pushing his wheelchair due to his getting older and living with spina bifida, his request was approved.

Now he has this advice for others struggling to obtain necessary DME: “You need to work with your medical professionals to tweak the language in your LMN with keywords and phrases to include:

• Improving quality of life
• Medical necessity of a piece of equipment
• Improving activities of daily living
• Elaborating on the cost benefit analysis to the insurance company. This means showing how a health insurance provider not approving a piece of equipment could lead to secondary complications that would be more costly in the long run.
• Elaborating on specific secondary complications that would arise without the use of a specific piece of equipment.

Stultz says to be very specific in the language you use, do your own research, and work with your medical professionals to ensure the LMN is written in medical insurance language.

James fought to have enough catheters approved when his insurance company told him he could only go to the bathroom a certain number of times a day. He worked with a representative within Medicare to help facilitate collaboration and education between his physical therapist and general practitioner. Together, this collaboration pointed his insurance provider in the right direction. “The appeals process is not a one-man game but involves collaboration of many medical professionals. There is a higher probability of resulting success if we get all parties involved to fight on our behalf,” he says.

United Spinal Resource Center Director Bill Fertig adds, “As a manual wheelchair user, I have also found success in advocating for my own ultralight wheelchair components by having good communication with my physiatrist, which, in turn, led to a quality LMN for so-called ‘accessories,’ such as my pressure-relieving cushion and Natural Fit handrims, which prevent trigger-finger injuries.”

The Resource Center recommends backing up your LMN with peer-reviewed journal articles and fact sheets to make your case stronger. Especially explain any secondary complications that would arise without a specific piece of equipment you’re trying to have approved by insurance.

2. Learn Your Insurance Rights

Regardless of whether it’s private insurance or Medicaid/Medicare, each system has several steps to follow. To learn these steps, and your rights, read your insurance policy documents. In general, expect a prior authorization phase and several levels of appeals. Beyond that, you have the right to an external appeal, whether it be through the Department of Insurance for your state or in front of an advocate judge.

“The appeals process is complicated, and there are mountains of paperwork involved,” says Lee James, a C5-6 quadriplegic who has navigated the winding appeals process road to approval with success. “Even if you know your rights, it’s absolutely essential to call your insurance provider to find a human representative and build a relationship with them. Tell them your story and humanize yourself.” This is so important because you are generally just a number in a file to these insurance providers. You have to foster a relationship with a human being who will advocate for your case.

Daniela Castagnino, a quadriplegic on staff at United Spinal’s Resource Center, says, “Don’t be afraid to appeal your initial denial. It’s important to know your rights and exercise them.” The Resource Center advises that you understand each level of appeals. Also, if you have a responsive vendor, PT, OT, or physician that has your interests at heart, you should utilize their clinical expertise when available. Further, make sure to read your formal denial so that you know specifically what is being denied and why in order to create a stronger appeals case.

3. Be a Persistent Advocate for Yourself

Jonathan Merchant, a C5-6 quadriplegic, fought vigorously for the approval of his manual wheelchair and all the necessary components. This was time-consuming because he and his PT had to justify everything from a specialized backrest and wheelchair cushion to push handles, rims, and armrests. Each piece needed its own justification for Merchant’s level of disability.

Merchant returned to his PT each time he was denied a component of his wheelchair, and often more than once per denied component. “Make sure to add every single element of the wheelchair you are asking for upfront, so you don’t have to keep going back to your medical professionals, which can result in constant delays and approvals for each component of your wheelchair,” he says.

It’s important to stay on top of your DME provider, physical therapist and general practitioner. “You have to be persistent to understand where you are in the approval, denial, or appeals process,” he says, adding that it’s also important to compromise. “You may not get everything you ask for, but ask for everything you think you need. It’s a lot more challenging and time-consuming to keep going back to your PT for added elements of your wheelchair than asking for the moon and stars upfront.

Castagnino stresses it’s important to, “remember the squeaky wheel gets the grease. So keep at it, and record who you talked to, when, and what they said.” It’s worthwhile to keep a careful record of contacts made, dates, and times throughout the entire insurance approval process in order to keep track of where you are over the many months it can take to get the proper approvals.

4. Work Closely with Your DME Provider

Karen Roy, a T10 paraplegic, has a unique perspective, as she is a wheelchair user who works for a major complex rehabilitation technology company. “In general, your doctor is not going to be as knowledgeable as your PT, who knows the specific requirements for your disability, and your CRT provider will usually facilitate the process with your insurance company for the approval,” she says. “But you have to get involved in the process.”

Roy points out that there are layers of paperwork involved in the insurance process and many things get lost in translation between medical professionals with respect to medical coding, current procedural terminology codes, medical justifications, and so on. The CRT company she works for has online portals to show people precisely where they are in the approval process, but even so, she strongly feels it goes more smoothly when the wheelchair user is engaged.

She says you can’t expect your medical professionals to justify why you need every piece of equipment without your help because you are the one that knows why you need a piece of equipment the best, and exactly how you are going to use it. She stresses this takes team collaboration.

5. Seek Out-of-Network Provider Approval Solutions

While fighting for a pressure-relieving mattress, shower chair and fully-electric hospital bedframe, I had a problem: My insurance approved the requested equipment — but at an out-of-network rate. This is extremely costly for many of us because we are left paying the difference between the in-network rate and the out-of-network rate within our insurance plan.

I learned, however, that I can ask for an in-network gap exception so insurance can pay 100% of the billable amount — it’s a little secret insurance companies don’t want to give up.

If there is not a provider of a piece of equipment within a reasonable geographical radius of your plan, your insurance company has the ability to make this exception for you. Whether you have private insurance, Medicare or Medicaid, you have the right to ask for an out-of-network exception. Here’s a great article that goes a little bit more in depth about how these exceptions work: verywellhealth.com/network-gap-exception-what-it-is-how-it-works-1738418

The worst an insurance provider can do is say no. However, if you don’t try you’re definitely going to be left holding a hefty financial bill because many specialized DME providers are out-of-network.

6. Build Relationships with Medical Professionals Through Education and Involvement

Every single one of the wheelchair users interviewed in this article agrees the most important aspect in getting any piece of medically-necessary DMEPOS approved requires wheelchair users to advocate for ourselves. We simply have to be our own advocate in our life and have the ability to facilitate education and communication among our medical professionals.

It’s important to note that your PT, OT or physician will be among your biggest advocates because after you, they are the ones who understand your disability best. They can help educate your other medical professionals involved in the process as to your specific needs.

When you don’t know the answer to a question or how to frame the justification properly for a piece of equipment, that’s OK. You just need to:

• know the right people to ask and how they can help you
• make sure to understand what your rights are by reading your health insurance plan
• stay actively involved by being persistent
• consistently follow up to see where your case is in the prior authorization or the appeals process.

The overarching message Merchant conveyed is that you are your own best advocate and if you don’t know the answer to a question, to “Find other advocates to help you find the answers you’re looking for.” There are tens of thousands of other wheelchair users within our community who have been through what you are going through.
Merchant points out that, “many of these folks are fabulous resources, so don’t reinvent the wheel if you don’t have to.”

The insurance system should not be this challenging or immensely frustrating. Unfortunately, we need to learn, as advocates, how to work within the current system as it stands today.

However, not every insurance battle will always end in success. The United Spinal Resource Center advises that if you are unsuccessful in getting equipment approved by your insurance provider, there are additional outlets such as fundraising with Help Hope Live, writing grants, and working with United Spinal to find additional funding options.

Please contact the United Spinal Resource Center for additional help if you need it: 800/962-9629; unitedspinal.org/ask-us.