| THIS MONTH: BATTLING A BROKEN INSURANCE SYSTEM |
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Illustration by Mark Weber |
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For the past 20 years, I’ve used titanium wheelchairs. As someone with quadriplegia, a super lightweight, durable, well-fitting chair is what lets me roll with my kids to school, pull my frame into my vehicle and roll to the grocery store without blowing out my shoulders.
Twenty years ago, I could get my health insurance to cover a titanium wheelchair because they understood (or at least acknowledged) paying a little more for quality materials reduced the risk of costly complications down the road.
A few months ago, I went in to order a new wheelchair from a local PT who had a reputation for securing quality equipment for her clients. After doing some digging with local DME providers, she let me know the bad news: getting my private insurance to cover a titanium wheelchair was impossible. None of the DME companies would order one because they wouldn’t be reimbursed for it.
Manual wheelchairs are the clearest example of how health insurance coverage for essential equipment has eroded over the past few decades, but there are plenty of others. Catheters and ostomy supplies were recently added to Medicare’s competitive bidding program, which advocates say will lower reimbursement rates and limit access.
It’s hard to stay healthy without access to quality durable medical equipment, so battling with insurance is kind of a forced side gig for most wheelchair users. Let’s look at how to fight for what you need right now and how advocates are pushing to stop the bleeding in the long run.
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Rethinking Pressure Injury Care with Active Seating
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Insurance coverage is nebulous and ever-changing; the specifics of what will or won’t be covered depend on your insurance plan. That makes giving advice about what should and shouldn’t be covered next to impossible. But there are some strategies that can help, whether you have Medicare, Medicaid or private insurance.
In “6 Strategies to Navigate Your Insurance Appeals Process,” Ali Ingersoll talks with other wheelchair users about how they get the most out of their insurance coverage, including how to craft an effective Letter of Medical Necessity, build relationships with your DME provider and medical professional and be a persistent advocate for yourself.
It may seem counterintuitive, but one of the most important throughlines for navigating the bureaucracy of insurance appeals is to lean into human relationships. As James Lee, a C5-6 quad who has won appeals through his insurance company, explains:
“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.”
That logic applies to both insurance companies and your medical team, which will submit all the paperwork to the insurance company. The insurance appeals process is arduous and frustrating for everyone involved, and the better your relationships are with your PT and ATP, the more they know you and why the equipment you're asking for is important for your everyday life, the more likely they are to be a strong, persistent advocate on your behalf.
If you need additional help fighting an insurance denial, you can ask United Spinal’s Resource Center for help. We’ve also partnered with Advocara, which has an AI-based system that can securely translate a denial letter or a medical bill into plain language and give you tips on how to challenge it. To try the service, go to the United Spinal homepage and click the purple “Chat with Advie” button at the bottom left.
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ADVOCATING FOR A BETTER SYSTEM
Knowing how your insurance works and being a strong self-advocate will help you to wring the most you can from your coverage. But as I found trying to get a titanium chair, really the whole system needs fixing.
While reforming health insurance nationwide may seem like a big lift, you’d be surprised at how open elected officials are to hearing from their constituents. Remember that politicians are humans too, and most of the time they are inundated by lobbyists. Hearing from real constituents advocating for policies that would improve their lives is a welcome and motivating change from Congress members’ day-to-day interactions. |
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 | | At Roll on Capitol Hill, United Spinal members meet with Representatives and Senators from across the political spectrum to advocate for policies that improve the lives of wheelchair users. |
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For proof, just look to the FAST Repairs for Wheelchairs Act, which was sponsored by Representative Ayanna Pressley after her staff heard stories from United Spinal members about how long it took to get routine repairs for their wheelchairs.
That person-to-person storytelling has helped produce the many legislative wins that have come out of United Spinal’s signature advocacy event, Roll on Capitol Hill. This year’s virtual event just finished, but you can still contribute by telling your congress members to support the FAST Repairs for Wheelchair Act.
You can also tell them to support the Choices for Increased Mobility Act, which I mentioned in last month’s newsletter as well. That bill would require Medicare to create new billing codes for titanium and carbon fiber wheelchair frames — allowing suppliers to bill consumers only for the cost of an upgraded frame, with Medicare covering the rest. For me, that would mean the difference between making do with a six-year-old chair and getting a new one that fits my current body and lifestyle.
If you want to more opportunities to make change, you can join United Spinal’s Grassroots Advocacy Network, which gives you opportunities to attend events like the Roll on Capitol Hill or Virtual Advocacy Day, or join the Health Access Working Group, where you can work with other advocates finding solutions for our healthcare system’s myriad issues.
Fighting for equitable healthcare and insurance coverage can feel like swimming upstream. But being around other advocates is a great reminder of how often our community wins when we work together. |
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