My daughter, Katherine, is 21 years old. She has cerebral palsy and has relied on a power wheelchair to move around the world since she was 5 years old.
With summer in full swing, she likes to roll down the sidewalks in our neighborhood and look at the flowers in bloom. She enjoys popping into her neighborhood therapy clinic to visit friends. And she loves to be the center of attention. Earlier this summer, she participated in a two-night stage performance of “Shrek,” starring adults with disabilities. She played the Fairy Godmother, and she nailed it.
These activities all take place outside our home so, according to the outdated policies used by Medicare to determine which mobility devices to cover, none of them are considered essential to Katherine’s life. I know that just the opposite is true: These activities mean more to Katherine than anything else. It’s time for the Centers for Medicare & Medicaid Services to review their existing policies about which types of medical equipment deserve Medicare coverage and, more broadly, to see individuals like my daughter as people, and not just patients.
CMS’s most recent decision about how Medicare would pay for “mobility assistive equipment” — an umbrella term for things like canes, crutches, walkers, manual wheelchairs, and power wheelchairs like the one Katherine uses — was released in 2005. It focused on expanding Medicare’s coverage for devices that help individuals participate in so-called activities of daily living, like feeding, dressing, and bathing.
All coverage was dependent, however, on three small words scattered like land mines throughout the decision: in the home. It was used in sentences such as “The primary purpose of [mobility assistive equipment] is to help patients function in the home, and our regulations require that this equipment be appropriate for use in the home.”
When I imagine the daily activities that define Katherine’s life, I rarely think about the things she does in a bathroom to get ready for the day. Yet those are the only measures Medicare uses when deciding whether or not to cover her power wheelchair.
Updating Medicare’s coverage policies to include devices that give people healthier, richer, and safer lives — outside their homes as well as inside them — is not an unreasonable request. The Veterans Health Administration has implemented inclusive policies to meet veterans’ needs in their homes and in their communities, and some state Medicaid programs have also begun basing their coverage decisions beyond in-home usage. But the federal Medicare program is the single most influential insurer in the land. As far as mobility equipment is concerned, most private insurers and state programs simply follow the Medicare coverage determinations set by CMS in 2005, which haven’t been touched since.
Because my daughter relies on her chair as her only means of independent mobility, its power base was covered by our private insurance. The power base is, more or less, the four wheels and primitive battery that help Katherine go where she wants. But it does nothing to help her avoid the walls, stairs, curbs, people, and other obstacles along the way.
Katherine also relies on a seat elevator to help her reach objects when she’s seated in her wheelchair. Medicare has determined this is a convenience item and unnecessary to her home life. Because of that determination, many families are forced to decide whether they can afford functionally important add-ons like this by paying out of pocket. The same goes for safety-related technologies, including technology to help a user drive straight or wheelchair lights for outdoor driving.
As it stands today, the only safety feature CMS will cover for power wheelchairs is a seat belt.
We’re grateful that Katherine’s chair allows her to lead an infinitely richer life, with interests and passions that extend far beyond our front door. She and millions of other wheelchair users are like any able-bodied person that way — they’re students, partners, breadwinners, hobbyists, athletes, and parents who chase their kids around ballparks and playgrounds. We’ve met people in power wheelchairs who drive race cars and work corporate jobs in skyscrapers. And we believe all of them, and more, deserve access to devices that support their mobility in the environments where they live, work, and play.
It’s been nearly five years since I got a call that forever changed the way I viewed Katherine’s safety when using her wheelchair. A friend of mine from the songwriting community, Troy Verges, told me he was going out of town because his mother had tipped over her power wheelchair again, breaking bones and covering her body in cuts and bruises. It wasn’t the first time this had happened.
But it was the first time I thought about the catastrophic results a similar fall would have on Katherine, whose spine is fused after more than 20 procedures and whose 85-pound body would be utterly useless pinned beneath her 350-pound power chair.
The numbers suggest it’s a matter of when, not if, such an accident will happen for Katherine and most wheelchair users. A new study published by the International Spinal Cord Society shows that nearly two-thirds of wheelchair riders reported a failure or repair in the previous six-month period, with one-third of those resulting in adverse consequences and injuries.
In the years since Troy’s mom’s accident, I’ve been working with my brother, Jered. We cofounded LUCI, a company that has developed a hardware attachment and technology platform to help power wheelchair riders avoid obstacles, drop-offs, and tipping dangers. Think of it like the technology in cars that helps drivers with lane changes and backing up, only smarter and applied on a millimeter scale. In my own home and across the country, we’ve seen how the ability to avoid painful and costly collisions can lead directly to more confidence, more independence, and a higher quality of life for the person in the chair.
Many other people are also working to bring power mobility into the 21st century. Groups like United Spinal Association, Paralyzed Veterans of America and the ITEM Coalition are successfully advocating with and on behalf of wheelchair riders for better access to technology and devices. One of the biggest problems we continue to face — and one of the main deterrents for innovation in an industry that desperately needs it — is CMS’s lack of coverage for anything that improves lives outside of a user’s home.
I believe that power wheelchair users are among the most fearless people on earth. Through my daughter’s eyes, I’ve seen the challenges they stare down daily, and I know their lives are defined by so much more than what they do in the home. Mobility policies and practices must be updated to acknowledge that.
Barry Dean is a Grammy-nominated songwriter and the co-founder and CEO of Nashville, Tenn.-based LUCI.