Patient Experience

Further News About Wheelchair Pioneers and the Challenges They Face

Since posting a story from KNH about efforts to empower wheelchair users to access efficient maintenance and repairs for their devices, I’ve seen more stories about challenges pioneering users face. As the population ages and more people are able to recover from grievous injuries, we can expect the number of wheelchair users to grow. Empowering them to achieve the highest possible health and quality of life has societal benefits as well as profound results for individuals and their families and caregivers, as demonstrated in these recent articles.

Paul Amadeus Lane and Jim Meade both use wheelchairs with powered seat elevation and other advanced technology, which allow them to elevate to standing position while still supported in their “chairs.” That means they can meet others at eye level and perform many tasks that are awkward or impossible to accomplish from a seated position.

In “Medicare needs to update its wheelchair coverage for the 21st century,” which they co-authored for Stat News,they report, “We can complete everyday tasks like going to the bathroom or stocking kitchen cabinets that are nearly impossible for those who spend all or nearly all their time in wheelchairs without these capabilities.” Further applications and advantages seem limitless: cooking on a stove, folding laundry, grabbing a snack from the refrigerator, speaking from a podium, etc. They also describe medical benefits such as better muscle tone, balance and circulation with less social isolation and decreased risk of injury while being transferred by others. Lane notes that using a standing wheelchair also means he doesn’t need as much physical help from his wife. “She no longer has to help me transfer out of my wheelchair five to eight times a day,” he says.

Lane and Meade make the case for better financial support through Medicare, which does not cover the advanced technology, finding that it “is not primarily medical in nature.” Medicare is the primary insurer for many people who use wheelchairs due to long-term disabilities, in addition to adults over 65 years of age. Wheelchairs with standing technology can cost $10,000 or more, according to Lane and Meade. Lane is the accessibility specialist and tech access lead for United Spinal Association’s Tech Access Initiative. Both he and Meade are affiliated with the Independence Through Enhancement of Medicare and Medicaid – or ITEM – Coalition. The article includes a link to a Centers for Medicare and Medicaid Services webpage that details CMS efforts to gather public comment and indicates that the issue is under consideration.

Meanwhile, The Boston Globe reports that U.S. Representative Jim Langevin (D-RI) has had problems traveling on commercial airlines with his iBOT wheelchair, a custom-fit four-wheel chair with a range of seating-to-standing options and the ability to navigate stairs and rough and soft surfaces such as snow and sand. The iBOT is powered with lithium ion batteries, which some airline staff members say are not allowed onboard. Langevin — the first quadrapeligic U.S. Representative — has had advance planning assistance from the Dept. of Defense for some of his flights (to Europe to visit troops, for example). Even then, he has had trouble convincing some airlines to accept his chair. The Globe reports that Lufthansa, the airline in question, later apologized, explaining that the rules for lithium ion batteries are complicated. iBOT engineers say that the batteries meet current FAA rules.

Langevin has filed legislation that would mandate the FAA to fine airlines for denying people their right to travel or discriminating against them based on their disability.

The iBOT website includes video testimonials from people who own and use their chairs. “Inspiring” doesn’t begin to capture the range of personal and professional accomplishments that these engaged individuals achieve.

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 181 post(s) at EngagingPatients.org

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