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A broken wheelchair can bring life to a standstill and create multiple problems

STEVE INSKEEP, HOST:

A broken wheelchair can bring the user's life to a halt. It creates medical and financial problems. And repairs to custom wheelchairs usually take a long time. To understand just how big a deal this is, listen to Gabrielle Emanuel of our member station WBUR in Boston.

GABRIELLE EMANUEL, BYLINE: Pamela Daly (ph) was on vacation in New York City. She took a moment to look up and admire the buildings.

PAMELA DALY: All of a sudden, the world just kind of started to tilt to the left. And I actually thought maybe we were having an earthquake.

EMANUEL: It wasn't an earthquake, but it was a disaster for her. One of the small front wheels had fallen off her wheelchair. A passerby helped put it back on. But a few blocks away, the wheel came off again. Daley fell. A broken wheelchair and now a broken hip.

DALY: I felt very vulnerable, extremely vulnerable.

EMANUEL: She says, ultimately, the wheelchair was worse than the hip. Without a working chair, she was stuck in her apartment, unable to get to work and doctor's appointments. This lasted more than a month. She waited for insurance to approve the repair and the part to arrive. Daley remembers when the technician finally came.

DALY: And the guy opens the package in front of me. And it's the wrong part. And it always is the wrong part. Always. Always.

EMANUEL: Daley's story is not unique. For Murshid Buwembo (ph), it was a flat tire at work at Home Depot in Boston. Colleagues and friends tried to help him fix it.

MURSHID BUWEMBO: A police officer who's a friend of mine tried to take it at a gas station. Nothing could work.

EMANUEL: Buwembo missed three days of work. And he estimates, all told, the ordeal cost him $700.

BUWEMBO: I had to skip buying groceries.

EMANUEL: In a typical six-month period, more than half of wheelchair users report that their chairs break down.

LYNN WOROBEY: If 50% of people had their car break down in a six-month period, they'd probably be pretty upset.

EMANUEL: Lynn Worobey from the University of Pittsburgh has been tracking wheelchair breakdowns for years. Her research shows they often cause real problems, like missing school and increasing the chance of hospitalization. They've been linked to serious sores that can happen when a back-up chair doesn't fit or you're bedbound.

WOROBEY: So some pretty significant health consequences.

EMANUEL: So what's going on? Mark Schmeler, also a professor at UPitt, says Medicare is part of the problem.

MARK SCHMELER: Medicare doesn't have a allowance to do preventative maintenance. That's one of the biggest culprits right there.

EMANUEL: For a car, you have oil changes, for a bike, tune-ups. For a wheelchair, there's nothing. A part has to break before Medicare pays to fix it. And what Medicare does matters because private health insurers often follow suit. Schmeler says another problem originated in the late '90s and early 2000s.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED NARRATOR: Attention Medicare and insurance beneficiaries.

EMANUEL: In TV ads, scammers convinced people to get chairs on Medicare's dime.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED NARRATOR: You may qualify for a power chair or scooter at little to no cost to you.

EMANUEL: About $1 billion later, Schmeler says, Medicare said it would only cover a wheelchair that's primarily used in the home. That means it isn't designed to withstand the wear and tear of life.

SCHMELER: It makes no sense whatsoever. But, you know, they had to do something.

EMANUEL: The Centers for Medicare & Medicaid Services declined requests for an interview, but said its policies are guided by federal law. Charles Sargeant is with National Seating & Mobility, one of the biggest providers of wheelchairs. He blames health insurers for the slow repairs. Often, they require a doctor's approval before repairs can start. Sergeant says that can increase repair times by a month or more.

CHARLES SARGEANT: Ninety-nine-plus percent of the time, they're going to give the authorization.

EMANUEL: Several health insurers declined interviews. Whatever the issue, wheelchair users say they are the ones stuck living with the consequences.

DALY: It's something that prevents us from living to our fullest.

BUWEMBO: You can't go to work. You lose your independence.

EMANUEL: Pamela Daly and Murshid Buwembo say they go through life fearing a flat tire or a faulty motor.

For NPR News, I'm Gabrielle Emanuel. Transcript provided by NPR, Copyright NPR.

Gabrielle Emanuel
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