Wheelchair repairs can take a month or more, leaving people stuck

Pamela Daly was on vacation in New York City, when she paused to look up and admire the horizon. Suddenly, the whole world began to tilt to the left.

“I actually thought we might see an earthquake,” she recalls.

It wasn’t an earthquake, but it was a disaster for Dali.

One of the small front wheels fell off her wheelchair. A passerby helped her put the steering wheel back. But a few streets away–halfway, in crowded Manhattan–the wheel spun again, and Daly fell.

Broken wheelchair and broken hip.

Pamela Daly at her home in Charlestown. (Robin Lubbock/WBUR)

Daly said many wheelchair users have a story like this one, often more than one.

Researchers estimate that more than 50% of wheelchairs break down in a typical six-month period. One study found the number among veterans to be as high as 88%. When a chair breaks, it can take a long time to fix it. Experts estimate the average at two to four weeks, but common stories are of people waiting six months or more for a wheelchair repair.

Experts pointed to several reasons why wheelchairs break down frequently and why it takes time to fix them. Some attributed this to a lack of routine maintenance, and others pointed to the sheer complexity of modern electric wheelchairs. Repairs can also be delayed by everything from documents required by insurance companies to a limited stock of common parts.

For the nearly 5.5 million Americans who use wheelchairs, this is more than an inconvenience. While waiting for repairs, people in the house can be stranded, stuck in bed, or forced into an unsuitable chair. Research suggests that when this occurs, a person is at an increased risk of developing medical complications and being hospitalized.

For Daly, a wheelchair collapse was worse than a hip fracture.

Without a work chair, she was stuck in her home in Charlestown. Daly, who was paralyzed in a car accident decades ago, has missed work and struggles to get to the hospital so doctors can look at her hip.

She waited at home for over a month for insurance approval for a repair, and for the piece and technician to come to her home.

“The guy opened the package in front of me, and that’s the wrong part,” Daly said. “And it’s always the wrong part. Always.”

cascading consequences

For nearly 15 years, researcher Lynn Worobey has been collecting data on wheelchair malfunctions and repairs.

“The numbers are shocking,” said Worby, an assistant professor at the University of Pittsburgh and a physical therapist at the university’s medical center, UPMC Mercy. “I think the scariest part is that they are not new numbers. It has been like this for a while.”

Worobey often tries to induce empathy by comparing wheelchairs to cars. “If their car breaks down 50% in six months, they will probably be very upset,” she said.

“If their car breaks down 50% within six months, they will probably be very upset.”

Lynn Worby

But she quickly added that a wheelchair is much more than a car.

In addition to being a means of transportation, chairs are often customized to meet a person’s medical needs and abilities. For example, some chairs can be controlled by eye movements if a person cannot use other parts of the body for orientation. Chairs can also be designed and installed to relieve pressure on certain parts of the body so that painful — and rarely fatal — sores called pressure ulcers do not develop.

In a study of wheelchair users with spinal cord injuries, 28% of people who experienced collapses over a six-month period reported at least one negative outcome, Worobey found, such as stranding. The same study revealed that people of color and those on lower incomes had frequent problems using wheelchairs.

The Poimpo guide missed work and had to fumble on groceries and other purchases after his wheelchair broke down. (Robin Lubbock/WBUR)

The Poimpo guide can hardly count the number of times his wheelchair has broken down. But he said the most recent was a punctured tire at work at the Home Depot in Boston. His colleagues and friends tried to help him fix it but to no avail.

Poembo missed three days of work. He estimated, it was said, that the ordeal cost him $700. That’s a lot for Powembo, a polio survivor and asylum seeker from Uganda.

“I had to skip grocery shopping,” he recalls. “I didn’t even eat.”

‘It makes no sense at all’

Mark Schmiller, assistant professor in the University of Pittsburgh’s Department of Rehabilitation Science and Technology, blames Medicare for frequent wheelchair breakdowns. With more than 60 million elderly and disabled beneficiaries, Medicare is among the largest health insurance providers in the country. In addition, many private health insurance companies adopt policies similar to those established by Medicare.

One of the biggest culprits [of wheelchair breakdowns]”It is that Medicare does not have an allowance to do preventative maintenance,” Schmiler said.

For a car, there is an oil change. For the bike, there are tunings. For a wheelchair, there is none.

The Medicare Benefits Policy Manual states that wheelchair owners are expected to perform routine maintenance. The document states that owners “naturally” receive operating manuals that can serve as evidence: “It is reasonable to expect that the beneficiaries will perform such maintenance.”

For Schmiller, this approach allows preventable problems to progress to the point where chairs unexpectedly become inoperable — or dangerous.

Another problem, he said, is that Medicare will only cover a wheelchair used primarily at home. As a result, wheelchairs often don’t have a good motor, high-quality suspension, or powerful batteries, Schmiller said.

The Centers for Medicare and Medicaid Services (CMS) has denied multiple interview requests, but said in a statement that this ruling can be traced back to the Social Security Act. CMS said patients are allowed to use their wheelchairs outside the home, but Medicare will not cover scooters or wheelchairs used exclusively for picnics.

According to Schmiller, Medicare began interpreting the law narrowly in the early 2000s after television advertisements began appearing.

“Attention Medicare and insurance recipients,” said an announcer in an ad from the now-defunct The SCOOTER Store. “You may qualify for an electric chair or scooter at little or no cost to you.”

Partly through advertisements like this, scammers have persuaded people to get scooters and wheelchairs on a dime from Medicare. After about a billion dollars, “Medicare had to do something very drastic,” Schmiler said.

Therefore, she tightened the rules, insisting that the chairs she covered in the first place be used in the house.

“It makes absolutely no sense,” Schmiler said. “But they had to do something.”

This is in late request.

In 2016, the Disability Law Center (DLC) in Massachusetts hosted a conference with wheelchair manufacturers and dealers, health insurance companies, wheelchair users, and advocates. There was near-universal agreement that the time it takes to repair a wheelchair is unacceptably long.

Their task was to find a solution. The DLC said the voltage failed. Then and now, each stakeholder pointed to a different reason for the long waiting times.

One of the main issues has been shrinking the number of companies selling wheelchairs, said Rick Glassman, DLC’s director of advocacy. “There are a lot of mergers in the market, and there is no consumer power,” he said.

Over the past few decades, the number of dealers has dwindled to a handful in New England, he said, and the market is dominated by two national suppliers — Numotion and National Seating and Mobility. Glassman said wheelchair users are stuck with few options and “very poor customer service.”

From a dealer’s point of view, it’s impossible to make money from wheelchair repairs, said Schmiler of UPitt, who studies the wheelchair repair market. In a recent survey, it was found that more than 50% of businesses reported compensating for less than half the time it takes to complete repairs.

“You can’t even break a tie,” he said. “It’s a groundbreaking loss in most companies – in fact in all companies.”

Kim D’Amato’s family owns Reareness Equipment Associates, one of the few independent dealers still operating in New England. She acknowledged that “consumers don’t have much choice” and that it’s hard to make money doing repairs. But she said she feels handicapped by manufacturing problems. She described seeing poor wheelchair construction and long delays in getting parts.

“Someone just called and said his joystick wasn’t working,” D’Amato said. “We called the manufacturer, and they said it was in late order until June.”

The man will have to wait at least three months for repair. In the meantime, D’Amato will do her best to fit him in with a chair borrowed from a bank of about 40 banks her family has hoarded.

“Someone just called, and said their joystick wasn’t working. We called the manufacturer, and they said it’s in late order until June.”

Kim D’Amato

Health insurers are exacerbating the problem by having slightly different rules about coverage, and many requiring a doctor’s approval before repairs can begin, said Charles Sargent, chief revenue cycle officer for National Seating & Mobility.

Getting a doctor’s approval and the blessing of a health insurance company can be a slow and frustrating process, Sargent said.

“Ninety-nine percent plus of the time, they will grant permission, but maintain this ancient process for fear of fraud or overuse,” he said.

Sargent estimated that when insurers do not need permission, repair usually takes a week, but when insurance companies require prior authorization, it takes approximately 50 days. He said he hoped to develop an industry standard for authentication that would detect fraud while reducing wait times.

Blue Cross Blue Shield of Massachusetts and Tufts Health Plan declined to give interviews. In a statement, Tufts Health Plan attributed some of the long wait times to “supply chain delays around the world.”

“To ensure our members receive the highest quality service at an affordable cost, we review repair requests to ensure they are necessary and appropriate,” Blue Cross Blue Shield said in a statement.

Living in “Fear and Fear”

Elaine Lee was outside her Arlington apartment building with a friend in April 2018, when the brakes on her wheelchair suddenly went off.

“I went rolling. I was out of control,” she said. “It was so scary.”

She said it took three years to fix the problem. I had another chair she could use, but it didn’t do everything she needed. Sometimes she had to use her broken wheelchair, which she did with “fear and fear.”

“You can get things overnight from Amazon, but you have to wait months to get a small portion for a wheelchair.”

Elaine Lee

Whether it’s wheelchair breakdown and repair issues due to insurance policies, chair quality or logistical delays, she said, it’s users who suffer the consequences.

“There has to be a better way,” he told me. “You can get things overnight from Amazon, but you have to wait months to get a small portion for a wheelchair.”

Until things change, she added, wheelchair users go through their lives in fear that a loose screw or defective motor could become a devastating disorder.

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