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Facing breakdowns and slow repairs, Mass. wheelchair users call for stronger state law

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Aurorah Arndt was a sophomore at Wellesley College when everything in her life changed.

“I was literally training for ultramarathons, and then, one fine day, I woke up and I couldn't sit up without falling over,” Arndt remembered.

Eventually, doctors diagnosed her with a connective tissue disorder. But another problem quickly emerged: the wheelchair she now relied on was unreliable.

Wheelchairs fail frequently. Researchers estimate that, in a typical six-month period, more than half of wheelchairs break down. And getting them repaired can take a month or longer, leaving wheelchair users stuck at home or in bed, and at an increased risk of medical complications.

The problems are particularly bad in Massachusetts, according to disability advocates. They say the commonwealth’s consumer protections for wheelchair users don’t measure up well to other states. They’re sparring with the wheelchair industry on Beacon Hill over legislation aimed at changing that.

“... there's no AAA for wheelchairs, so any repairs are like getting stranded."

Aurorah Arndt, student

For Arndt, who was navigating a college campus through snow and rain, over brick sidewalks and hilly paths, fear of a breakdown loomed around every corner.

“And there's no AAA for wheelchairs, so any repairs are like getting stranded,” she said.

In addition to long repair wait times, she learned that warranties often limit where wheelchair owners can get repairs. This can mean no bike shops or auto mechanics are allowed, even for a flat tire. Yet, she discovered, there are only a small number of companies in Massachusetts that sell and fix wheelchairs.

“I couldn't believe that it was really this bad everywhere,” Arndt said. “And so, I started doing research.”

She wasn’t the only one.

Clashing At The Statehouse

“Massachusetts law is definitely behind most of the country,” said attorney Sam Shepard, who worked as a fellow for the Disability Law Center and the National Consumer Law Center. He compared Massachusetts’ wheelchair warranty law with that of every other state in the U.S.

“What I found was pretty unsettling,” he said.

Shepard uncovered quite a few differences between the commonwealth and other states. For example, 16 states require a back-up chair be provided while major repairs are underway. Massachusetts does not.

"Simply by adopting provisions that other states have already adopted, we could do a lot better."

Sam Shepard, attorney

Another example: Rhode Island and Connecticut require that wheelchair warranties last at least two years. In Massachusetts, the requirement is half that. Warranties can help protect consumers from hefty bills or shoddy products. They also mean less paperwork so repairs can happen faster.

“Simply by adopting provisions that other states have already adopted, we could do a lot better,” Shepard said.

He’s part of a team of wheelchair users and disability advocates pushing for a bill in Massachusetts to provide stronger consumer protections for wheelchair users. The bill is currently working its way through the state legislature.

“This is a law that will level the playing field between consumers and [wheelchair] providers. It will shorten repair wait times,” Shepard said. “And most importantly, it lets folks with disabilities live their lives freely.”

But three major trade associations that represent wheelchair manufacturers and providers have come out against the bill, saying it doesn’t provide workable solutions.

The National Coalition For Assistive & Rehab Technology (NCART), Home Medical Equipment and Services Association of New England (HOMES) and American Associations for Homecare (AAHomecare) all declined interview requests. Yet, they wrote to legislators expressing “strong opposition” to the bill. The groups argued it would create “additional confusion, complications, and risks for wheelchair users.”

In their letter, the organizations said they “have not been included in any discussions regarding the development of this bill” and that the language in the proposed legislation “indicates a lack of understanding of the process of how wheelchairs repairs are requested, provided, billed, and paid for.”

Acknowledging the critical nature of the issue, the organizations urged lawmakers to focus on reforming insurance policies instead of warranty protections.

Sixteen organizations who regularly work with wheelchair users responded with their own letter questioning the strength of the trade associations’ arguments and pointing out that some of their objections were to elements already present in existing Massachusetts law, as well as wheelchair warranty laws in other states.

Fixing Wheelchairs May Take Federal And Grassroots Action

Whatever happens at the State House, disability advocates and people from the wheelchair industry agree that state-level legislation won’t solve the entire problem. That’s led some to envision grassroots changes, while others hope for national reforms.

Murshid Buwembo has long dreamt of a mobile wheelchair repair van that you can call for help akin to roadside assistance from AAA. If a quick fix or replacement chair aren’t possible, the service could provide, at least, a ride home.

Disability rights activist Murshid Buwembo. (Robin Lubbock/WBUR)
Disability rights activist Murshid Buwembo was among those who testified before lawmakers in favor of a bill to strengthen warranty protections for wheelchair users. (Robin Lubbock/WBUR)

He envisions a van staffed by people with disabilities who can simultaneously help other people with disabilities keep their jobs.

“So many people living with disabilities are not working right now because their wheelchairs are unreliable,” said Buwembo, a polio survivor and wheelchair user for 25 years. For such an idea to work, he acknowledged, it would likely require a green light from insurers, wheelchair dealers and manufacturers.

Lynn Worobey, who studies the frequency and impact of wheelchair breakdowns at the University of Pittsburgh, is experimenting with teaching people with spinal cord injuries to do wheelchair maintenance themselves. She’s running a randomized control trial to see if a free online course on maintenance can reduce breakdowns. While the study is ongoing, “preliminary results look good and feedback has been great,” Worobey said.

Mark Schmeler, Worobey’s colleague at the University of Pittsburgh Department of Rehabilitation Science and Technology, believes that the payment model for wheelchair repairs is a major problem.

"One of our saviors here is the baby boomers are starting to need wheelchairs. ... And they will not tolerate this."

Mark Schmeler, associate professor, University of Pittsburgh

Right now, wheelchair providers and manufacturers are paid upfront, sometimes as much as $30,000 for a complex wheelchair. But they often lose money on repairs, according to Schmeler’s research. He has proposed a monthly payment system that would task the companies with regularly maintaining and repairing the chairs. Under such a system, he argued, fewer breakdowns would mean more profit, providing a financial incentive for better-functioning chairs.

Schmeler doesn’t expect this new payment model will be adopted tomorrow, but he’s optimistic there will soon be a larger chorus calling attention to this issue.

“One of our saviors here is the baby boomers are starting to need wheelchairs. They won't admit it, but they are,” he said. “And they will not tolerate this.”

‘I Didn’t Want To Live In Fear’

Aurorah Arndt (left) shows Sarah Ferguson a wheelchair maintenance hack, while her dog Hunter sits nearby (Photo courtesy Aurorah Arndt)
Aurorah Arndt (left) shows Sarah Ferguson a wheelchair maintenance hack, while her dog Hunter sits nearby (Photo courtesy Aurorah Arndt)

At Wellesley College, Aurorah Arndt wasn’t willing to wait for baby boomers to age, or for disability advocates and the wheelchair industry to duke it out on Beacon Hill. At the rate things were going, she figured her 20s would evaporate before much improved.

“I didn’t want to live in fear of my wheelchair breaking down,” she said.

So, she uprooted her life and transferred to the University of North Carolina. She said the campus and the area were better equipped to support wheelchair users.

“I didn't know anyone,” Arndt said. “And it was honestly one of the best decisions I've ever made and one that I thank myself for regularly.”

At UNC, she helps run a wheelchair group that looks for hacks to solve common wheelchair problems. As part of that work, she decided to void the warranty on her chair and do her own repairs.

But, she said, she still misses Massachusetts and her college friends. And, she’d move back if conditions for wheelchair users started changing. From her perspective, it’s not just wheelchairs that need fixing — it’s the whole system that needs repairs.

This segment aired on March 10, 2022.

Related:

Gabrielle Emanuel Twitter Senior Health and Science Reporter
Gabrielle Emanuel is a senior health and science reporter for WBUR.

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