Of all the things that could go wrong with his motorized wheelchair, Franklin Pineda-Lopez figured fixing a broken armrest would be “a piece of cake.”
All he needed was a small part that attached the left armrest to the chair’s frame.
That was February 2022. About three months after he reported the failure, National Seating and Mobility (NSM), which had close to $700 million in annual revenue as of June, sent a technician with a new part — but for the wrong armrest. Four months after that, another technician arrived with a part made for manual chairs, also useless.
At each step, Pineda-Lopez, 33, juggled calls with doctors, MassHealth, and NSM. Most calls to the wheelchair supplier led to a voice mailbox, never to be returned. As months passed, Pineda-Lopez, who was paralyzed 31 years ago after being hit by a drunk driver, got in the habit of leaning to the right in the chair to avoid falling out the unprotected left side, causing near-constant discomfort that still persists.
He finally received the correct piece this spring, more than one year after first seeking the replacement part.
“The feelings are anger and frustration,” said Pineda-Lopez, a Brookline advocate for people with disabilities, “because my hands are tied and there’s nothing I can do in the moment.”
For the nation’s roughly 5.5 million wheelchair users, repairs that take weeks, months even, are the norm. In some cases, people can be trapped at home, a helpless feeling Pineda-Lopez compared to drowning.
Wheelchair users and advocates agree there’s no single reason why repairs take so long. Getting insurers to authorize repairs can take weeks, and fixing a chair may require multiple in-person visits that can be time-consuming and difficult to schedule. Nationwide, though, advocates and wheelchair owners are increasingly viewing the $59.7 billion durable medical equipment industry as a major cause of the problem. Companies’ repair teams are understaffed, overworked, and aren’t maintaining a readily available supply of parts, experts said.
More than a dozen states have taken steps to reform the repair process. California passed legislation that eliminated the need for insurance authorization for some repairs to power chairs, though the governor vetoed it this month. Other states have provided better access to loaner chairs, mandated longer warranties, or expanded the pool of businesses eligible to repair wheelchairs. Now, wheelchair users are looking to the Massachusetts Legislature to impose similar protections.
“Where people who use wheelchairs have little to no bargaining or market power right now, we’re providing a really basic level of consumer protection,” said Senator John Cronin, a Democrat from Worcester, who is sponsoring a bill to address slow repairs.
In Massachusetts, about 10 percent of the population have disabilities that impede mobility, according to the Centers for Disease Control and Prevention, though disability advocates say they aren’t sure how many are wheelchair users.
The wheelchair supply industry is dominated by two companies, NSM and Numotion, which service MassHealth recipients. Both agree that repairs take too long, and cite the process of obtaining insurance authorization, supply chain problems, and labor shortages as factors.
An NSM spokesperson said the industry suffers from “service and repair challenges.”
“National Seating & Mobility continues to work alongside other industry and consumer organizations to passionately advocate for changes to address these challenges,” said Angie VanTassell, a spokesperson for the company, in a statement.
In its own statement, Numotion agreed: “The current ecosystem for service and repair is inadequate and must be improved.”
Diane Racicot, an NSM vice president, testified in May before a Massachusetts legislative committee that the company’s 28 technicians handled more than 10,000 repair requests in 2021, in part because the company is used to repair other suppliers’ chairs. Typically, manufacturers say, they lose money on repair work.
Modern wheelchairs are expensive. Pineda-Lopez estimated his power chair retails for between $35,000 to $40,000, not unusual for a customized, complex power chair. Less complicated chairs typically cost thousands of dollars. The pursuit of profits, experts said, is leading big national companies to invest less in repairs.
“They want to focus on selling the product, because that’s where they make money, and not on the customer service,” said Rick Glassman, director of advocacy at the Disability Law Center.
Both private equity firms declined to comment.
Wheelchair users constantly live with the possibility of a serious failure. About 56 percent of users reported needing at least one repair on their chairs within a six-month period, a 2021 University of Pittsburgh survey found.
“I’ve had things fall off in weird places,” including in Morocco’s High Atlas Mountains and in a New Mexico canyon, said Jackie Miller, a retired molecular biologist and science educator.
She has coped with delays and ineffective repairs from both Numotion and NSM, she said. In May, a technician from NSM measured the 75-year-old Miller for a chair to replace one that’s nine years old. She finally got the new chair in August, but shortly after that, the right brake failed — twice. One wheel, designed to be removable, was nearly impossible to detach.
Miller, who suffered a spinal injury in 1997, needs a lightweight titanium chair that she can lift into her car. The new chair is heavier, and although she can’t get confirmation from the company, she suspects it is aluminum.
It now sits empty in Miller’s Brookline apartment. Over the past month she has tried repeatedly to get NSM to reclaim it, but has heard nothing back.
Cronin’s bill would require two-year warranties on new chairs, a period during which chair owners could avoid the cumbersome insurance authorization process, advocates said. Companies would have to assess chairs in need of repairs within three days if a chair is unusable, and provide a temporary replacement chair, if needed, within four. A supplier would have to provide a new chair or a refund if repeated attempts at repairs don’t work. If the warranty isn’t honored, the attorney general could sue for damages on behalf of a chair owner.
An identical bill passed the Senate last session, but the House never acted.
Federal action could help, Cronin said, but in the nation’s current political climate it’s likely that states will have to lead on the issue.
Industry representatives oppose the legislation, saying that the bill’s deadlines are unrealistic, and that extending warranties wouldn’t address the backlog of work that repair teams face.
“A patient who is using equipment outside of the warranty period but whose need is more urgent should not get bumped from the schedule because a nonemergency repair falls under this proposed bill,” said Wayne Grau, executive director of the National Coalition for Assistive and Rehab Technology, an industry trade group.
Another bill under consideration would eliminate prior authorization for wheelchair repairs, but advocates for people with disabilities oppose it because it doesn’t include longer warranties or guarantee speedier repairs or other remedies for people whose chairs break down.
MassHealth does not require prior authorization for repairs costing less than $1,000, which accounts for about 90 percent of all repairs, the state Medicaid administrator reported. Private insurers’ policies vary, according to the Massachusetts Association of Health Plans, with some requiring prior authorization. A spokesperson for Blue Cross Blue Shield of Massachusetts said in a statement that the authorization process ensures that repairs “are necessary and appropriate.”
State legislation cannot eliminate Medicare’s prior authorization requirements.
Cronin said his legislation is a response to an industry dominated by two companies that have squeezed out competitors that could force them to provide better service.
The result can be devastating. Among people whose chairs need repairs, 42 percent experienced a negative consequence, including missing an event or being unable to get out of bed, the University of Pittsburgh study found.
During the May hearings for Cronin’s bill, one speaker, Pamela Daly, of Charlestown, described suffering a broken hip six years ago when a caster, the fork-like bracket that holds front wheels, fell off her wheelchair. She missed 10 weeks of work at the United Spinal Association and was stuck at home, she said, but not because of her injury. It just took that long to replace the small, four-pound part.
“I don’t think that any able-bodied person today would stand for this kind of bungling and red tape,” Daly testified.