Despite the first-ever ‘Right to Repair’ law, there is no easy solution for wheelchair users

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State lawmakers are making it easier for people to repair their electric wheelchairs when they wear out or break, but murky regulations and manufacturers create significant barriers to nationwide reform. (Brian van der Brug/Los Angeles Times/TNS)

Robin Bolduc isn’t the kind of person who takes “no” for an answer, especially when it comes to fixing her husband’s wheelchair.

Her husband, Bruce Goguen, 69, is crippled by multiple sclerosis. And without his chair, he would be stuck in his bed, risking developing pneumonia or pressure sores that could lead to sepsis and death.

When chair components wear out or fail, the road to repair is littered with obstacles. Recently, residents of Broomfield, Colorado had to replace a button that Goguen presses with his head to control his wheelchair. They considered going through her wheelchair supplier for repairs.

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“If we did that, he would literally be in bed for months,” said Bolduc, who along with her husband is a member of the Colorado Cross-Disability Coalition, an advocacy group. “There is a quality of life issue – he could be lying in bed staring at the ceiling. He does not move without his wheelchair.

But, instead, Bolduc tracked down the manufacturer, ordered several knobs online for $20 each, and found that replacing the part itself was simple.

“It’s a catch,” she explained. “It’s like charging your cell phone.”

The multi-billion dollar electric wheelchair market is dominated by two national vendors, Numotion and National Seating and Mobility. Both are owned by private equity firms looking to increase profits and reduce expenses. This includes limiting spending on technicians and repairs, which, combined with insurance and regulatory hurdles, frustrates wheelchair users looking for quick fixes.

The $70 billion durable medical equipment market has been an attractive target for private equity investment due to the aging US population, rising prevalence of chronic diseases, and growing preference for older people to be treated at home, according to investment banking firm Provident Health Partners. Medicare’s use of competitive bidding favors large companies that can achieve economies of scale in manufacturing and administration costs, often at the expense of quality and customer service.

Regulations set by Medicare and adopted by most Medicaid and commercial health plans have led to substandard products, no coverage for preventative maintenance, and enough red tape to shut down wheelchairs.

Electric wheelchair users have long fought for the right to repair their wheelchair themselves or through independent repair shops. Medicare and most insurance companies will only replace complex wheelchairs every five years. Wheelchair suppliers who have contracts with public and private health insurance plans limit access to parts, tools and service manuals. They typically keep a limited inventory of parts and wait for health plans to approve repair requests before ordering parts.

Some chairs require a software code or physical key for any repairs. Wheelchair users who repair themselves may void their warranty or lose insurance payments for repairs.

“What bothers me is that the wheelchair company, knowing the buttons wear out, doesn’t keep any in stock,” Bolduc said. “They’re risking my husband’s life, but they’re not risking $20 to buy a button and not get a refund.”

That could soon change. The Colorado Legislature has passed an initial Right to Repair bill for electric wheelchairs that will allow owners and independent repair shops to access the parts, integrated software, tools and documentation needed to perform diagnostic, maintenance or repair services. Colorado Governor Jared Polis signed the bill into law this month.

The right to repair bill can help, said Mark Schmeler, associate professor of rehabilitation science and technology at the University of Pittsburgh, but it’s not a perfect solution. “There is a serious problem with wheelchair repairs, and consumers are basically crying out for help,” he said.

Part of the problem, Schmeler said, is a decision by Medicare not to cover preventative maintenance for electric wheelchairs. Many wheelchair users are unfamiliar with routine maintenance, such as tightening bolts or cleaning casters, or are unable to do so. As a result, issues aren’t fixed until something breaks down, often leaving the user stranded.

Additionally, Medicare officials have interpreted the law establishing payment for durable medical equipment to cover wheelchairs only for home use. Therefore, many electric wheelchairs are not designed for outdoor use and are prone to breakdowns when users take them outdoors. “It’s like walking around outside all day in your slippers,” Schmeler said.

When Medicare passed tenders for durable medical equipment in 2011, it allowed big companies to cut prices from small, local wheelchair stores. Numotion and National Seating and Mobility have taken over many small companies and now dominate the market.

Tenders encourage suppliers to lobby manufacturers for lower cost wheelchairs, which in turn encourages manufacturers to use lower quality parts. According to a 2016 study published in the journal Archives of Physical Medicine and Rehabilitation, more than 1 in 4 repairs results in blockage, missed medical appointments, or missed work.

Wheelchair suppliers make most of their money selling the wheelchair and tend to lose money on repairs. So there is little incentive to hire more technicians or pay for training.

The suppliers testified against the Colorado bill. “The problem with this legislation is that it doesn’t provide a good solution to address the issues responsible for the delays,” said Seth Johnson, senior vice president of government affairs for Pride Mobility Products, a Duryea-based electricity provider. , Pennsylvania. wheel chairs. If repairs are not done properly, he said, patient safety could be compromised.

Medicare regulations compound the problems, with low reimbursements, and Medicare only pays for parts and labor, not technician travel time. Another cause of delay: Medicare sometimes requires doctors to document that a person still needs a wheelchair and that it needs to be repaired.

Kenny Maestas of Lamar, Colorado, has been in a wheelchair since his spine was severed in a rollover accident in 1987. His wheelchair supplier, located more than 150 miles away, will not be scheduling a repair visit unless he has another customer nearby who needs repair. When his battery begins to drain and no longer holds a charge, he becomes tethered to an outlet, unable to leave his home for more than 20-30 minutes at a time until the provider replaces the battery.

“It’s such a broken system,” Maestas said.

Julie Jennings, 56, of Denver, was diagnosed with multiple sclerosis in 1995 and can no longer walk.

She described a long ordeal to get even a simple wheelchair repair – the supplier waited for the insurance to approve the repair before ordering the parts. The last time she needed a repair visit – to replace the battery, armrests and a joystick controller – the whole process took three months.

“I try to be proactive and try to keep an eye out for wear and tear,” she said.

The right to repair could help reduce the kind of delays Maestas and Jennings have experienced by allowing users to buy the parts and repair the wheelchairs themselves or use independent repair shops.

Consumer advocates from the Colorado Public Interest Research Group say the electric wheelchair industry is the first sector required to provide repair access since Massachusetts voters approved a right-to-repair measure for cars. through a ballot initiative in 2012.

Automakers decided they didn’t want to fight this battle in all 50 states and chose to apply the same standard nationwide.

Don Clayback, executive director of the National Coalition for Assistive and Rehab Technology, an industry group representing wheelchair suppliers, said whether the industry would change policies nationwide was unclear. “We expect the changes to be limited to Colorado,” he said.

Last year, President Joe Biden issued an executive order directing the Federal Trade Commission to write regulations limiting manufacturers’ ability to restrict independent repairs of their products. At least three right to repair bills have been introduced in Congress this year. Massachusetts and Pennsylvania are also considering wheelchair repair bills.

For now, Bolduc is ready to do anything to have her husband’s chair repaired. Once she took the keys from an uncooperative technician until he fixed the wheelchair. She then returned his keys and gave him a large candy bar to smooth things over.

“They’re going to turn me into this crazy thing because my husband’s life is at stake,” she said. “If I have to kidnap someone to fix their chair, I will.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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