For the first time, despite the ‘right-to-repair’ law, there is no easy solution for wheelchairs

Robin Bolduk is not a person who says “no” to the answer – especially when it comes to fixing her husband’s wheelchair.

Her husband, Bruce Goguin, 69, is paralyzed with multiple sclerosis. And without his chair, he would be stuck in bed, at risk of pneumonia or a pressure sore that could cause sepsis and death.

When the components of the chair are worn or broken, the repair road is filled with obstacles. Recently, residents of Broomfield, Colorado had to replace a button that Goguin pressed with his head to control his wheelchair. They considered going through his wheelchair supplier for repairs.

“If we do, she’ll literally be in bed for months,” said Balduk, who is a member of the Colorado Cross-Disability Alliance with her husband, an advocacy group. “There is a problem with the quality of life – he may be lying in bed staring at the ceiling. He can’t move without a wheelchair. “

But, instead, the bulldozer tracked the manufacturer, ordered several buttons online for $ 20 each and discovered that the part was easy to replace.

“It’s a plug,” he explained. “It’s like charging your cellphone.”

The multibillion-dollar power-wheelchair market is dominated by two national suppliers, Nomination and National Seating and Mobility. Both are owned by private equity firms that seek to increase profits and reduce costs. One way they can do this is by limiting what technicians spend on repairs, which, when combined with insurance and regulatory hurdles, frustrates wheelchair users for timely solutions.

According to investment banking firm Provident, the $ 70 billion sustainable medical equipment market is an attractive target for private equity investment due to the aging population of the United States, the growing trend of chronic conditions, and the growing preference for home treatment for older adults. Healthcare Partners. Medicare’s use of competitive bidding is for large companies that can achieve scale economics in terms of production and administrative costs, often in terms of quality and customer service.

The regulations prescribed by Medicare and adopted by most Medicaid and commercial health plans have led to substandard products, no coverage for preventive maintenance and enough red ribbons to stop wheelchairs.

Power wheelchair users have long fought for the right to have their wheelchairs repaired by themselves or through an independent repair shop. Medicare and most insurance companies will replace complex wheelchairs every five years. Wheelchair suppliers who have contracts with public and private health insurance plans limit access to parts, equipment and service manuals. They usually keep a limited list of parts and wait until the health plans approve the repair claim before ordering the parts.

Some chairs require a software passcode or a physical key for any repairs. Wheelchair users who repair on their own may cancel their warranty or lose insurance payments for repairs.

“What bothers me is that the wheelchair company, knowing that the buttons have run out, will not put any stock,” Bolduk said. “They would risk my husband’s life, but they would not risk 20 20 to buy a button and would not be compensated.”

That may change soon. The Colorado Legislature has passed a first-country-right-to-repair bill for power wheelchairs that would allow owners and independent repair shops to access the equipment, embedded software, equipment, and documentation needed to diagnose, maintain, or repair. Services. Colorado Gov. Jared Polis is expected to sign the bill this month.

Mark Schmiller, an associate professor of rehabilitation science and technology at the University of Pittsburgh, says the right-to-repair bill may help, but it’s not the perfect solution. “There is a serious problem with wheelchair repairs, and customers are basically screaming for help,” he said.

Part of the problem, Schmiller said, is a Medicare decision not to cover the preventive maintenance of power wheelchairs. Many wheelchair users are unfamiliar or unable to perform routine maintenance such as bolt tightening or caster cleaning. As a result, problems are not resolved until something breaks, often leaving the user stuck.

In addition, Medicare officials have explained the law on payment for sustainable medical equipment to cover wheelchairs for home use only. As a result, many power wheelchairs are not designed for outdoor use and users are at risk of failure if they carry them outside. “It looks like you’ve been walking around wearing your slippers all day,” Schmeler said.

When Medicare adopted competitive bidding for sustainable medical equipment in 2011, it allowed large companies to reduce the price of small, local wheelchair stores. Pneumonia and National Seating and Mobility has been bought by many small companies and is now dominating the market.

Competitive bidding encourages suppliers to press manufacturers for low-cost wheelchairs, which encourages manufacturers to use substandard parts. According to a 2016 study published in the Archives of Physical Medicine and Rehabilitation, more than 1 in 4 repairs resulted in users getting stuck, losing a medical appointment or losing a job.

Wheelchair suppliers make a lot of money by selling wheelchairs and losing money on repairs. So there is little incentive to pay for hiring or training more technicians.

Suppliers have testified against the Colorado Bill. “The problem with this law is that it does not provide a good solution to the problems responsible for the delay,” said Seth Johnson, senior vice president of public affairs at Pride Mobility Products, Duria, a Pennsylvania-based power wheelchair supplier. . If repairs are made incorrectly, he said, the patient’s safety could be at risk.

Medicare regulations add to the problems with low pay and Medicare only pays for parts and labor, not for the travel time of technicians. Another reason for the delay: Medicare sometimes requires physicians to document that a person still needs a wheelchair and that it needs to be repaired.

Lamar, Kenny Mayestas of Colorado, has been in a wheelchair since his spinal cord was amputated in a 1987 rollover car accident. His wheelchair provider, located more than 150 miles away, does not schedule repairs when there is no other client nearby. A repair is needed. When his battery starts to die and does not hold a charge, he is connected to an outlet, the supplier cannot leave his house for more than 20 to 30 minutes at a time until the battery is replaced.

“It’s a broken system,” Mayestas said.

Julie Jennings, 56, of Denver, was diagnosed with multiple sclerosis in 1995 and is now unable to walk.

He even described a lengthy ordeal to fix a typical wheelchair – waiting for insurance to approve repairs before ordering supplier parts. The last time he needed a repair inspection – to replace the battery, armrest and a joystick controller – the whole process took three months.

“I try to be proactive, and I try to keep an eye on wear and tear,” he said.

The right to repair can help reduce the kind of delays that Mystas and Jennings have experienced by allowing users to purchase parts and repair wheelchairs themselves or call an independent repair shop.

Consumer advocates with the Colorado Public Interest Research Group say the power-wheelchair industry is the first sector needed to provide access to repairs that Massachusetts voters have approved a right-to-repair system for cars through the 2012 ballot initiative.

The carmakers have decided that they do not want to fight that war in all 50 states and have chosen to apply the same standards across the country.

Don Kleback, executive director of the National Coalition for Assistive and Rehab Technology, an industry group representing wheelchair suppliers, said it was unclear whether the industry would change its policy nationwide. “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 draft regulations that limit manufacturers’ ability to restrict the independent repair of their products. At least three right-to-repair bills have been introduced in Congress this year. Massachusetts and Pennsylvania are considering bills for wheelchair repairs.

For now, Bolduc is ready to go to any lengths to repair her husband’s chair. At one point, he snatched the key from a non-cooperating technician until he fixed the wheelchair. He then returns his keys and gives her a large candy bar to smooth things out.

“They will turn me into this crazy woman because my husband’s life is on the line,” she said. “If I have to kidnap someone to fix his chair, I’ll do it.”

KHN (Kaiser Health News) is a national newsroom that creates in-depth journalism about health issues. KHN is one of the three major operating programs of KFF (Kaiser Family Foundation), including policy analysis and polling. KFF is a non-profit organization that provides health information to the nation.

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