.... What they don’t always have is wheelchairs that work.
By ED STANNARD | estannard@courant.com | Hartford Courant
April 11, 2023 at 6:30 a.m.
Maureen Amirault has muscular dystrophy and has used a specialized wheelchair for about 2½ years. She’s been waiting for it to be repaired for most of that time.o“I have a repair issue regarding just being fitted properly to the wheelchair and that has been outstanding since July of 2021,” said Amirault, 46, of Wethersfield. She needs new foot plates and other adjustments to her motorized wheelchair, which is causing problems with her feet and bruising.
“It’s taken so long,” she said. “It’s been since almost two years, and it still isn’t rectified. It took me about 18 months just to get them to call and come and make another appointment with me.” Someone finally arrived two weeks ago, but didn’t make a permanent fix.
Amirault is among the hundreds of specialized motorized and manual wheelchair users in Connecticut who cannot get repairs to their wheelchairs made in a timely way. Many cannot live their lives in any normal way without their chairs.
That’s why they were disappointed that a bill before the General Assembly that would regulate the two large companies that control the specialized wheelchair market failed to be approved by the Judiciary Committee before the deadline.
The bill would have required the companied to respond to a request for service within three business days, to have replacement parts on hand or available overnight, to replace a wheelchair under warranty within four business days and to staff a 24/7 call center to receive requests. However, wheelchair users and disability advocates say the bill isn’t necessarily dead and could return in some form.
Jonathan Sigworth, an advocate with the consumer coalition who uses a wheelchair because of a spinal cord injury, said, “we are not giving up. This is just too important for our health and safety, and basic independence, to let it go yet another year. We are going to keep fighting until the central parts of this bill get passed by the legislature, one way or another — this year.”
David Morgana, another advocate who is a wheelchair user, said, “wheelchair consumers are aware that lobbyists for the industry have been saying that they are willing to sit down to talk to consumers about the serious issues with delays in getting repairs. But I am very well connected in the disability advocacy community and I am not aware of any of us ever having been approached by the industry to talk about potential changes in their business practices to address the severe delay issues, despite their lobbyists being fully aware of the consumers who are leading the fight for this relief.”
Sheldon Toubman, the litigation attorney at Disability Rights Connecticut, said “the paid lobbyists for the huge national companies directly responsible for these delays seemed to have killed the bill for now by saying to legislators that they would of course meet with the consumers and their advocates to try to work this out.
“But they have not done so yet. We will take them at their word that they want to meet soon to hear what needs to be changed in the way they do business, to finally address wheelchair consumers’ needs, which have for so long been ignored. We look forward to meeting because wheelchair consumers’ problems can’t wait — we just hope the industry is serious about real remedies.” he said.
Amirault said the lack of response to repair requests is detrimental to her health. She said she is “sitting improperly and putting my weight improperly on my feet. My feet are turned in and putting all my weight on my ankles and so even when I walk, I can’t walk. When I transfer it’s very difficult.” Even the temporary adjustments the repair person made are “making it difficult for me to get around because I can’t manage doors. I can’t open and shut them because I can’t reach. It’s too far back,” she said. She’s been given loaner chairs, but they are not fitted to her.
“When I don’t have a wheelchair, then I’m just stuck in bed because I can’t do anything,” Amirault said. “And I can’t make my meals, I can’t do anything and … I don’t have a caregiver because usually I’m very independent.”
She said the bill would “help because it will hold the wheelchair companies accountable to be proactive when dealing with a repair and not just letting a repair sit for weeks without handling it.”
Toubman said a prompt response is the biggest issue for people with disabilities who use wheelchairs. “This part is not that complicated. It is that there is a requirement that they come out within three business days to assess, and if it’s fixable, then they should. That’s kind of obvious,” he said. “Beyond that, there’s the question of, OK, but what’s a timely repair? Because neither of those things talk about, Yeah, but how long do they have to fix?” he said. That would be addressed through a provision of the bill that would create a 50/50 stakeholder group, convened by the Department of Aging and Disability Services and the commissioner of consumer protection and including the wheelchair companies, to determine what is reasonable, Toubman said.
“It really depends on the … kind of repair,” he said. “Is it a frame? Is it a battery? A tire is nothing but if it’s a frame that could be more complicated, and then there’s electronics. So it could be a variety of things that have gone wrong.”
The provision to have parts available overnight has become important because, unlike when small companies would stock common parts like wheels and bearings, two companies, Numotion and National Seating & Mobility, have a duopoly in the market and don’t keep parts readily at hand locally.
“All the users say this is a constant, constant problem that even basic things like batteries is that they don’t have them,” Toubman said. “So they have to order them.”
A spokeswoman for Numotion, based in Brentwood, Tenn., issued a statement saying, “Mobility and independence are absolutely critical to our customers. Numotion acknowledges the areas this bill highlights are real challenges, and we have been working diligently with consumer groups and industry representatives to address them. We are actively engaged with Connecticut policy makers to develop meaningful, equitable and sustainable solutions.”
National Seating, based in Nashville, could not be reached for comment.
Another issue, which consumers and the companies agree on, is ending the requirement of prior authorization by insurance companies. “One of the big areas that’s been a problem has been the insurance companies make prior auth really burdensome on purpose,” Toubman said.
“That’s the whole goal is to wear people out so they give up. And so that’s a real problem for repairs,” he said. “And it’s particularly wrong because the companies, the two wheelchair suppliers, don’t make that much money on repairs.”
While the bill bans prior authorization for private insurance and Medicaid, it does not for Medicare, because it’s a federal program with different rules, Toubman said.
Joe Shortt, 42, of Southbury, has been a quadriplegic since 2002, when he was hit by a drunken driver, though he has limited use of his arms. He uses a manual wheelchair, which is covered under the bill.
“I’ve had multiple times where I’ve been waiting, one time it was well over a year that I was waiting on parts,” Shortt said. “But the average is at least a couple of months. And you run into other issues, pressure sores, other avoidable injuries. And a lot of times, your choice is either stay in bed or use broken equipment while you’re waiting for parts.”
Shortt is independent with his wheelchair. “I work full time. I have a family. I can’t lay in bed if my son needs to go to school because he missed the bus. Oh, then I’ve got to deal with broken equipment in order to be able to continue life.”
He said “the biggest holdup is waiting for the insurance to give that authorization,” which is why he’s glad for the provision to eliminate prior authorization.
Shortt is lucky. He has a backup wheelchair that is exactly like his own. He can’t use a loaner because his chair has a lockdown feature so he can drive from his wheelchair. “And in the last six years that I’ve had it, I put 2,000 miles on it as a backup” while his main chair was waiting for repairs.
He said in 20 years he’s probably had more than 100 repairs to his chair. “And it’ll usually take two to three months for me to get those parts,” he said. “And by the time they come out, in order to be able to put those parts in, I started an order for different parts. So I pretty much usually always have a revolving service order.”
Jonathan Sigworth thought his wheelchair needed a simple fix. “I had a non-emergency repair where I just needed to replace some bearings,” he said. “And I was very surprised, the first time someone showed up, probably about a month after the initial call, and they had the wrong parts.
“But also not only that, they were told that they should replace the entire wheel system, which costs $2,000, as opposed to just replacing the ball bearings, which costs about $5. And as someone who was on private insurance, this would leave me paying $1,000 deductible.”
Luckily, the technician, on the third call, was able to replace the bearings himself. “But he said, yeah, most technicians wouldn’t be able to do that,” Sigworth said. “Some of them are not even trained to replace a flat tire like a bicycle-type thing. Instead, it’s been customary for them just to replace the whole wheel, which costs $2,000.”
It comes down to a thin profit margin, Sigworth said. “I’ve since learned that insurance companies do not reimburse the wheelchair dealers for the travel time and really the time driving around doing service,” he said. “They only reimburse these companies for the time doing the repair and the parts. So there’s a financial incentive for them to make up lost time by just replacing something that will give a big investment.”
Sigworth, 36, lives in Stratford and runs a nonprofit from his home, More Than Walking. He likes the provision about prior authorization because he thinks it’s redundant.
“Whenever we get a prescription for a wheelchair in the first place, we are forced by our insurance to go back to the same dealer for all repairs and the wheelchair has already been an approved piece of durable medical equipment by our insurance,” he said. “So it stands to reason that our insurance would continue to pay for the repairs related to it.
“The bottom line is, without this legislation, the wheelchair users have nothing. I have no platform for advocacy,” Sigworth said. “The dollars are coming from our insurance and that is why, as the people who are most affected by the business policies, by the insurance policies, because we’re not giving the dollars and we don’t have that as leverage, the only leverage we have is legislation. … There’s nothing else requiring them to do it in a timely and safe and effective way.”
Ed Stannard can be reached at estannard@courant.com.