I’m a disabled registered nurse, and I was in Harrisburg advocating for improved healthcare access for myself and other disabled Pennsylvanians when my less-than-six-month-old wheelchair decided it had had enough.
I was traveling from one part of the city to another when the rubber separated from one of the front caster wheels. Think of a car tire losing its tread, except this wasn’t a car. I couldn’t pull over, call AAA, and wait for a tow truck. This was my wheelchair — my legs, for all practical purposes. And I was stuck.
I managed to push, pull and drag myself to the office I was supposed to be at. I called the durable medical equipment company that sold me the chair and explained that it needed repairs. They told me it would take a while. A while?
Apparently, being stranded in our state capital with a broken wheelchair didn’t qualify as particularly urgent.
I ended up riding into my meeting in a wheeled office chair while frantically calling local companies to find a mobility scooter. I needed to get back to my hotel and, eventually, home. Thankfully, a local company came through.
I had the knowledge, confidence and financial resources to find another way to get around. As a registered nurse who works with disabled people, I am painfully aware that many don’t have those advantages.
What happens to someone who lives on a fixed income and cannot afford to rent another mobility device? Someone who doesn’t know whom to call?
I’m relatively fortunate. But luck shouldn’t determine whether a disabled person can get home.
Equipment enables opportunity
I was born with spina bifida, a congenital condition affecting the spine and spinal cord. I’ve lived with a disability for 61 years. I grew up at a time when expectations for children with significant disabilities weren’t particularly high.
Yet here I am, with a bachelor’s degree, working with adults with spina bifida and advocating for disabled people across Pennsylvania. I’ve served on boards, worked with disability rights organizations, and become a member of the Governor’s Advisory Commission for People with Disabilities. I’ve spent much of my life challenging other people’s assumptions about what disabled people can accomplish.
I’m proud of what I’ve done, but I don’t consider myself extraordinary because I happen to have a disability and a career. Disabled people work, raise families, volunteer, travel, contribute to their communities and do all the other things people do. We just sometimes need equipment to make those things possible.
Increasingly, I find my professional and personal lives intersecting in ways I wish they didn’t. As a nurse, I see how difficult it can be for people to obtain the equipment and supplies they need. As a disabled person, I experience those difficulties myself. The same systems I help patients navigate are the systems I depend on. And from both sides, I see reasons for concern.
Complications with consequences
Getting a wheelchair isn’t like walking into a store and picking out a new bicycle. There are evaluations, prescriptions, documentation requirements, insurance approvals and suppliers. Depending on the equipment, the process can take months. And once you have your wheelchair, you generally can’t just replace it because it doesn’t work properly.
Under Medicare rules, there are a few situations in which replacement of durable medical equipment can be expedited, but it’s generally assumed to have a useful lifetime of five years.
Five years? My wheelchair started falling apart before it was six months old. The rules may make sense when you’re trying to prevent unnecessary spending. They make considerably less sense when the equipment is essential to someone’s ability to function.
In my professional work, I’ve encountered the frustrations of trying to obtain equipment and supplies for patients. Coverage requirements, documentation, reimbursement concerns and a supplier’s willingness to pursue a difficult claim can all affect whether someone gets what they need. It’s a complicated system, and I don’t believe every problem can be blamed on a company or an insurance policy.
But for the person who needs the equipment, the complications have consequences. A delayed wheelchair repair can mean missed work, canceled medical appointments, lost income or being unable to leave home. These are not minor inconveniences. They’re interruptions to people’s lives.
Turning to duct tape
You might think my Harrisburg adventure was the end of the story. Not even close. After the caster incident, the drive-assist system on my wheelchair broke in a way that I was told the repair people had never seen before. Apparently, my wheelchair enjoys being unique.
Fortunately, that problem turned out to be an easy fix.
The caster wheels were another matter. It took approximately two months and several phone calls before I finally received larger, sturdier front casters. I was told the parts weren’t kept in stock and had to be shipped from overseas.
There’s something ironic about American-made or American-assembled equipment when replacement parts have to travel halfway around the world. I don’t object to international manufacturing. I object to being unable to use essential equipment because replacement parts aren’t readily available.
While I waited, I used my old wheelchair. It was over five years old, bulkier and harder to put in my car. It didn’t move as well, and its drive assist no longer worked. There were very good reasons I had needed a new one.
Finally, I had a wheelchair with drive assist again, plus new front casters. Everything seemed to be functioning as it should. And then the seat panel ripped at the seams. Yes, the seat. The part I actually sit on. At this point, I began wondering whether I should have the wheelchair blessed, exorcised or simply pushed off a cliff. Duct tape, fortunately, is a marvelous short-term solution.
The seat panel has since been replaced with a solid panel rather than another fabric one, at a cost of $130 in copays. Apparently, if I want to go to work tomorrow, I have to pay $130 to make sure I don’t end up sitting on the ground. My other option, I suppose, is to invest in more duct tape. I find it absolutely ridiculous that I have to pay yet again to repair a wheelchair that isn’t even a year old, just so I can safely go to work and earn the money to pay for the repairs.
Lemon laws for wheelchairs
From Oct. 6 to 8, I was back in Harrisburg, this time in my nearly repaired wheelchair. The seat was still awaiting replacement. Nothing says independence quite like traveling to the state capital in a wheelchair held together, at least in part, by duct tape.
Other states have begun addressing some of these problems through right-to-repair laws and consumer protections for assistive devices. Colorado’s wheelchair right-to-repair law, effective in 2023, requires manufacturers of powered wheelchairs to make parts, tools, software and repair information available to owners and independent repair providers. That gives consumers more options instead of leaving them dependent on a manufacturer’s authorized repair network. But right to repair doesn’t automatically guarantee a replacement part will arrive tomorrow.
Minnesota offers another example. Under its assistive-device warranty law, when a qualifying covered repair takes longer than 10 working days, the manufacturer must provide a temporary replacement or reimburse the consumer for renting one. The law also addresses repeated failures. Oregon also has warranty protections for defective assistive devices.
Think about how different my experience in Harrisburg might have been if I’d had a clear right to a temporary mobility device while waiting for repairs.
We often hear about lemon laws for automobiles. Why shouldn’t there be meaningful lemon-law protections for manual and powered wheelchairs? If a brand-new car repeatedly broke down, consumers would reasonably expect the manufacturer to fix it or, under qualifying circumstances, replace it. But when my wheelchair repeatedly fails, I’m expected to keep waiting for repairs. And unlike a car, my wheelchair isn’t something I can leave parked in the driveway while I borrow another one.
Even having an old wheelchair available isn’t necessarily a solution. A worn-out chair may not provide adequate positioning, support or comfort, potentially causing pain, skin problems or other complications. We should be asking why essential mobility equipment isn’t held to stronger standards for reliability, timely repairs and replacement. And we shouldn’t just ask manufacturers, insurers or suppliers. We should ask disabled people — those whose lives are affected — what happens when their equipment fails.
My recent trips to Harrisburg have reminded me why I became a disability rights advocate in the first place. I want every disabled Pennsylvanian to be able to depend on the equipment they need to live their lives. When that equipment breaks, there should be a reasonable way to get it repaired. And when a nearly new wheelchair repeatedly fails, there should be protections for the person who depends on it.
My wheelchair may be cursed, but I shouldn’t need an exorcist, a roll of duct tape and a healthy bank account to keep moving. Necessity may be the mother of invention, but disabled people shouldn’t have to invent their way around injustice. It’s time to repair the system, not just our wheelchairs.
Monica Albert Still is a disabled registered nurse and disability rights advocate in the Pittsburgh area. She can be reached at disabledgoddess.contact@gmail.com.
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