For The Disabled Community, The Pandemic Has Had Hidden Costs

Necessary technology and care for people living with disabilities has become much more difficult to come by in the last two years.
A participant in a wheelchair holds a sign at a Feb. 9 protest by Downstate New York ADAPT outside the New York City Council offices in Manhattan. Disabled activists and their supporters across New York criticized the state's refusal to repeal restrictions on home care access amid the pandemic.
A participant in a wheelchair holds a sign at a Feb. 9 protest by Downstate New York ADAPT outside the New York City Council offices in Manhattan. Disabled activists and their supporters across New York criticized the state's refusal to repeal restrictions on home care access amid the pandemic.
Erik McGregor/LightRocket via Getty Images

Two years of pandemic life have forced Crystal Evans to “play pharmacist.”

“I’ve been dealing with constant medical supply shortages through COVID,” said the 40-year-old, who has a genetic neuromuscular disease and a spinal cord injury from an accident.

Evans uses a ventilator and a wheelchair, but she’s had trouble finding supplies for both. A shortage of ventilator supplies means she’s had to use some equipment longer than she should, resulting in painful airway infections. She has been unable to get medicine from her regular suppliers, forcing her to find alternative sources for products she relies on, such as sodium chloride, sterile water and polyethylene glycol, a laxative.

And when she does find them, she’s had to cobble ingredients together — which her insurance company has declined to pay for, claiming they’re not covered.

Evans has also struggled with obtaining necessary home modifications, including equipment for an accessible kitchen. She’s been trying to replace the wheelchair ramp on her house since 2019, but now the cost of materials has more than doubled.

“I’ve been trapped in my home without one,” said Evans, who lives in Braintree, Massachusetts.

Supply issues have also made accessing wheelchair parts a challenge. She lost her wheelchair’s seat cushion, which could be adjusted with air to prevent pressure sores. During the weeks it took to get approval and delivery, Evans said, she was in “so much pain.”

And when the cushion’s metal valves had to be changed, she found that companies were out of them and carried only plastic ones.

“I can’t manipulate the plastic type,” Evans said. “I don’t have the dexterity.”

Supply chain shortages and shipping delays have affected many industries, but the medical equipment and supply industry has been hit particularly hard. A 2021 market report found that the pandemic had “exacerbated a global shipping and logistics crisis,” causing specific difficulty for “wheelchair manufacturers to obtain necessary products, components, and raw materials.”

Another report by Grand View Research found that the pandemic had significantly affected the supply chain for wheelchairs and that operations for wheelchair manufacturers and suppliers were paused across several countries during lockdowns.

“What people aren’t seeing is how COVID is impacting vulnerable people because of the services and supply shortages and everything else,” Evans said, adding that she’s spent $4,600 out of pocket on medical supplies to maintain her independence.

People with disabilities use a wide range of equipment. Complex rehabilitation technology (CRT), for example, is an umbrella term that includes many types of medically necessary and custom-made devices. Many also rely on what is known as assistive technology, which includes computer equipment, software and other products, and durable medical equipment such as walkers, canes, hospital beds, oxygen equipment, wheelchairs and blood testing strips for diabetics.

A CRT industry supplier told HuffPost it has seen median supplier lead times — the time it takes for a supplier to receive a product after it’s made the purchase order — increase by about 20 days. And the longer it takes for suppliers to receive their orders, the longer it takes for those products to reach the people who need them.

A Long Pause With Lasting Effects

Craig Moulden has worked in the CRT field for more than 20 years. As an assistive technology professional, Moulden helps fit clients for new equipment, modify existing pieces of equipment and evaluate what people need when they receive a new diagnosis. Some of that work has been possible via email and phone during the pandemic, but not in-person visits.

“Once COVID hit in the very beginning and doctors’ offices were shut down and therapy clinics were shut down, that pretty much, for a short period of time, shut us down,” said Moulden, who was working at Numotion, the nation’s largest supplier of mobility equipment, during the first two years of the pandemic.

Insurance companies often require clients to have face-to-face appointments with doctors before they will cover costs. But many clients were afraid to go to their doctors due to COVID-19 and put off those visits, while other doctors’ offices and clinics were closed. Clinics and hospitals also stopped sending physical therapists out for home consultations. But now that better protocols are in place and more facilities are equipped to work virtually, Moulden said those appointments have picked up again.

Tommy Roebig, a founding partner at the law firm Florin Roebig, said he has seen an increase in callers looking for help because insurance companies have made it difficult to receive rehabilitation technology and other services.

But Moulden, who now works at National Seating & Mobility, said the industry has made some advancements in the last two years on that front, like introducing more remote technology. For example, technicians can now link to a client’s power wheelchair wherever they are and read error codes.

“That’s kind of a game changer because most of the time in the past, a client called with an issue, we’d have to schedule an appointment to come out and see them,” Moulden said. “That’s just to put eyeballs on the situation, to identify it and say, ‘Yep, this is broken. We need to put in an order for that.’ Then we have to initiate the process of getting the quote and writing up the order.”

Numotion is also partnering with companies to allow them to do evaluations virtually. It’s part of a wider movement toward more telehealth services and telemedicine, which help providers reach those who are at higher risk of contracting the coronavirus.

Some of the changes that have been made during COVID are good, but the situation overall hasn’t necessarily gotten better, according to Marcie Roth, executive director and CEO of the World Institute on Disability, which focuses on key areas of accessibility and universal design, and works to advance the rights of people with disabilities.

“I am a person with a disability. My life’s work has been in disability rights,” Roth said. “Our lifelong work has been in moving research and policy into action. We operationalize inclusion.”

Getting customized equipment is “a lengthy process all the time” that has been made worse by a long period of “not being able to have people come into people’s homes, the supply chain — which may be as complicated as a chip issue or may be something as simple as something that is a widget stuck in a box on a boat somewhere,” Roth told HuffPost.

“They need to maximize my independence, so that way, people like me can free up the hours for the people who can’t go to the bathroom or eat without assistance.”

- Crystal Evans

Over 61 million people live with disabilities in the United States, and they face a much higher risk of COVID hospitalization and death than those who aren’t disabled. Roth noted that people experiencing long COVID may also develop disabilities. And during the pandemic, more than 200,000 residents and staff at long-term care facilities have died of COVID-19.

“There’s been lots of discussion about older people and people with underlying conditions, people who are frail or fragile, all these other euphemisms,” Roth continued, “but 96.3% of people in nursing homes have disabilities.”

Roth said the needs of the disability community have long been an afterthought — not just during the pandemic.

“We don’t fare well to begin with, and it is very obvious,” she said. “All the things that are impacting everybody else are disproportionately [affecting] people with disabilities.”

Increasing Demands, Decreasing Resources

Evans said she has a few advantages that make it a little easier for her to navigate the health care system. She works in health and disability policy and equity, and she’s more independent than many people with disabilities.

But Evans said she has been denied certain requests that help her maintain her independence, such as a power door opener, on the basis that she could have a patient care assistant “do it for me.”

“If I don’t need somebody here that often, why should somebody have to sit with me 50 hours a week in case I want to open a door?” she said.

Another example: Evans said she needs help with prepping meals for the strict diet she follows due to a metabolic disease, but she does not need assistance with actually eating.

“They denied an accessible kitchen on the basis that someone else could do it for me,” she said, adding that her insurance company also denied home-delivered meals.

“I need home [modifications] critically, badly, and everything costs more right now,” Evans added. “I have the labor. It’s just the supplies and supply chain issues.”

One important reason for fixing the current system and making it less bureaucratic, Evans said, is that it would help free up limited resources for others.

“They need to maximize my independence, so that way, people like me can free up the hours for the people who can’t go to the bathroom or eat without assistance,” she said.

Evans said she knows several people with neuromuscular diseases who have died during the pandemic due to home care shortages. In many cases, they experienced medical emergencies but were home alone because there were no personal care assistants available.

“Everything costs more right now ... I have the labor. It’s just the supplies and supply chain issues.”

- Crystal Evans

“One girl fell out of her wheelchair on the vent. The vent disconnected, and it ended up killing her because there was nobody to help her reconnect quickly,” Evans said. “It was a shift she just couldn’t staff.”

Mike Swinford, the CEO of Numotion, said the supply chain shortages — affecting everything from computer chips to wheelchair cushions — have driven all kinds of delays. On the other hand, “the demand side is spiking,” he said.

When the pandemic started in early 2020 and people started working remotely while in lockdown, Swinford said many Numotion customers were unable to access the equipment and services they needed due to COVID-related concerns. Because a lot of people put off getting equipment fixed, by the summer of 2021, “we started to see volumes, especially for service and repair, just spike through the roof.”

These problems are exacerbated by the complexity of health plans.

“To provide service or to provide new chairs,” Swinford said, “we typically have to do an evaluation, we have to get a prescription from a physician, we have to submit all the documentation even for service, in many cases, to the insurance provider to get prior authorization before we can actually fix something that’s already been prescribed.”

Authorization processes for a new wheelchair or service used to take about four days, he said, but now they take up to three or four weeks.

Wheelchairs typically have components from three to five manufacturers. Numotion purchases these components from companies that get parts from as far as Asia and Latin America.

Numotion’s website states that they “may occasionally need to adjust a previously communicated delivery date as component delays continue,” and it thanks visitors “for your patience as we all work through these highly challenging global supply chain issues.”

Swinford said he is hopeful that the statement will no longer be necessary moving forward. The record backlog peaked early last fall, and though demand is still high, Swinford thinks it is finally starting to flatten. But the underlying issues remain.

It’s a “bureaucratic, cumbersome process that desperately needs reform,” he said.

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