How ‘worst business model in the world’ redefines the road back from traumatic injuries

Emily Traveller was a 16-year-old American Fork High School sophomore on a double date at Little Sahara Sand Dunes in central Utah in the spring of 2022 when an UTV accident changed her life forever.

Traveller and her group were near the end of their outing and headed back to the parking lot when the side-by-side vehicle she was riding in rolled down an embankment. She hit her head on the roll cage and was knocked unconscious. When she woke up, she knew something was terribly wrong.

“I immediately couldn’t feel anything,” Traveller said. After being airlifted to Utah Valley Hospital in Provo, she learned she had sustained a high cervical spinal cord injury.

“I’m a C4 quadriplegic,” she said. “In the beginning, I could move nothing from my neck down.”

Following her accident, Traveller, now 21, was treated by specialists at Denver’s renowned neurorehabilitation facility, Craig Hospital. She spent four months there, starting her recovery journey in a place that would become a protective environment where everyone understood what she was going through. But when it came time to return to Utah, Traveller found the prospect of going back to “real life that I wasn’t sure I was ready for” frightening.

But a unique Utah facility, itself born of a horrible accident, would become a place of rehabilitation and belonging for Traveller as she and her family adjusted to her new abilities.

“I immediately started going to Neuroworx and literally couldn’t have had a better place,” she said. “The people here are incredible.”

Traveller said the center helped her physically, but also emotionally and socially.

“Coming here was my workout, and it was my social hour too,” she said. “Obviously people come here to do their physical therapy, but it’s mental as well.”

A place of hope born of trauma

Neuroworx co-founders Dr. Dale Hull and Jan Black met after Hull suffered a spinal cord injury in a trampoline accident in 1999. Hull said inpatient therapy following the incident, which left him paralyzed from the upper rib cage down, helped him regain some neurological function. But he learned that the traditional insurance-driven therapy model was not going to provide the support he needed.

“I quickly realized that the insurance limitations were going to prevent the therapist from working on me where I want,” Hull said. “I wanted this opportunity to make more progress, and they were just hamstrung by the system.”

Seven months after his accident, Hull met Black, whom he said he immediately recognized as a uniquely gifted therapist. Working with Black through an intensive rehabilitation regimen, Hull recovered to a point where he was able to carry the Olympic torch at Salt Lake City’s 2002 Winter Games, a moment he refers to, jokingly, as his “15 minutes of flame.”

But that journey would lead to a revelation about the broader world of neurological rehabilitation and recovery.

“Along the way, I met a lot of people who had been paralyzed who wanted what I was getting from an extraordinary therapist,” Hull said.

Black had long worked in inpatient rehabilitation settings as well as providing home care for patients with spinal cord injuries when she and Hull met. She recalled that earlier in her career, patients with spinal cord injuries might receive four to six months of inpatient rehab, but by the time she and Hull began working together, the system had changed.

While Hull was able to pay out of his own pocket for extended, in-home therapy, Black said the typical limits by insurers on rehabilitation sessions for those recovering from spinal cord or other neurologic injuries, regardless of the severity, are 20 to 30 one-hour sessions. And those individual sessions, after subtracting time for paperwork and administrative duties, shrink to about 48 minutes, Black said.

“You have to give these people more time,” Black said. “It’s insane to think that any therapist is going to get anywhere, get anyone back to some sort of functional ability, in that timeframe.”

How much function any one person might regain varies widely. The Neuroworx founders note that no two cases are the same. Hull was able to walk again. He led the Deseret News on a tour of their building with the aid of a walker.

Taking the time to heal

That recognition would shape Neuroworx’s core philosophy, that the rehabilitation journey for those recovering from neurologic injuries or living with neurologic disorders is one that requires time, individualized care and access.

In 2004, Hull and Black launched their new rehab business in a 1,000-square-foot space in a strip mall. Now, they’re in a 24,000-square-foot, purpose-built facility in Sandy, serving clients from all over the country. From the start, they knew that a conventional business approach wouldn’t work for the goals they had in mind.

“We knew that financial barriers needed to be addressed, so we created the nonprofit,” Hull said. “We said, OK, we’re going to try and do this a different way. We’re gonna give people what they need, not what we can bill for. What I always say is that it was the worst business model in the world.”

Black said the timing of the launch benefitted from a heightened awareness of neurological injuries, and recovery challenges, thanks to actor Christopher Reeve.

Reeve, perhaps best known for playing Superman in a series of films in the ‘70s and ‘80s, was paralyzed from the neck down following a 1995 horseback riding accident. He spent the latter part of his life advocating for increased funding for spinal injury research and better health insurance coverage for those recovering from neurologic injuries. Black said Reeve’s message helped people realize they should not be forced to give up early on recovering from spinal cord injuries.

“I think a lot of people have a very hard time with hearing, ‘You’re paralyzed, you’re going to be in a chair for the rest of your life,’ so early on in their recovery,” Black said. “Being able to give patients the chance to say, ‘Let me do everything I can before I decide that I’m going to be OK, whatever that turns out to be,’ is very important.”

According to data from the National Spinal Cord Injury Statistical Center, posted by the Christopher and Dana Reeve Foundation, the annual incidence of spinal cord injury is about 54 cases per one million people in the United States, or about 18,000 each year.

The estimated number of people with spinal cord injuries living in the U.S. is approximately 302,000, according to the center. Its data tracking also shows that vehicle crashes are the most recent leading cause of injury, closely followed by falls. Acts of violence —primarily gunshot wounds — and sports/recreation activities are also common causes.

Expertise meets high-tech equipment

Neuroworx leverages a combination of advanced equipment and skilled, specialized clinicians to provide rehabilitation services to their patients, and Hull and Black are proud to note that while there is a waiting list, the center has never turned away a patient. About a third of Neuroworx patients have tapped out on insurance coverage but thanks to the generosity of donors and sponsors, the facility is able to operate on a patient-intensive model that would be unfeasible in a for-profit setting.

The expansive facility is made up of dedicated spaces that house a broad range of therapy settings, including a small pool and different types of equipment. Some of the equipment is designed to provide various levels of physical support or “unweighting” to assist patients in their rehab exercises.

Black explained that unweighting reduces the burden of gravity so patients can practice movements otherwise unavailable to them.

“You’re going to find a lot of our equipment unweights,” she said. “The ability to move in water is much easier than it is on land a lot of times for people that are paralyzed.”

The facility includes a car, sans wheels and engine, that can be height-adjusted to help people relearn getting in and out of a vehicle. Another auto-related device is designed to train patients to operate vehicles using only their hands.

The clinic also supports dance classes and wheelchair basketball. Black said Neuroworx has a wheelchair basketball development team for children ages 8 to 12 as well as a junior team for 12- to 18-year-olds.

“We’ve had quite a few people that have gotten full-ride scholarships to play,” she said. “I don’t think people realize — there are D1 scholarships to play wheelchair basketball.”

Black added that Neuroworx has had a Paralympian who competed in both the Paris and Tokyo Paralympic games.

How to pay for it all

Hull and Black have found some success in advocating for increased assistance for those facing the long road of recovery from neurological injuries, including the Utah Spinal Cord Injury and Brain Injury Rehabilitation Fund, adopted by the Utah Legislature in 2012. They’re also pushing insurers to expand and improve coverage. They are gathering data to support the argument that better rehabilitation benefits lead to better patient outcomes and can ultimately be a cost saver.

“If we’re going to deal with the payers, we have to show them how they’re actually going to save money,” Black said.

Hull noted that better and longer rehabilitation stints can help reduce a number of ailments, and mishaps, common to those with paralysis including pressure sores, urinary tract infections, falls and rehospitalizations.

“If someone got a pressure sore, the cost of hospitalization and treatment could average $80,000 to $90,000,” Hull said. “You know how much therapy we could provide for $80,000? We could probably do 10 people and give them the care they needed for $80,000 easy.”

Money, and fiscal sustainability, is an ongoing challenge for Neuroworx. The company must raise $500,000 to $800,000 each year “just to keep the lights on,” Hull said. In an effort to reduce the pressure for that annual donation rate, Neuroworx launched an endowment campaign a few years ago aiming to raise $10 million. Hull said Utah’s reputation for generous charitable giving has been proven out in the effort and thanks to pledges and donations, the Neuroworx Sustainable Impact Fund is halfway to its goal.

Black said the challenge is that Neuroworx’s accessibility depends on accepting a permanent financial gap.

“You’re never going to not have that negative number every year,” she said. “This isn’t a business that anybody’s going to get rich doing.”

But she said the reward comes from patients’ progress. “You just get rich with the paychecks that you get every day as people like Emily move on.”

Making a difference

While Emily Traveller still visits Neuroworx regularly, she has moved on to becoming a source of support and inspiration for others navigating the challenges of recovering from spinal cord injuries through public speaking and creating content for a growing social media audience, which currently numbers over 800,000 followers across platforms.

And she has a powerful message to deliver to her audiences.

“When I first got hurt, I truly thought I will never be happy again unless I can walk, or get my full body back. I will never, you know, live the life I want to live,” she said.

But nearly five years later, she sees things differently.

“My life is different, but it’s so special in a lot of ways too, because I’m a completely different person and I see the world very differently, and I’m very lucky to even be alive.”

Traveller said at first she was hesitant to share details about her injuries and her recovery journey, which has helped her regain some use of her arms. She worried that making the information public would put her in a vulnerable position.

“I was embarrassed … I didn’t want to do it,” she said.

But once she began sharing, she realized how many people needed to hear what she’d been through because they were experiencing it themselves.

“I talk about resilience, but also just making people aware of disability,” Traveller said. “I get DMs from people who have just been hurt and they’re like, we found your Instagram and you know, it helped us get through our hospital stay or whatever. So that’s really special being able to do that at all. If it helps one person, it makes it worth it.”

Traveller’s mother, Kari Traveller, shared some insight for parents of young people who are recovering from spinal cord injuries, noting that one of the biggest challenges comes down to making a mindset shift.

“Just because somebody’s in a wheelchair or has different disabilities does not mean their quality of life has to diminish, but it does have to change,” Kari Traveller said. “Don’t put these expectations that you’ve got to push really hard to get back to normal to be happy. Because what is normal anyways? It’s a little bit of a fallacy.”

When asked whether she would change what happened if she had the power to do so, Kari said the question is difficult because she is not the one living in Emily’s body, but she is the one watching someone she loves suffer.

“Would I love for Emily to have her body back? 1,000%,” Kari Traveller said.

But she also underscored the impact Emily, the middle of five kids, is having. During a visit to Disney World, Kari Traveller said dozens of people recognized Emily and approached her.

“You’ve shown me what I can do or that my family member could do this,” Kari Traveller recalled them saying to her daughter. “The growth that I’ve seen in Emily is phenomenal and she’s unmatched in anyone her age in realizing what’s important and what’s valuable.

“She’s changing the world.”