“It’s time to go home. You’ll figure it out.”

That’s what Joe Rohling heard when he was discharged from inpatient rehabilitation one month after a rare genetic disease caused his spinal cord injury. He left wanting more. “I felt they did a good job, but there were things I never really got to do … there just wasn’t enough time,” he says. “You learn the basics and then you just have to move on.”

Over the past 50 years, SCI rehab stays have drastically shortened to an average of 26 days, and to 13 days for a nontraumatic SCI — a far cry from the three- to six-month stays of earlier times. For a newly injured person, it is difficult to imagine and work toward a purposeful future given such a short window.

“With shorter stays we have patients leaving while they are still in a cervical collar,” says Tina Fisk, a home and community occupational therapist, and co-founder and director of the nonprofit Camp With a Ramp. “At that point they aren’t ready for real-world education and learning about activities.”

As a physical therapist, Carrie Callahan grew tired of watching people get sent home simply because their insurance said it was time. “We are so focused on survival (at traditional rehabs) that we never quite get around to teaching someone how to get back to living,” says Callahan, president and co-founder of the nonprofit Empower SCI.

To help address this and many other issues arising from shorter inpatient stays, Fisk, Callahan and others are building new experiences to teach and instill the skills and confidence needed to live life after SCI to the fullest. Combining physical activities, daily living skills, community building, peer mentoring and more, these new transitional rehab experiences are changing the face of SCI rehab. Here’s a look at three of these transitional rehab providers and how they are filling the gap in the current “survival” rehabilitation model by thinking outside the box.

Empower SCI

“I remember staring at a box of cereal on the fridge. I didn’t know what a panic attack was until that moment,” says Eli Ramos, 31, describing his anxiety when he was discharged home just eight weeks after sustaining a C6-7 SCI in 2012. Ramos was one of only two people on his rehab unit, and to commemorate the two-year anniversary of their injuries, the two friends decided to attend Empower SCI’s two-week boot camp at Stony Brook University, in Stony Brook, New York.

At the time he was a hotheaded 22-year-old with a lot of pent-up anger and trauma anxiety. “I almost left the first day, after a tense interaction with a staff member. Cooler heads prevailed and by the end of Day 2, I learned how to self-cath,” says Ramos. “I realized how valuable an opportunity like this was, and I’d never forgive myself for leaving prematurely. By Day 3, I was fully entrenched in the Empower program and culture. Discomfort is vital for growth, so I got uncomfortable, but with a whole community rallying behind me.”

Launched in 2012 by Callahan and two of her colleagues, Empower SCI is a summer residential program for individuals at least one year post-SCI whose rehab benefits have been exhausted but who are ready to expand their knowledge and seek ways to live happier, more meaningful lives. A typical morning at Empower SCI consists of physical, occupational or massage therapy, yoga, rehab counseling, and educational sessions. Afternoons involve activities such as swimming, kayaking, cycling, surfing, rugby, painting and music classes.

The Empower SCI program is client-centered and intimate, with only 10-12 participants who choose two to three goals they want to accomplish during the program. Goal attainment is one way the program measures success. “We see a huge change from beginning to end because the program is designed to cater to whatever the person’s goals are,” says Callahan.

Participants come from across the U.S. This summer, Rohling, 68, will travel from his home in Weston, Wisconsin, to attend Empower SCI’s two-week program, after participating in their one-week program last year. In the wake of his SCI three years ago, he had received almost 30 days of rehab at a local community hospital that covered basics but did not offer specialized SCI rehab.

Just getting to Empower SCI last year was his first accomplishment, because it was the first time he had flown since becoming a wheelchair user. In addition to enjoying all the adaptive sports offerings at Empower, Rohling got back into a pool again, and worked on wheelchair skills like curb-hopping and how to transfer better. This year he wants to try kayaking.

Peer-mentoring and knowledge-sharing are important aspects of the program. Mentors are matched with participants based on level of injury, hobbies and interests, among other factors.

“Meeting all the other SCI participants and hearing their experiences was really great,” says Rohling. “I think at the end of the week, none of us really wanted to leave. Being away from home, away from your caregivers, the program really pushes you out of your comfort zone, but that’s OK. If you fail at something, you have all these experts on hand to support you.”

As for Ramos, he entered college as a full-time student shortly after his Empower SCI experience. “I remember telling myself, ‘You can do this.’ Empower SCI gave me more confidence: physically, emotionally and socially.” Today he lives on his own, moonlights as a stand-up comedian and works full time as a business engagement associate in the New York City Mayor’s Office for People With Disabilities. Even with his busy schedule, he finds time to volunteer as a peer mentor for Empower SCI.

“I owe a tremendous debt to this life-changing organization. I get to pay it forward and impart the wisdom and knowledge I acquired,” he says. “I think that’s the true testament to the success of the program: integrating into mainstream society and not becoming a professional patient.”

Sargood on Collaroy

Forrest Campbell, 47, of Alberta, Canada, was looking for accessible accommodations to visit his in-laws in Australia on what was to be his first trip since becoming a quadriplegic in 2015. After what he described as a “lackluster” inpatient rehab stay, his wife and family worried they’d never be able to travel together. His mother-in-law suggested he look into Sargood on Collaroy.

Located on a spectacular headland at Collaroy Beach with breathtaking views of Sydney, Sargood on Collaroy is the first health-and-wellness resort built for people living with an SCI. Opened in 2017 and operated by Royal Rehab, a private Australian rehab provider, Sargood takes recovery beyond the clinical environment, tailors it to the individual, and integrates it with everyday life.

“When we arrived at Sargood, we were blown away by the accessibility,” he says. The rooms were modern, comfortable and spacious, with automation of essential amenities: adjustable-height kitchen tops, adjustable beds for easy transfers, automated windows and blinds, and doors with easy-opening features.
Campbell was further blown away by the breadth of activities on offer. The recreational experiences at Sargood had a huge mental impact on him. “I was like, ‘What do you mean, you can take me surfing?’ The staff acted like everything was not a problem,” he says. “I had just not run across anything like that in Canada.”

Guests can choose from a variety of activities designed for people living with SCI, including surfing, golf, cooking classes, even whale watching. Sargood helps guests engage in new experiences and discover new skills. “(We are) not advertised as a rehab, but through recreation and other activities, you get the benefits of rehab, just delivered in a different way,” says General Manager James Dakin.

Campbell’s wife, Cassy, will never forget watching her husband surf. “Forrest went out on a jet-propelled board and caught his first wave. The look on his face was magical. I cried,” she says. “We invested every emotional penny we had into recovery to get to this point. Now we were finally living again, not just recovering.”

“Our concept was to provide this service where people aren’t patients, they are guests,” says Dakin. “It’s a place people want to keep coming to.” Instead of nurses doing rounds, Sargood’s staff of care workers provide assistance to guests who need it. The $22 million development features 17 accessible rooms, three designed for families.

Jodie Parker hadn’t been away from home in nearly four years. “Before my accident I was naturally adventurous,” she says. “I had ticked skydiving and snorkeling the Great Barrier Reef off my bucket list, and I was on my way to getting my pilot’s license.” But after her SCI in 2011, she struggled with her physical limitations and rarely left home. All of that changed on her first of many visits to Sargood.

“The staff and adaptive technology there made a difference in my ability and desire to travel,” she says. “Staying here has given me a better understanding of what equipment I need, and opened up a world of ideas on how to make my own home more accessible. I am now waiting on a quote to install doors at home that are just like the ones at Sargood.”

Guests come from all over the world. “It creates a sense of community, where people can speak openly about their injuries,” says Campbell, whose family eventually moved to Australia. He has returned to Sargood many times and even uses its community fitness center. “They are like family to me now,” he says. According to surveys, 80% of Sargood’s guests say they leave with some new skill or knowledge.

More than that, Parker says her time there grew her confidence and broadened her sense of what is possible. “I now have a new bucket list of things to see and try.”

Camp With a Ramp

The rising sun casts a warm glow across Arizona’s Mogollon Rim as a group of manual and power wheelchair users ascend the trail. The sunrise hike at the Rim is just one of many “firsts” that wheelchair users get to experience at Camp With a Ramp. CWR co-founder and Director Tina Fisk says watching campers experience “firsts” is the best part of camp.

Since 2006, approximately 80 campers with SCI or neurological diseases, caregivers, family members and volunteers gather once a year for a three-day cabin camping experience at Whispering Hope Ranch in Payson, Arizona. Each camper gets to tailor their retreat experience to their own interests and abilities, choosing from horseback-riding, fishing, kayaking, archery, crafts, yoga, lacrosse and, new this year, pickleball. Evenings feature a campfire with s’mores, live music and dancing, and a casino night.

Jordan Scott, 21, felt like the only wheelchair user in her community of rural Ruston, Louisiana. At 12 years old, a blood clot in her spinal cord resulted in a C6 SCI. Six weeks later she was discharged home with nowhere to turn for peer support. But at Camp With a Ramp, it was a different story. “When I first got there, it was like, oh my gosh, other people in wheelchairs,” she says. “It was so comforting.”

As an outdoor enthusiast and bike rider prior to her injury, Scott was particularly excited to try adapted mountain-biking. “I hadn’t had an experience like it since my SCI,” she says. “I could easily go out in the woods. It was nice to have that adrenal rush again and realize I can still do these kinds of things, just differently. It was reassuring to get that feeling back.”

Peer-mentoring, matched to campers, is also offered. Mentors lead educational courses such as intimacy after SCI, navigating Social Security benefits, and self-defense strategies.

Camp With a Ramp has given Brittany Johnson, 32, of Peoria, Arizona, a whole new outlook and group of friends. After her T1 SCI in 2010, she used to shelter herself and find excuses to not do something. “In the hospital,” she says, “I was around all these people … and all this support, and then you get out and it was a huge shock. Real life is so much harder.”

She has been to Camp With a Ramp every year since 2021. “I thought it would be cool to be around people in wheelchairs like me, but it was more than that,” she says. “It was being around people who experienced life like me … and pain … and kept going. Being able to talk about those struggles, it was just mind-blowing.”

Her own list of post-SCI firsts at Camp With a Ramp is extensive: hiking, hand-cycling, bocce, horseback-riding, wheelchair basketball and kayaking are among the many. She remembers the first time she went kayaking at camp: “They couldn’t keep me out of the water. It didn’t matter that I couldn’t walk. I was out there on the water like everyone else and it just felt so good.

“Before camp I just wouldn’t go anywhere,” Johnson says. “At camp everything is so scheduled and jam-packed. I thought it was going to be horrible and my pain would be ridiculous, but I was having so much fun that I didn’t even think about it.” She made a new group of friends that motivated her. “After camp, I started working out (and) got back into a pool for the first time in 10 years. I was into activities, even joined the boards of a couple nonprofits,” she says. “I just started putting myself out there.”

Wiping away tears, Johnson says, “I’m a full-time single mom, (and) everything I do is for my daughter. So being at Camp With a Ramp, away from her, and being able to do something for myself … it breathed life back into me. It felt like a major accomplishment.

“Since Camp With a Ramp, I’ve become a peer mentor with the Christopher and Dana Reeve Foundation, been active in my local disability community, and I’m even helping with Camp With a Ramp this year as an assistant director. Camp changed my life and mindset tremendously. It definitely gave me back that breath I lost a long time ago.”