Man on a Mission

Thirty-three-year-old Robby Barbieri loves sports, music, and dogs. And he especially loves football, blues guitar, and a fluffy golden doodle named Rory. At age 19, the Minnesota native moved to Nashville to attend Vanderbilt University. There, he played football and earned his undergraduate degree in economics and a master’s degree in finance. He fell in love with Nashville and settled down there. He had been working in finance in the healthcare industry for several years when he sustained an incomplete C4-C5 spinal cord injury in a car crash early in 2022.

Robby went first to Vanderbilt University Hospital, where he spent three weeks in the ICU before transferring briefly to a local rehabilitation facility and then to Shepherd Center. When Robby arrived at Shepherd, he still used a ventilator to assist with breathing.

“Prior to Shepherd, I was having a hard time coming off the vent. It was an agonizing process. I think I was completely off the vent two and a half weeks after I got to Shepherd. I remember drinking water and eating for the first time, and it was the greatest thing in the world for me at the time,” Robby recalls.

While in Shepherd’s Spinal Cord Injury Rehabilitation Program, Robby tried to soak up all the education offered. He learned to care for his skin, shifting his weight to prevent pressure sores. He worked on a bowel and bladder program and explored assistive technology options.

“The adaptive tech that I learned about gave me a lot of hope because I realized I can work again,” Robby explains. “I can do things. I'm not just a body. Now, I use a lot of technology to make my life work.”

Robby participated in outings to the airport, a sporting event, and brunches at local restaurants.

“Right after my accident, I was so afraid of going out in public and what people would think of me. And I remember heading down Peachtree Road and my therapist, Alexis, guiding me into a restaurant. That stuff set the tone for me being comfortable in my new body going forward,” he recalls.

Once he returned home, Robby began to feel the pressure of his mortgage and medical and caregiver expenses. He felt ready to rejoin the workforce. That’s when he discovered another obstacle to building the life he hoped for. Tennessee was one of a handful of states without a Medicaid buy-in program. A buy-in program allows participants to earn income and have assets while paying a premium to Medicaid. Because no such buy-in program existed as part of TennCare, Tennessee’s Medicaid program, Robby faced income limits of $2,829 per month and asset limits of $2000 to receive Medicaid — insurance coverage essential for his care.

Through a former coach and mentor, Robby met Josh Basile, a disability lawyer, and discovered a mission that would occupy the next several months of his life and change how he views himself.

Robby learned that Josh, who also has tetraplegia, has a job, bought a house with his partner, and has two kids.

“After the first conversation with Josh, so much hope came into my life,” Robby says. “I thought a lot of those life events were unattainable for me because of my injury. Our conversation lit the fire,” he explains.

Robby and Josh talked about the barriers Robby was facing with insurance coverage and his hope to return to work.

“Josh told me that the law could be changed,” Robby recalls. “I immediately started researching everything about those laws and how people have advocated for changes in the past.”

Robby spent the next several months making connections, building a task force, and trying to drum up support to change the law that made him feel he had to choose between work and health insurance. He started a nonprofit, Music City Wheels, to highlight the issue. He worked with the Tennessee Disability Coalition, which connected him with Tennessee State Rep. Darren Jernigan, who also has a spinal cord injury and supported Robby’s efforts. Robby reached out to experts to help him make the case for changing the law by gathering data and crunching numbers for the budget. He also worked, alongside others, to get sponsors for the bill in the Tennessee House and Senate.

“I want to save money to have a home and a family and support this new life,” Robby says. “I feel like it's every human’s right to be able to earn income and also get the health care that they need. This is about affirming the dignity and potential of every Tennessean, empowering us not just to survive, but to thrive.”

All the hard work paid off, and on April 24, 2024, with sponsors Senator Bo Watson and Representative Tim Hicks, the TennCare for Working Individuals with Disabilities Act became law, allowing qualified individuals with disabilities to pay a premium to access Medicaid's long-term support services, even if their income exceeds the current Medicaid eligibility requirements.

Robby is thrilled with the outcome in Tennessee.

“This bill marks a historic step forward,” he says. “It ensures that individuals with disabilities no longer have to choose between maintaining health coverage and pursuing their career aspirations or personal happiness, such as marriage. As someone who has lived through the limitations of the previous system, this change isn’t just policy to me, it’s personal. It represents a future where disabilities do not define our capacities to contribute, to succeed, and to build lives of fulfillment,” he explains.

And Robby is enjoying the benefits of his advocacy. He recently started a full-time job in corporate finance with NuMotion, a wheelchair and mobility equipment company. 

He’s continuing his advocacy work, connecting with organizations in Louisiana and Utah to improve laws surrounding working with a disability.

“I never really thought advocacy would be a big part of my life,” Robby says. “But I really like it — it kind of makes everything make sense. I always want to be in this disability arena, giving back.”

Written by Ruth Underwood