If there was a magic ball that could share a secret path to happiness after a spinal cord injury, one of these paths would surely be disability advocacy, and thankfully Robby Barbieri discovered this path after his injury. But finding this path was a matter of necessity.
After attempting to return to his former career, Robby discovered the laws in his state were not adequate for the needs as a working individual with a spinal cord injury. Frustrated and not willing to accept the status quo, he decided to take the initiative to bring about much needed change. Read on to discover the impressive advocacy work Barbieri has already put into action.
Why He’s Fearless?
A former college football player for Vanderbilt University who then moved onto a career in corporate finance, Robby, 33 years old and from Tennessee, was enjoying life professionally and personally. On February 7, 2022, he lost control of the car he was driving. It flipped, hitting a telephone pole and leaving Barbieri with a C4-5 injury. “I was in complete shock and doubt,” he says about how he felt after his accident.
“The first 6 months after my injury I had no idea what life would look like. I was throwing pity parties, internalizing everything and was very very bummed out,” he says. “I also dove into research; research about cures, rehab methods and just general information about SCI’s. I wanted to go about this the right way and do anything possible to give me more motor function.”
Barbieri chose the Shepherd Center in Atlanta, Georgia for his choice of spinal cord injury rehabilitation. “I couldn’t be more happy with that choice. The amount of education, support and medical care that I got there was very impressive. I was there for 3 months and after only 2 weeks, they had gotten me off the ventilator. The mentorship and relationships that I built there were some of the most special of my life.” He’s currently thinking about going back for their day clinic.
After a year of being paralyzed, Barbieri finally felt ready, both physically and mentally, to return to work. “My career prior to my accident had given me a sense of purpose and deeper meaning and I was investing a lot of time and energy into my career. I have two degrees from Vanderbilt,” he says.
“However when I tried to go back to work, I quickly learned about the restrictive $2829 income limit and $2000 asset limit in Tennessee for Medicaid.” Knowing how important caregiving is to someone with his severity of injury, even if Barbieri wanted to go back to work, he knows he couldn’t with the current law as it stands. “I rely on caregiving 12 to 16 hours a day, and maintaining Medicaid eligibility was the only route to afford this new, costly lifestyle.”
From his own research and guidance from new mentorships, Barbieri discovered that he had the unfortunate luck of living in one of the last few states in the US that does not offer a Medicaid buy-in program for people with disabilities. “I want Tennessee to remove the asset and income limit for a Medicaid workers with disabilities. I want them to join the ranks of the other 46 States,” says Barbieri.
To that end, he began to advocate for the Pathways to TennCare bill in partnership with Rep. Darren Jernigan. “We are trying to implement a program where people with disabilities who are working in Tennessee also get access to the family caregiving support that they need. Tennessee is 1 of only 4 states that does not have a program like this and it is time to change that.” One of the biggest advocacy initiatives he’s completed yet is creating an organization/website called MusicCityWheels.
“The purpose of MusicCityWheels is to educate and convey the issue, offer ways to help through donation, a community survey, and also an interactive tool to write to local representatives. I wanted to make this because this issue does not get talked about enough.”
“People like me are confined to sitting at home receiving Medicaid benefits, and are not putting themselves out there in the workforce. We deserve the same right to work and marry as able-bodied people. We deserve a chance to thrive not survive. I have countless number of friends who are withholding employment and being forced to divorce their loved ones, for the sake of Medicaid eligibility. It’s really sad to see.”
Barbieri credits his advocacy to meeting Spinalpedia Founder Josh Basile, who’s also a C4-5 quadriplegic, 9 months after his injury. “He was introduced to me through a mutual friend and I initially thought it would be more of a lawyer – client relationship. I was completely wrong. From the moment Josh and I spoke, I was blown away by his attitude, outlook and life that he has built after his injury.”
“There was a little part of me that thought my hopes of having a family, a regular job and somewhat ‘normal’ lifestyle ended at time of my accident, but I was blown away to hear that Josh had went to law school, got married, bought a house and had kids after his injury.”
Barbieri says that Josh not only gave him a sense of hope after his injury, he also taught him about advocacy. “He taught me the art of advocating for myself and the concept that an injury like this can be a unique platform for sparking positive change in the disability community.”
“I owe my interest in advocacy completely to Josh.” He credits Josh for showing him on how he implemented programs like this in other states. “He was a great mentor to me in the process.” Barbieri is currently working with the Tennessee Disability Coalition and the United Spinal Association, and is the treasurer of the Tennessee Chapter.
Hopeful the TennCare for Working Adults with Disabilities Bill will be passed, Barbieri is looking to the future when he is able to work again without fear of losing his caregivers, and when he does, he’s thinking about a change in careers. “In the future, I want to be able to work in advocacy and help change the world for people with disabilities.”
— Visit Barbieri’s site: https://musiccitywheels.com/
— Visit Barbieri’s IG: https://www.instagram.com/rbarbieri13/