To say that Robby Barbieri has been busy making incredible strides for the disability community this past year is an understatement!
“Two years ago, I was in a car accident and suffered a spinal cord injury that drastically changed my life,” says Robby, who sustained C4-5 quadriplegia. “Through this experience, I became acutely aware of the harsh realities many like me face. The challenges of navigating a healthcare system that inadvertently discouraged work and independence were overwhelming.”
At the time of his injury, the former Vanderbilt football player was a corporate finance professional in the healthcare industry. He rehabbed at the Shepard Center in Atlanta and returned home to Nashville. Like so many others with disabilities, he was confronted with policy barriers between him, his job, and his marriage.
He tried to return to work but soon realized he could not afford it. Tennessee’s Medicaid program, TennCare, had an extremely strict income limit of $2,829 and an asset limit of $2,000. The state had no Medicaid expansion and no Medicaid Buy-in Program for people with disabilities who wanted to work.
For Robby, this was unacceptable.
“I rely on someone else to do just about everything for me,” Robby says. “It’s an expense that’s over $80,000, maybe even over $100,000, a year. And unfortunately, there’s no private insurance plan that I know of that pays for any of that.” Maintaining Medicaid eligibility was the only route to afford his new, costly life.
Robby’s relentless advocacy pays off
Everything changed after Robby met Josh Basile. Josh, a lawyer with quadriplegia, showed Robby that it was possible to have a career and introduced Josh to advocacy.
“Josh taught me the art of advocating for myself and the concept that an injury like mine can be a unique platform for sparking positive change in the disability community,” says Robby.
Now, Robby has dedicated himself to advocacy and building his career. He began by explaining his goal to the Executive Director of the Tennessee Disability Coalition, Carol Westlake. His efforts were fully supported, he was connected with State Rep. Darren Jernigan, who has a C5-6 SCI, and his confidence continued to grow.
Robby and Rep. Jernigan began work on the Pathways to TennCare bill, which focused on implementing a program that would allow Tennesseans with disabilities who are working to access the family caregiving support that they need.
Robby shared his personal story, information about the costs involved with living with a disability, and his idea for a Medicaid program for disabled workers in Tennessee on his website, MusicCityWheels. “The purpose of MusicCityWheels is to educate and convey the issue, offer ways to help through donation, provide 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,” he says.
Robby’s dedication and persistent advocacy paid off, as TennCare for Working Adults with Disabilities became law in May 2024. This new law allows an individual to pay a premium based on their annual income to access Medicaid care and services while protecting other assets, such as retirement accounts and 401ks, from consideration under the asset limit.
When asked about this historic accomplishment, Robby says, “This is a bill that is going to impact people with disabilities in Tennessee forever.” He further added, “This bill marks a historic step forward. 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.”
Congratulations, Robby!
As Robby expresses his gratitude for all those who advocated and supported his efforts, we at United Spinal Association would like to express that same gratitude to Robby. This June, at United Spinal’s annual Roll on Capitol Hill, we are excited to announce that the 2024 Finn Bullers Advocate of the Year award recipient is Robby Barbieri!
Since 2017, this award has been given to advocates who go above and beyond to create lasting changes for the betterment of the disability community. All of us at United Spinal Association are so proud to present Robby with this award, as his efforts are a true testament of advocacy at its finest!
“This is about affirming the dignity and potential of every Tennessean, empowering us not just to survive, but to thrive,” says Robby Barbieri.
About United Spinal Association’s Finn Bullers Advocate of the Year Award
Finn Bullers was a journalist and advocate who fought for better Medicare and Medicaid coverage and ratification of the Convention on the Rights of People with Disabilities. A longtime reporter at the Kansas City Star, Bullers had Charcot-Marie-Tooth, a form of muscular dystrophy that affected his mobility. He worked with stakeholders across the country on the Accessible Icon Project to update the traditional symbol for disability.
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