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Robby Just Wants the Right to Work and Save Money



Robby Barbieri joined the spinal cord injury world the same way one-third of us who sustain SCIs do: in a car accident.

February 7, 2022, was a dark, wet night. While Robby was on his way to dinner, his SUV hydroplaned, flipped over, and hit a telephone pole. His C4-5 injury left him with no movement below his shoulders. This threw Robby – who had been working in Nashville as a corporate finance professional for the healthcare industry before his injury – right into the lap of the American healthcare system.

“I had some great doctors,” he reflects on the surgeon and medical team in Nashville. “I went down to the Shepherd Center in Atlanta for rehab for two or three months. When I came back to Nashville, I quickly realized that there are a lot of policy barriers that exist for people with disabilities trying to get married or be employed.”

Robby discovered that Tennessee’s Medicaid program, called TennCare, has especially harsh eligibility rules. There’s a strict $2,742 income limit, no Medicaid expansion, and no Medicaid Program for Working People with Disabilities, also known as Medicaid ‘Buy-In’ Programs. “I am being prevented not only from owning assets but from earning money,” says Robby. “Average annual expenditures for people with my injury typically range up to $100,000. I want to be able to live life and invest in my employment.”

According to the AARP’s State Scorecard on Long-Term Services and Supports, Tennessee is one of only five states that fall into the “Tier 5 (Worst)” category.

The Power of Mentorship



Robby was worried about his future and unsure if he could ever work again. Like so many others in his situation, Robby began divorce proceedings so that he could qualify for Medicaid. He admits he fell into “pity party mode.” But then had a change of perspective when he met United Spinal board member Josh Basile “He introduced me to this world of advocacy,” says Robby.

Josh showed Robby that he could have a good life and career. “Even though he was in an accident, he went and got his law degree, and he got married, and he had kids,” Robby says. “That shifted a perspective in my head.” He decided to become an advocate and set his sights on eventually building a career.

Robby’s first step was to get in touch with Carol Westlake, the Executive Director of Tennessee Disability Coalition, and explain his vision. “I learned from Josh that advocating for disability policy reform is possible with enough effort and support because my story gives me a unique platform to advocate for myself,” says Robby. “I’ve seen Medicaid Buy-In Programs implemented in other states and thought, why not Tennessee?”

Westlake and the Coalition’s leadership were fully supportive. They connected him with State Rep Darren Jernigan who got a C5-6 SCI in a car accident over 30 years ago. “We had a call, and he was fiery and motivated,” Robby says. “He gave me hope that maybe we can advocate for something like this.”

Robby created the MusicCityWheels website, which features his personal story and facts about the costs of living with a disability. It also lays out details about Tennessee’s substandard Medicaid setup, a pitch for a Medicaid program for disabled workers in Tennessee, and a game plan for making change. It shows the AARP map with Tennessee’s Tier 5 status for [home and community-based services] and another map showing states that adopted Medicaid disabled workers programs.

An Eye on the State Budget

Tennessee is one of just four states plus the District of Columbia without a Medicaid program for disabled workers. Robby got connected with other state legislators and started trying to change minds. Here he was – a fresh quad, thrust into a life of advocacy, researching other state programs and working with healthcare policy specialists, trying to transform a huge system.

There was one big hurdle: This wasn’t the first time Tennesseans tried to get this type of Medicaid program going. “There was a push for this back in 2018,” says Robby. “But Tennessee rejected it because the fiscal note was too high.” The state Office of Legislative Budget Analysis said it would add $28 million a year to the state budget, so the bill never made it far in a statehouse full of fiscal hawks.

Robby believes that Tennessee’s Legislative Budget Analysts were wrong and wants to prove it. “From our research, the $28 million cost was so grossly overstated, it’s almost comical,” he says. His main argument – and that of experts and in reports he found – is that more people are unemployed on Medicaid without a disabled workers program. With the program, many of these people would contribute tax revenue. Many also believe the budget would be fine if lawmakers eliminated the program’s income and asset limits. This could help people earn more, save more, and preserve marriages.

“I want nothing more than to be able to work to my full potential and have access to the vital caregiving that keeps me alive in the community. I do not want a future where I am stuck at home receiving Medicaid services and doing nothing,” says Robby. He’s clear about the difference a disabled workers program under Medicaid would make in his own personal life. “I want a future where I can both survive and thrive. I want a future where I can work, contribute, pay taxes, and save for all the expenses that come with paralysis.

The Medicaid ‘Buy-In’ Ripple Effect

United Spinal Association’s Vice President, Government Relations, Alexandra Bennewith, has Robby’s back. “We support Robby’s fight to live to his full potential,” she says. “United Spinal is proud to champion his cause for the freedom to follow his dreams. And we support all of the others in Robby’s situation across the nation to follow theirs. The need for personal care supports is a necessity, not an elective.

Under Alex’s leadership, United Spinal is launching a multi-state Medicaid Program for Disabled Workers campaign. It will target nine states, plus the District of Columbia, to implement or enhance Medicaid programs. opens in a new windowYour support will help us address this pressing issue of improving access to Medicaid supports and services for workers with disabilities who need to remain employed.

Good Medicaid for Disabled Workers programs significantly enhance economic participation for individuals with disabilities, leading to better job opportunities and increased income. This has a positive ripple effect on the individuals directly involved and the broader economy, including state Medicaid agencies, businesses, and governmental bodies at both the state and federal levels.

People with disabilities face higher unemployment rates compared to those without disabilities. The Medicaid Programs for Disabled Workers initiative addresses this critical issue by removing a significant barrier: the fear of losing Medicaid benefits upon employment.

This program introduces much-needed flexibility in state Medicaid plans, supporting individuals with disabilities who are eager to work and boost their earnings. However, to fully leverage this flexibility, clear and coherent federal guidelines and easily accessible information are essential. Policy reforms that clarify these flexibilities and enhance outreach and data sharing will further facilitate access to these programs, empowering more individuals with disabilities to participate in the workforce without sacrificing their healthcare needs.

A Greater Purpose

Advocacy is a learned skill, but Robby is enjoying the ride.

“I wasn’t really thinking I would be getting into this. But the more I do it, the more I like it,” Robby says. “It makes me feel like everything with this injury, has a greater purpose. On the outside, it looks like this injury took so many things away. But this advocacy kind of makes things come full circle for me.”

Good Medicaid for Disabled Workers programs significantly enhance economic participation for individuals with disabilities, leading to better job opportunities and increased income. This has a positive ripple effect on the individuals directly involved and the broader economy, including state Medicaid agencies, businesses, and governmental bodies at both the state and federal levels.

People with disabilities face higher unemployment rates compared to those without disabilities. The Medicaid Programs for Disabled Workers initiative addresses this critical issue by removing a significant barrier: the fear of losing Medicaid benefits upon employment.

This program introduces much-needed flexibility in state Medicaid plans, supporting individuals with disabilities who are eager to work and boost their earnings. However, to fully leverage this flexibility, clear and coherent federal guidelines and easily accessible information are essential. Policy reforms that clarify these flexibilities and enhance outreach and data sharing will further facilitate access to these programs, empowering more individuals with disabilities to participate in the workforce without sacrificing their healthcare needs.

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