What the Build Back Better bill and Medicaid reform could mean for workers with disabilities

Josh Basile was 18 years old when a family trip to the beach changed his life forever.

“A wave picked me up, threw me over my boogie board and slammed me on my head,” says Basile. “That day I shattered my neck, and now I'm paralyzed below my shoulders.”

Yet, this life-altering moment did not deter Basile from pursuing his career and passions. Basile went on to graduate from law school and become a malpractice attorney and disabilities advocate. He also works as community relations manager for accessiBe, a tech company focused on solving the problem of web accessibility for those with disabilities.

But Basile’s independence was hard won — current access to home and community-based services that allow those with disabilities to live safely and independently from institutions is restricted under state-decided, Medicaid buy-in laws, which place varying limits on eligibility and premium costs. For example, in Basile’s home state of Maryland, his monthly income cannot surpass $3,036 and his assets cannot surpass $10,000. If Basile were to get married, and hence combine his income and assets with a partner, he may face what is called the “marriage penalty.”

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“Right now, I can't even get married in my state, because the second I did get married, I would lose all my benefits,” says Basile. “I would love to transform Medicaid buy-in programs across the country and create a more conducive environment for workers with disabilities.”

Basile has already worked with the governor of Maryland for over three years to lift current limits on factors such as income and assets as early as 2022. However, as it stands there are still five states without Medicaid buy-in programs for working people with disabilities, namely Alabama, Missouri, Oklahoma, South Carolina and Tennessee, along with varying restrictions in the 45 other states.

When signed into law in 1965, Medicaid was intended to provide healthcare coverage for low-income people who were eligible for cash assistance. However, Medicaid eventually expanded to include the elderly, children and those with disabilities. Then, under the Balanced Budget Act of 1997 and the Ticket to Work and Work Incentives Improvement Act of 1999, states extended Medicaid coverage yet again to workers with disabilities, creating new income and asset limits that theoretically did not force workers to choose between Medicaid and employment — this became known as the Medicaid Buy-In for Working People with Disabilities program.

“People with disabilities were choosing to not go back to work because they were choosing to survive in the community rather than thrive in the community,” says Basile. “Still, when the Medicaid buy-in first came about, a lot of states went a more conservative route in terms of their limits.”

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Basile wants to see the federal government further incentivize states to expand their Medicaid buy-in programs, so workers with disabilities are empowered to live independently, regardless of the state they call home. Notably, President Biden’s Build Back Better bill includes $150 billion for Medicaid home and community-based services. If passed, this would prove to be the largest investment Congress has ever made in supporting independent living for those with disabilities.

“I'm a product of these services. My caregiving is paid for through Medicaid home and community based programs, and I am able to have a voice and contribute to the world as a result,” says Basile. “And that $150 billion will also support people in the healthcare industry who take care of persons with disabilities by giving them the income that they so so much deserve.”

While the Build Back Better bill will not directly touch on Medicaid buy-in limitations, this investment does address that people with disabilities have the ability and right to work, given the proper care. Not to mention that the pandemic has already proven that millions of workers can succeed from the comfort of their homes, opening up career options to talent with disabilities who may have been previously deterred by transportation challenges, explains Basile.

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“The disability community is the most unemployed and underemployed population in the country, and we need to do better as a country,” he says. People with disabilities are incredible workers — they're natural problem solvers who overcome barriers every single day.”

People with disabilities have an 82% unemployment rate, according to the U.S. Bureau of Labor Statistics. This means only a small portion of this talent pool has been given a chance to contribute to today’s workforce, while many are overlooked or excluded due to lack of healthcare access or employer bias. Basile hopes change on the state and federal level will bring this talent forward.

“We should be able to maintain employment and have purpose in life,” says Basile. “If we’re stuck in a nursing home, that's no way to live — we need to break down barriers to independent living and allow persons with disabilities to stay in the community.”