I graduated this month with my master’s degree in Education Policy and Leadership. I have published peer-reviewed research, co-created a survey instrument with a digital object identifier, served as a graduate task force co-chair, and was admitted to fully funded Ph.D. programs.
On paper, I represent the American dream’s image of promise and success — driven, capable, and eager to contribute to the future of education reform in this country. But none of those credentials — not the degree, not the publication, not the leadership — have freed me from the grip of a system that punishes disabled people for trying to live.
I rely on Medicaid to cover a personal care attendant who helps me complete basic activities of daily living. There is no private insurance plan that will cover this need. Without this support, I cannot get out of bed, eat, or use the restroom safely. And yet, if I earn more than the narrow income limits set by Supplemental Security Income — which is often tied to Medicaid eligibility — I risk losing that care altogether.
In a cruel twist of policy, the moment I actually try to participate in society, the very tools I need to participate in society are stripped away.
The public debate around Medicaid work requirements ignores people like me. Politicians and pundits focus on “able-bodied adults” and whether they’re working hard enough — but no one talks about disabled adults who want to work, can contribute, and are forced into poverty by the very safety net that is supposed to support them.
Medicaid and SSI are deeply intertwined. In most states, including my home state of Florida, eligibility for Medicaid — which covers long-term services like personal care aides — is automatically granted to those who qualify for SSI. But SSI comes with harsh limits: just $943 in monthly income, and no more than $2,000 in assets.
A threshold limit is established under Section 1619(B) of the Social Security Act, placing a limit of $42,119 in earned income as a resident of Florida. This is equivalent to earning approximately $20 an hour, less than the average annualized earnings of students who graduated with a bachelor’s degree from the state university system in the fall of 2022.
According to the Center on Budget and Policy Priorities, nearly 8 million Americans rely on SSI, and about 60 percent of adult recipients have disabilities. Of those, many also depend on Medicaid for home-based and community-based services. Yet the income limits and asset tests have remained largely unchanged since the 1970s, adjusted only slightly for inflation.
This creates an impossible situation: I’m educated and ambitious and want to contribute to society. But I’m effectively forced to remain poor — not because I lack ability, but because working too much will leave me without the care I need to live. This is not independence — this is captivity.
Democrats often speak about equity, inclusion, and protecting marginalized communities. Republicans champion economic opportunity, self-sufficiency, and personal responsibility. But when it comes to people like me — disabled adults who want to live independently and escape the poverty trap — both parties have fallen short.
For Democrats, equity often stops at access. But real equity means creating a system where I can use my education without risking my care.
For Republicans, the rhetoric of independence rings hollow when working a full-time job disqualifies me from essential care.
The Medicaid work requirement debate misses the point entirely. The issue isn’t whether people should work — it’s whether the system allows disabled people to work without punishing them for it.
If policymakers are serious about promoting work, independence, and dignity, they should start by reforming rules that actively prevent such things. First, decouple Medicaid’s long-term care supports from poverty requirements. Second, raise SSI’s outdated asset limits. Then create tiered eligibility models that allow disabled adults to contribute while maintaining essential services.
We are not fringe cases. We are people trying to live, work, and thrive, but in a country that still hasn’t figured out how to make freedom accessible.
Carlos Gamez has a master’s degree in education policy and leadership from American University. He resides in Lakeland, Fla. and was recently appointed as a self-advocate member of the Florida Center for Inclusive Communities Advisory Committee.
