CW: Poverty
I’m 26 years old, and due to my cerebral palsy, I rely on PCA (personal care assistant) services. For me, these are not optional services. They are a necessity that allows me to take a shower, get dressed, and do other daily tasks.
Without them, the most basic tasks that others take for granted would be impossible. The way MassHealth is structured, however, forces me into poverty just to continue receiving them.
The program has strict income and asset limits for disabled people. If I make more than a poverty-level income, I risk losing coverage. If I save more than a couple thousand dollars, I risk losing coverage. Even if I inherit money or get financial help, I’m required to spend it down until I’m poor again. It doesn’t matter how hard I work or how much I want to plan for the future—the system is designed to strip away any financial independence in exchange for the care I need to survive.
The numbers make this trap painfully clear. For me, PCA services cost approximately $64,000 year. To pay that out of pocket, I’d need a salary of about $95,000-$105,000 annually after taxes.
But MassHealth rules say I can’t earn anywhere near that. Instead, I’m forced into poverty just to keep the services that keep me alive. It’s a cruel paradox: the very program designed to help me survive ensures I’ll never thrive.
This plays out in my daily life in ways that are exhausting and demoralizing. I want to work, but it is nearly impossible. I want to save for the future, but I can’t. I want independence, but I’m forced to stay poor. Every decision I make, whether it is to accept a paid internship, a raise or even to dream about a career, is overshadowed by the fear of losing my PCA services.
Besides these, another unfair policy is the marriage penalty. If I choose to marry, my spouse’s income is counted against me, even though I continue to need the same level of care. Rather than rewarding marriage, the system punishes me by cutting or eliminating my PCA services. This forces me into an impossible choice: pursue love and partnership at the risk of losing essential care, or remain single to maintain the care that allows me to survive.
MassHealth’s system puts disabled people like me in a poverty trap. It tells us we can have healthcare or we can have financial freedom. Unfortunately, we cannot have both.
This is not just a Massachusetts issue. In states throughout the country, Medicaid programs follow similar rules linking access to health care with poverty. In nearly every state in the nation, disabled people face that impossible choice: stay poor and keep the care you need, or risk losing coverage if you try to earn or save more. These policies create a nationwide cycle of poverty for millions of disabled Americans, reinforcing inequality and limiting opportunities for independence.
Disabled people are entitled to much more than mere survival. We deserve the opportunity to build our lives, careers, and futures without punishment for it. PCA services are incredibly important, but the nature of their eligibility puts me in a position of poverty at 26 with no way out.
Until Massachusetts and the nation as a whole reform these rules-raising income thresholds, easing asset limits, and decoupling healthcare access from poverty status-the disabled residents of our state will continue to face the impossible choice between healthcare and independence.
This is my story, but it’s also the story of thousands of disabled people across Massachusetts and millions across the country. We shouldn’t have to choose between living and living in poverty. We deserve a system that recognizes our humanity, supports our independence, and allows us to thrive rather than trapping us in survival mode.
Sources:
LaGorce, Tammy. “Seeking Marriage Equality for People with Disabilities.” The New York Times, The New York Times, 25 Aug. 2022, https://www.nytimes.com/2022/08/25/style/marriage-equality-disabled-people.html.
Tax Foundation. Massachusetts Tax Rates & Rankings. Tax Foundation, https://taxfoundation.org/location/massachusetts/. . Accessed 2 Dec. 2025.