Have you ever done the math on what it actually costs to care for someone the government technically already supports?
I first heard about Monique Washington through a union benefits coordinator in Baltimore who described her as “the kind of person who will give you her last dollar and then apologize for not having more.” When I reached out, Monique agreed to speak on the record. She met me on a Tuesday afternoon, still in her UPS uniform, smelling faintly of cardboard and diesel. She sat down across from me at a diner on Eastern Avenue, ordered black coffee, and started talking before I had my notebook open.
She is 43 years old. She earns roughly $78,000 a year — solid Teamsters wages, benefits included. And she has almost nothing saved for retirement.
The Accident That Changed Two Lives, Not One
In 2007, Monique’s younger brother Darius was 25 years old when a driver ran a red light and struck him crossing North Avenue. He survived, but he sustained a traumatic brain injury that left him with significant cognitive impairment and limited mobility. He has needed daily support ever since. Their parents are both deceased — their mother in 2015, their father in 2019 — and Monique is the only family left.
Darius qualifies for Social Security Disability Insurance. According to the Social Security Administration, SSDI benefits are calculated based on a worker’s earnings history, and because Darius had minimal work history when his injury occurred, his monthly benefit sits at approximately $1,050 — well below the 2025 national average of $1,537 for disabled workers. He also receives Medicaid, which covers his primary medical care.
On paper, that looks like a support system. In practice, Monique told me, it functions more like a floor with holes in it.
The Costs That Fall Between the Cracks
Medicaid in Maryland does cover a meaningful range of services for adults with disabilities, including some home- and community-based supports through the state’s waiver programs. But as Monique explained to me over the course of nearly two hours, the gap between what’s covered and what’s needed is real, persistent, and paid in full by her.
She walked me through her monthly out-of-pocket costs, which she’s tracked in a spiral notebook she keeps on the kitchen counter. The numbers were specific and, frankly, striking.
That total — roughly $850 per month, or more than $10,000 per year — comes directly from Monique’s paycheck. She hasn’t missed a single month in nearly a decade. She has also not, in that same span, made a meaningful voluntary contribution to her Teamsters retirement account beyond the minimum required participation.
She doesn’t dramatize this. She states it the way you’d describe a utility bill — as an immovable fact of her financial life.
What SSDI and Medicaid Actually Cover — and What They Don’t
To understand Monique’s situation, it helps to understand the structure of the programs Darius relies on. SSDI provides monthly income, but that income belongs to Darius. It pays for his share of their shared household expenses — he contributes about $600 toward rent and food. What it cannot do is stretch to cover the full cost of the care infrastructure he needs to function day-to-day.
Maryland’s Medicaid program covers a broad range of services, including doctor visits, hospitalizations, and some personal care support through programs like the Maryland Department of Health’s LTSS programs. But Darius is on a waiting list for expanded home-based supports — a waiting list Monique told me he’s been on for four years. Until he reaches the top, she fills the gap herself.
Accessible transportation is a particular pain point. While Medicaid does cover some non-emergency medical transportation, Monique said the scheduling requirements and vehicle availability in her neighborhood make it functionally unusable for Darius’s regular appointments. She pays a private transport service $105 per trip, four times a month.
The Retirement Clock She Doesn’t Look At
Monique has been driving for UPS since she was 27. She’s in the Teamsters, which means she has access to a defined benefit pension — a rarity in today’s labor market. But pension accrual is based on years of credited service and, in some configurations, additional voluntary contributions. The years she’s spent covering Darius’s care costs are years she has not been building additional financial cushion beyond the base accrual.
“I try not to think about it too hard,” she told me, turning her coffee cup in her hands. “Because when I do think about it, I get angry. And I can’t afford to be angry. I have to be functional.”
She hasn’t taken a vacation since 2019. Not a weekend trip. Not even a long weekend. Darius’s care needs don’t pause, and the cost of arranging consistent substitute support while she’s away — on top of what she already spends — puts any real break financially out of reach.
She is also, she admitted, quietly terrified about what happens when she retires. If she reduces her income, Darius’s Medicaid eligibility won’t change — but her capacity to cover the $850 monthly gap will. She doesn’t have an answer for that yet. She described it as a problem she keeps moving to the back of the shelf.
A System That Sees Two People, Not a Household
What strikes me about Monique’s situation — and I’ve reported on family caregiving finances for years — is how completely invisible her costs are to the programs designed to help her brother. SSDI calculates Darius’s benefit based on his earnings history. Medicaid evaluates his individual eligibility. Neither program has a mechanism to account for the financial strain placed on the family member holding the whole structure together.
Family Caregiver Alliance estimates that roughly 53 million Americans provide unpaid or partially subsidized care to a family member with a disability or chronic condition. The economic value of that care — when you account for lost wages, out-of-pocket costs, and foregone retirement contributions — runs into the hundreds of billions annually. Monique is one of 53 million people absorbing costs that the official numbers never capture.
Near the end of our conversation, I asked Monique whether she had any regrets — not about caring for Darius, but about the financial choices she’s made along the way. She was quiet for a moment.
She paid for her coffee before I could. I’m not sure why I noticed that, but I did.
When I left the diner, I sat in my car for a while. Monique Washington is not in financial crisis by any conventional measure. She is employed, insured, housed, and functional. She is also, quietly and methodically, trading her financial future for her brother’s present — dollar by dollar, month by month — inside a system that doesn’t have a form for what she’s doing or a line item for what it costs her. That story, I thought, deserved to be told out loud.
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