The Social Security Administration’s disability programs paid out roughly $154 billion in benefits in 2025, according to SSA program statistics. For millions of families, those payments are a lifeline. For millions of others — the siblings, the adult children, the friends who quietly absorb the costs that federal programs don’t reach — they are the starting point of a much longer story.
When I sat down with Monique Washington at a diner near her home in Baltimore’s Waverly neighborhood on a Tuesday morning in late March 2026, she had just finished a night shift. She still had her work boots on. She ordered coffee, black, and told me she hadn’t taken a real vacation since 2019.
The Accident That Restructured a Family
Monique’s younger brother, Darnell, was 25 years old when a driver ran a red light and hit him on a Baltimore street in 2008. The collision left him with a traumatic brain injury and partial paralysis on his left side. He requires daily assistance with personal care, cannot drive, and needs specialized transportation to medical appointments several times a month.
Their parents passed away — their father in 2014, their mother in 2019 — leaving Monique as Darnell’s only remaining family and, as she describes it, his de facto case manager, transportation coordinator, and emotional anchor.
Darnell qualified for Social Security Disability Insurance after accumulating enough work credits before his accident, and he has been on Medicare since his 24-month waiting period ended. He also receives Medicaid in Maryland. On paper, his coverage looks comprehensive. In practice, Monique told me, it is not.
Where the Dollars Actually Go
Monique earns solid wages as a Teamsters-represented UPS package car driver — a role with meaningful union protections and a defined benefit pension she is theoretically building toward. But when I asked her to walk me through a typical month, the numbers told a different story than the pay stub.
She estimates she spends between $800 and $1,200 per month on Darnell-related costs that his benefits don’t cover. That includes roughly $300 to $400 for a part-time home aide on days when Medicaid-authorized hours run out, approximately $150 to $200 on medical supplies and over-the-counter medications, and the rest on transportation — gas, rideshares, and occasional wheelchair van rentals when state-approved services aren’t available.
She hasn’t made a contribution to her Teamsters-linked retirement account in over four years. She paused contributions during the pandemic, she said, when overtime dried up and Darnell’s Medicaid hours were temporarily cut. She never restarted.
The Benefits Picture — and Its Blind Spots
Darnell’s SSDI benefit in early 2026 is approximately $1,340 per month, slightly below the national average disabled worker benefit of roughly $1,580, according to SSA’s monthly statistical snapshot. That amount received a 2.5% cost-of-living adjustment in January 2026, consistent with the COLA applied across all Social Security programs.
His Medicare coverage handles most major medical costs, and Maryland’s Medicaid program provides supplemental coverage — including some personal care hours through a home- and community-based waiver. But Monique described navigating those waiver programs as a part-time job of its own.
She described calling the Medicaid office to appeal a reduced authorization, spending three hours on hold, and ultimately being told the hours would be restored — in six weeks. In the meantime, she adjusted her shifts to cover the gap herself, which meant losing overtime pay she had been counting on.
What She Knows About Her Own Future — and What She’s Trying Not to Think About
At 43, Monique is still roughly two decades away from her full Social Security retirement age of 67, as established under current law for workers born after 1960, per SSA’s retirement age chart. She has enough work history that she is earning credits toward a Social Security retirement benefit. But the years she’s spent deprioritizing her own savings will compound over time.
She knows this. When I brought it up — carefully — she went quiet for a moment before answering.
She also can’t easily change her circumstances. Her UPS route and shift are structured around Darnell’s schedule — she specifically chose her current bid assignment so she can be home by a certain hour. Asking for a different shift, she told me, would mean upending an entire care routine she spent years building. Relocation is similarly off the table: Darnell’s Maryland Medicaid benefits, his established medical providers, the aide who knows his routines — all of it is rooted in Baltimore.
The Weight She Carries Without Naming It
At one point during our conversation, I asked Monique if she ever felt angry about her situation — about the financial burden she’d absorbed, the choices she hadn’t been able to make, the retirement account sitting dormant. She took a long sip of her coffee.
She isn’t looking for sympathy, and she made that clear more than once during our conversation. What she wanted, she said, was for people to understand that disability benefits — as important as they are — often function as a floor, not a ceiling. And that the ceiling gets built, quietly, by people like her.
The broader data bears this out. According to research cited by KFF’s Medicaid HCBS analysis, family caregivers provide billions of dollars in unpaid or subsidized support annually that formal benefit programs do not capture. Monique Washington is one data point in that number — except she is also paying for it out of pocket, not just out of hours.
As I left the diner that morning, Monique was already checking her phone for the next day’s route. She had a 4:45 a.m. start and a call to Darnell’s aide to make before then. She waved without looking up. There was nothing dramatic about it. That, maybe, was the whole point.
Related: She Gave Up Retirement Savings to Care for Her Brother — Now at 43, She’s Counting the Cost
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