The first thing Monique Washington did when she sat down across from me at a diner in East Baltimore was order coffee — black — and apologize for being five minutes late. She’d come straight from dropping her brother Marcus off at his physical therapy appointment. She does that twice a week, on top of a full shift driving for UPS. She didn’t say it like a complaint. She said it like a fact of life.
I’d reached out to Monique after a reader tip about family caregivers who fall through the cracks of the Social Security system — people who are technically doing fine on paper, but are quietly hollowing out their own financial futures to hold someone else’s together. Monique, 43, fit that description almost exactly.
A Car Accident at 25 That Changed Two Lives
Monique’s brother Marcus was 25 when a drunk driver hit his car on I-95 in the summer of 2011. He survived, but the spinal cord injury he sustained left him with permanent mobility limitations and a need for daily assistance. Their mother died in 2017, their father in 2020. Monique became his sole caregiver by default — not by legal arrangement, not by a formal plan, but because there was simply no one else.
“I never sat down and decided, ‘I’m going to do this,” Monique told me, wrapping both hands around her mug. “It just became what I did. You don’t really stop to think about what it costs you until one day you look at your retirement account and there’s basically nothing there.”
Marcus, now 40, receives Social Security Disability Insurance. According to the Social Security Administration, the average SSDI monthly payment in 2025 was approximately $1,580. His benefit lands in that range. It covers his rent in a ground-floor accessible unit and his basic utilities. What it doesn’t cover is the gap between what Medicaid pays for and what he actually needs.
That 2.5% cost-of-living adjustment, which SSA confirmed for 2025, added roughly $38 a month to Marcus’s check. Monique knew the number before I mentioned it. She tracks these things the way you track things when they directly affect your household budget.
When SSDI Doesn’t Cover the Gaps
This is where the story gets complicated in the way most government benefit stories do — not with a single dramatic failure, but with a dozen small shortfalls that add up over years.
Marcus qualifies for Medicaid in Maryland, which covers his primary medical care and some in-home support. But Monique described a list of needs that fall just outside what the program covers: specialized cushioning for his wheelchair, certain medical supplies that Medicaid deems “non-essential,” and the accessible transportation for appointments when the state-contracted van service cancels last-minute — which, she said, happens more than anyone in a government office would like to admit.
I asked her to walk me through a recent month. In February, she paid $180 for a specialized pressure-relief cushion not covered by Medicaid, $95 out-of-pocket for a rescheduled medical transport, and approximately $130 in medical supplies. That’s over $400 in a single month on top of her own bills — and she described it as “a pretty normal month.”
Medicaid’s coverage gaps for disability-related supplies are well-documented. According to Medicaid.gov, states have flexibility in what optional benefits they cover, meaning what’s available in Maryland differs from what someone in another state might receive. Monique isn’t gaming any system. She’s just absorbing the difference.
The Retirement Savings She’s Quietly Given Up
Monique drives for UPS under a Teamsters contract. Her wages are solid — she made approximately $87,000 last year including overtime. She has access to a union pension and could contribute to a 401(k). On paper, she looks like someone who should be building real retirement security.
The reality she described to me was different. She stopped contributing to her 401(k) three years ago when Marcus had a hospitalization that left her with roughly $2,200 in unreimbursed costs. She never restarted. Her pension will vest after 30 years of service, and she’s at 19 — so the long-term math still works if nothing else changes. But Monique was direct about what “nothing else changing” actually requires.
“I can’t take a different shift because I need to be available for him in the evenings. I can’t relocate for a promotion because I can’t move him and start over with all new Medicaid paperwork and providers. I haven’t taken a real vacation in six years. Six years,” she said, and then she stopped talking for a moment.
Her own Social Security future is also affected, though indirectly. Her earnings record is strong — she’s been paying into the system since she was 19. But the years she cuts back hours or declines overtime to accommodate caregiving reduce her average indexed monthly earnings, the figure SSA uses to calculate her eventual benefit. Every reduction matters over a 35-year calculation window.
The Moment She Started Asking Questions
When I asked what brought her to the point of actually looking into her situation more formally, Monique described a conversation she had with a coworker last fall — a woman about ten years older who had just received her first Social Security statement projection and was stunned by how low the number was.
“She showed me her statement and said, ‘This is not going to be enough.’ And I thought, well, I haven’t even looked at mine in years. So I logged into my SSA account that night and I just sat there staring at it.” Her projected retirement benefit at 67, based on her current earnings trajectory, was lower than she’d expected. Not disastrously low — but low enough to matter.
The waiver inquiry was still pending when we spoke. She told me the waitlist for expanded Medicaid home and community-based services in Maryland can stretch from months to years, depending on the program. “I filed the paperwork. I’m not holding my breath,” she said flatly.
Where Things Stand Now — and What Monique Knows She’s Sacrificed
I asked Monique if she resented it — the situation, the years, the money. She took a long pause before she answered.
That guilt is something I heard in almost every sentence she didn’t finish. Monique is not a victim in her own telling of the story. She frames herself as someone making a choice, even when the choice was made for her by circumstance. But the financial reality is clear: she is subsidizing a gap in the federal disability benefit system with her own retirement security, and she has been doing it for years without anyone formally acknowledging that tradeoff.
Family caregivers who provide unpaid support to SSDI recipients are, according to various estimates, saving the federal government tens of billions of dollars annually in institutional care costs. There is no corresponding credit, no Social Security earnings boost, no formal recognition of that contribution in how their own future benefits are calculated.
As we wrapped up, I asked Monique what she wanted people to understand about her situation — not what policy she wanted changed, just what she wanted people to know. She thought about it for a moment.
“That people like me exist everywhere. We’re not on any list. We’re not getting any assistance. We’re just doing it. And we’re going to be in our 60s one day wondering why our Social Security check is so small, and nobody’s going to connect those dots for us.”
She finished her coffee, checked her phone, and told me she had to pick Marcus up in forty minutes. She left a precise tip — exactly 20 percent — and walked out into a gray Baltimore afternoon without looking back.
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