The open enrollment window for Maryland Medicaid supplemental waiver programs closes each spring, and this year thousands of families are realizing — too late — that the gap between what the state covers and what disability care actually costs has grown wider. When I reached out to Monique Washington in early March 2026, she had just missed a waiver application deadline by eleven days. She found out by accident, while on a lunch break between delivery routes in East Baltimore.
“I didn’t even know there was a deadline,” she told me, her voice flat in the way people sound when they’ve stopped being surprised by setbacks. “Nobody called. Nobody sent a letter. I just happened to call the office about something else.”
A Life Reshaped by Someone Else’s Emergency
Monique Washington is 43 years old, a UPS driver with 16 years of seniority and a union contract that pays her roughly $87,000 a year before overtime. By most measures, she is financially stable. By her own, she is treading water.
In 2008, her younger brother Darius was 25 when a driver ran a red light and hit him crossing North Avenue. The accident left him with a traumatic brain injury and partial paralysis on his left side. He can speak, dress himself with help, and follow a routine — but he cannot live alone, cannot drive, and requires daily personal care assistance for tasks most people never think about.
Their parents are both gone — their mother passed from a stroke in 2017, their father two years before that. Monique became Darius’s legal guardian in 2018. She never formally decided to take on the role. She describes it the way you might describe gravity: it was simply what happened next.
“I didn’t sit down and make a plan,” she said. “He needed somewhere to go. I was the one who was there.”
What Darius’s Benefits Actually Cover
Darius receives Social Security Disability Insurance, or SSDI, based on his pre-accident work history. His monthly payment is $1,340. He is also enrolled in Maryland Medicaid, which covers his primary care visits, most prescriptions, and a limited number of personal care aide hours per week through the state’s Community First Choice program.
On paper, that sounds like meaningful support. In practice, Monique walked me through the gaps item by item. Medicaid covers 28 hours of aide time per week for Darius. His actual needs, according to the care plan his neurologist submitted in 2024, require closer to 42 hours. The remaining 14 hours are either covered by a private aide Monique pays $18 an hour, or filled by Monique herself on her days off.
Then there is transportation. Darius cannot use standard public transit. Maryland Medicaid provides non-emergency medical transportation to doctor’s appointments, but not to the adult day program he attends three times a week — a program that, according to Monique, is the only consistent social interaction he gets. She pays approximately $240 a month in accessible van service for those trips alone.
The Monthly Math She Has Memorized
When I asked Monique to break down her monthly caregiving costs, she didn’t hesitate. She has run these numbers so many times they come out without effort.
- Supplemental aide hours (14 hrs/week × ~4.3 weeks): approximately $1,100, offset partly by what Darius’s SSDI contributes toward household costs
- Accessible transportation to adult day program: $240/month
- Medical supplies not covered by Medicaid (incontinence products, specialized grip aids, compression garments): roughly $180/month
- Prescription co-pays and over-the-counter supplements his neurologist recommends: $90–$130/month
- Home modifications and maintenance (grab bars, ramp upkeep, wheelchair repairs): averaged over the year, approximately $150/month
After accounting for Darius’s SSDI contribution toward shared household expenses, Monique estimates she personally absorbs between $850 and $980 per month in caregiving costs. Her figure of $920 is the midpoint she uses when thinking about her own budget. Over four years, that is roughly $44,000 she has directed toward her brother’s care — money that did not go into her UPS Teamsters pension supplement, her Roth IRA, or the emergency fund she drained in 2022 when her van needed $3,800 in repairs.
The Shift She Can’t Make — and the Retirement She Can’t Build
Monique’s seniority at UPS would normally give her leverage. She could bid on a Monday-through-Friday day shift, which pays a higher hourly rate and comes with more predictable hours. She hasn’t done it in six years. Darius’s aide schedule, his day program hours, and his medical appointments are all structured around her current Tuesday-through-Saturday rotation. Changing shifts would require rebuilding his entire support structure — and she doesn’t have the time or the energy to do it.
“I’ve thought about it a hundred times,” she told me. “Every time I think I could make it work, something comes up. Last year it was a new aide falling through. The year before it was a Medicaid audit that took three months to resolve. There’s always something.”
She has not taken a vacation longer than four days since 2019. She described a long weekend in Ocean City, Maryland that year as the last time she felt like herself. “I kept calling to check in,” she said. “I couldn’t turn it off.”
The Missed Deadline and What Comes Next
The Maryland Community Pathways Waiver, administered by the Maryland Department of Health’s Behavioral Health Administration, provides enhanced in-home and community support for adults with developmental and acquired disabilities. Qualifying would not eliminate Monique’s out-of-pocket costs entirely, but based on the service descriptions she shared with me, it could reduce the aide hour gap significantly and potentially cover Darius’s day program transportation.
She missed the application window by eleven days. The next opportunity to apply opens in fall 2026. Until then, nothing changes.
The $75 monthly IRA contribution struck me. It is a small number for someone earning what Monique earns. But she framed it the way she frames most things in her life: as a start, not a solution. “I had to start somewhere,” she said. “Even if it’s embarrassing how small it is.”
The Quiet Resentment She Barely Names
Near the end of our conversation, I asked Monique whether she ever felt angry — not at Darius, but at the situation. She was quiet for a long moment. Long enough that I thought the call had dropped.
“Yes,” she finally said. “And then I feel guilty for feeling it. And then I feel angry again.” She laughed, but it was the kind of laugh that doesn’t mean anything is funny.
She told me she has one close friend who checks on her regularly, a coworker named Keisha who drives the same route on alternating days. “Keisha is the only person who asks how I’m doing and actually means it,” Monique said. “Most people ask about Darius.”
The financial strain is real and measurable: roughly $44,000 in caregiving costs over four years, a retirement account with near-zero contributions since 2022, no vacation longer than four days in six years. But what Monique described sitting across from me — quietly, without self-pity — was something harder to put a number on. The cost of becoming the last person standing for someone you love, before you’ve had time to figure out who is standing for you.
She is applying for the Maryland Community Pathways Waiver in the fall. She is logging every receipt. She is putting $75 a month somewhere that belongs to her. It is not enough, and she knows it. But it is what she has right now, and she is doing it anyway.
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