The window for families to request a Medicaid waiver reassessment in Maryland closes every spring, and when I reached out to Monique Washington in late March 2026, she was in the middle of filing paperwork for the third time in five years. Each time, she told me, the answer had been the same: her brother Marcus qualifies for what he qualifies for, and the rest is her problem.
Monique is 43 years old and drives for UPS out of a Baltimore distribution hub. She has worked there for fourteen years. She earns what she describes as “good money” — union scale, health benefits, overtime when she wants it. On paper, she should be fine. In practice, she is quietly running out of runway.
The Accident That Changed the Financial Architecture of Her Family
Marcus Washington was 25 when a driver ran a red light on North Avenue and ended his independent life. He survived. He has lived with a traumatic brain injury and limited mobility ever since — now 36, requiring daily assistance with meals, hygiene, transportation to medical appointments, and medication management. Their mother died in 2019. Their father followed in 2021. That left Monique.
Marcus receives Supplemental Security Income through the Social Security Administration — the 2026 federal benefit rate sits at $967 per month for an eligible individual. He also receives Maryland Medicaid, which covers his primary physician visits and some home health aide hours. What it does not cover is the gap between what the state authorizes and what Marcus actually needs to get through a week safely.
“The state gives him sixteen hours of aide time a week,” Monique told me, sitting at her kitchen table in Northeast Baltimore with a folder of claims documents in front of her. “Sixteen hours. That’s not even half a workday per day. I cover the rest — or it doesn’t get covered.”
She estimates she spends roughly $900 a month on what she calls the “leftover” — a private transportation service for Marcus’s twice-weekly physical therapy, medical supplies that Medicaid classifies as non-essential, and weekend aide hours she pays out of pocket. That figure has grown every year since 2022.
The Retirement Account She Stopped Feeding
Monique opened a Teamsters pension and a personal Roth IRA in her late twenties. She contributed consistently until 2022, when two things happened at once: her father’s hospice costs drained the family’s last shared savings, and Marcus’s aide situation deteriorated after a staffing shortage at his home care agency.
According to SSA benefit projections, every year a worker in their early forties delays retirement contributions can meaningfully reduce their eventual Social Security benefit calculation, which is based on the highest 35 years of earnings indexed for inflation. Monique knows the theory. She said she learned it in a union financial wellness seminar years ago.
“I know what I’m supposed to be doing,” she said. “I just also know what my brother needs to eat on a Thursday when his aide doesn’t show up.”
What the Benefits Cover and What Falls Through
Maryland’s Medicaid program operates several waiver programs for individuals with developmental and physical disabilities, but eligibility and authorized hours vary significantly based on need assessments conducted by the state. Families who disagree with an assessment can appeal, which Monique has done twice. She won a modest increase in authorized aide hours in 2024 — four additional hours per week — which she described as a partial victory that still left her paying for weekend coverage.
The accessible transportation piece is its own chapter. Marcus’s Medicaid plan covers rides to primary care appointments but not to physical therapy, which his neurologist considers essential maintenance. Monique found a private medical transport company that charges $68 per round trip. At two trips per week, that alone runs her roughly $544 a month during a normal month — a cost she’s been absorbing for over two years.
The Life She Has Put on Hold
Monique’s UPS route runs six days a week during peak season. She cannot bid for a different shift because her current hours align with Marcus’s daytime aide schedule — the only window in which she can reliably leave home. She has not requested a transfer to a higher-paying hub route for the same reason. A promotion she was offered in 2023 would have required occasional overnight travel. She turned it down.
She has not taken a vacation in six years. The last one was a long weekend in Virginia Beach in 2020, before her father got sick. She described it carefully, like someone describing something that happened to a different person.
What she does carry, alongside the exhaustion, is something harder to name. When I asked whether she resented Marcus, she was quiet for a moment. “Not Marcus,” she finally said. “Never him. I resent the situation. I resent that the system acts like the family is just supposed to pick up whatever it drops.”
Where Things Stand Now
When I spoke with Monique in March 2026, she had submitted her third Medicaid waiver reassessment request and was waiting on a response. She had also, for the first time in four years, restarted a small automatic contribution to her Roth IRA — $75 a month, she told me, almost apologetically. “I know it’s not enough. But it’s something.”
She is exploring whether Marcus might qualify for additional hours under Maryland’s Maryland Department of Health Community First Choice program, which she learned about through a caregiver support group she joined online last fall. The eligibility criteria are different from the waiver program she’s been using, and there may be overlap in what’s authorized — but she hasn’t gotten clear answers yet.
Seventy-five dollars a month is not the retirement plan Monique envisioned at 29. But watching her describe it — the deliberateness of setting it up, the specific number she chose because it wouldn’t destabilize the caregiving budget — I was struck by how carefully she has mapped the exact edges of what she can afford to give herself.
“I’m not going to pretend I have this figured out,” she told me as I was leaving. “I just know I can’t stop. Marcus needs me. And I’m trying to remember that I’m still a person with a future too.”
That tension — between the person she is to her brother and the person she is for herself — is one that millions of family caregivers navigate without roadmaps, without backup, and, far too often, without recognition. Monique Washington’s story is not a how-to. It is a portrait of what caregiving actually costs, counted in dollars and in years.
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