In early March 2026, Maryland’s Medicaid agency began notifying thousands of enrollees that their Home and Community Based Services waiver renewals were due — a routine administrative cycle that, for families like Monique Washington’s, arrives with the weight of a deadline no one prepared them for. I drove out to Baltimore on a Tuesday afternoon to meet Monique at her kitchen table, where a thick accordion folder of her brother Darnell’s medical paperwork sat beside a cold cup of coffee she never got around to finishing.
Monique is 43. She drives a UPS delivery truck, holds a Teamsters card, and earns more than the federal poverty line by a wide margin. By most measures, she is not who people picture when they think of someone struggling with government benefits. But she has not made a contribution to her 401(k) in four years, she has not taken a vacation since 2019, and she told me — with a flatness in her voice that was more exhausted than angry — that she does not expect that to change anytime soon.
How Darnell’s Accident Became Monique’s Permanent Assignment
Darnell Washington was 25 years old when a driver ran a red light and hit the passenger side of his car on I-695. That was 18 years ago. He survived with a traumatic brain injury and limited mobility on his left side, needs daily support with basic activities, and cannot live independently. For a few years, their parents managed his care. Then their mother died in 2014, their father two years later, and Monique — then 31 and already working a full route — became the person who made everything work.
Darnell currently receives Supplemental Security Income and is enrolled in Maryland Medicaid, which covers his primary care visits, some specialist appointments, and his prescription medications. On paper, it looks like a reasonable safety net. In practice, Monique said, the gaps are everywhere.
“Medicaid pays for his doctor,” she told me. “It does not pay for the van with the lift when the accessible transit bus doesn’t show up. It does not pay for the shower chair that broke in January. It does not pay for the extra help I have to hire when I’m on a six-day stretch.”
According to Medicaid.gov’s HCBS overview, states are not required to cover all home and community-based services under standard Medicaid — coverage depends heavily on whether a state has an active 1915(c) waiver program and whether a recipient qualifies and is not on a waitlist. Maryland does have such a waiver, but as Monique discovered, qualifying and actually receiving those services are two different things.
The Numbers She Keeps in Her Head
When I asked Monique to walk me through what she spends on Darnell each month, she didn’t need to look at any documents. She recited the numbers like a bus route she’d driven a thousand times.
Accessible medical transportation alone runs her between $180 and $220 a month on the months when Maryland’s Medicaid transportation benefit either falls through or doesn’t cover the specific facility Darnell needs to reach. Medical supplies — incontinence products, skin barrier creams, replacement adaptive equipment — add another $150 to $200. On months when Monique needs to hire a part-time aide because her shift runs long or she picks up overtime, that cost jumps by another $200 to $300.
“People hear I drive for UPS and they think I’m fine,” she said. “I’m not hurting the way some people hurt. But I’m 43 and I don’t have a retirement. That scares me more than anything else right now.”
The HCBS Waiver: What It Covered, What It Didn’t
The turning point in Monique’s story — and I want to be clear that it is a partial turning point, not a resolution — came in the fall of 2023, when a social worker at Darnell’s neurologist’s office told her she should apply for Maryland’s Community Supports Waiver. The waiver, which falls under Medicaid’s HCBS framework, is designed to fund non-medical services that help people with disabilities remain in community settings rather than institutions.
Darnell was approved in early 2024, after a process Monique described as slow, paper-heavy, and confusing for anyone who didn’t have time to read dense eligibility documents. The waiver now covers a portion of his personal care aide hours each week — roughly 15 hours, which Monique said fills about half of what she actually needs covered.
The waiver reduced her out-of-pocket spending by roughly $250 to $300 per month. She was grateful for that. But she was also clear with me that it did not change the structural reality of her situation: she cannot pick up a different shift, cannot move to a less expensive city, and cannot take on a second job because every margin of her time is already spoken for.
What the Benefits Actually Cover — and Where the Cracks Are
To understand Monique’s frustration, it helps to see what Darnell’s benefits do and do not include. According to SSA’s SSI program page, SSI is a needs-based federal program for people who are aged, blind, or disabled and have limited income and resources. The maximum federal benefit is adjusted annually; in 2026 it sits at approximately $967 for an individual.
What the table cannot capture is the opportunity cost column. Monique’s Teamsters contract includes an employer match on her 401(k) — money she has not been collecting because she stopped contributing to keep her take-home pay available for Darnell’s expenses. Over four years, with the employer match factored in, that represents a significant sum she will not recover.
Living with the Weight of a Choice That Wasn’t Really a Choice
When I asked Monique if she ever resented the situation, she was quiet for a moment. Not uncomfortable — more like someone choosing words carefully after years of not saying them out loud.
According to research compiled by AARP’s caregiving research, family caregivers in the United States spend an average of roughly $7,200 per year out of pocket on caregiving expenses. For caregivers providing intensive, daily support — which Monique largely does — that figure can run considerably higher. The research also finds that caregivers are significantly more likely to reduce work hours or exit the workforce than non-caregivers, with long-term consequences for their own retirement security.
Monique has not reduced her hours. She has kept every shift, driven every route. The trade-off is that the parts of life not on a clock — the vacation she mentioned offhandedly, the idea of having some buffer in her own bank account — have simply not happened.
“Six years,” she said, when I asked about the last real trip she took. “I went to Charlotte for my cousin’s wedding in 2019. That was the last time I went anywhere that wasn’t for Darnell or for work.” She paused. “I keep saying next year. I’ve been saying next year for a while now.”
As I drove back from Baltimore that evening, I kept returning to something Monique said near the end of our conversation — not a complaint exactly, more like a statement of fact she’d arrived at after a long time: that the benefit programs Darnell relies on were designed to keep him alive and housed and medicated, and that nobody who designed them made space for what it costs the person standing next to him. She isn’t looking for sympathy. She’s looking for the math to work out differently than it does.
At 43, with a waiver renewal sitting in that accordion folder, and a retirement clock she knows is running, Monique Washington is still driving the route. She just isn’t sure where it ends.
Related: She Earns $78,000 a Year Driving for UPS and Still Can’t Save for Retirement — Her Brother’s Medicaid Gaps Cost Her More
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