In March 2026, Maryland’s Department of Health announced a backlog of more than 4,200 people waiting for Medicaid home- and community-based services waivers — the same type of program that Monique Washington’s brother has been enrolled in for over a decade. The waitlist, according to Maryland Medicaid, can stretch three to five years for new applicants. For families already in the system, that statistic reads less like policy news and more like a reminder of how close the edge really is.
I met Monique Washington, 43, on a Tuesday afternoon at a diner near her home in Northeast Baltimore. She had just finished a 10-hour shift driving for UPS. Her hands were still a little red from the cold. She ordered coffee, no food, and told me she had about 45 minutes before she needed to pick up her brother Marcus from his afternoon program.
A Family Reshaped by One Night in 2007
Marcus Washington was 25 when a drunk driver hit his car on the Baltimore Beltway. The crash left him with a traumatic brain injury and limited mobility on his left side. He requires daily assistance with personal care, medication management, and transportation. He cannot live alone.
Their mother died of cancer in 2015. Their father followed two years later. Monique, already informally coordinating Marcus’s care around her work schedule, became his sole legal caregiver and primary support almost overnight.
Marcus receives Social Security Disability Insurance (SSDI) and is enrolled in Maryland Medicaid, including the state’s Community First Choice program, which covers personal care attendants for eligible recipients. On paper, his benefits look comprehensive. In practice, Monique told me, there are gaps that show up every single month.
What Medicaid Actually Covers — and What It Doesn’t
Marcus’s SSDI payment is approximately $1,340 per month, close to the national average for disability beneficiaries in 2025. His Medicaid coverage handles doctor visits, medications, and a set number of personal care attendant hours per week. That is where the official support largely ends.
When I asked Monique to walk me through her monthly spending on Marcus’s care, she pulled out her phone and started scrolling through her bank app. She had never actually added it all up at once. Accessible van service not covered by the transit waiver: roughly $280 a month. Adult day program copays and incidentals: around $150. Adaptive equipment, supplies, and occasional respite care she pays for privately: another $400 to $500. She went quiet for a moment.
“I knew it was a lot,” she said. “I just didn’t know it was that much every single month.”
The Trap of Being Too Financially Stable to Qualify for More Help
Monique earns a competitive wage through her Teamsters Local 355 union contract — she estimates her gross annual income at around $72,000 before overtime. That income has kept her household stable. It has also placed her above the threshold for most additional assistance programs that might otherwise help offset caregiving costs.
She looked into Maryland’s Caregiver Support Program and found that most direct financial assistance is income-tested. She explored whether she could be compensated as Marcus’s personal care attendant through the Medicaid program — a route that some states allow. Maryland’s Developmental Disabilities Administration has limited pathways for family members to receive payment as providers, and Monique’s situation, which involves a brain injury rather than a developmental disability, placed Marcus under a different administrative structure entirely.
“Nobody sat me down and said, here are your options, here is what he qualifies for, here is what you might qualify for,” Monique told me. “I learned everything the hard way, mostly by being told no.”
She did eventually learn, through a social worker at Marcus’s adult day program, that he may be eligible for the state’s Brain Injury Waiver, which could expand his attendant care hours and potentially cover some of the transportation costs she currently pays herself. An application was submitted in January 2026. As of our conversation, she was still waiting for a determination.
The Personal Cost That Doesn’t Show Up in a Benefits Statement
The financial picture is only part of what I wanted to understand when I met Monique. The rest of it is harder to quantify.
She has not taken a vacation — a real one, more than two days — in six years. She works a fixed morning shift, not because it’s the most lucrative, but because it gets her home before Marcus’s afternoon program ends. She has turned down two promotions that would have required different hours or occasional travel. Her retirement savings, once a priority in her late thirties, have sat untouched since 2019.
She said it without self-pity, more as a matter of fact. That delivery — clear-eyed, not asking for sympathy — made it land harder than if she had cried.
The gaps in Marcus’s Medicaid coverage are real and measurable. But the cost to Monique is something no benefit calculation captures: the career she hasn’t built, the retirement account that hasn’t grown, the trip she keeps putting off. These are losses that accumulate quietly over years, and they are borne almost entirely by people who never expected to be in this position at all.
Where Things Stand — and What She’s Still Waiting to Find Out
The Brain Injury Waiver application, if approved, could change Monique’s financial picture in a meaningful way. The waiver provides expanded personal care attendant hours, day program funding, and some transportation coverage — services that, if authorized, could reduce her out-of-pocket spending by as much as $400 to $600 a month, based on the program’s published rate structure.
But she has been told the review process can take four to six months. And there is no guarantee of approval.
She said it with a small, tired laugh. Not defeat — something more like exhausted realism. She’s been doing this long enough to know that relief, when it comes, is usually partial.
When I left her at the diner, she was already looking at her phone, calculating how long it would take to get across town before Marcus’s program let out. She tipped well — I noticed — and she was out the door in under a minute.
Monique Washington’s situation is not unusual. It is, by most measures, representative of what millions of working family caregivers navigate in silence — earning too much for assistance, spending too much on care, and saving too little for the future they keep deferring. The paperwork is still pending. The bills are not.
Related: She’s Spent Years Paying What Medicaid Won’t Cover for Her Disabled Brother — Now Her Own Retirement Is at Risk
Related: She’s Been Her Brother’s Sole Caregiver for 18 Years — and Medicaid Barely Covers Half His Needs
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