In early March 2026, Maryland’s Department of Health quietly updated its Medicaid waiver waitlist estimates — and for families like Monique Washington’s, even a small change in that number carries enormous weight. When I sat down with Monique at a diner near her home in East Baltimore, she had just gotten off a ten-hour shift driving for UPS. Her uniform was still on. She hadn’t had time to change.
She is 43 years old, earns roughly $78,000 a year in base wages thanks to her Teamsters contract, and has not contributed a single dollar to her retirement account in over four years. The reason for that, she told me, is her brother Marcus — and the sprawling, expensive gap between what his government benefits cover and what he actually needs.
A Life Rerouted at 25
Marcus Washington was 25 when a driver ran a red light on I-695 and changed everything. The collision left him with a traumatic brain injury and limited mobility on his left side. He was in rehabilitation for nearly two years. By the time their parents had exhausted their savings on his initial care, Marcus was 28 — and Monique, then in her late twenties herself, had quietly become his primary support system.
Their mother died of heart failure in 2018. Their father followed in 2021. There was no family meeting, no formal transfer of responsibility. It simply landed on Monique, because she was there.
Marcus currently receives Social Security Disability Insurance. According to the Social Security Administration, the average SSDI monthly payment in early 2026 is approximately $1,580. For Marcus, whose work history before the accident was limited, his benefit sits below that average. He also receives Medicaid as his primary health insurance, which covers physician visits, hospitalizations, and some in-home aide hours through Maryland’s Community First Choice program.
But Monique has learned, expensively, what Medicaid does not cover.
What Medicaid Covers — and What It Doesn’t
Medicaid’s scope varies significantly by state, and Maryland’s program is considered relatively robust compared to many others. Through the Maryland Medicaid program, enrollees with qualifying disabilities can access in-home aide services, durable medical equipment, and certain therapeutic services. For Marcus, that means a part-time aide for roughly 20 hours per week.
Twenty hours is not enough. Monique told me that Marcus needs help with daily tasks including bathing, meal preparation, and navigating the house safely. The aide covers mornings on weekdays. The rest falls to her — early evenings, weekends, and any day the aide cancels, which happens more than she’d like to admit.
The out-of-pocket costs Monique described to me were granular and specific in the way only someone who has been tracking them for years could be. Accessible transportation — a modified van service for Marcus’s medical appointments not covered by Medicaid’s transport benefit — runs her approximately $180 a month. Medical supplies like specialized gloves, incontinence products, and wound-care materials she buys herself account for another $200 to $250. A weekend aide she privately contracts, because Medicaid won’t cover weekend hours at Marcus’s current care level, costs $400 a month on a good month. Her total supplemental spend hovers between $600 and $900 monthly.
The Waiver Waitlist Problem
Two years ago, a social worker at Marcus’s neurologist’s office told Monique to apply for a higher level of services through Maryland’s Community First Choice Option — a Medicaid-funded program that can expand in-home aide hours and cover additional supports for people with significant disabilities. Monique applied in late 2023.
As of March 2026, she is still waiting for a determination on expanded hours. She was told the review process had been delayed due to staffing changes at the state agency. According to Medicaid.gov, Home and Community Based Services waiver programs are administered individually by each state, meaning timelines, eligibility criteria, and funding availability vary widely. In some states, waiver waitlists stretch beyond 24 months.
Monique knows what a successful waiver determination could mean for her — potentially an additional 10 to 15 covered aide hours per week, which would reduce her private aide costs by several hundred dollars monthly. She is trying not to plan around it.
The Retirement She Isn’t Building
When I asked Monique about her own financial future, she paused for a long time before answering. Not the pause of someone who doesn’t know — the pause of someone who knows exactly and finds it difficult to say out loud.
She stopped contributing to her Teamsters pension supplemental savings account in 2022, when Marcus’s private aide costs increased after his previous aide left the field entirely. She told me she does still accrue pension credits through her union contract — that part is automatic — but the voluntary contributions she had been making, roughly $250 a month, stopped. Over four years, that’s approximately $12,000 she hasn’t put aside, not counting the compounding growth she might have seen.
She has also not taken more than two consecutive days off work in over six years. Her employer, she told me, has been accommodating about shift scheduling — she works early morning routes specifically so she can be home by mid-afternoon for Marcus’s transition from his morning aide. But that early shift is also the lower-paying one. She turned down a supervisor track opportunity in 2023 because it would have required evening availability she couldn’t guarantee.
A Partial Turn, and What It Didn’t Fix
In January 2026, Monique finally connected with a Medicaid benefits counselor through a nonprofit called the Caregivers Action Network, which referred her to Maryland’s Local Health Department outreach program. That counselor helped her identify two things she hadn’t known about: a state-funded Rare and Expensive Case Management program that Marcus may partially qualify for based on his TBI diagnosis, and a caregiver respite grant through Maryland’s Department of Aging — a small, competitive fund that provides up to $500 annually to family caregivers for temporary relief services.
She applied for both in February. She has not heard back on either.
What the counselor could not fix was the structural problem: Monique earns too much to qualify for most means-tested assistance herself, and too little to absorb the full cost of Marcus’s needs without sacrifice. She is caught in what benefits advocates sometimes call the “caregiver income cliff” — a threshold zone where earnings remove you from eligibility for support programs but do not actually cover the care costs those programs were designed to address.
When I asked Monique if she resents Marcus, she shook her head firmly and immediately. But then she added something that stayed with me after I left the diner.
It is a question without a clean answer. For Monique Washington, the work of caregiving — the driving, the scheduling, the financial improvisation, the silent grief of a life perpetually deferred — continues on a Tuesday morning in March, with a uniform she didn’t have time to change out of and a cup of coffee she ordered but barely touched.
She told me she had to leave by 6:15 to get home before the morning aide’s shift ended. She left at 6:12, on the dot.
Related: Claiming Social Security at 62 Feels Smart Until You See What It Actually Costs You Over 20 Years
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