The assumption that government disability programs adequately cover what disabled Americans truly need is one of the most expensive myths in American social policy — not just for the people living with disabilities, but for the family members quietly paying the difference out of pocket, year after year, with no subsidy, no tax offset, and no end in sight.
When I sat down with Monique Washington at a diner near her home in Baltimore’s Parkville neighborhood on a Tuesday morning before her afternoon shift, she arrived in her UPS uniform, coffee already in hand. She was punctual, composed, and almost apologetic about taking up my time. It took about four minutes of conversation before I understood that she had been holding a weight most people never see.
The Accident That Changed Two Lives
Monique’s younger brother, Darnell, was 25 years old when a driver ran a red light in Baltimore County and changed the course of both their lives. The crash left Darnell with a traumatic brain injury and permanent physical limitations that require daily assistance — help with mobility, medication management, hygiene, and routine tasks that most adults handle independently.
He was approved for Social Security Disability Insurance and Medicaid benefits within roughly 18 months of the accident. On paper, it sounds like a safety net. In practice, Monique told me, it was more like a floor with large gaps cut into it.
When Monique’s parents were still alive, the caregiving responsibilities were distributed across the family. Her mother handled daytime support. Her father managed doctor’s appointments and advocacy. Monique worked her route, sent money home, and told herself it was a team effort. Then her father died of a heart attack in 2014. Her mother passed from cancer in 2018. And just like that, the team was one person.
What Medicaid Covers — and the Gap Monique Fills
Maryland’s Medicaid program covers a range of services for adults with disabilities, including personal care, some home health aide hours, and durable medical equipment. According to Medicaid.gov, states have discretion over many optional benefits, which means coverage varies significantly depending on where someone lives and how their disability is classified.
For Darnell, Medicaid covers his primary medical appointments and a limited number of personal care aide hours each week. What it does not cover — and what Monique pays for — is a longer list than most people expect.
- Supplemental care aide hours beyond what Medicaid authorizes, which Monique privately contracts at roughly $18–$22 per hour
- Accessible transportation for non-emergency medical and personal trips, including visits to specialists not covered under Medicaid transport vouchers
- Adaptive equipment replacements — wheelchair components, grip rails, bathroom safety equipment — when originals wear out faster than Medicaid’s replacement schedule allows
- Over-the-counter medications, nutritional supplements, and hygiene products not classified as medically necessary under Maryland’s Medicaid guidelines
- Emergency cost overruns when scheduled aides cancel and Monique must pay out of pocket for last-minute coverage
She estimates she spends between $700 and $1,100 per month filling these gaps, depending on the season and whether any equipment needs replacing. That figure does not include her own time — the hours she covers herself before or after shifts, on weekends, and on the days she calls in personal leave to take Darnell to an appointment.
The Financial Trap She Can’t Get Out Of
Monique earns a solid wage through her Teamsters union contract — she was careful not to give me an exact number, but she acknowledged it was above the Maryland median household income. By most measures, she is not a low-income worker. That classification is part of what makes her situation so hard to navigate.
She does not qualify for most need-based caregiver assistance programs, which are typically means-tested. She earns too much for certain state wraparound services but too little to comfortably absorb Darnell’s care costs without it visibly cutting into her own financial stability. She has not made a meaningful contribution to her retirement in years. She has not taken a real vacation since 2019.
She also cannot change her work schedule or relocate for better opportunities — factors that affect career advancement in ways that are hard to quantify. She bid for an earlier shift this year that would have come with higher seniority benefits. She turned it down because it conflicted with Darnell’s morning care window before his aide arrives.
What She Found — and What She Didn’t
When I asked Monique whether she had looked into any federal or state relief programs specifically for family caregivers, she laughed — not bitterly, but with the resignation of someone who had done that homework years ago and come up mostly empty.
She had applied for Maryland’s Community First Choice program to expand Darnell’s authorized aide hours. After a nine-month wait and two appeal letters, he received a modest increase. She had also worked with a social worker to ensure Darnell was receiving the full value of his SSDI benefits, which according to the Social Security Administration, averaged approximately $1,580 per month for disabled workers in 2025.
The tax angle was one area where she felt she had left money on the table for years. A tax preparer she consulted in 2024 flagged that she might qualify for the IRS Credit for Other Dependents — a nonrefundable credit of up to $500 for qualifying relatives who don’t meet the child tax credit threshold. Whether Darnell qualifies depends on specific income and support tests that Monique said she found confusing to navigate without professional help.
The Outcome — and What It Didn’t Fix
By the time Monique and I finished talking, nearly two hours had passed. She had a shift to get to. The material improvements she described were real but incremental — more aide hours, a small tax credit she hadn’t claimed before, a slightly better grip on Darnell’s care schedule after connecting with a local disability services coordinator.
What hadn’t changed was the structural reality: she is still the last line of financial defense for her brother, still absorbing hundreds of dollars per month in costs that no program fully accounts for, and still watching her own retirement recede further into the future with each passing year.
She is not angry, exactly — or if she is, she has organized it into something quieter and more durable. What struck me most was a comment she made near the end of our conversation, almost as an aside, as she was putting on her jacket.
She drove to work. I sat in the diner parking lot for a few minutes afterward, thinking about how many versions of Monique Washington exist in this country — people with stable employment and invisible financial crises, holding families together in the space between what the system promises and what it actually delivers.
There is no clean resolution to Monique’s story. The bills will come next month. Darnell will need care. She will show up. The gap between his benefits and his actual needs will remain — and she will fill it, the way she always has, without anyone calling it what it is.
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