The standard assumption about disability benefits is that they catch people when they fall. That if someone becomes severely disabled, the government programs — Medicaid, SSI, SSDI — will cover the essentials and spare the family from financial ruin. After spending an afternoon with Monique Washington in her Baltimore rowhouse, I can tell you that assumption is not just incomplete. For the people quietly holding families together, it can be quietly devastating.
Monique is 43 years old, a full-time UPS driver and Teamsters union member. She is, by almost any measure, doing well for herself. But when I looked around her living room — the shower chair visible through a doorway, the stack of medical supply invoices on the kitchen counter — the picture became more complicated. Her younger brother Marcus has required daily care since a car accident left him with a serious spinal injury eighteen years ago, when he was just 25. Both of their parents have since passed. Monique is the only one left.
When the Benefits Don’t Add Up
Marcus receives both Supplemental Security Income and Medicaid — the two primary federal programs designed for low-income individuals with disabilities. According to the Social Security Administration, the maximum federal SSI benefit in 2025 was $967 per month for an individual, though many states provide a small supplemental payment on top of that. Medicaid, administered through each state, covers a wide range of medical services — but coverage has significant holes when it comes to day-to-day living assistance.
As Monique explained to me, it is those holes that have defined the last decade and a half of her life. Marcus qualifies for Maryland’s Medicaid Home and Community-Based Services waiver, which is supposed to fund in-home care hours. But the program has a waiting list. He spent years on it. And even after getting partial approval, the funded hours fell short of what he actually needs each day.
What Medicaid does not cover, in Marcus’s case, includes certain medical supplies that must be purchased out-of-pocket, specialized transportation to appointments that go beyond what the state’s non-emergency medical transport program will authorize, and any additional personal care aide hours beyond what the waiver funds. Monique covers all of it. She estimates she spends roughly $800 to $1,100 per month out of her own pocket on her brother’s supplemental needs, depending on what the month brings.
What Medicaid Does — and Doesn’t — Cover
Medicaid is often described as comprehensive, and in many respects it is. For people with significant disabilities, it can cover physician visits, hospital stays, prescription drugs, durable medical equipment, and — through waivers — some level of personal care services. But the program’s coverage is highly dependent on how each state designs its waiver programs, which services it chooses to include, and what funding is available in a given year.
When I asked Monique to walk me through a typical month of expenses for Marcus, she pulled up a note on her phone. Accessible transportation — a van with a wheelchair lift — runs well above what Maryland’s standard non-emergency medical transport authorization covers for routine trips. Some medical supplies, including particular wound-care materials Marcus requires, are not on the state’s covered formulary. And when his approved personal care aide hours run out mid-week, it is Monique who steps in, often rearranging her schedule around her UPS route.
According to Medicaid.gov, states have broad discretion in designing their HCBS waiver programs, including which populations they serve and what services they include. That flexibility, while intended to allow states to tailor programs to local needs, also creates enormous variation in what families like Monique’s can actually access.
The Hidden Cost of Being the One Who Stays
Monique told me she never made a formal decision to become Marcus’s primary caregiver. When their mother died, it was simply understood. “I was already the one handling things,” she said. “It just became official.” She said it matter-of-factly, without self-pity, but the weight behind the words was clear.
She has not changed shifts at UPS in seven years because her current schedule allows her to be home by mid-afternoon to manage Marcus’s care transition. She has turned down at least two opportunities for a higher-paying supervisory role because the hours would conflict with his routine. She has not contributed to her 401(k) in four years — the money gets absorbed elsewhere before she can direct it there.
The AARP Public Policy Institute has estimated that roughly 53 million Americans provide unpaid care to an adult or child, with an economic value exceeding $470 billion annually — labor that largely goes uncompensated and unrecognized in the formal economy. Monique is somewhere inside that number, and from where she sits, the number feels abstract. “Nobody’s going to give me a credit for it,” she said with a short, dry laugh. “I know that.”
Six Years Without a Vacation, and No Clear End in Sight
When I asked Monique the last time she had taken more than a weekend away from Baltimore, she paused long enough that I thought she was calculating. She wasn’t. She already knew. “Six years,” she said. “And even that trip — I was calling twice a day to check on him.”
The resentment she names is specific and controlled — she is careful to separate it from her feelings about her brother. But it surfaces in the details. She mentioned, almost as an aside, that she had been diagnosed with hypertension two years ago and that her doctor had told her stress was a contributing factor. She has been managing it with medication. She hasn’t told Marcus.
What keeps her up at night, she said, is not the present arrangement but what happens if it breaks down. What if her hours get cut? What if she gets injured on the job — not uncommon for package handlers — and can no longer fill in the gaps that Medicaid leaves? Marcus has no other safety net. The formal system, as she has experienced it, is built for people without a Monique in their lives.
She has looked into caregiver support programs, including Maryland’s Family Caregiver Support Program, which offers some counseling and respite services for family members in her situation. She attended one information session. The respite care available, she said, was limited and the paperwork felt like another job. She hasn’t followed up. She ran out of time.
What Reporting This Story Left Me With
I have covered public assistance programs for years. I have written about benefit cliffs and eligibility traps and administrative burdens. Monique’s story doesn’t fit neatly into any of those categories, which is part of what makes it important. She is not a person who fell through the cracks of the system. She is the person the system leaned on to fill its own cracks, without asking, without compensation, and without acknowledgment.
She is 43 years old and has not saved for retirement in four years. She has not taken a real vacation in six. She has a chronic health condition she is managing quietly so as not to worry the person she takes care of. By any reasonable measure, the cost of her brother’s disability has been distributed unevenly — partly onto the government programs that were designed for it, and partly onto Monique Washington, who was not.
When I left her house on a gray Tuesday afternoon in March, she was already on the phone coordinating a medical supply delivery for Marcus scheduled for later that week. She waved goodbye with the hand not holding the phone. I drove back through Baltimore thinking about what she’d said near the end of our conversation: “I’m not looking for sympathy. I just want people to understand that ‘covered by Medicaid’ doesn’t mean what they think it means.” She is right. And the people who need to hear that most are the ones who have never had to learn it firsthand.
Related: She Earns a Union Wage and Still Can’t Save for Retirement — Her Brother’s Disability Benefits Don’t Cover Everything
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