What would you sacrifice to make sure someone you love is cared for after you’re gone? It’s not a hypothetical for everyone. For some people, it’s the question that shapes every financial decision, every sleepless night, every form filed and refiled in a government office that smells like old carpet and fluorescent light.
A social worker named Patricia Reyes at the Douglas County Assistance Center in Omaha suggested I speak with Marlene Kowalski last February. Patricia didn’t say much — just that Marlene had been through something worth hearing about. When I arrived at the office to meet her, Marlene was already there, sitting with her hands folded in her lap, wearing a fleece jacket over yoga clothes. She looked like someone who had learned to rest anywhere she could find a moment.
A Family Built Around One Priority
Marlene Kowalski is 66 years old, a part-time yoga instructor, and the mother of Derek, her 39-year-old son who was born with moderate intellectual disabilities and requires full-time supervision and daily care assistance. She and her husband, Ron, 68, a retired railroad worker, have been Derek’s primary caregivers his entire life — first in a small house they owned on the west side of Omaha, and now in a rented two-bedroom apartment after they sold the house in 2021 to cover accumulated medical debt.
“We made the math work for years,” Marlene told me. “But the math changed. Our bodies changed. And Derek’s needs changed.” She wasn’t looking for sympathy when she said it. She was stating logistics the way a practical person does — just facts, stacked up.
Ron’s railroad pension brings in approximately $1,640 per month. Marlene earns roughly $800 to $1,000 per month teaching yoga classes at a community center, though she’s had to cut back sessions because of her own joint pain. Together, they clear just under $31,000 annually — enough to stay housed, but not enough to hire professional care for Derek, which runs between $18 and $24 per hour in the Omaha market.
Derek had been on Nebraska’s Medicaid Developmental Disabilities (DD) waiver waitlist since 2019. In that time, Marlene and Ron had submitted three formal applications, received two incomplete denials, and attended one appeals hearing they didn’t fully understand. By early 2024, they had also accumulated $14,200 in credit card debt — most of it from medical co-pays, adaptive equipment, and one emergency hospitalization for Derek in 2022.
The Waitlist Years and What They Cost
Nebraska’s Developmental Disabilities waiver, administered through the Division of Developmental Disabilities under the Nebraska Department of Health and Human Services, provides funding for home and community-based support services for eligible individuals. Services can include supported employment, residential assistance, day habilitation programs, and personal care. But access depends entirely on available funding slots — and the line is long.
Marlene described the waitlist period as a slow erosion. “Every year I’d call to check on our status and they’d tell me we were still on the list. I’d ask if there was anything I could do and they’d say no. So we just kept going.” She paused. “You keep going because what else do you do.”
Their credit score, which had been in the mid-680s in 2018, dropped to 591 by mid-2023 after two missed credit card payments during a period when Ron had a health scare and Marlene’s yoga income dropped sharply. That number followed them — affecting their ability to refinance anything, and hovering over conversations about their future like weather.
The Third Application — and What Was Different
The turning point came in the spring of 2024. Marlene told me she had nearly given up on the waiver application process after the second denial, which cited incomplete documentation of Derek’s support needs. She had been using the state’s general application forms, filling them out herself, and submitting them without the kind of clinical language that tends to move applications through bureaucratic systems.
Patricia Reyes — the same social worker who later connected me with Marlene — stepped in through a program that assigns case managers to families of adults with disabilities in Douglas County. Patricia helped Marlene request a formal Functional Assessment update for Derek, a structured evaluation that scores his daily living needs across multiple domains. That updated assessment, completed in August 2024, documented Derek’s support needs in clinical terms that aligned directly with waiver eligibility criteria.
Derek’s third application was approved in November 2024. The approval letter authorized funding for day habilitation services five days per week and up to 15 hours of in-home support monthly. According to Nebraska DHHS rate schedules, that represents approximately $2,100 to $2,400 per month in Medicaid-funded services — services that Marlene and Ron had been providing themselves, unpaid, for decades.
“When the letter came, I read it three times,” Marlene said. “I kept thinking there was a catch. There’s always a catch.” She shook her head slowly. “There wasn’t a catch.”
What Approval Means — and What It Doesn’t Fix
Derek began attending a day habilitation program in January 2025. For the first time in years, Marlene has weekday mornings to herself. She has added two yoga classes back to her weekly schedule. Ron has been able to attend his own cardiology appointments without arranging coverage for Derek first.
The relief is real, but Marlene was careful not to overstate it when we spoke. The credit card debt remains. Their retirement savings — a modest $41,000 in a combined IRA — haven’t grown in three years because they stopped contributing. Marlene’s concern about outliving that money isn’t abstract. At her income level, Social Security retirement benefits, when she claims them, will likely bring in between $870 and $1,100 per month based on her work history — not enough to absorb major unexpected costs.
And then there is the question she returns to most often: what happens to Derek when she and Ron are no longer able to advocate for him the way they have. The waiver program addresses today. It doesn’t answer that.
What Marlene Wants Other Families to Understand
Marlene wasn’t bitter when we talked, but she was direct. She has thought carefully about what she would tell another family starting this process from scratch, and she offered those thoughts without hesitation.
- Get on the waitlist immediately — In Nebraska and many other states, you cannot receive a DD waiver slot until you have been on the waitlist. The clock doesn’t start until the application is in.
- Request a Functional Assessment — don’t just describe needs in your own words — The clinical scoring that comes from a formal assessment carries more weight in the application process than a family’s narrative description, even a detailed one.
- Ask specifically about the aging caregiver priority — Nebraska and several other states have provisions that can accelerate waitlist placement when primary caregivers are elderly or medically compromised. Many families don’t know this exists.
- Contact your state’s Protection and Advocacy organization — In Nebraska, that is Disability Rights Nebraska, which can provide free legal guidance on appeals and eligibility disputes.
- Document everything in writing — Every phone call, every submission, every denial. Marlene kept a spiral notebook. It became her most important document at the appeals stage.
According to KFF (formerly Kaiser Family Foundation), approximately 700,000 people with intellectual and developmental disabilities are on HCBS waiver waitlists across the United States, with some states reporting average wait times of six years or more. Nebraska’s numbers are consistent with that national picture.
As I was leaving, Marlene walked me to the door of the county office. She mentioned almost offhandedly that she was teaching a noon yoga class in two hours — the first time in months she’d been able to schedule a class without worrying about Derek’s coverage. She said it the way people mention small things that mean large things. I didn’t press her on it. Some things are better left as they are.
The story Marlene Kowalski lived for five years is not exceptional in its hardship. What’s exceptional is that she found her way through — exhausted, credit-damaged, still worried about the future — and wanted to make sure someone else could find it faster. That, she told me as she pulled on her coat, was the only reason she agreed to talk.
“I don’t want credit,” she said. “I just want someone else not to wait as long as we did.”
Related: He’s 49 With $41,000 Saved for Retirement — Then a $312 Monthly Garnishment Started Draining What Little Was Left
Related: The Flight Attendant Whose Workers’ Comp Was Denied Twice — and the $14,200 She Finally Recovered
Leave a Reply