Medicaid saved my son’s life: Cutting it would destroy ours

I’m Sarah Krug, a lifelong caregiver—by passion, profession, and necessity. I live in Anchorage, and for the past 20 years, I’ve fought to ensure my son Zak gets the care he needs to survive. I’m writing today to share what Medicaid has meant to my family—and to urge policymakers to protect this lifeline for families like mine.

Zak was born after a traumatic delivery that left him with cerebral palsy. The diagnosis affects nearly every part of his life—his movement, coordination, posture, speech, swallowing, and more. From the beginning, he needed intensive support: therapy, medical equipment, and around-the-clock care.

One week before Zak was born, I qualified for Denali KidCare, Alaska’s Medicaid program for children and pregnant women. That coverage saved his life. He spent six weeks in the NICU. As he grew, so did his needs—weekly therapy, monthly specialist appointments, and daily in-home support. I left college and quit my job to care for him. Even then, much of Zak’s care required two people, making it nearly impossible to manage alone.

When Zak was 5, my own health began to decline, and he was finally approved for Medicaid waiver services. We began receiving some direct support, but never enough to allow me to work enough hours to fully support my family.

Then, life took another unexpected turn—I became a single mother overnight. Suddenly, I was responsible for three children, including one with profound disabilities. I cobbled together jobs—working in the school district, cleaning houses, and caring for other children—just to stay afloat. Medicaid provided some support for Zak, but direct care workers are hard to keep in Alaska. Some left because the pay was too low. Others simply weren’t the right fit.

In January 2023, our world shattered again. Zak developed a sudden, severe neurological condition. His body locked into painful spasms, and he experienced debilitating delirium. He was hospitalized repeatedly over the next eight months, losing motor skills he had spent years working to gain. Now, we’re in a new phase of our journey—helping Zak regain the independence he lost.

Despite working multiple jobs, I still barely make ends meet. Zak’s survival depends on direct support—help with feeding tubes, medications, incontinence care, hygiene, and communication skills. Medicaid makes that possible. Without it, Zak would be forced into an institution, separated from his home, his community, and the life we’ve fought so hard to build.

And yet, even with Medicaid, we are constantly on the edge. Zak qualifies for 20 hours of in-home support, 12 hours of community day programs, 10 hours of personal care assistant support, and 10 hours of respite per week—but due to staffing shortages and Medicaid billing restrictions, we haven’t had more than 30–40 of those hours billed in total since 2020. The rest? That’s me—unpaid labor from a mother who also provides his private insurance coverage.

But even that won’t last forever. In a few short years, Zak will age out of my private insurance. He won’t be able to work full time, and Medicaid will become his only access to life-saving care. What happens if we let that safety net unravel?

Zak isn’t just a number on a budget sheet. He’s a bright, funny, curious young man who loves history, music, and animals. Cerebral palsy affects his muscles—but not his mind, not his dreams, and not his potential.

When politicians talk about cutting Medicaid, they rarely talk about the real cost. If Medicaid is cut:

Families like mine will go bankrupt trying to provide care.

Loved ones will be forced into underfunded institutions.

Thousands of people will simply fall through the cracks.

Any of us—any of you—could one day need Medicaid. Illness, disability, and caregiving needs don’t care about your politics or your bank account. Protecting Medicaid isn’t just a policy choice—it’s a moral one.

Please, don’t balance budgets on the backs of families like mine. Invest in Medicaid. Protect it. Because lives like Zak’s depend on it.

Sarah Krug is a dedicated caregiver, mother of three, and lifelong Alaskan. As a mother to a son with complex medical needs, she has firsthand experience of the critical support Medicaid provides for our most vulnerable residents.