TOPEKA — Kathy Keck and Jacob Perron carried with them one large photograph and many memories of the late Mireya Keck, a child adopted into the family after suffering a brain injury when aggressively shaken at 7 weeks of age.

Keck spoke of Mireya while her sibling, Perron, held an image capturing a moment when brother and sister shared a laugh. The occasion was made possible, in large measure, by Mireya’s eligibility for Medicaid benefits that provided nursing services so she could live a life not available to her in an institutional hospital, Keck said. She died Jan. 30, 2024, in hospice at home south of Topeka.

“Without Medicaid,” Keck said, “we wouldn’t have been able to keep Mireya living in a home where she was loved. She knew love and she knew great joy.”

Keck and Perron, who suffered a brain injury at birth that led to cerebral palsy and other disabilities, took part Monday evening in a Medicaid forum with a couple dozen other people at the Topeka & Shawnee County Public Library. The event provided a forum to share thoughts about the value of Medicaid to people with disabilities, seniors in nursing homes or who get care at home, pregnant women or low-income youth in Kansas.

The event offered folks with personal insight into Medicaid the opportunity to speak to others with knowledge of how the national health program influenced quality of life.

But the ultimate audience was limited to six individuals — U.S. Reps. Sharice Davids, Traci Mann, Ron Estes and Derek Schmidt and U.S. Sens. Jerry Moran and Roger Marshall of Kansas. These elected politicians working in the U.S. Capitol could eventually be asked to vote on federal legislation — details aren’t publicly available — that slashed federal Medicaid spending over the next 10 years.

“This is not right or left. This is truly a human right,” Keck said. “Yes, we want to get rid of fraud. People using the support, that’s not fraud. That’s called helping people live their best life in the most respectful and dignified way possible.”

The budget knife

Medicaid is a joint federal and state program serving about 72 million Americans and 425,000 Kansans with limited income and resources. Forty states and the District of Columbia, but not Kansas, expanded eligibility for Medicaid under the Affordable Care Act to include lower-income adults.

In Washington, a U.S. House committee with oversight of Medicaid has been assigned the task of finding $880 billion in savings over the next decade. Medicaid funding flows directly to states, so reductions in federal appropriations for Medicaid would take the form of cuts to state budgets.

Ben Sommers, professor of health care economics at Harvard University and a professor of medicine at Harvard Medical School, said during an online briefing for reporters that most federal lawmakers, whether Republican or Democrat, were worried about how deep cuts to Medicaid would resonate among their constituents.

He said profound reductions could negatively impact hospitals reliant on Medicaid funding and other health care providers engaged in delivering Medicaid services. Eight rural hospitals in Kansas shut down in-patient services since 2015, Medicaid advocates said, and Kansas had more rural hospitals at risk of closing than any state of comparable size.

“Right now, we have big numbers to target,” Sommers said the $880 billion, 10-year objective. “We don’t have a lot of explanation of where that money comes from. That’s all kind of behind closed doors.”

Political rhetoric from House and Senate members keen to cut federal spending was often linked to the goal of addressing government waste, fraud and abuse.

“There is simply no way to get to a number that big through waste, fraud and abuse. There isn’t enough fat to cut from Medicaid to get there,” he said.

Sommers said it was important to acknowledge motivation to gut spending on Medicaid was to sustain tax breaks endorsed by President Donald Trump and “heavily skewed towards higher-income individuals.”

Adrianna McIntyre, assistant professor of health policy and politics at Harvard’s School of Public Health, said during the briefing there was genuine appetite among conservative Republicans in Congress to shrink spending on Medicaid. Implications of Medicaid adjustments for governors on both sides of the partisan aisle could be profound, she said.

“There are definite concerns among governors about sudden changes in Medicaid funding and what it could mean to hospitals and other providers for many low-income people to suddenly find themselves uninsured,” she said. “Generally speaking, if you’re saving money, it’s coming from fewer people having benefits.”

If federal aid was withdrawn, she said, state lawmakers would have the option of reducing the number of people enrolled in Medicaid or to fill the funding gap by raising taxes or slashing spending elsewhere.

Personal stakes

Lisa Collette, mother of a nonverbal child who qualified for Medicaid, took the opportunity to share her thoughts during the forum hosted by the Alliance for a Healthy Kansas.

Collette said it would be wrong to carve away an essential health programs because of the high human cost inherent in those budget decisions. Her daughter has a rare syndrome often linked to deafness and blindness, and she receives home nursing care through Medicaid.

“I strongly oppose these cuts because they affect the most vulnerable in our society — the elderly, low-income children and those with disabilities,” Collette said. “As a taxpayer, it’s frustrating to see that programs that benefit the most vulnerable are always No. 1 on the chopping block.”

Julie Avard, of Topeka, said her experience with dementia illustrated the value of Medicaid to families otherwise faced with personal economic ruin or uprooting of their work lives to care for someone no longer capable of doing that alone.

“Who is taking care of a loved one who has dementia or who is aging?” she said. “It gets harder and harder to take care of or to keep the person safe. Without Medicaid, we would be up the proverbial creek without a paddle.”

Rebecca Schultz, a former special education teacher from Leawood, said the electric wheelchair she relied on to be active and to participate in volunteer work or public advocacy cost $25,000. She’s not enrolled in Medicaid, but she said there was no avoiding the harmful outcomes if Congress reduced investment in Medicaid so people with disabilities have fewer support services.

“I’m fortunate. I’ve had a lot of supports in my life,” she said. “For the people that need it, let’s be human beings.”

The debate about Medicaid cuts was deeply disturbing, said Topekan Elvera Johnson, who lives on Social Security income with her husband.

“This is not the time to recklessly cut Medicaid,” said Johnson, who suggested politicians look the example of others. “All people should have access to good medical care. It should be a given. Jesus helped people who needed help. He was a healer.”