KC-area families say looming cuts to Medicaid would hurt kids' lives: 'Instability'

KANSAS CITY, Mo. — Ryan Jolly’s Lenexa home doubles as a hub of care for her four children. She’s adopted three and one remains in foster care. All have brain injuries.

To call caring for her children – 14, 13, 13, and 7 – a logistical feat almost doesn’t capture the complexity of what happens daily at their residence. On a typical day, four health care professionals are in and out of the house. Care for just one child runs about $1.5 million a year.

Medicaid makes it financially possible for Jolly’s children to all live at home together. But she and other Kansas City-area families on Medicaid fear cuts are coming from Washington.

“I don’t expect them to know the ins and outs,” Jolly said of politicians. “I expect them to listen to the people who know what they’re doing, who live this life when we stand up and say, ‘people will die.’”

The U.S. House in February voted 217-215 to advance a budget resolution that directs the committee with jurisdiction over Medicaid to reduce the federal deficit by nearly $900 billion over a decade. Budget and health policy experts agree achieving the reduction is impossible without cutting Medicaid.

Every Kansas and Missouri Republican representative voted for the resolution. The two Democratic representatives in the Kansas City area, Sharice Davids and Emanuel Cleaver, voted no. Republicans have largely championed the resolution as a first step in fighting what they say is fraud, waste and abuse in government, while Democrats warn it sets the stage for draconian cuts.

While the budget resolution helps establish a framework for the debate in Congress over spending, cuts to Medicaid aren’t guaranteed. Both the House and Senate must pass any spending legislation, which would then go to President Donald Trump for his signature.

Medicaid, a federal program administered by the states, offers health coverage to low-income individuals, pregnant women and individuals with disabilities (Medicare is a separate program that covers older Americans). Hundreds of thousands of people in the larger Kansas City area are on Medicaid – known as KanCare in Kansas and MO HealthNet in Missouri.

“If my son lost his Medicaid, he would not be able to continue residing in our home because he requires one-to-one, 24-hour care. The state pays for 16 hours of that a day, I provide the other eight,” said Jolly, a single mom and licensed nurse practitioner certified in psychiatry and mental health.

“If Medicaid was cut to the point that those hours were reduced by even an hour a day, we would no longer be able to keep him in our home, which would mean he would have to go to the hospital.”

Offering freedom

Some 165,000 residents in Missouri’s 5th Congressional District, which includes much of Kansas City and Jackson County, are enrolled – about 22% of residents, according to the health policy research organization KFF.

In the Kansas 3rd District, which includes southern Wyandotte County, Johnson County and areas southwest of the metro, 53,000 people are enrolled, or 7% of the population.

“It actually comes closer to home than a lot of people realize, because many people don’t know that even though somebody they know doesn’t appear to be on Medicaid, they may have a family member or someone else who is,” said Keith Jantz, a retired physician who practiced internal medicine in Kansas City for 35 years.

Kacy Seitz, a Leawood-based financial advisor focused on special needs planning, described an atmosphere of fear among her clients, who span 35 states. Seitz herself has a teen, Hudsyn, who was born with a brain injury. She fears for her daughter’s quality of life if Medicaid is cut.

While the budget resolution outlines reduced spending over a decade, Seitz said individuals and families on Medicaid would feel the effects almost immediately, even if cuts are delayed for several years. That’s because service providers would quickly begin planning for future cuts and limiting services.

If Medicaid funding to provide individuals with services in their own homes and communities is cut, more people will be placed in institutional settings, Seitz predicted. The institutional care will cost even more money while reducing individuals’ quality of life.

At a foundational level, Medicaid’s payment of those services provides these individuals with freedom, she said. Cutting Medicaid’s support of those services is tantamount to curbing their freedom.

Seitz expects the special needs community will mobilize in the coming weeks and months to oppose reductions. As lawmakers develop budget legislation, the size and breadth of potential cuts to Medicaid will come into view.

“You haven’t seen anything until you’ve seen a special needs parent who has had choice - and freedom - taken away from their child,” Seitz said.

Republicans who support the budget resolution have framed the effort as targeting waste, fraud and abuse among three major drivers of U.S. spending – Social Security, Medicare and Medicaid.

“We’ve got to find the savings there. We will do that,” Rep. Mark Alford, a Missouri Republican, said recently on CNN. “The budget director was speaking to our whip team last night in a meeting, and he pointed out that there are savings to be made in the Medicaid program.”

Rep. Derek Schmidt, a Republican who represents northern Wyandotte County and large portions of eastern Kansas, in a statement on his vote in favor of the budget resolution made no mention of Medicaid.

The first-term congressman said Kansas voters had elected Trump and a GOP-controlled Congress “to get America back on the right track after decades of unaffordable spending and four years of failed Biden policies.”

He called the resolution an important “first step” but added there was “much more work to do, especially on reducing the budget deficit, but I’m encouraged we have begun.”

But Patrick Sallee, president and CEO of Vibrant Health in Kansas City, Kansas, said the proposed cuts would harm people in the community. About 40% of the community health center’s patients are on Medicaid, while 45% don’t have health insurance.

If Medicaid recipients in Wyandotte County lose coverage, the loss will affect more than just those patients.

“Medicaid revenue and Medicare revenue drive our ability to see patients with that coverage, but also sustain our operation to see patients that are uninsured,” Sallee said.

Davids, who appeared alongside Sallee at an event last month to oppose Medicaid cuts, said she supports government efficiency and eliminating waste, fraud and abuse. But, she said, “we’re not going to get there by cutting Medicaid.”

“The actual approach we’re seeing right now is reckless and irresponsible,” Davids said.

Medicaid families ‘uncertain’

As Congress weighs cuts to Medicaid, Kate Jones-Roggenbaum’s family has paused making big purchases and other decisions over the uncertainty.

Jones-Roggenbaum has one biological child and two who were adopted. The adopted children came out of abusive environments. Medicaid acts as a secondary health insurance for them – a significant help to the family given the high-deductible on their primary insurance.

The family travels about once a month to Children’s Mercy in Kansas City, though they live in the Wichita area, because of the specialized care their children need. In total, her children see 11 specialists within the Children’s Mercy system, she said.

“Medicaid is that kind of safety net for us, for the girls,” she said.

Jolly, the Lenexa mom, occasionally gives talks about complex care. As she sat down last week to create a presentation for an upcoming event, she realized what she had planned to say no longer worked.

With all the uncertainty, she said she can’t make decisions right now in her private practice about whether to move into a bigger space or bring on more people.

But most concerning, she doesn’t know what’s ahead for her children.

“I was listening to a story on the radio on the way here about the stock market and how the stock markets don’t like instability. Neither do we,” Jolly said. “I have no idea what care is going to be available for my child next week, next month, next year.”