Along St. John Street in Garden City, a half-dozen blocks from downtown, Cynthia Marsh pushes a stroller that cradles her daughter, Aileas, who might never walk a day in her life.

It’s an unexceptional Wednesday for Cynthia, her 5-year-old son Jacob and 21-month-old Aileas (pronounced A-lease).

Aileas suffers from cytomegalovirus, or CMV, which has stunted and calcified her brain. Her bloodshot eyes, strained from a procedure last month, can trace motion and light, but little else. She cannot stand and might never do so. She hasn’t yet been diagnosed with cerebral palsy, although Cynthia considers it a near inevitability.

The many other CMV-related afflictions of Aileas’ young life — encephalitis (inflammation of the brain), hydrocephalus (water in the brain), a weak immune system, a muted sense of touch — go on and on.

CMV, which infects 50 to 80 percent of the global population, according to The New York Department of Health, develops in unpredictable ways. It rarely causes illness. But for Aileas, it has caused illness and pain.

Cynthia toils to push Aileas’ stroller with Jacob leading the way. The Marsh family walks toward St. Mary Catholic School, established in 1942, which Cynthia and her father, Sam McMillan, both attended, and where Jacob will begin kindergarten in the fall. However, their destination on this day is Genesis Family Health, a multifaceted clinic where Aileas will get fitted for a new pink and black wheelchair funded by the state’s Medicaid program.

When they arrive, they hug Chris Marsh, Genesis information technologist and father of the family. Chris speaks with the frankness of a man who doesn’t have time for circling the point. He loves his daughter. He shed tears over what could have been.

“As much as a dad jokes about it, you know, ‘I’m gonna shoot the first boyfriend,’ you want that for them,” he said. “And you want to walk them down the aisle. And you want the ability for them to have grandkids. And to have that taken away as soon as they’re born, that’s a hard thing to come to grips with.”

In front of the red-bricked St. Mary school building stands a wooden cross and a sign with a Franciscan passage:

For it is in giving

that we receive

Cuts to Medicaid

On this day, the offices of state legislators are empty. Senate Bill 249, the new budget agreement signed by Gov. Sam Brownback in mid-May, looms weeks ahead of its July 1 implementation, when the state will reduce Medicaid spending by more than $56 million.

The revised budget will alter the same health insurance that covers Aileas and Jacob Marsh, along with more than 400,000 other Kansans who depend on KanCare, the state’s privatized Medicaid program. Physicians from hospitals and clinics throughout the state and community groups that provide health-related services have started to brace for nearing compromises.

Brownback held a news conference on Dec. 7, 2012, that proclaimed the beginning of KanCare. He lauded the “extraordinary” accomplishment of Lt. Gov. Jeff Colyer, M.D., and his colleagues who brought the program to fruition. He also spoke about his expectations of KanCare moving forward.

“One of the things I’m really excited about is the expanded services that we’re going to be able to provide — heart transplant, bariatric, and then preventative dental, really is a big deal,” Brownback said. “So, instead of cutting services, cutting providers, we’re adding. This is the way forward.”

The budget bill that Brownback signed last month will reduce Medicaid spending for the Kansas Department of Health and Environment by more than $39 million and the state’s Department of Aging and Disability Services by more than $17 million. The bill will result in a loss of more than $72 million in federal funds. Approximately $87 million of the total $128 million will come through a 4 percent reduction of the health care provider reimbursement rate.

This section of the bill exempts 95 rural and critical access hospitals across the state. But the Kansas Hospital Association (KHA) notes that all hospitals will incur a reduction of approximately 3 percent in the Health Care Access Improvement Program (HCAIP), a collective fund that the state matches and spreads to providers that accept Medicaid patients. The state must gain approval from the federal Centers for Medicare and Medicaid Services, but Brownback officials have indicated that the spending reductions will occur regardless of this variable.

Cindy Samuelson, vice president of public relations and political fundraising for the KHA, said Brownback once claimed Medicaid reform would help the state avoid reductions in Medicaid expenditures.

“This proposal to now cut Medicaid rates broke a promise to what was shared with all providers in the state of Kansas and the people of Kansas when KanCare began,” Samuelson said.

Eileen Hawley, Brownback’s spokeswoman, said that HCAIP was designed to be financed by a hospital provider tax, not state funds.

“We offered the Kansas Hospital Association the opportunity to work with us to raise the hospital provider tax, but they declined to engage in those discussions,” Hawley said.

The reduction in state Medicaid spending will sap the already lean resources of providers throughout the state.

Noelle Anglesey, quality assurance coordinator at Mosaic in Garden City, a national agency that provides wide-ranging support for those with intellectual disabilities, said the vast majority of funding for her group stems from Medicaid.

“I don’t have a good answer for how we’re going to navigate those waters,” Anglesey said.

Thousands of intellectually disabled people who qualify for services have been stalled on an underfunded waiting list, she said. What was once a three-year wait has become six or seven. Would-be patients have been left without service.

“They’re just sitting on Mom and Dad’s couch until seven years passes,” she said.

According to iVantage Health Analytics, Kansas has 84 critical access hospitals, the most of any state in the U.S. These small, rural hospitals offer no more than 25 inpatient beds and provide acute inpatient care for an average of four days.

With limited resources, facilities struggle to hire quality physicians and maintain costly health care services. As a result, neighbor

ing providers often share services to fill certain voids. For instance, Mercy Hospital in Fort Scott and Via Christi in Pittsburg formed a services partnership in April.

The Hamilton County Hospital in Syracuse, about 50 miles west of Garden City, was slated to close last month, said Dr. Richard Carter, CEO of management firm Carter Professional Care. To weather about $155,000 in losses per month, the hospital recently shut down its nursing home and obstetrics services.

Carter Professional Care, a management firm, has spent the past month balancing the books, devising long-term growth plans and negotiating partnerships with providers in the region. While layoffs might be necessary, Carter was optimistic the hospital will remain open, particularly after adding a new MRI machine and CT scanner that were purchased with county support.

The existential uncertainty found at the Syracuse Hospital can be found at health care facilities in small towns throughout the state. iVantage noted in a recent study that approximately one in three rural hospitals in Kansas are at risk of closure. If the vulnerable, rural hospitals in Kansas were to close, the state would lose 2,952 health care jobs.

State Rep. John Doll, R-Garden City, who voted no on SB 249, was critical of the state forfeiting approximately $1 billion in federal funds by not expanding KanCare. Doll also said the new budget could force doctors to refrain from treating Medicaid patients.

“Every hospital I talk to, from St. Catherine here in Garden City to smaller hospitals around Lakin, this was nothing but bad news,” he said.

State Sen. Ralph Ostmeyer, R-Grinnell, voted in favor of the bill. He shared a different view from that of Doll, who said all Americans deserve the right to health care.

“I grew up in a society where you pay for what you use,” Ostmeyer said.

Health care providers respond

The Western Kansas Community Foundation in Garden City collaborates with donors and nonprofits organizations in the region to supplement the imminent Medicaid spending reductions. Executive director Conny Bogaard said her group tailors its outreach to current issues. However, for some providers, community support may not be enough.

“This could be the final blow for a lot of organizations that already are struggling,” Bogaard said.

Benjamin Anderson, the CEO of Kearney County Hospital in Lakin, understands the difficulties of a slim budget in a rural setting. He has responded by focusing on making his hospital more efficient.

For a six-week period last fall, Anderson and his staff surveyed every emergency room visitor to track biographical information such as age, occupation, education and reason for the patient visit.

What hospital officials learned justified the work: While the ER was designed to respond to the worst possible ailments, the majority of visitors sought treatment for serious but less severe issues, such as sprains and depression. The survey also noted that about 76 percent of the patients were insured, 80 percent spoke English at home and 50 percent were from Kearny County.

An ER patient in his 70s once said to Anderson: “I wouldn’t be sitting in here if I had somebody at home who loved me.” The man had a respiratory issue that could have been treated before an ER visit was necessary, Anderson said. However, the patient lived alone and wanted help any way he could find it, even if that meant visiting the ER, which is designed for critical-care patients.

Anderson said the patient’s case exemplifies the value of health care systems that work proactively and might prevent unnecessary hospital visits. These systems would help Kearny County Hospital optimize its services while maintaining quality care for the 15,000 patients it covers from more than 20 counties in Kansas, Colorado and Oklahoma.

Despite Anderson’s hands-on approach to operations, he acknowledged the challenges of a gradually tightening budget. He refuted the idea of asking county taxpayers to shoulder more responsibility. But he admitted a troubling reality that soon will become the only option: Something must go. That said, five weeks ahead of the Legislature’s new budget deal implementation date, Anderson couldn’t name a service to be cut.

“We don’t know how we’re going to respond,” he said.

Kearny County hospital officials are trying to remedy the facility’s most glaring weaknesses to promote and sustain growth. Anderson said that while his staff has made great strides in optimizing ER usage, they’re still working on trimming the last 5 percent of resource waste in the department, the most challenging portion to modify.

Keeping the doors open

Anderson and other rural Kansas hospitals are trying to avoid the fate of Mercy Hospital in Independence. Last October, Mercy was forced to shutter.

Rep. Jim Kelly (R-Independence) said a study conducted before the closure found that only 4 percent of Mercy ER visits could be considered actual emergencies. Kelly, who voted in favor of SB 294, also said that he doesn’t believe Medicaid expansion would have saved the hospital.

Kelly said that it’s a bit too early to determine the full scale of post-closure effects in Independence. However, he added that some people have left town and there are likely more houses for sale than in the recent past.

A few public clinics that accept Medicaid patients recently have opened in Independence to compensate for the larger facility’s loss. The Coffeyville Regional Medical Center, located about 20 miles from Independence, opened a downtown clinic last month that employs one full-time physician and a few part-timers. Wilson County Medical Center of Neodesha, which is about 20 miles north, has begun remodeling a building on the north side of Independence for a new clinic. The Labette County Medical Clinic in Parsons, a town about 30 miles east, runs a small urgent care clinic. None of these facilities have an ER.

“It’s very fractured,” Kelly said.

Working through obstacles

The division of health care services throughout the state creates logistical, financial and emotional obstacles for many Kansans.

The Marshes often travel to Colorado or Kansas City to get treatment for Aileas. Cynthia Marsh said intensive care from an ophthalmologist and a neurologist, among others, cannot be found nearby.

Chris Marsh said scheduling conflicts cut into his time as a father. While he works on earning his information management systems degree and diagnosing tech issues — a kind of therapy in his uncertain world — the distance from his family has torn into his psyche. Jacob once said to his father, “I miss my dad.”

“And, uh, that about killed me,” Chris said.

It has been difficult for Cynthia and Chris to observe the rapid progress of Jacob, who has an advanced vocabulary and loves playing outside, compared to Aileas and her copious disabilities, some of which might have been prevented with an earlier diagnosis. However, they appreciate her for what she can do instead of what she cannot.

“You go through this cycle of grief every time they’re supposed to walk, or they’re supposed to roll over,” Cynthia said. “And you try not to focus on that because she’s such an amazing little person.”

Aileas’ uncertain future causes fear and hope. Chris spoke of a doctor in Kansas City who suffers from CMV, yet has established a successful medical career. They consider experimental therapies, new kinds of treatment, anything that might help Aileas one day stand on her own.

Medicaid-dependent families such as the Marshes live in towns and counties throughout Kansas. But even if Medicaid keeps shrinking and the Marshes never find a cure for Aileas’ many ailments, Cynthia and Chris will spend their days knowing that they tried to do their best for their daughter.

“It’s a long shot,” Chris said, “but that’s OK. Long shots are good sometimes. Everyone likes that story.”

Max Rothman is a University of Kansas senior journalism student living in New Orleans.