Past the doorway to Finn Bullers' Prairie Village home are framed photos from his wedding day in 1994. There's Bullers, wearing his suit, standing upright and proud, smiling with a head full of strawberry-blond hair.
On this late-October day, Bullers is in his kitchen. The 49-year-old man's smile remains, but almost everything else has changed since he said, "I do." His body has been wracked by Charcot-Marie-Tooth, a form of muscular dystrophy. (He also suffers from type 1 diabetes.) His hair is gone, replaced by a flat cap. He's in a wheelchair, no longer able to stand. He can move his arms well enough to operate a phone and his iPad, but his hands have morphed through muscle loss to resemble claws, and he cannot make precise movements.
Bullers' voice, once clear, now sounds like gasps for air against the steady in-and-out of a ventilator helping him breathe.
Caregivers and a nurse provide Bullers with 24/7 support. They help him eat. They administer his insulin. They help him brush his teeth, bathe and use the toilet. They also operate a device that sucks phlegm from his lungs and they turn his body every few hours to prevent sores — like the one that nearly killed him a few years ago.
Since learning of his condition in college, Bullers has slowly lost control of his body. But his mind remains clear. These days, the former Kansas City Star reporter spends his days hounding a bureaucracy in Topeka in an attempt to keep in-home nurses all day, every day. This past January, the state transferred the care of 380,000 Medicaid recipients to three private companies as part of a program called KanCare.
Gov. Sam Brownback has said the wholesale privatization of Medicaid under KanCare was meant to save $1 billion over five years. He also promised that the move wouldn't sacrifice Kansans' level of care, and the number of people on Medicaid's waiting list would be reduced.
But the only way for the three managed-care organizations to realize cost savings on clients with permanent physical disabilities, like Bullers, is by cutting Medicaid services. Bullers' 24/7 care was slated to be reduced by November 1 to 40 hours per week. Caregivers, who now work in three eight-hour shifts, could visit him only on weekdays for eight hours a day, or all seven days of the week for five hours each.
"To me, that's an Orwellian clusterfuck," Bullers tells The Pitch. "How can you take out that chunk of money on the backs of the most vulnerable and say with a straight face that you're going to improve services? It defies common sense."
State officials who look after KanCare say they're comfortable with the cuts. Privacy laws prevent officials from speaking specifically about Bullers' case.
However, on November 15, Bullers sent the state a signed form that allows officials to discuss his health information with the media. But Angela de Rocha, a spokeswoman for the Kansas Department for Aging and Disability Services, did not return a call seeking comment about Bullers' health.
In an earlier interview, de Rocha offered an analogy for Medicaid recipients upset by KanCare's reduction in services. She says it's as if she had been giving someone a new car every year and then suddenly stopped.
"Your natural response to that is going to be, 'Why is she being so mean to me?'" de Rocha tells The Pitch. "That's just human nature. It's very difficult to take away something once you get it. People get used to it. They think that's what you need."
To Bullers, access to caregivers isn't like getting a brand-new car, but rather is a life-and-death matter. If a tube feeding air from a respirator to a hole in his throat fell out while he was alone, he would have about three minutes to live. If that ever happened, there wouldn't be enough time for paramedics to reach him.