Prairie Village resident, disabled rights activist Finn Bullers dies at 52

Finn Bullers outside Prairie Village city hall in 2014.
Finn Bullers outside Prairie Village city hall in 2014.

Longtime Prairie Village resident and former Kansas City Star reporter Finn Bullers, who in recent years reinvented himself as a passionate advocate for rights for the disabled, has died. Bullers was 52.

Bullers suffered from a rare form of muscular dystrophy that forced him to leave full time work in 2009 as his mobility became increasingly limited. Though confined to a wheelchair in his final years, Bullers worked energetically on a number of causes close to him. A dedicated supporter of the Affordable Care Act, Bullers helped managed the state field office for Barack Obama’s 2012 presidential campaign. He widely publicized his family’s struggle to get an in-home caretaker, drawing a spotlight on troubles with the KanCare system. And he lobbied the cities of Merriam and Prairie Village to take a stand in shifting toward an updated disabled access sign that he said better reflected the active potential of himself and other people with disabilities.

Bullers’ struggles with UnitedHealthcare, his provider under the KanCare system, continued into his final months. In December, he sent an email to reporters saying that he had been confined to an intensive care unit at Shawnee Mission Health while he fought plans that would have left him bedridden at a facility in Overland Park or sent to a living facility in Waverly, Iowa, that accepted people with ventilators.

“As a disability civil rights advocate, I understand patience plays a role in working for change. I also understand that at some point, one must take a stand to fight for the legal right to lead a quality life,” he wrote on Dec. 16. “So I’m taking a stand, rejecting placement in a nursing home, and by doing so, hope my situation will shed light on a failed KanCare managed care plan that creates factory-line healthcare indifferent to the quality-of-life needs of the individual. Reasonable people ought to be able to find a reasonable solution. We can do better.”

Bullers died Sunday afternoon at Providence Medical Center, according to his ex-wife Anne Christiansen-Bullers, of heart failure that came as a result of pneumonia.