Finn Bullers

In honor of all of Finn Bullers advocacy efforts and the genuine zeal with which he pursues them, United Spinal Association has named him Advocate of the Year, 2014. Finn will be presented with his award at United Spinal’s 3rd annual Roll on Capitol Hill, legislative and policy conference in Washington, D.C., June 22-25, 2014.

“Finn deserves to be recognized with United Spinal’s Advocate of the Year 2014 award for all his years of effective advocacy, not only in his own state of Kansas, but across the country,” says Alex Bennewith, United Spinal’s vice president of government relations.

On Christmas Eve 2013, Finn Bullers’ case manager knocked on his door and informed him that KanCare, the new managed care program for the state of Kansas, had reversed its decision to limit him to 40 hours of care a week and had reinstated his around-the-clock care. For Bullers, who has Charcot-Marie-Tooth, a rare form of muscular dystrophy, the news was a lifeline — a chance to keep living his life and avoid a nursing home. While it might be tempting to call KanCare’s decision a holiday gift or Christmas miracle, be clear — this was no miracle.

KanCare’s radical reversal didn’t happen because of one individual’s goodwill or abundance of holiday cheer, it happened because Bullers, 49, led a relentless, intelligent campaign to expose the hypocrisy behind KanCare’s decision and the decisions made by state policy makers. He has brought the same tenacious approach to a number of other key advocacy issues, including the battle to preserve access to Complex Rehab Technology, that is, customized wheelchairs, the fight to ratify the Convention on the Rights of People with Disabilities and opponents of expanding Medicaid in Kansas.


“It’s such an honor to be recognized by your peers and have the very people that are doing what you’re doing recognizing that in some small way you’re making a difference,” says Bullers.

Bullers’ path to advocacy started during his undergraduate years studying journalism at Iowa State. Working on the student newspaper, he got a first-hand glimpse of the power of information and developed a love for speaking truth to power. Upon graduating he began a three-decade career as a newspaperman, reporting and editing for a number of prestigious Midwest newspapers.

His mobility, his voice and his dexterity deteriorated because of Charcot-Marie-Tooth, but he kept working until it simply got too difficult in 2009. Little could he have known that his professional experience as a reporter had perfectly prepared him for a new career as an advocate.

“It’s really only a two or three degree shift into advocacy,” he says. “Advocacy allows you to use the adjectives more freely, but you have to do it as responsibly and fairly as you would in the environment of traditional journalism. I get the same thrill [from both] — there is nothing like knowing something that few other people do or few other people understand.”

A creative advocate can also choose from a wider array of tactics, something Bullers showed when he challenged Kansas Governor Sam Brownback and Secretary of Aging and Disabilities Shawn Sullivan to work a shift taking care of him to see why his full-time care was so imperative.

“That was just another tool in the advocacy toolbox,’ he says. “It had that sense of grandeur and the little man taking it to the system. In my heart I knew they were just going to blow me off and they would never even consider doing it.”

When they did say no, Bullers used it as an opportunity to “put a dent in the hypocrisy of Governor Brownback’s message of caring,” saying he had passed on a “real opportunity to see the work that was being done by caregivers.”

Bullers made sure everyone in Kansas knew what he was dealing with and its implications for the rest of the state. He did interviews with local reporters, blogged extensively and testified at every opportunity.

“They put the target on the wrong guy,” says Bullers. “With the help of other advocates and organizations [including] United Spinal, I was able to dodge and weave enough and make [KanCare and the state] realize the error of their ways.”

“Finn makes it easier for his adversaries to do what he wants them to do then what they want — that makes him a great advocate,” says James Weisman, United Spinal’s general counsel.
Bullers is excited about the next chapter in his career as an advocate.

“Now that I have got my bases covered, I can be strong to fight another day for the tens of thousands of Kansans that don’t have a voice or the mental acuity to figure out all the BS that is out there,” he says. “I’m building bridges with mayors, councils on disability — I’m getting out within the greater Kansas City area and trying to convince everyone that I’ve got your back and you’ve got mine.”