Barbara Shelly

Barbara Shelly: Finn Bullers’ epic fight against KanCare should live on

Finn Bullers
Finn Bullers

Finn Bullers was first and always a journalist. When daunting physical obstacles made it too hard for him to handle his reporting job at The Kansas City Star, he used his own life and struggles to tell a story.

That story will be summarized on Friday at a memorial service for Bullers at 2 p.m. at Village Presbyterian Church in Prairie Village. He died on Jan. 31 at age 52 of heart failure brought on by pneumonia.

Friends and admirers will remember a man who was funny and feisty and used his every breath to speak out on behalf of disabled persons. And breathing wasn’t easy; since 2010 Bullers had used a ventilator.

But as a journalist, Bullers wanted his story to reap results. And so it is important not to bury the chapters that detail his heartbreaking attempts to maintain his dignity and quality of life in a state that often treats its disabled citizens as an inconvenient expense.

“There is no place in Kansas that is ready to deal with someone in Finn’s condition,” said his ex-wife, Anne Christiansen-Bullers. “That is what I battled for five years. The state of Kansas did nothing to help him in the long term.”

Bullers, who had a severe form of muscular dystrophy that affected his breathing and coordination, waged an epic and public fight to keep his care from being cut back after Kansas contracted with for-profit companies in 2013 to handle its Medicaid program, KanCare.

Full-time care was stressful enough. Attendants who care for Kansas Medicaid patients with disabilities are paid about the same as fast-food workers. While many are dedicated and compassionate some are less so. The family coped with no-shows and thefts.

Finances were also a problem. To secure a Medicaid waiver, Kansas requires families to pay a “client obligation” that is the difference between their monthly income and the Medicaid eligibility ceiling. In Bullers’ case, that meant paying in excess of $2,000 a month to the company managing his care and scraping by on about $750 a month for all other expenses.

Early in 2014 Anne Bullers filed for divorce. She was worn out and wanted to separate her finances from his for the sake of their two young children.

“I naively thought the state would step up and take care of him because they didn’t have a choice,” Anne Bullers said.

But when Finn Bullers left his home in March of last year he found no good options.

His managed care provider, UnitedHealthcare, proposed that he stay in an Overland Park nursing home that cares for patients with ventilators. Bullers wouldn’t hear of it. He feared he would be bedridden, hooked to a non-moveable vent.

He stayed briefly in a hotel but his attendant disappeared. He resided in an assisted living center for six months but was discharged when he accused the home of violations. He tried to arrange to live in an apartment with caregivers, but UnitedHealthcare rejected that plan, calling it too risky.

In a statement, UnitedHealthcare said “we work hard to find and secure the appropriate services and supports for our members to help them live independently and in the safest setting possible.”

The final two weeks of Bullers’ life included stays in two different nursing facilities and two hospitals. He sent out a series of missives, signaling increasing desperation.

“I now face no reasonable quality-of-life option,” Bullers wrote in a Facebook post on Dec. 16. “Reasonable people ought to be able to find a reasonable solution for people with disabilities in Kansas.”

Yes, they should. And people with disabilities shouldn’t have to leave their families, burn through their finances or fight themselves to exhaustion to be able to live safely and fully.

That is the unfinished part of Bullers’ story. He would want it to be put to good use.