February 1, 2016
“The law says I cannot be forced into a nursing home against my will... 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... Reasonable people ought to be able to find a reasonable solution. We can and must do better.” – Finn Bullers from an email message to NCD sent December 19, 2015
The National Council on Disability honors the life and legacy of disability rights advocate Finn Bullers, 52, who died Sunday January 31 after experiencing complications with pneumonia, according to his ex-wife, Anne Christiansen-Bullers. He is survived by two children, Alora and Christian Bullers.
Bullers was a reporter for the Kansas City Star nearly 15 years before leaving the news business in 2009 due to medical conditions. It was then Bullers became a full-time advocate for people with disabilities.
Finn provided public comment before NCD during an open forum on Medicaid Managed Care in 2013 when threatened changes to KanCare—the state-run managed care services in Bullers’ home state of Kansas—would have dangerously limited the amount of in-home care he and other Kansans were allowed.
Bullers fought, and in time successfully reversed the proposed changes to his care which would have reduced his care plan from around the clock care to 40 hours per week—approximately 76%--which would have endangered his life.
“Finn attributed the decision by United Healthcare and KanCare to continue his care at the previously established level to the NCD letter which cited his case and suggested a possible Department of Justice Office of Civil Rights investigation into drastic service losses,” said NCD member Gary Blumenthal. “But we know that the reason the decision was reversed was because of Finn’s peerless self-advocacy and his determined efforts to appeal, organize and publicize not only his case, but also the cost of the proposed changes to other Kansans with disabilities. We learned a tremendous amount from Finn. His insights and experiences continue to inform our work today. We send our deepest condolences to his friends, colleagues and family.”
In our work on Medicaid Managed Care since 2012, NCD has focused our attention on how changes and proposed changes in delivery systems from planning through implementation are affecting people with disabilities. We published a number of publications on the issue of Medicaid Managed Care in 2012 and 2013. In fiscal years 2014 and 2015, NCD hosted a series of stakeholder forums to promote greater dialogue and contact between key CMS regional office staff and the disability community regarding managed care waiver applications and dual eligible demonstration proposals. It was during one of these forums that we first heard from Finn.
A total of ten community forums were conducted across the nation in which state Medicaid authorities, the U.S. Department of Health and Human Services (HHS) Centers for Medicare and Medicaid Services (CMS), and over 650 people participated.