It's early evening at the Bullers' house in Prairie Village, and the family gathers around the table. The Bullers kids, Alora and Christian, talk school while their mother, Anne, serves dinner.
At one end of the kitchen table, their father, Finn, joins the conversation from his motorized wheelchair with a wheezing ventilator attached to the back. A caregiver quietly slips in to give Finn an insulin shot for his diabetes. For the past for years, there's always been a caregiver at the Bullers' house to provide medical help 24/7. But, under the new KanCare system, that is about to change.
When the KanCare system was proposed, Kansas Gov. Sam Brownback promised that privatizing Medicaid would save the state money and provide more health care. But almost a year into KanCare, around 8 percent of the 12,000 Kansans who receive community or in-home care through Medicaid are being considered for service reductions.
Finn Bullers was born with a rare degenerative disease called Charcot Marie Tooth. It’s required a lot of complicated medical care, including the insertion of a breathing tube that changed the sound of his voice.
“I tended to think I had a fairly commanding and sort of booming voice by which I could put on the professional voice and, you know, ‘This is Finn Bullers with the Kansas City Star.’”
About four years ago, when Bullers was in his mid-40’s, his health forced him to leave the Star. Caregivers now help him help with dressing, making food and bathing. They help clear phlegm from his airway a few times a day. And they move him at night when he sleeps to prevent bedsores.
“These are non-negotiables, ” says Rocky Nichols, executive director of the Disability Rights Center of Kansas.
“These are the things that people need to get out of bed in the morning, to accomplish the activities of daily living that those of us without disabilities take for granted every single day. And to see those services dramatically scaled back is very troubling.”
Earlier this month, with the switch to KanCare, Finn Bullers found out his attendant care services are being cut 75 percent. These are the results of reevaluations conducted by the three companies that now manage the state’s Medicaid program.
“Part of their assessment or their re-evaluation is to determine if the appropriate amount of service is occurring, if additional needs are identified, or if a reduction in service is warranted,” says Gina Meier Hummel, a commissioner of the Kansas Department of Aging and Disability Services.
Finn Buller’s Medicaid is now managed by United Healthcare. This summer, one of the company’s care coordinators paid him a visit and asked about his ability to function. Based on this information, United decided to cut 10 hours a day of in-home care f0r Bullers. And at night, his care attendant will be replaced by someone who will sleep in the house to be available every few hours or for emergencies.
“It’s essentially like the state is saying, ‘You’ve got four apples that you need to have to survive, and we’re willing to give you one apple,'” he says.
Whenever a managed care company wants to make a service reduction, it needs approval from the Kansas Department of Aging and Disability Services. Neither United Healthcare nor the Kansas Department said they could talk about the specifics of Finn Buller’s case. But KDADS’s Angela De Rocha said the Department is comfortable with the requested service reductions.
“Generally, reductions occur because there had been a level of service that had been approved that is no longer necessary,” Commissioner Gina Meier Hummel explains.
A lot of Bullers’ care doesn’t require a professional. It could be done by family members. But his wife works full-time and serves as the primary breadwinner. The care reductions would require Anne to be Finn’s nurse every minute she’s not working or sleeping. They say that’s just not practical.
Dr. Laurie Fisher, Buller’s doctor for more than ten years, says she was not consulted when United reevaluated Bullers, and she disagrees with the company’s decision.
“I understand that there’s concern about people misusing the health system or that certain people get more care than they probably truly need," says Fisher. "But I really feel like Finn is a very appropriate candidate for 24-hour care and needs it to continue to be able to live.”
Back at the Bullers house, the dinner conversation has switched to Halloween plans. But Finn Bullers has the next day, November 1st, on his mind. That's when the service reductions were scheduled to begin.
Finn Bullers has bought himself some time, however. He’s appealing the reduction, and according to the Kansas Department of Aging and Disability Services, no changes will be made while there’s a pending appeal.
* This story has been corrected. An earlier version had stated that 8 percent of all of Kansas's Medicaid recipients were receiving cuts. The Kansas Department of Aging and Disability Services says 8 percent of those receiving Home and Community-Based Services are being considered for service reductions.