Finn Bullers guides his $30,000 electric wheelchair by using the bright beam of a light lodged in its frame.
The 51-year-old has been battling Charcot-Marie-Tooth disease, a rare form of muscular dystrophy, since he was growing up in Iowa.
As a young boy, Bullers would stuff his clothes with pillows to defy his already atrophying body and spend hours on a frozen farm pond trying to skate like the other kids.
Today, the disease has robbed him of almost all muscle strength. He can’t get from his bed to his wheelchair, dress or bathe himself. His hands and feet are disfigured as his muscles atrophy from the extremities inward.
RELATED: Contacting Kansans Waiting For Disability Services Remains A Challenge
When three private insurance companies took over Kansas Medicaid as part of a program called KanCare, representatives came in to observe Bullers’ day. They calculated how long his daily activities took.
“They’d time me going to the bathroom,” Bullers says. “'We’re gonna average two minutes for time to urinate’ they said." The calculations determined how much he would receive in home health care. Buller says the company reduced his services by 75 percent.
The former newspaper reporter went into advocacy overdrive. From his wheelchair at a command post in his suburban kitchen, with his iPad and telephone, he lobbied Topeka and Washington. He sent emails all night long to lawmakers and disability advocates. His strategy worked.
“The eve of Christmas eve, one of my case managers came to me and said, ‘I don’t know what you did ... but my agency is completely reversing all the cuts we were set to put in place ... Consider it a Christmas gift.’”
Approximately 25,000 elderly or disabled Medicaid patients are in the so-called Home Community Based Services Waiver program (HCBS) that provides support to Bullers so he can stay in his home. That’s about a fourth of all Medicaid patients in the state. But this group eats up about two-thirds of the program’s resources.
Kansas Department of Aging and Disability Services Secretary Kari Bruffett says that in 2013, the year KanCare was implemented, twice as many people in the HCBS program received increases as had decreases in their plans of care.
“(The plans are) very individualized and person-specific,” Bruffett says.
“Some saw both — increases in some services and decreases in others. There’s not going to be 100 percent agreement,” she says.
Bruffett says appeals such as those filed by Bullers are built into the system. Disability advocates remain unconvinced by the state’s argument.
Different challenges in Missouri
Joseph Spencer, now 72, spent seven years in a nursing home after a spinal cord injury left him paralyzed from the neck down. He turns on the TV by pushing his cheek into a big red button next to his pillow.
His caregiver, Barbara Cooley, was a nurse at the facility where Spencer was living. When she watched his aides leave his breakfast on his nightstand, she decided to bring him to her home in south Kansas City, Mo., to care for him there.
Missouri Medicaid, known as HealthNet, will pay for in-home care as long as it doesn’t exceed the cost of a nursing home. Officials admit it’s only possible for the long-term disabled to remain at home if they have support from family or friends. For Spencer, it's Cooley who has stepped up to that job.
“He has a feeding tube,” she says as she pulls a blanket over his lifeless arms. “He has a Foley (catheter). He has a lot of issues going on. If I didn’t do it, it wouldn’t get done.”
What Cooley can’t do now is move Spencer from his bed. The lift she has isn’t strong enough anymore and Medicaid won’t pay to upgrade it. Medicaid administrators say the goal of the waiver program is to keep people out of nursing homes, but Cooley doesn’t believe they understand how complex and different cases can be.
As deputy director of the Coalition For Independence, an advocacy group that works on both sides of the state line, Amber Thurston knows how the programs in both Kansas and Missouri work. Even with the limitations of his current in-home care, Thurston says, Joseph Spencer is probably better served in Missouri.
In Kansas, she says, some people have had to wait as long as six years to get in-home services.
“In Missouri," she says, "the process to get assessed and set up with series may be 45 days.”
Transit divide
Sheila Styron, who is blind, says the state line may be unremarkable or arbitrary for people who can see — but for her it’s all about access to public transit. She had to transfer all her Kansas-based appointments to offices on the Missouri side because she could rely on the Main MAX line. That was not the case for buses or taxis in Kansas.
“There are a lot of barriers and requirements that make it hard for (disabled people) to feel connected to ... both sides of the state line,” Styron says.
Transit officials acknowledge this is a challenge and say they are working to fix it. The takeaway from these individual stories is that they're just that: individual stories. As for whether someone with disabilities is better off in Kansas or Missouri, it boils down to a person’s health, resources and how well he or she can advocate for services.
This look at Missouri and Kansas is part of KCUR's months-long examination of how geographic borders affect our daily lives in Kansas City. KCUR will go Beyond Our Borders and spark a community conversation through social outreach and innovative journalism.
We will share the history of these lines, how the borders affect the current Kansas City experience and what’s being done to bridge or dissolve them. Be a source for Beyond Our Borders: Share your perspective and experiences on the state line with KCUR.
