Limits on KanCare disability services stir controversy

From Topeka Capital Journal, November 15, 2014

By Tim Carpenter

Hays resident Tamera Checketts’ double-knee replacement operation interrupted work on a college degree. Aftermath of major surgery — stint in a nursing home, unexpected fracture of a femur, mobility-zapping pain — compounded obstacles to building a career and led her to seek disability assistance through the Kansas Department for Aging and Disability Services. She said the application process for Medicaid home-based services, such as help installing an entrance ramp at her house or placement of safety handles in the bath, had been a fruitless, bureaucratic  nightmare.

“I leave home to go to the doctor and occasionally to church,” said Checketts, who left a nursing facility after five months to care for a son. “I can’t get up the four stairs that I have without extreme pain. Even bathing is dangerous for me.”

In an interview, uncertainty about whether she would be added to the state’s waiting list for services and eventually get help left her weeping.  “We have had 20 different answers to the question the past year alone,” she said. “You’re out. You’re in. You qualified. You didn’t qualify.”

Checketts is among thousands of Kansas’ frail seniors, people with traumatic brain injuries or individuals with physical or developmental disabilities who turn to KDADS for home- and community-based services. This life-sustaining, long-term care is available through Medicaid because it isn’t provided through private health insurance or is so expensive individuals can’t afford the pay for it on their own.

These services under the Medicaid waiver — the terminology refers to care beyond the original framework of Medicaid — have long been the source of controversy. Anxiety escalated in Kansas as the program was privatized and renamed KanCare in 2013 by the administration of Gov. Sam Brownback. Three for-profit managed-care companies operate the overall $3 billion statewide system.

The latest iteration of conflict centers on whether KDADS is shrinking or expanding access to services related to the Medicaid waiver. It is a complex landscape due to formation of separate waivers for disability categories, existence of waiting lists for applicants, caps on the number to be served and fluctuation in the percent actually served.

Rocky Nichols, executive director of the Topeka-based Disability Rights Center of Kansas, said statistics recently made public by the state and federal governments show Kansas officials maneuvered to shrink the maximum number of spots on the waiver designated for people with physical disabilities. Slots in this waiver have been diminished by one-fourth in the Brownback era, he said.

In addition, he said, KDADS failed to meet service obligations under this waiver approved by the U.S. Department of Health and Human Services. KDADS’ target was to serve 7,874 people in 2013 and 2014 under the physical disability waiver.

The agency, however, was serving 5,501 individuals in December 2013 and 5,338 in June 2014. Both figures were below the 5,906 total recorded at implementation of KanCare in January 2013 and far under peak enrollment of 8,075 in December 2008.

According to statistics provided by KDADS, there has been a 21 percent enrollment decline on the physical disability waiver since the governor took office.

“People are not getting served,” Nichols said. “They locked the front door. People gave up, went away, ended up in nursing homes or died.”

KDADS Secretary Kari Bruffett said the agency’s goal was to push physical disability waiver enrollment to 6,092 by end of the year.

She confirmed that in September there were about 5,400 people approved for physical disability services and 3,000 Kansans on the state’s waiting list for types of assistance being sought by Checketts in Hays.

“Despite the challenges with the waiting list for this waiver,” Bruffett said, “we believe that by the end of December we will have almost 200 more people on the waiver than pre-KanCare.”

While Checketts ran into a brick wall attempting to join the state’s disability service waiting list, at least one Kansan had to be relentless before securing voluntary withdrawal from her position on that roster.

Hutchinson resident Carla Wright, who suffered from a condition that prompted back surgery, had been accepted for the physical disability waiver list. But with consistent family support, she has been capable of most daily activities and offered to surrender her spot to a Kansan in greater need.

She informed KanCare operators of her decision, but received at least six notices informing her she was in jeopardy of losing her spot if she didn’t promptly respond. She answered each with the same message.

“I’d write on top of the paper, ‘I do not need services at this time,’” Wright said. “They’d do it again. I put it in bold letters the last time.”

“Somewhere along the line there is a breakdown. That’s what kills me. Who’s not getting services because of that? There are hundreds of people who need these services.”

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