Foster parents of children with disabilities face unique challenges under KanCare, lawmakers told

By Peter Hancock, August 23, 2017

Kathy Keck is hsown standing at a podium as  she addresses the KanCare Oversight Committee.

Kathy Keck addresses a legislative oversight committee about the
challenges that foster parents of children with disabilities face
under the state's privatized Medicaid system known as KanCare.
(Photo by Peter Hancock/LJW)

Topeka — Children with severe disabilities who are placed in the state's foster care system are not getting the kind of care they need under Kansas' privatized Medicaid system known as KanCare, one foster parent told a legislative oversight committee Wednesday.

Kathy Keck, who adopted one child with disabilities in 2007 and currently serves as a foster parent for two other children with special needs, told the panel that the system suffers from a shortage of providers, that it is bogged down in red tape and procedural regulations, and that the private, for-profit insurance companies now managing the system are out of touch with the needs of families like hers.

"Some days it seems like we’re thinking more about saving a buck than saving a life," Keck said.

Her testimony came near the end of a two-day meeting of the oversight committee, which has been monitoring efforts by Gov. Sam Brownback's administration to get federal approval to extend the KanCare program beyond its current expiration date at the end of this calendar year.

In January, the Centers for Medicare and Medicaid Services denied the state's request to extend the waiver that allows it to operate a privatized system after a scathing review found it out of compliance with numerous federal laws and regulations.

Keck told the committee of problems she has encountered with one of her foster children whom she and her husband took in weeks after she was born in 2015. The girl suffers from brain damage caused by "shaken baby syndrome" and requires professional nursing for round-the-clock care, something she said has been difficult to sustain.

"I think the state’s always had some capacity issues with attendant care and things like this, but I think since the initiation of KanCare, I believe that we are at crisis for capacity," she said.

Initially, she said, she and her husband couldn't bring the girl home for two weeks after she'd been medically cleared for discharge because they hadn't yet lined up 24-hour nursing care.

"According to some of the staff at Children’s Mercy, a two- week extension of a stay of a child in her condition was nothing," she said. "They said there were kids there three months, six months, nine months waiting for nursing to be established in their home communities."

Keck said she believes much of the shortage is due to the low wages that attendant care nurses are paid in the Kansas Medicaid program.

In December, she said, one of the family's nurses had to take medical leave, and since then she and her husband, who is a nurse practitioner, have had to provide the nighttime nursing care themselves on Thursday, Friday and Saturday. Eventually, she said, she was forced to quit her own job in order to take care of their foster child.

"This crisis doesn’t just affect foster families. It affects any family in Kansas who is caring for a person that’s under the age of 22 that is chronically ill, technology dependent or medically fragile, and whose illness or disability requires the level of care provided in a hospital setting," she said. "It affects people caring for those people who, without these services and devices, may experience further disabilities or death."

She also said the system suffers from a shortage of personal care attendants, people who provide nonmedical, home health assistance for people with disabilities who otherwise would be eligible for long-term nursing home care.

"My son Jacob had a solid care attendant for several years. She quit three years ago and we have (not) yet been able to fill her position," Keck said. "So in the struggle of looking for nurses, and then of course the family filling in the gaps, there becomes this thing that kicks in called the vacancy factor."

That refers to a policy in the Medicaid program that says if a family does not use a service it has been authorized to receive for an extended period of time, regardless of the reason, it is assumed that the family no longer needs the service and can get along without it.

"So in our family, one family member is forced to stay at home and fill the gap in service provision," she said. "And that family member is no longer able to be paid even a fraction of their earning potential because of a growing movement that, over the past three to five years, has prohibited guardians from being a paid care attendant."

Finally, Keck slammed the for-profit insurance companies managing KanCare for what she described as routine and systematic denials of services or equipment, with letters from the companies saying the requested items were "not medically necessary but caregiver convenience."

"This language not only demonstrates how utterly out of touch individuals making these statements are, but are also extremely offensive to caretakers," Keck said.

"I can say undeniably from my experience that caring for a person, adult or a child with this level of needs, there’s nothing convenient about it," she said. "There’s nothing convenient about cleaning B.M. off of an adult, or doing multiple loads of laundry each day because of soiled bedding, or waking up to find a child who’s having a bad day have B.M. spread all over your house. There’s nothing convenient about being a caretaker. So to have this language in a denial letter is unacceptable to me."

Chris Coffey, president and CEO of Sunflower Health Plans, one of the three private contractors that Keck said had been the most difficult to deal with, said there were more details to her case than Keck had disclosed, and he said the Keck family was being provided with services over and above what is required under federal regulations.

"I totally understand the challenges she deals with on an hourly basis," he said. "I would just say to the committee that it's never easy, especially when you're dealing with a very fragile child. There are many other pieces to that case that I think are important for everyone to understand."

The Kansas Department of Health and Environment plans to submit another request in November to extend the KanCare privatization waiver.

Medicaid Director Mike Randol told the committee that the agency's plan is to extend the three existing contracts for another year, until Dec. 31, 2018. This fall, he said, the agency plans to send out new "requests for proposals," or RFPs, and that it hopes to award the next batch of contracts by June.

But some members of the committee expressed concern when Randol said the next contracts would be five-year agreements instead of three years.

Sen. Vicki Schmidt, R-Topeka, who chairs the joint committee, said those new contracts would be taking effect just as a new governor will be sworn into office, and she questioned whether it was wise to commit a new administration to five years of KanCare when that new governor may want to go in a different direction.

Rep. Barbara Ballard, D-Lawrence, who also serves on the committee, said she also has concerns about imposing a five-year commitment on the next administration, but said she is not sure what authority the Legislature may have to prevent it.

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