Andrea Duarte-Rambo, a short, dark-haired woman from Johnson County, walked to the podium and commanded the attention of a full legislative hearing room as she began talking about her son’s traumatic brain injury.
Her son’s brothers hid the injury for fear of getting in trouble, Duarte-Rambo said. His undiagnosed condition led to unexplained mood swings and violent behavior, multiple inconclusive MRIs, treatment with antipsychotic medications that actually worsened his symptoms and a couple of trips to jail.
It was a nightmarish spiral that Duarte-Rambo said began to end only recently, when her son’s KanCare managed care organization, Sunflower State Health Plan, arranged for him to go to a residential treatment facility in Parsons.
“Sunflower took the time to ask my son what he actually wanted and his family what he truly needs rather than just providing him only what is defined by a particular (Medicaid) waiver,” she said. “The outcome has been nothing short of miraculous.”
Duarte-Rambo’s comments came last week during a meeting of the Robert G. (Bob) Bethell Joint Committee on Home and Community Based Services and KanCare Oversight.
Later in that same meeting, Sunflower CEO Michael McKinney stepped to the podium to field a senator’s question about Levi Ross, a far less satisfied KanCare member.
Ross, an 18-year-old from La Cygne, told a Kansas City TV station he was denied coverage of surgery for a life-threatening spinal tumor at an out-of-state hospital.
McKinney said he could not speak specifically about Ross’ case because of patient privacy laws.
“In general, I will say that that particular individual was approved to go to Kansas University immediately,” McKinney said. “I can’t explain what the other out-of-state hospital and the out-of-state physician told them, but Kansas University is an outstanding cancer institute. It’s recognized by the National Institute of Cancer, and they could perfectly provide the services.”
More than two years into the implementation of KanCare — the state’s transfer of Medicaid administration to three private insurance companies — anecdotes about quality of care abound.
Some members, like Duarte-Rambo, sing the program’s praises. Others, like Ross and Johnson County resident Finn Bullers, say the insurance companies’ cost-containment measures have had negative effects on their health.
Some consumer advocates say going beyond the individual stories to get a more comprehensive look at the program has been a challenge, and it’s hard to determine whether KanCare is making consumers healthier.
“We have no idea,” said Sean Gatewood, interim executive director of the Kansas Health Consumer Coalition. “We know some people are getting services, we know there’s been some expanded services like adult dental … but we don’t know so much as far as the whole system. It’s all anecdotal.”
Gatewood noticed several months ago that Medical Assistance Reports previously posted monthly on KDHE’s website were no longer being updated.
KDHE caught up with the postings recently, after Gatewood’s organization filed a Kansas Open Records Act request. Mike Randol, KDHE’s director of health care finance, said the delay was due to a lack of resources.
The department is short two data analysts, Randol said, and is still looking to hire.
Gatewood said his concerns go deeper. For almost a year, Gatewood said, the reports have been missing data about the number of KanCare consumers using each category of medical services due to “system upgrades and changes to reporting methodology.”
“This data is key,” Gatewood said last week in testimony to the KanCare oversight committee. “The data we have in the report shows how much is being spent. But without the consumer utilization data, we do not know how many consumers are actually accessing the services we are paying the MCOs to provide.”
State Sen. Laura Kelly, a Democrat from Topeka, told Randol that KDHE was getting a “bad rep” with regards to data sharing and that even legislators were having trouble getting information from the agency.
The top Republican on the committee, Sen. Mary Pilcher-Cook, told the Topeka Capital-Journal that she was aware of no such difficulties.
Randol said the agency has strict protocols for releasing data externally.
Individual data points related to quality of care continue to trickle out from the MCOs themselves.
Sunflower State officials, for example, told the oversight committee that their company had increased the percentage of members fully vaccinated by age 2 from 11.34 percent on Dec. 31, 2013, to 27.63 percent on Nov. 30, 2014.
United Healthcare Community Plan, focusing on the top 5 percent of its medical services users, enrolled nearly 1,200 in clinical or support programs intended to help them better their health and minimize their medical needs.
The heads of the managed care organizations said at the beginning of the year that they were confident their members were getting a higher level of care than they did under the previous state-administered, fee-for-service model of Medicaid.
More data coming
More comprehensive, up-to-date KanCare data is coming.
The Kansas Foundation for Medical Care has a contract with KDHE to analyze pre- and post-KanCare data to provide annual evaluations of how the program is performing in seven categories: quality of care, coordination of care, cost of care, access to care, the ombudsman program, efficiency, and the uncompensated care pool and Delivery System Reform Incentive Program.
Information for the analysis comes from state tracking systems and databases as well as the managed care companies themselves.
The foundation released initial reports last year in KanCare’s first annual report. The foundation’s report starts on page 41, with quality of care measures on pages 43 through 58.
But those reports came with the caveat that full data sets for performance measures for calendar year 2013 were not yet available when the analysis was completed, and there were no benchmarks available for some of the performance measures because those metrics weren’t collected before KanCare’s launch.
The 2014 annual report could include a more complete picture and a better idea of the health outcome trends.
Last year the annual report was released online April 25. Sara Belfry, a spokeswoman for KDHE, said via email the agency is waiting for the federal Centers for Medicare and Medicaid Services to review the 2014 annual report.
“It has been submitted to CMS but has not yet been approved,” Belfry said. “We do not have a timeline of when they will approve.”
Like Kansas, other states are outsourcing more of their Medicaid administration to private companies, and the trend is drawing increased scrutiny from CMS.
The federal agency is primed to strengthen rules intended to ensure that companies managing state Medicaid programs are focused more on quality of care than profits.
In Kansas, the anecdotes remain mixed. Some members praise the companies, some criticize them and some do both at the same time.
Crystal Nelson, a Kansans who has guardianship of a KanCare member who has undergone several surgeries to remove parts of his colon and intestine, said her ward was deteriorating fast until a switch from Sunflower State to Amerigroup.
Amerigroup placed him in a rehabilitation hospital in Nebraska, where he is now recovering.
“If it wasn’t for Amerigroup, I don’t know what I would have done,” Nelson said. “Sunflower wouldn’t help me, but Amerigroup did.”