Vicki Distefano relies on KanCare to provide the in-home care her brother needs 24 hours a day, seven days a week.
A 2006 motorcycle accident left Mike Distefano unable to walk, talk or take care of himself. So when Vicki gets a new plan of care from the state each year, she pays close attention.
Last year, a private contractor working for the state came to her Fairway house, asked some questions and then asked Vicki to sign off on a plan.
He handed her an iPad with a blank screen.
“I said, ‘I’m not signing it,’ ” she said. “Until I see it, I’m not signing it. You send it to my house and then I’ll sign it, I’ll make copies and I’ll send it back to you.’ They didn’t like that but that’s how I had it done.”
Distefano went months without knowing whether Mike’s caregivers would get paid at all. She later learned the state’s contractor wanted to cut Mike’s support hours in half.
She’s not alone.
The Star found other caregivers who were asked to sign off on plans of care without knowing if they included cuts — one of several concerns about transparency that have arisen since the state became the first in the country to privatize its entire Medicaid program by establishing KanCare in 2013.
KanCare has made the Medicaid system in Kansas less collaborative and more secretive for people with disabilities, a group of independent case managers from Johnson County said in an August interview with The Star.
When the system was run by the state and a network of disability non-profits, the case managers said, the focus was on figuring out what services could help and how to find them. Now it’s about justifying the services they’re getting.
Meredith Funkhouser, one of those case managers, said there’s no comparison.
“(Before) you would sit down and you would bring the family in and you would talk about needs and real people,” Funkhouser said. “Now it’s like going to court. It’s intimidating.”
Gary Blumenthal, a former Kansas official who was appointed to the National Council on Disability under President Barack Obama, said privatization of state services always leads to less public accountability.
“It’s another layer,” Blumenthal said. “It’s more difficult to get information.”
KanCare covers more than 400,000 people, most of them low-income children, elderly people or pregnant women who use it only for traditional medical care or nursing home beds.
About 20,000 Kansans with disabilities, like 58-year-old Mike Distefano, also rely on KanCare for what are called home- and community-based services that allow them to live at home rather than in an institution.
Vicki Distefano, her husband and a series of paid caregivers feed Mike through a tube, wash him with towels and do their best to stretch his limbs so they don’t atrophy. It’s a lot of work and Mike can’t say “Thank you.” But he still smiles a lot, Distefano said, and she won’t consider putting him in a nursing facility.
“He wouldn’t get this (care) in a nursing home,” Distefano said. “He would have been long dead.”
No other state had fully privatized the administration of services like those — everything from bathing and dressing to tube feedings and catheter draining — before Kansas did it in 2013.
Disability advocates expressed concern from the start, saying the insurance companies had no experience with long-term support services, which, unlike medical costs, can’t be reduced through preventive care.
But Gov. Sam Brownback said all KanCare services had to placed under three contractors to meet the goal of reducing estimated Medicaid costs by $1 billion over the first five years through better coordination of care. The companies — Amerigroup, Sunflower State Health Plan (a subsidiary of Centene) and UnitedHealthcare — get about $3 billion annually in state and federal Medicaid funds and keep whatever they don’t spend on care.
The savings have materialized. But Blumenthal said fears about the state ceding too much control to private companies have been realized.
“I think advocates were worried that there was minimal oversight at the state level (over the contractors) and that’s basically what the Brownback administration wanted,” Blumenthal said. “Less government, which resulted in minimal oversight.”
A federal evaluation of the program last year found that the state’s oversight was inadequate and that the health and welfare of Kansans with disabilities was at risk. Comments from Kansans and their caregivers “overwhelmingly reflect an inability to obtain clear and consistent information” about their Medicaid coverage, federal officials wrote.
The state submitted a plan to address the problems, and Kansas Lt. Gov. Jeff Colyer says improvements are coming when new KanCare contracts go up for bid next year.
“In the construction of KanCare 2.0 we listened closely to the voices of stakeholders and citizens in our effort to make KanCare even stronger,” said Colyer, the architect of KanCare under Brownback. “KanCare 2.0 builds on the successes we’ve had in the past in order to continue serving our most vulnerable citizens, assisting them with services that benefit their physical health and improve their quality of life.”
Colyer is promising better long-term care for people with disabilities in the next version of KanCare.
But Vicki Distefano and others in the disability community still say they want out of the program entirely.
“There is no transparency,” Distefano said.
After Distefano refused to sign off on the plan of care without seeing it, she eventually got a plan temporarily extending Mike’s care for six months rather than the customary 12. Then she got a notice saying Mike’s KanCare company, UnitedHealthcare, planned to cut Mike from 189 hours of help per week to 71.25 hours.
Distefano said that kind of cut would be crushing. She and her husband are 60 and 59 and are already stretched thin caring for Mike, who is heavy enough to qualify as a “two-person assist” — meaning two people are needed to move him.
Distefano hired an attorney, Kim Kass, who appealed the cuts, and after months of legal wrangling the hours were restored.
But Kass said she wonders how many other KanCare families would know to do that.
“I think most people look at that and go, ‘Oh, it’s the government, what am I going to do? That’s what they decided,’ ” Kass said.
Joe Friday, another Kass client who lives in Tecumseh, near Topeka, said he was asked multiple times over multiple years to sign blank plans of care for his disabled son.
“I was never happy about doing that and on one of them I even signed it under protest,” Friday said. “It said ‘under protest’ under the signature line.”
Friday’s son is 42. Like Mike Distefano, he is brain damaged and requires 24-hour care.
“He can’t be left alone,” Friday said. “Really, he needs to be monitored because he can easily choke to death.”
Friday said his son’s managed care organization also tried to reduce his service hours, and he also had to hire Kass to get them restored.
Last year’s federal audit found systemic problems with KanCare companies asking people to sign blank plans of care or changing plans of care after they were signed — things that should not happen under federal rules.
A Johnson County group called Families for KanCare Reform recently tried to find out just how widespread the practice was. The group surveyed 235 families throughout the state that receive disability services. Fourteen percent said they’d been asked to sign a blank form, and 16 percent said they’d been asked to sign a form they knew was incomplete or inaccurate.
Ten percent of respondents said their hours had been cut. Kass thinks there’s a connection.
“It’s just my opinion that the reason why they’re asking people to sign a plan of care they haven’t seen is to avoid the drama because either they’re going to refuse to sign a massive cut like that or they’re going to have to explain it to them on the spot and they don’t want to have to do that,” Kass said.
The state’s corrective plan after the audit was supposed to fix the problem, but Funkhouser and the other case managers said it’s still happening.
Bea Judah, a Gardner resident whose 14-year-old daughter receives KanCare services because of severe autism, said an Amerigroup employee asked her to sign a blank iPad screen this year at the end of her daughter’s annual assessment.
Laura Singer, a case manager Judah had hired from Funkhouser’s company, stepped in.
“Laura stopped him and said, ‘Well, how do we know you’re going to comply?’ ” Judah said. “ ‘This isn’t written up in any document, you’re just asking her to sign something.’ ”
Judah said that based on Singer’s advice, she didn’t sign the plan until she got paper copies in the mail that showed how many hours her daughter would receive. But Judah said if Singer hadn’t been there, she probably would have signed the blank screen.
Angela de Rocha, a spokeswoman for multiple state agencies, said she thinks the KanCare companies are acting in good faith. But she said they should be more transparent.
“People have to see what they’re signing before they sign and we’re going to talk to the (companies) involved about the situation so people aren’t confused and they know what they’re signing,” de Rocha said. “So everybody is on the same page before the (companies) ask them to sign. Otherwise they’re being asked to sign a blank check and no one would do that.”
A spokeswoman for Amerigroup referred questions to the state.
A spokeswoman for UnitedHealthcare said the company performs monthly audits of employees who form plans of care to make sure they’re complying with state and federal rules. All changes to the plans require a conversation with the client or their guardians and new signatures, she said.
Sunflower State Health Plan spokeswoman Miranda Steele said her company trains its employees on compliance, and a survey conducted this year found a satisfaction rate of almost 95 percent among people receiving disability support services from Sunflower State.
“We reiterate in each of our care coordinator training sessions that a member/guardian’s signature should only be requested once the plan of care has been fully reviewed and is final,” Steele said.
Kass said the KanCare companies are also protective of the assessment tool they use to determine how many hours to provide a patient. She’s filed multiple appeals but never gotten to the discovery phase where she would be able to use legal force to look at it.
“When I have challenged it, I push hard enough, they restore the hours and we never even get to the hearing,” Kass said. “I never get the opportunity to dig into it to find out what actually happened. They don’t want me to do that.”
Steele said Sunflower State’s assessment tool is “not an external device,” but is only used to ensure the company is following state and federal rules about eligibility for disability services.
De Rocha said the state is working with the KanCare companies to get them to use a single, standard assessment method for the disability service plans and the next contracts will include language requiring it.
Politicians weigh in
KanCare is bound to be an issue in the 2018 state elections.
Colyer will serve out the rest of Brownback’s term if he’s confirmed by the Senate for a job in the Trump administration. Colyer has announced he’s running next year, and he’s touting KanCare as a model for other states.
But former Rep. Mark Hutton, a conservative Republican from Wichita who is running against Colyer, said the state moved too fast in privatizing Medicaid services. He said the KanCare companies, called managed care organizations, or MCOs, were not ready to serve Kansans with intellectual disabilities, and the state didn’t do enough to hold them accountable.
“When they handed this over to three MCOs, they should have remembered that they are the advocates for the patients, not the advocates for the MCOs,” Hutton said.
Hutton said about 90 percent of the constituent complaints he fielded while in the Kansas House from 2013 through 2016 were KanCare related.
Another candidate for governor, House Minority Leader Jim Ward, a Democrat from Wichita, has introduced legislation to pull disability services out of KanCare and administer them the previous way.
After the 2016 elections shifted the Legislature toward the center politically, lawmakers looked to exert more oversight of the program this year.
But Sen. Laura Kelly, a Democrat from Topeka who sits on a legislative KanCare oversight committee, said it’s still hard even for legislators to get comprehensive information.
“I just sometimes feel like we don’t really have a good grasp on the depth or breadth of issues in the KanCare system,” Kelly said.