Frustrated with KanCare, advocates ask for different system for some disabled Kansans

Parents and advocates long frustrated by the treatment people with intellectual and developmental disabilities get under Kansas' privatized Medicaid system, KanCare, pushed lawmakers Friday to remove those beneficiaries from the program.

Parents and caretakers have long complained that KanCare, which provides coverage through three private insurers, creates hurdles for families and their disabled love ones who need long-term support services, like help with dressing, bathing, transportation and employment. Colin McKenney, CEO of Starkey Inc., a Wichita-based company offering services to developmentally disabled Kansans, said his company struggled to get reimbursed by the KanCare system for a client who needed intensive staffing to keep him and those around him safe.

"When you're wondering, 'What is it about the KanCare system that you all oppose so greatly?' it's this administrative nightmare," McKenney said.

The Senate Public Health and Welfare Committee heard testimony Friday from a dozen parents, advocates and service providers who urged legislators to support a bill removing beneficiaries long-term services from KanCare management and return them to the public system Kansas had before. It was the first hearing on a bill removing disabled Kansans from KanCare since the program's inception.

Ron Fugate, whose son Nick lives in Olathe with other intellectually disabled adults, said care providers struggle to find staff because of "poverty-level wages" and "temporary and inadequate staffing increases the chances of harm to our kids."

"It's time to remove long-term care services and supports for our special needs kids from KanCare," Fugate said.

The state estimates it would cost more than $400 million over the next six years.

Intellectually and developmentally disabled Kansans are one of seven groups who receive long-term services through KanCare. The Disability Rights Center of Kansas asked that all the groups receiving non-medical services though KanCare be removed.

Sen. Laura Kelly, a Topeka Democrat critical of KanCare, said she thought it took a change of the Legislature to consider the bill, but she wasn't sure whether it would gain traction this year.

"There were no open ears before the 2016 election, quite honestly," Kelly said. "I think there are more open ears now, people who are willing to listen to this."

Sen. Vicki Schmidt, a Topeka Republican and chair of the committee, said she wasn't sure what would happen to the bill.

The state and private companies that run KanCare argued the program had reduced red tape for recipients needing services and provided care for more Kansans. Brad Ridley, director of operations for the Kansas Department for Aging and Disability Services, said more states nationally had made moves toward managed care models for their long-term care beneficiaries and legislators should not remove anyone from the system.

Ridley pointed to a survey Gov. Jeff Colyer touted on Twitter during the hearing that indicates support for KanCare among people receiving support for intellectual and developmental disabilities. According to the survey, 90 percent of respondents reported the services helped them live a full life, and the vast majority had input over their schedules, care plans and other decisions.

Get the facts on KanCare. #ksleg pic.twitter.com/vtAdVjIa0v

— Governor Jeff Colyer (@GovJeffColyer) February 9, 2018

Schmidt said she didn't doubt that information, but thought the state might not have data on complaints lodged by parents and organizations.

Jamie Price, a senior vice president at Lenexa-based Community Living Opportunities, argued against the bill. She said her organization has seen improvements through KanCare, though KanCare's introduction was "fraught" with problems. She argued the state no longer has the institutional knowledge to run the previous Medicaid system.

Price said the state should direct resources toward raising pay for providers "so they can actually compete with McDonald's for their direct support professionals."