Ralliers want to preserve current system of providing long-term services to those with disabilities

Cinda Schneweis, of Lawrence, writes her message to Gov. Sam Brownback during a rally Wednesday outside the Statehouse. The rally was in support of leaving in place the current system of providing long-term care services for those with developmental disabilities.

? Hundreds of people with developmental disabilities and their parents and guardians gathered Wednesday to plead with Gov. Sam Brownback to leave their current system for receiving services alone.

“What we have is working,” said Marilyn Bittenbender of Lawrence, whose 38-year-old daughter, Laura, receives assistance that allows her to live semi-independently.

She said Laura “will be severely harmed” if the assistance she gets is placed under the control of for-profit companies.

Under Brownback’s plan, long-term care for those with intellectual and developmental disabilities will be switched over Jan. 1 to KanCare, the revamped Medicaid system that is administered by three insurance companies.

As the Legislature reconvened for the wrap-up session, people rallied outside the Statehouse and signed a 60-foot long banner featuring the message “Dear Governor, carve out long-term I/DD services from KanCare.”

Lines form Wednesday outside the Statehouse to sign a banner asking Gov. Sam Brownback to carve

But in answer to a question from the Lawrence Journal-World, Brownback said he was sticking with his plan.

“We’re putting forward our proposal as we have,” said Brownback.

Kansas Department for Aging and Disability Services Secretary Shawn Sullivan criticized the service providers who put together Wednesday’s rally.

“It’s unfortunate that the providers are here today to create more fear for those they serve,” Sullivan said.

When asked to respond to the parents who say the system is working now and they don’t want to see it changed, Sullivan said, “I get a lot of parents and guardians that say differently. I get a lot of people coming to me, particularly those that have challenging behaviors and mental health needs, saying the system isn’t serving them well now.”

Jill Baker, administrator of services at Cottonwood Inc. in Lawrence, shook her head when told of Sullivan’s comments. She said officials in the Brownback administration often make vague criticisms of the current system and use that to justify their proposed change.

Several parents of those with developmental disabilities who attended the rally expressed fear over placing the assistance for their children in the hands of for-profit companies, and said they weren’t persuaded by assurances from the Brownback administration that their situation will be better under KanCare.

They said nowhere in the country has long-term care, such as help with preparing meals, job coaching, money management, buying groceries and other assistance, been brought under managed care organizations, and, at the very least, a pilot project over several years should be launched to see if the proposal is doable.

Cinda Schneweis of Lawrence said her son, Phil, 28, receives help from people who know him. “They’re not going to be there through an 800 number,” she said. Of the governor’s assurances, she said, “Can they guarantee that? Will they come help me pick up the pieces when it comes crashing down?”

“Long-term care services should be crafted by a local team,” said Susan Davis of Baldwin City, whose 28-year-old son, Jeff, receives help.

Bittenbender said, “We have spent decades building this system, and it is working.” She said if a person receiving services gets into a crisis situation, the parent shouldn’t have to deal with a call center. “I don’t know how it won’t change for the worse. Why gamble it?” she said.