Kansas legislature

Kansas Legislature

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

May 8, 2013


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.

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.

Lines form Wednesday outside the Statehouse to sign a banner asking Gov. Sam Brownback to "carve out" long-term care for those with disabilities from KanCare.

Lines form Wednesday outside the Statehouse to sign a banner asking Gov. Sam Brownback to "carve out" long-term care for those with disabilities from KanCare.

— 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."

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.


Wildcat94 11 months, 2 weeks ago

Just listen in on the KanCare Rapid Response Calls every Thursday morning at 9am (phone #877-247-8650 and use Participant ID Code #79687456) to hear the so called "accountability" with the MCOs under KanCare. You will hear accounts from providers who have repeatedly attempted to get a problem resolved only to never hear back from the MCO(s) about their issue. Providers who still have not been paid for services provided in January. Claims that have not been paid at the correct rate. Other providers who were mistakenly overpaid and cannot get the MCOs to assist with with RETURNING the over payments back to the MCOs. Providers not given the care plan information from the MCOs they need to even provide services. All of the extra staff time it is taking to spend hours on the phone week after week to sort through problems, and the list goes on and on. Any family having trouble with getting the services or medications they need under KanCare should call to report their problems too!


wildflower26 11 months, 2 weeks ago

Given Mr. Sullivan's accusations of fear-mongering, perhaps he should ask some average citizens how THEY would feel about having their entire lives managed by a for-profit insurance company. I'm sure the reaction would be positive, right? After all, for-profit insurance companies have never put profits ahead of individuals, right? And for-profit insurance companies are genuinely concerned with giving people choices, right? Surely, the bean counters would be willing to make less profit or barely break even if it means providing services that treat people with dignity and respect. Right??

Perhaps Secretary Sullivan should lead by example and allow Amerigroup to manage every aspect of HIS life. That way, he can show all of us how wonderful it is to be treated like nothing more than a number on a balance sheet.


Don Brennaman 11 months, 2 weeks ago

probably just need another $1M to defend the first problem with the rich getting richer at theexpense of the needy.


autie 11 months, 2 weeks ago

Larry if better outcomes is tied to the number of complaints about the MCO's..they are in deep mud. Nothing but a clusterflop of inefficiency. Why should it take fifty phone calls and three hours to change an address for a recipient because they jacked it up in the first place? Or make John Doe's primary care giver a gynocolgist that is 60 miles away in a different town? Long term care is not about improved outcomes, it is about staying alive.


Larry_Local 11 months, 2 weeks ago

I find it sadly comical that government employees, politicians, and for-profit insurance companies with no experience in non-medical services provided to the I/DD population would know what is best for them. So you're saying that with no research (and a delayed pilot project that has no intention of being a true "pilot") to support the inclusion of I/DD services under KanCare, that you know more than the parents, case managers, and the individuals themselves? I've not heard one story of someone directly involved with the services being provided that thinks I/DD services should be in KanCare. No system will ever be perfect. There will always be room for improvement, but let's compare the "so-called" complaints the state has received to the complaints the MCOs are receiving on a DAILY basis! Maybe we should measure "better outcomes" based on how many complaints you receive. The MCOs are obviously failing there.


lawrenceloser 11 months, 2 weeks ago

This makes me think about the Michael Moore doc on the failed health care system. One guy couldn't afford to have both fingers worked on so they amputated one of them.


lindaparker17 11 months, 2 weeks ago

It seems clear to me that Mr. Sullivan and Ms. de Rocha are speaking for our heartless Governor. Governor Brownback has thrown down the gauntlet and instructed his minions to "hold the line" on I/DD and KanCare. I agree with Rational_Kansan "that people don't trust your agency or this administration to do what's right or to listen to the people."


jafs 11 months, 2 weeks ago

If Mr. Sullivan gets a lot of complaints, then it would be responsible of him to deal with them by contacting providers and improving the situation. After all, he is the head of the agency that oversees those services - that would be part of his job.

Unfortunately, he won't even provide any details to them about the complaints when asked.


Rational_Kansan 11 months, 2 weeks ago

The problem, Ms. de Rocha, is that people don't trust your agency or this administration to do what's right or to listen to the people. This administration and current crop of legislators actively undermine what works best in Kansas -- roads, education, the arts, municipalities, medicine and its provision, the judiciary -- and then say: trust us. We cannot trust you -- and this effort to conduct a free-market experiment on the most vulnerable in our community is unjustified and cruel. If you must, pilot something or fix the system you have. Back up your claims with real, independent research. What percentage of the recipients of care are unhappy with what the state provides? What improvements would they suggest? Clearly this change is precipitous and about something else other than care for people who need it.


Angela_de_Rocha 11 months, 2 weeks ago

Here is some vague criticism: There are no incentives for better outcomes in the current system. There is no accountability. Providers now are paid on the basis of how many hours of care they provide, rather than on their ability to demonstrate improved outcomes for I/DD persons' health and well-being. The KanCare contracts allow the State of Kansas to withhold payments to a health plan that does not achieve improvement in care coordination and health outcomes. The KanCare contracts include an expectation that better coordinated care will demonstrate better overall outcomes than the old system did, and result in fewer expensive hospitalizations. In order to make a profit, the KanCare MCOs have every incentive to improve the system and serve persons on the I/DD waiver program better than they are being served now. Angela de Rocha


oneflewover 11 months, 2 weeks ago

Require that all people on financial assistance be sterilized to qualify. Harsh to say but the human race would become stronger as a result.


Larry Sturm 11 months, 2 weeks ago

Until this country quits pandering the rich and putting down the middle and lower class it will not be a great country to live in. We will be like other countrys with the super rich and the super poor.


Larry Sturm 11 months, 2 weeks ago

For a supposedly christian Brownback does not follow the teachings of Jesus. Brownback does not have a heart.


Butch851 11 months, 2 weeks ago

This isn't about fear, it is about real life experiences people have with massive for profit health insurance companies. One Douglas County family endured the horror of KanCare with their daughter's medical services. Their daughter relies on oxygen, monitoring of oxygen levels, seizure medications, and needs to be fed special food through a tube. They did not have any problems before KanCare, but the company that supplied all of the needed equipment and food couldn't come to contract terms with the assigned KanCare health plan (Managed Care Organization) so all of the equipment was taken away and food was no longer supplied. Their daughter also went weeks without being able to get her seizure medications refilled after KanCare started. Without being able to properly monitor their child's oxygen levels, her lips and limbs turned blue. Without being able to order the special formula needed, the family had to water down her food formula to make it last. They made repeated calls for help to their daughter's KanCare health plan/MCO and nothing got resolved. It took several weeks of persistent calling and emailing to the MCO, the KanCare Ombudsman, to their local Senator who in turn contacted the Lt. Governor's office, and hiring an attorney to finally get back all of the medical equipment, supplies, medications, and food their daughter needs to stay alive. And it is the MEDICAL services that these companies have experience in already. If doing what they already know is such a nightmare, how much worse will it be to add in the daily living services that the KanCare health plans/MCOs know absolutely nothing about?


Susan Shaw 11 months, 2 weeks ago

Ohhhh Shawn Sullivan, those providers aren't trying to create fear. The fear is coming from parents who fear what Brownback's thoughtless proposal will do to their disabled family members.


Commenting has been disabled for this item.