"Help us."

"Stop this."

"Don't take their voice from them."

Those were just a few of the notes written on a banner during a rally earlier this month in Topeka. Advocates for the intellectually/developmentally disabled hope the notes will send a strong message to state lawmakers, demonstrating why they think long-term care services for the disabled should be carved out of KanCare.

"I think families have good reasons to be afraid," said Elizabeth Schmidt, executive director of the Harvey-Marion County CDDO. "That's why we really need to be able to have a demonstration project, a pilot."

In March 2012, the Board of Harvey County Commissioners became the first commission in Kansas to sign a resolution regarding community developmental disability organizations and KanCare — a resolution eventually supported by 57 of the state's 105 counties. The resolution asked the state to remove long-term care services for people with intellectual and developmental disabilities from the state’s new privatized managed-care plan and to continue the current method for providing care.

During her original presentation at the commission meeting, Schmidt said she feared the state’s proposed managed-care plan would only will add more bureaucracy to the system and result in patients slipping through the cracks.

Under the proposed plan, Kansas’ Medicaid services were to be outsourced to three for-profit managed-care companies. These services included routine doctor visits, home health, medications and long-term care for those with intellectual and developmental disabilities.

Although the program’s goal is to improve health outcomes and control spending, advocates for the intellectually/developmentally disabled have said they are not confident the plan will accomplish that goal.

In April 2012, Gov. Sam Brownback agreed to delay including long-term care services for the intellectually/developmentally disabled in KanCare for one year and to allow individuals to keep their case managers. However, three months after KanCare was launched in January 2013, Schmidt reports legislation has been introduced that would allow KanCare managed care companies to provide case management.

"There is real reason to be afraid about that," Schmidt said. "There's mixed messages. What's really going on?"

She's heard reports from families who have already had problems with KanCare, such as losing their dentist or having trouble finding a dentist; having to change their primary care physician; and difficulty getting medication filled in a timely manner, which in the case of seizure medications could possibly be life-threatening. She said families are also concerned that due to KanCare's goal of saving money, they could see cuts in services. She doesn't see how KanCare can save money on long-term care without making those cuts.

"How are you going to save money? There just doesn't seem to be a good explanation that ties that all together," she said.

Unlike with other conditions, treatment is not going to make an intellectual or developmental disability go away.

"Intellectual and developmental disabilities are by definition life-long conditions requiring life-long supports," Schmidt wrote in a recent report to the Harvey County Commission. "There is no 'cure.' Better health and behavioral health does not reduce the need for life-long help with hygiene, or housekeeping, or supervision for safety."

The legislative session is not over, and there is still time for lawmakers to extend the moratorium on intellectually/developmentally disabled services, or for the governor to make an executive decision.

Schmidt would like to see more time devoted to a KanCare pilot project for the developmentally disabled. The project has already started, with about 550 people across the state volunteering to participate. However, the program has been slow in rolling out, and with the year already halfway over, Schmidt doesn't think there's enough time to properly evaluate the program.

She said she'd rather have the state take time in testing the program before thousands of people are placed into a program that may or may not work and could have serious consequences.

"We're talking about people's lives," Schmidt said.