KHI News Service

More than 1,000 rally at Statehouse for DD carve-out

Advocates want long-term DD services left out of KanCare

By Mike Shields | May 08, 2013

A Statehouse rally today that coincided with the start of the Legislature's wrap-up session drew about 1,100 people from across the state to protest Gov. Sam Brownback's plan to include long-term supports for the developmentally disabled in KanCare.

"I never would have believed that I would be here protesting against the governor I voted for," said Effie Bradley of Lake Quivira, an upscale, residential enclave within the Kansas City metro area. "I am a conservative Republican and I don't understand what the heck (the governor and Legislature) are doing. Lots of people like me are mad.

"I don't think these legislators have a clue who these people are," Bradley said, gesturing at the crowd. "They must think we're all Democrats. We're not. I saw where one (legislator) said we were afraid of change. This is not about fear of change. This is about the wrong change. In '95, when they passed the DD reforms, we were all for that."

Bradley said for the past 33 years she has helped care for her 49-year-old sister who has Down syndrome. She said she and others at the rally did not believe that the insurance companies hired by the state to manage its Medicaid program had the experience to handle long-term services for the developmentally disabled.

"The governor believes that reducing waiting lists is directly tied to the full implementation of KanCare, which includes the long-term care and support services for developmental disabilities." - Sherriene Jones-Sontag, chief spokesperson for Gov. Sam Brownback. The House Appropriations Committee on Thursday agreed to a budget provision that would directly tie the governor's plan to reduce the DD waiting list to the expansion of KanCare to include long-term DD supports.

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Effie Bradley, a self-described conservative Republican from Lake Quivira. "I never would have believed that I would be here protesting against the governor I voted for," she said.

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KanCare, which the Brownback administration launched Jan. 1, shifted virtually all the state's 380,000 Medicaid beneficiaries into managed care plans run by three insurance company contractors: Amerigroup, UnitedHealthcare and Sunflower State Health Plan, a subsidiary of Centene.

Medical services for the developmentally disabled already are part of KanCare, but after a protracted political battle last session, DD advocates succeeded in persuading legislators and the administration to accept a one-year moratorium on including DD long-term supports in the program. That moratorium is scheduled to end Jan. 1, 2014.


The transition to KanCare has been riddled with a variety of problems, which administration officials have characterized as the inevitable "bumps in the road," that result with major system changes. But DD advocates say those problems have left them less convinced than ever that the full range of DD services should be included in KanCare.

The administration has been putting together a transition, or "pilot," program intended to familiarize the KanCare companies and the DD community with one another, but it is not yet off the ground. State officials say they intend to have it up and running no later than July 1.

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Demonstrators signed a 60-feet long banner urging Gov. Sam Brownback to "carve-out" long-term developmental disability services from KanCare.

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KanCare Ombudsman James Bart was at the rally handing out business cards.

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Among those at today's rally was Don Ziegler, executive director of Mosaic in Winfield. Mosaic is one of the state's largest providers of services to the developmentally disabled with about 500 Kansas clients, about that many employees and locations in six Kansas towns including Garden City, Liberal, Kansas City, Pittsburg, and Ellsworth, in addition to Winfield.

Mosaic is involved in the transition program, which includes about 500 developmentally disabled persons and more than 20 organizations, but Ziegler said so far he's only heard from one KanCare insurance company case manager and he remains unconvinced that including long-term DD services would be a good idea.

"We haven't had a lot of face time," with the managed care case managers, he said. "That simply hasn't been there."

Ziegler said some KanCare company employees had admitted to him privately that the companies lacked experience with long-term DD services.

"It's going to be a huge learning curve for them," if the administration's plan proceeds on schedule, he predicted.

He said he was "cautiously optimistic," that legislators and the administration would agree to at least one more year delay or better yet a permanent "carve-out."

'More financial stability'

But administration officials gave no indication today that they intend to change their stance.

"The governor is still fully committed to including DD long-term supports in KanCare effective Jan. 1. 2014," said Sherriene Jones-Sontag, the governor's chief spokesperson.

Jones-Sontag said Brownback was convinced that adding long-term supports to KanCare also would eventually help reduce the waiting list for DD services. Currently, about 2,900 persons are on the DD waiting list, according to state officials, with about 1,200 more receiving some services but waiting for more.

"The governor believes that reducing waiting lists is directly tied to the full implementation of KanCare, which includes the long-term care and support services for developmental disabilities. Actuarial estimates prepared by the administration for the Legislature estimate a carve-out of DD services would cost the state an additional $25 million during the next two fiscal years," Jones-Sontag said.

She also noted that long-term supports for about 12,000 physically disabled and frail elderly Kansans already were included in KanCare.

Angela de Rocha, spokesperson for the Kansas Department for Aging and Disability Services said including the long-term supports in KanCare would benefit the developmentally disabled because it would provide better assurance of future funding for their services.

"The inclusion...into KanCare ultimately will provide financial stability to the program. It will allow the state to continue to provide these services and supports over the long term," she wrote in an email to KHI News Service. "Repeatedly during the past few years, the waiver program has experienced provider reimbursement challenges, benefit-rules changes and an expanding waiting list. This would be magnified if (long-term DD supports were) set apart on its own as the only system not included in KanCare. Under KanCare, the continued provision of these services would be far less vulnerable."

She also said that many of the concerns voiced by DD advocates were baseless because of protections built into state law and the contracts with the KanCare companies.

"People with (developmental disabilities) can keep their case managers under KanCare," she wrote. "Their right to do this is protected by the Kansas Developmental Disability Reform Act. The ability of Kansans with (developmental disabilities) to keep their current providers is protected by KanCare health plan contracts."

She also said that the KanCare companies would not have the authority "to arbitrarily reduce" long-term services because the current Community Developmental Disability Organizations (CDDOs) would continue to do the assessments that determine the level of services provided to a disabled person.

"Any reductions or enhancements in plans of care would have to reviewed and approved by the Kansas Department for Aging and Disability Services before they could be implemented. Final authority will continue to rest in the state," de Rocha said.

But state officials have been making the same or similar statements for months and opposition to their plan seems undiminished.

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Interhab Executive Director Tom Laing of Topeka with Maryann Whitfield, one of the dozens of people who came to the rally from Wichita.

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'Why haven't they convinced us?'

"If this was such a great idea, why haven't they convinced us," said Bradley of Lake Quivira.

Tom Laing, executive director of Interhab, which helped organize the Statehouse rally, said that 77 members of the 125-member Kansas House had told the organization they would vote "yes" or were inclined to vote "yes" to stop or delay the addition of DD long-term services to KanCare. He said the group was first focusing its efforts on the House rather than the Senate.

"We have support from conservatives, liberals, Republicans and Democrats," he said. "It's across the board."

It remains to be seen whether House members will get a chance to vote on the question. A bill excluding DD services from KanCare never got out of the House committee that heard it and House leaders have signaled they may not consider during the wrap-up any bills not previously passed by the House or Senate.

"We do not plan on going on general orders for the rest of the year," said Rachel Whitten, spokesperson for House Speaker Ray Merrick, a Stilwell Republican.

But the moratorium agreed to last year by lawmakers was included as a proviso in a budget bill, which some consider a possibility again this year.

Some at the rally, including some legislators, said they were hopeful the governor would simply reverse his position on the KanCare inclusion.

The rally came on the heels of a $50,000 radio and TV ad campaign by DD advocates aimed at countering the governor's plan.

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