OVERLAND PARK – Advocates for Kansans with developmental disabilities must continue pressing against Gov. Sam Brownback’s plan to include long-term care for the disabled as part of his administration’s Medicaid makeover, opposition leaders said during a forum here Wednesday evening.
“If we are active on this issue, we will bend the will of the Legislature, and we will succeed,” said Tom Laing, executive director of InterHab Inc., a Topeka-based association that represents most of the state’s community-based disability service providers.
About 200 people, including parents of children with developmental disabilities, attended the forum, the second like it in Johnson County in recent weeks.
Advocates for the disabled have scheduled a similar event Friday in Independence, Kan. And there have been earlier forums held in Wichita, Pittsburg, Wichita and Hutchinson. Altogether, about 1,000 people have turned out for them.
They have been some of the most organized and visible resistance to the governor’s KanCare plan, which would expand managed care to virtually all Kansas Medicaid recipients, including nursing home residents, the disabled and the mentally ill.
The administration is in the process of negotiating contracts with managed care companies, of which three will be chosen to direct Medicaid services statewide. Brownback officials have said they want to launch the new system on Jan. 1, 2013.
The plan still needs approval from the federal government, which covers about 60 percent of the cost of Medicaid.
Advocates for the developmentally disabled say they could support most of the governor’s proposal, if the managed care contracts were to exclude long-term supports for the disabled such as residential care and employment services.
They say that the for-profit insurance companies have no experience providing long-term supports for those who are developmentally disabled. Plus, they say, the current system works well. It is built around a network of Community Developmental Disability Organizations and individual providers working with the Kansas Department of Social and Rehabilitation Services.
“We are the users, and we are happy,” said Ray Rollins of Overland Park, whose 29-year-old daughter lives in a group home in Olathe.
Brownback administration officials did not speak at the forum. But Secretary on Aging Shawn Sullivan told KHI News Service that one goal of KanCare was to improve services for the developmentally disabled by better coordinating their medical and long-term services.
He said those currently receiving services would be allowed to continue with their current case managers and providers, if they choose.
“We have repeatedly stated that individuals on the intellectually/developmentally disabled waiver will have the choice to utilize their current CDDO (Community Developmental Disability Organization) or Community Service Provider (CSP) and their current case manager,” he said in an email to KHI News Service.
“ The CDDOs will continue to complete the assessment, of which the results and scoring is used to determine which one of five tiers a person fits within for long-term services and supports. The tier an individual is in determines the level of funding and services. None of these things will change as we move to KanCare. We have placed this in writing to providers. We have placed this in writing to family members and guardians.
The governor addressed the concern about the case manager during his State of the State address in January. SRS completed a training session with all case managers a few weeks ago and asked that they follow-up with family members and guardians during their next point of contact to again explain that the provider, case manager and services will not be changing.”
Sullivan also said the bidding managed care companies have been specifically instructed that the state expects them to work with the CDDOs.
The Kansas Medicaid program costs about $2.8 billion a year and serves more than 350,000 Kansans. According to Laing, the portion of the overall cost spent on long-term supports for individuals with developmental disabilities is about $350 million a year for about 8,500 recipients.
Brownback officials unveiled KanCare in November. They predicted it would save the state and federal governments about $850 million over five years.
Administration officials have said they hope to have the KanCare contracts finalized by summer.
Laing told the crowd he had asked the Kansas Legislative Research Department to study Medicaid costs for medical services provided to persons with developmental disabilities. Five-year’s worth of data, he said, showed that costs for doctors, drugs and inpatient/outpatient care had all decreased for the developmentally disabled.
“So the premise that medical costs need to be better managed for folks that we serve in the community is wrong,” he said.
Sullivan acknowledged the community providers have coordinated many facets of the care clients receive, but he said KanCare, by using “health homes,” could bring an added dimension.
He said a high percentage of people with developmental disabilities have chronic conditions “that can best be coordinated through a health home. Because of the limitations we have placed that the KanCare plans cannot cut rates, providers or services, the improved coordination and integration of care will be what will lead to success.”
He said the administration believes that “better outcomes will be what will bend down the cost curve of Medicaid over time. We believe that leaving silos within the system where the physical health care and mental health coordination of a group (are) carved-in but the long-term services and supports (are) carved out (of managed care) is not the best way to achieve the improved coordination that will lead to better outcomes.”
State Rep. Jene Vickrey, a Louisburg Republican, said that legislators were listening to the concerns raised about KanCare.
He told the crowd members to contact their individual representatives and senators “with kindness and good information.”
Laing said supporters of “carving out” developmental disability services from the new managed care contracts have sent more than 10,000 e-mails pressing their views with various state officials.
Parent Darrell Holtz, whose 22-year-old autistic daughter is part of a residential care program in Paola, said he wanted to assure nothing changed for her.
“Anybody who knows our daughter knows continuity is really important to a kid like her,” he said.
Toni Coopersmith of Mission Hills said she feared the change would upset her 45-year-old son who recently moved into his first apartment with supports through Bethesda Lutheran Communities. She said he had been thrilled to get his own place.
“I think people are going to get in front of the train and they are not going to go away,” she said. “We just can’t stop fighting for the cause. It is scary, otherwise.”