Topeka Parents of Kansans with disabilities on Monday praised Gov. Sam Brownback for proposing additional funds to provide services and to move people off of waiting lists that they say have reached a crisis point.
But they also urged Brownback to withdraw his plan to provide long-term care for their children under KanCare, which is the overhauled Medicaid program run by private insurance companies.
Ronda Klein, of Topeka, whose 19-year-old son, Curtis, is autistic and suffers seizures, said her experience with KanCare was "a mess."
She said that even though her private insurance pays for most of Curtis' medical care, Klein sought to transfer paperwork to KanCare when the new system became operational this year.
She said it took months of frustrating work and that bringing thousands of vulnerable Kansans under KanCare at the same time "would be a nightmare."
She added that it would take years to have a plan "where people won't drop off the cliff."
Brownback's staff has said the long-term care supports for those with disabilities can be handled by KanCare without disruption.
The issue is expected to be aired out when the legislative session reconvenes Wednesday.
Regarding the waiting lists, last week Brownback proposed a budget amendment that would provide $18.5 million for services in the home and the community for 600 people. Approximately 5,000 people with developmental disabilities are on the waiting list for services; some of them have been there for longer than 10 years. Approximately 2,600 people with physical disabilities are on another waiting list.
Tim Wood, campaign manager for the End the Wait Campaign with the Disability Rights Center, said he would like to see more funds devoted to the waiting lists, but that Brownback's proposal was a good start. Wood said a multiyear plan should be implemented to move everyone off the waiting lists.
Kathy Lobb, of Lawrence, who is with the Self Advocates Coalition of Kansas, agreed.
"I want to make sure families get the services they need," she said.
The $18.5 million proposed by Brownback represents only about one-fifth of social service savings reflected in a new state budget estimate.
And even though advocates and parents said the waiting lists have taken a huge financial and social toll on families, they were still pleased with the amount. "This is progress," Klein said.
Last year, officials with the U.S. Department of Health and Human Services forwarded waiting list complaints in Kansas to the U.S. Justice Department for further investigation.