The Kansas Department for Aging and Disability Services is reviewing a waiting list for developmental disability services after counties reported discrepancies between how many residents they have waiting and how many are on the state’s list.
There are more than 3,000 Kansans with intellectual and developmental disabilities (I/DD) on the KDADS waiting list for Medicaid-covered support services meant to allow them to remain in their homes and communities rather than live in institutions.
Officials from Johnson County and Sedgwick County said that they know of more than 150 residents total missing from the state’s I/DD waiting list.
Angela de Rocha, a spokeswoman for KDADS, said the agency is aware of the concerns.
“I understand some of these groups have questions about the accuracy of the current waiting list, so we are looking into it,” de Rocha said.
De Rocha said Greg Wintle, I/DD program manager for KDADS, is leading the investigation.
Kansans with disabilities seeking the Medicaid waiver services first apply with their local Community Developmental Disabilities Organization (CDDO). The CDDO assesses them to determine if they are eligible based on their ability to perform daily tasks.
Before the state privatized Medicaid services through KanCare, a system of three managed care organizations, the CDDOs maintained the waiting list. Now the CDDOs turn the names of new applicants over to KDADS. The state agency manages the list and sends names to the managed care organizations to coordinate services as slots become available.
Computer system glitches?
Tim Wood is director of the Johnson County CDDO. He previously worked for the nonprofit Disability Rights Center of Kansas on a campaign to fully fund the waiting list.
Wood was alerted to the waiting list issue when a care coordinator with one of the managed care organizations told a family whose children had been screened and found eligible for services by the CDDO that their names were not on the state’s waiting list.
Wood’s office double-checked its records versus the state’s records and found that the children’s names showed up at the county level but not on the state’s official list.
“When we went into the state system and looked we thought, well heck, we need to check and see how many people this affects,” Wood said.
Wood’s office checked its records back to February 2014, which is when the disability services were incorporated into KanCare. Then he checked the state’s list. He found 107 Johnson County names missing.
Dee Staudt, director of the Sedgwick County CDDO, said her organization found 56 names missing when it did a similar check.
Both Wood and Staudt speculated that the discrepancies could be due to glitches in a KDADS computer program called the Kansas Aging Management Information System, or KAMIS.
“When we went into the state system and looked we thought, well heck, we need to check and see how many people this affects.”- Tim Wood, director of the Johnson County Community Developmental Disabilities Organization
When the Medicaid waiver services were transferred to KanCare, the waiting list data was migrated from a different program, called BASIS, which was operated by the CDDOs. That process has been fraught with problems, Wood and Staudt said.
“Since the data migration from BASIS to KAMIS, it has been difficult because the information doesn’t seem to be accurate,” Staudt said. “But I can’t say that’s the whole reason for the difference. I just can’t say for sure.”
De Rocha said there could be other reasons for some of the names not appearing on the state’s list.
For example, in the time between when the state offers people on the waiting list services and when they actually begin receiving services, they are in a sort of “statistical limbo.”
But she said KDADS also is investigating concerns about the data migration.
“There could be problems with our record-keeping systems,” de Rocha said.
De Rocha said KDADS staff identified some people who were off the I/DD waiver waiting list because they were receiving services through another waiver, like one for Kansans with severe emotional disturbances.
“But we’re still looking at the lists one name at a time to identify possible issues,” she said.
De Rocha said KDADS also has heard from advocates in southeast Kansas about waiting list discrepancies.
Calls for ‘verification’ delay
Tom Laing is executive director of Interhab, a Topeka-based advocacy group that represents CDDOs and others who provide services for Kansans with developmental disabilities.
Laing said his organization is contacting CDDOs statewide to try to get a total count of names missing from the state’s I/DD waiting list.
In the meantime, he, Wood and Staudt all said they would like KDADS to delay plans to begin culling the waiting list through a “verification” process in which the agency attempts to contact people on the list and determine if they still live in the state, need services and are eligible for services.
“How do you verify using a database where the information is flawed?” Laing said. “They certainly shouldn’t go forward on verification until they get this fixed.”
The verification process caused controversy when it was applied to a similar waiting list for Kansans with physical disabilities.
KDADS officials have expressed an intention to get started on verifying the I/DD waiting list soon, but Laing said in the past they have postponed it when advocates raised concerns.
De Rocha said KDADS remains confident in the process used to update the physical disability waiting list.
“We have confidence in all the waiting lists,” de Rocha said. “I think it’s just a matter of the recordkeeping needing to catch up.”
The waiting lists for Kansans with physical or developmental disabilities have been around for more than a decade and the number of people on them burgeoned under previous administrations during the recession.
Gov. Sam Brownback has pledged that a portion of the savings from the switch to KanCare will be used to provide services to people on the waiting lists.
State officials think they can eliminate the physical disabilities waiting list by the end of the year. But the I/DD waiting list is another matter because it still contains the names of thousands of Kansans, some of whom have been waiting for services for more than five years.
‘A devastating feeling’
Now some are learning that loved ones with developmental disabilities who they thought were in line for services are not.
“For one person who may have been waiting for seven years to find out their name is not on the list, that’s a devastating feeling,” Laing said.
Jillisa Washington thought her daughter was on the list earlier this year. Then Wood called and let her know that 12-year-old Romeyauna was among those whose names are not on the state’s I/DD list.
Washington said it was a helpless feeling, especially after navigating the bureaucracy to try to get her daughter on the list in the first place.
“It’s very frustrating because it’s my daughter’s care,” said Washington, of Overland Park. “It’s her life. … When you start down this journey, you have no idea what you’re up against. I had no idea. I just want my daughter to be taken care of.”
Washington said Romeyauna is non-verbal, has little fine motor skill and has the mental capacity of a 3- or 4-year-old. She needs help eating, bathing, dressing and using the bathroom. If left alone, she could harm herself by walking into the street or putting objects in the microwave.
For years Washington has done much of Romeyauna’s caregiving herself. Her only other option was to send her to an in-home day care, but the care there was substandard.
“It’s heartbreaking,” she said. “Not only because I know her care’s not good, but because she can’t tell me.”
Washington has applied for Romeyauna to get a “crisis exemption” that would allow her to bypass the waiting list and start receiving support services in her home immediately.