A year ago there were almost 3,500 Kansans with physical disabilities awaiting Medicaid coverage for services to help them live in their homes and communities.
Much has changed in 12 months. The physical disability (PD) waiting list is down to fewer than 1,500 people, and Kari Bruffett, secretary of the Kansas Department for Aging and Disability Services, told members of the National Council on Disability who visited Topeka earlier this month that more reductions are coming.
“It’s very possible that we could get to a point very soon where we don’t have a PD waiting list,” Bruffett said.
But what should be a positive development — the shrinking waiting list — is causing concern among advocates for Kansans with disabilities.
Because even as the number of Kansans waiting for PD services shrinks, the number of Kansans enrolled and actually receiving the services is also dropping.
“Think about that: That’s very counterintuitive,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas. “If your waiting list numbers are going down, the number of people being served ought to be going up. We’re seeing something unprecedented happen. And this has been happening now, and we’ve been sounding this alarm, for a couple years.”
State officials say they inherited a waiting list that was outdated — bloated with people who could not be contacted or, when reached, no longer needed or wanted services. They’re offering services to hundreds of new enrollees, but in the meantime they say the number of people receiving services is dropping through natural attrition.
People in the disability community are skeptical. Nichols said he believes some who legitimately need the waiver services are dropping out because they can’t keep up with the bureaucratic requirements to maintain them or stay on the waiting list.
Information about what happens to those who drop off the waiting list or stop receiving the physical disability services is lacking, leaving more questions than answers.
Meanwhile, the possibility of a federal investigation into whether the waiting list violates civil rights hangs over the debate.
The U.S. Department of Health and Human Services Office of Civil Rights referred complaints about the list to the U.S. Department of Justice three years ago. A spokesman for the U.S. Department of Justice said Tuesday the investigation remains ongoing.
The waiting list for home and community-based services has existed for more than a decade. It burgeoned under Democratic Govs. Kathleen Sebelius and Mark Parkinson in 2008 and 2009 as the recession cut into state revenues.
By the time Republican Gov. Sam Brownback took over in 2011, the list had more than 3,500 people on it, some of whom had been waiting several years.
But Brownback administration officials doubted the accuracy of the waiting list. Within months of learning that complaints about the list had been handed over to the U.S. Department of Justice, the administration began systematically trying to verify the status of the people on it.
They sent letters to the last known addresses and contracted with a call center to try to contact those on the list by phone. By November 2012, the administration had dropped about 1,200 from the list because they either did not respond or no longer wanted services. At that point, about 2,200 remained.
At the same time, the state has been further reducing the list by asking the Legislature to appropriate tens of millions of dollars to move some off the waiting list and on to services.
“We’ve made several hundred offers, and we’re ready to make another several hundred offers,” Bruffett said.
But Bruffett and other state officials say it’s been a struggle to find people on the list who can be contacted and still want services. They’ve continued to drop people from the list if they don’t respond to verification letters.
Angela de Rocha, a spokeswoman for KDADS, said the state has gone to great lengths to try to locate the Kansans on the waiting list.
“What we finally had to do with some of them is physically go to their residences,” she said.
But de Rocha said the department inherited an outdated list and many on it had either moved out of state or no longer wanted the support services.
Disability advocates fear that people who need the services may not be responding to the verification letters for other reasons. Some were put on the waiting lists before executive branch agencies were reorganized and may not even know what KDADS is, for example.
There are 10 centers for independent living throughout the state that try to connect Kansans with disabilities with services like those provided by the Medicaid waiver. The centers put out the word online, pleading with people to respond to the state’s verification letters.
But Mike Oxford, the executive director of Topeka’s Independent Living Resource Center, said it’s a tough population to keep tabs on.
“People on the waiting list, we’re talking about very, very poor people,” he said. “People whose housing is very sort of transient and marginal.”
When the centers for independent living were doing case management, Oxford said they tried to contact people on the waiting list in their communities at least once a month. Even then they lost track of about a third of them, Oxford said.
Now, with case management scrapped in favor of care coordination by the managed care organizations that administer Kansas Medicaid, there’s little the centers can do to help.
“We don’t have people’s addresses, phone numbers, anything,” Oxford said. “We don’t get people’s contact info until they get in the system and they’ve been referred to us.”
He said Bruffett’s announcement that the waiting list is now down to about one year is a good sign. That will decrease the likelihood that those on the list disappear before services become available. But he said the list still needs better management.
Some say the state mistakenly dropped their loved ones from the waiting list.
Lonnie Day says her son, John Farr, is wasting away with Stage Four pancreatic cancer in southeast Kansas.
Day sent written testimony to the National Council on Disability for its Kansas meeting, saying she desperately needs help caring for Farr as she watches him die. He is eligible for PD services because of a seizure disorder that impaired him before he was diagnosed with cancer in 2014.
“When I called Topeka three months ago, I was told that my son was taken off the waiting list in 2011 because he had services and requested to be taken off the program,” Day said. “This is not true. Last year we were sent papers asking if he still wanted to be on the waiting list. We filled them out and said yes, he still wanted help.”
Nichols said he believes others are falling through the system’s cracks. He said when state officials offer services, they should skip over those they don’t hear from but leave them on the list rather than dropping them.
There is a separate list of Kansans with intellectual and developmental disabilities (I/DD) who are waiting for similar services. The number of people on that list has not dipped significantly.
But Nichols said there is concern that it will, as KDADS plans to soon implement the same verification forms to cull that list.
“The I/DD community is really worried about this, because they see how it has decimated the PD waiting list,” Nichols said.
De Rocha said KDADS offered services to some 2,567 Kansans on the PD waiting list in 2014 and has made another 501 offers in 2015.
But the number of people receiving the services continues to decline, per the state’s data.
At the beginning of 2011, there were nearly 7,000 people receiving waiver services. That number has dropped every year since, to about 5,400 at the beginning of 2015.
De Rocha said that’s due to the natural cycle of the waiver: Some people are going off just as others gain services.
“People go on and off the waivers all the time for various reasons,” de Rocha said.
Some die, but de Rocha said most of the departures are because people moved out of state, recovered enough to no longer need services or a spouse or family member began providing the services.
Oxford said the dip in enrollment has been too steady and too severe to be explained by the natural cycle of the waiver.
“A few people come off, a few people go on — it happens all the time, and it hasn’t really changed,” Oxford said. “I don’t really know (the cause of the enrollment drop), but I know those aren’t it.”
Nichols also said the 24 percent decrease in waiver capacity is too large to be explained by natural cycles. He believes people with disabilities are falling off the services because they — like those on the waiting list — can’t keep up with enrollment requirements because of increased paperwork and decreased case management.
Toni Vincent, a 48-year-old from Lyons with severe cerebral palsy, provided written comments about her experience on the waiver to the National Council on Disability.
For years Vincent said she maintained the services with just an annual visit from her local case manager and an annual reapplication for Medicaid.
Since KanCare began, Vincent said she feels much more scrutinized, with a rush of home assessments, re-evaluations and “surprise emails.”
“The fear of losing hours of care, not having sleep cycle support at all, and having to return to a nursing home is always more present and ‘In your face’ more now since KanCare has come into existence than ever before,” Vincent said. “Because without 24(-hour) care and support in my home, I would have no other choice but to return to a nursing home.”
Oxford said the state’s overall nursing home census has not risen significantly lately. But it’s possible some severely disabled Kansans like Vincent are ending up in assisted-living facilities as they fall off the waiver services.
“With the capacity of the program being lower, it would suggest that would need to be looked into,” Oxford said. “Certainly for the people with severe disabilities and no families.”
But de Rocha said the KanCare managed care organizations have a financial incentive to keep people on the waivers rather than pay for more expensive care in assisted-living facilities.
She said an additional 151 people were taken off the waiting list and offered services via the PD waiver but chose to enroll in the “Money Follows the Person” Medicaid program instead. The MCOs also spent an additional $1.4 million for support services for 636 Kansans who weren’t on the waivers but were at risk for institutionalization if they didn’t get the services, she said.
De Rocha also noted that the waiver enrollment reductions started in 2009, a full four years before KanCare was implemented.
Still, advocates remain concerned that Kansans with disabilities who need help with daily living are not getting it.
Rosie Cooper, executive director of the Kansas Association for Independent Living Centers (KACIL), said the numbers for December 2013 to May 2015 make that case.
In a chart provided to the National Council on Disability, Cooper showed that the number of people on the PD waiting list dropped from 3,505 to 1,448 in that time period. The number receiving services remained almost the same — going from 5,501 to 5,511.
“KACIL could go into detail about people passing away before a crisis exemption is approved, people afraid to tell their story for fear of retribution, people dropped from the waiting list because they have no one to assist them through a complicated process,” Cooper said, “but the numbers above tell the story.”
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