State officials say they are prepared to move almost 400 physically disabled Kansans off the waitlist for Medicaid-funded, in-home services but cannot, chiefly because they’re having problems contacting the right people.
And they say they have concluded the number of people awaiting services actually might be significantly less than they previously thought.
On March 5, the Kansas Department for Aging and Disability Services sent letters to 3,074 people, asking them to fill out and return a one-page form to let the agency know if they still were interested in receiving the in-home assistance provided on a case-by-case basis to help prevent the state and federal governments the greater expense of caring for poor, disabled people in nursing homes. Responses to the letter were due April 9.
KDADS officials said so far they have heard back from only 461 people. About 200 of the 3,074 letters were returned due to "insufficient" addresses.
“We’re still accepting responses,” said Angela de Rocha, an agency spokesperson. “We keep expanding the deadline because people aren’t responding as we would like them to, and we don’t want to do anything to cut anybody off.”
De Rocha said the low response rate – 16 percent – could be because many people on the list no longer are eligible for services, don’t need them, have moved out of state or have died.
KDADS officials said they don’t want to begin moving people off the list until they have a full accounting in order to be sure that those with the highest needs or on the list the longest are the first to get the services.
Meanwhile, advocates for the physically disabled said they know of hundreds of people who’ve been on the waiting list for up to four years but never received the KDADS notification letter.
Rosie Cooper is executive director of the Kansas Association of Centers for Independent Living, which represents a network that works with physically disabled people scattered across the state’s various regions.
The centers were in charge of maintaining the waiting lists until the administration of Gov. Sam Brownback shifted that responsibility to KDADS in 2012.
KDADS follow-up letter
Cooper said she doesn’t understand why state officials are having so much trouble connecting with people.
“I don’t know how to even begin interpreting what’s happening,” she said. “I do know that back in September of 2012, the (centers) gave KDADS a list of almost 2,200 people who they had verified as being on the waiting list. I also know that the (centers) are telling me that these people haven’t gotten letters from KDADS. I don’t doubt that the letters were sent. I just don’t know who they went to.”
De Rocha said KDADS will send “follow-up letters” to those who did not respond to the first one and has suspended a plan to trim the waiting list of those who failed to answer on June 30, which is the end of the state fiscal year.
“There hasn’t been a decision on a hard and fast deadline,” de Rocha said. “We’re still hoping to get more of these letters responded to because we need answers.”
Earlier this year, KDADS Secretary Shawn Sullivan said the agency was prepared to move nearly 400 people off the waiting list.
But for that to happen, he said, the department needed to know for sure who was on the list, how long they had been on it and whether they still were candidates for in-home services.
“We’re currently serving 5,515 people on the (physical disability) waiver,” Sullivan said. “We have room (funds) to serve 5,900, but we can’t do that unless we’re able to contact people.”
Sullivan said earlier efforts to verify the list – first in 2012 and again in 2013 - raised questions about the “integrity” of the list and whether the numbers of people awaiting services had been “inflated.”
Still waiting in Junction City
Ginger Moore, a 48-year-old part-time school bus driver in Junction City, said her husband, Charles Moore, 41, has been on the waiting list since 2009, when he began kidney dialysis.
She said her husband since has had heart surgery, getting a double bypass and a valve replacement. And he has other physical problems.
“His lungs don’t work too good. He’s blind in one eye and he’s losing his sight in the other,” she said.
Her husband, who has diabetes, requires near-constant attention.
“His doctor says there’s to be someone with him at all times because he tends to forget to take his medications and he tends to fall down a lot,” she said. “I try to be there, but we can’t live on his SSI (Supplemental Social Security Income), which is $664 a month, so I work part-time. I’d rather be working full-time, but I can’t leave him alone for much more than I do now.”
She said the couple never received the KDADS notification letter.
“We haven’t gotten anything from them,” she said.
She said they haven’t changed address since her husband went on the list and that they have stayed in contact with 3Rivers, the Center for Independent Living that serves that part of the state.
Ginger Moore said her husband already is on Medicaid (KanCare) and has been assigned a case manager by UnitedHealthcare, the managed care company in whose plan he is enrolled.
“They take care of his medical bills and pay for most of his medications, but that’s it,” Moore said. “I’ve asked for help, but all we’re told is that he’s on the list and to wait, and that we have to be careful because if I make too much money, he might get kicked off Medicaid.”
Ginger Moore said she didn’t know how much longer the couple could wait for the in-home assistance that could help keep her husband out of a nursing home.
“Less than two weeks ago, his blood sugar bottomed out and he was non-responsive,” she said. “But it was on a Sunday, so I was home and got him to the emergency room. If that’d happened when I was working, he wouldn’t be here now.”
Why the extra step?
Rocky Nichols, head of the Disability Rights Center of Kansas, said the KDADS outreach campaign was ill-conceived and unnecessary.
“We don’t see the need to have this extra step of verification,” he said. “When a slot opens up – like there are now – why not try to get ahold of whoever’s next on the waiting list? If (KDADS) can’t get ahold of them, go to the next name on the list. But leave the first person on the list; don’t drop them because you’ve lost track of them.
“We fear that this is going to lead to a bunch of people getting kicked off the list inappropriately,” he said. “In the last four years, we’ve seen the (physical disability) waiver numbers drop by nearly 1,500 people. We have all these people on the waiting list, and yet the number of people receiving services goes down.”
Nichols said most of the people on the waiting list are living below the federal poverty level.
“You have to be dirt poor to qualify for Medicaid in Kansas,” he said. “So you’ve got a lot of ‘couch surfing’ going on. People are moving from family member to family member, wherever somebody will let them stay.”
That’s one reason many of those on the list are difficult to reach, he said.
“What’s not being said in this is that before we went to KanCare, the (Center for Independent Living) case managers used to try to stay in touch with these people, making sure they didn’t fall through the cracks,” Nichols said. “But now, with KanCare, those responsibilities were transferred to the managed care companies’ case managers. But they don’t come until in after the state approves someone’s enrollment. That’s a very fundamental shift.”
At the same time, KDADS took responsibility for administering the waiting list, a chore previously handled by the Centers for Independent Living.
“It used to be if you needed services and you lived in Chanute and you thought you were on the waiting list, you’d be dealing with someone with the Center for Independent Living in Chanute. Now, you’re dealing with someone in KDADS’ central office in Topeka,” he said. ”If you end up having to move six months from now, that case manager in Chanute would probably know where you are. The worker in KDADS central probably doesn’t know.”
De Rocha said KDADS intends to work with the Centers for Independent Living “in maintaining the integrity of the list.”
She also said the agency has been working with KanCare managed care companies “to determine if they have contact information that we do not have. We are using the same database that is used to issue the KanCare (Medicaid) medical cards, so we believe we are using the same data source to which the MCOs have access.”
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