State officials say they have no choice, but seniors face being forced from their homes and assisted-living facilities into costlier, government-subsidized, full-care nursing homes.
Barbara Braa thought she was doing the right thing last month when she moved her 73-year-old mother to an assisted-living apartment at Alterra Sterling House in northwest Lawrence.
"She'd gotten to the point where somebody needed to be looking in on her 24 hours a day," Braa said. "She was falling down a lot, she couldn't get out of bed or out of a chair by herself, and she needed help with her meals."
Braa knew her mother's assets wouldn't last more than a month or two, but she'd been assured that something called a "Medicaid waiver" would help pay the bills. No one, after all, wanted to see her mother move to a nursing home.
But on July 16 Braa learned that her mother, Doreen Zuel, a long-retired medical records clerk, had been put on some sort of waiting list for the financial aid.
"I'd been told that she'd be eligible for assistance, and now they can't tell me when. It might be there; it might not," Braa said. "I don't know what's going to happen. I can't find out anything."
This is the limbo facing an increasing number of Kansas elderly due to a freeze on a program that has kept many in their own homes and out of costlier, government-subsidized nursing homes.
New year, new rules
Three months ago, the Jayhawk Area Agency on Aging would have helped Braa's mother pay for whatever services she needed -- care at an assisted-living facility, for example -- to keep her out of a nursing home.
That changed July 1, the start of the state's fiscal year. "We've been put on a 'fixed budget,'" said Marie Russo, Jayhawk AAA's executive director. "We used to be able to do whatever needed to be done and get paid for it later. Now it's, 'No, you're only going to get so much money,' so we can't do that anymore."
A master list maintained by the Kansas Department on Aging (KDA) shows that since July 1, 126 Kansans -- all of them low-income, frail and over 65 -- have been told they must wait for financing until others go off the list. That could take months.
Braa bristles at the thought of her mother's life put on hold.
"I feel like this is what our taxes are for," she said, unable to hide her frustration. "Some people need schooling, and some need care for the elderly."
After pausing to compose herself, she added, "It's bitterly disappointing when that help isn't there. I've tried to do this -- to take care of my mother -- myself, but it's more than I can handle."
Lawmakers say this new dilemma isn't what they had in mind several years ago when they directed the state Department of Social and Rehabilitation Services to apply for a federal Home and Community Based Services waiver aimed at allowing the state to spend its share of federal Medicaid funds on services that keep poor people out of nursing homes. Before the waiver, Medicaid payments were restricted to hospitals, doctors offices and nursing homes.
Federal officials approved Kansas' waiver in January 1997. KDA began administering the program in July 1997.
At the time, state Medicaid spending on nursing home care had been increasing between 10 percent and 30 percent a year. State and federal officials hoped the waiver, in the long run, would reduce the government's costs by curbing the number of Medicaid-funded nursing home admissions.
'New and experimental'
"It was a new and experimental approach that was certainly welcomed, but I don't think anyone realized the impact it would have," said LaVerne Epp, president of the Lawrence-based Retirement Management Co. and chair of the Kansas State Advisory Council on Aging.
In hindsight, Epp said, it is clear the waiver created "a whole new category of people" eligible for aid.
"It was hard to know what the financial impact of all this was going to be," Epp said. "Now, we're finding out."
Two years ago, KDA spent $29 million on waiver-funded services -- bathing, housekeeping, meal preparation, nursing -- involving roughly 5,000 recipients statewide.
Last year, it spent $35.9 million on care for 6,822 recipients. Department officials said they'd need at least another $3 million to keep pace with this year's demand.
Seeking to bring KDA's spending under control, the administration of Gov. Bill Graves asked legislators to quit treating the waiver-funded services like an entitlement. Instead, they proposed capping the money spent.
This year's budget bill approved by the Legislature limits waiver spending to $37.2 million.
The bill includes a proviso directing the Department on Aging to create waiting lists. But it's unclear whether legislators realized how the waiting lists would affect constituents.
"I had no idea. None," said Sen. Sandy Praeger, R-Lawrence, chair of the Senate Health and Human Services Committee.
"I realize we don't have the resources to do everything that needs to be done," she said, "but funding the waiver is consistent with everything we want to do to keep people out of nursing homes."
Praeger said she is especially bothered by the prospect of the state having to pay the costlier tab for full nursing-home care because it won't help people remain at home. Federal Medicaid regulations require states to pay for nursing home care when stay-at-home services are not available.
"The waiver is cost-effective," Praeger said. "But somehow we've got a policy in place that's taking us in the opposite direction."
KDA spokeswoman Sandra Moran said department officials did everything they could to explain to legislators the consequences of the waiting list.
"Our testimony was very frank, very honest and very specific," she said.
'Want to go home'
It's possible, Moran said, that KDA will soon find itself paying nursing-home bills for people, who, with help, could remain in their own homes.
"It's true, if someone needs assistance and they're Medicaid-eligible and they're on the waiting list, they can go to a nursing home and it would be covered," Moran said.
She added: "I hate to sound like a broken record, but we're in a situation where we've been given a set amount of money and all we can do now is try to meet the needs of as many Kansans as possible."
Pearl Johnson says that if someone would help her bathe, clean house and fix an occasional meal, she'd go home as soon as her doctor gives the OK. She moved to a Topeka nursing home after suffering a massive stroke in early February. A recent heart attack put her in the hospital. After release, she'll probably go back to the nursing home instead of her own house because of the state freeze on home-based care.
She, too, is on the waiting list.
"I don't know what to do," said Johnson, who spent most of her adult life working in nursing homes, usually in the laundry.
"My doctors say I can't go home until someone's there to take care of me, and my social worker's telling me there isn't anybody to help me because they're out of money.
"This doesn't make any sense to me," she said. "I just want to go home."
-- Dave Ranney's phone message number is 832-7222. His e-mail address is firstname.lastname@example.org.