State programs intended to help disabled and elderly Alaskans with daily life -- taking a bath, eating dinner, getting to the bathroom -- are so poorly managed, the state cannot assure the health and well-being of the people they are supposed to serve, a new federal review found.
The situation is so bad the federal government has forbidden the state to sign up new people until the state makes necessary improvements.
No other state in the nation is under such a moratorium, according to a spokeswoman for the federal Centers for Medicare & Medicaid Services.
In the meantime, frail and vulnerable Alaskans who desperately need the help are struggling. One elderly woman is stuck in a nursing home, for lack of care at home. Another woman, suffering from chronic pain and fatigue, said she's so weak, she often can't even pop dinner into the microwave.
The moratorium is expected to last four or five months. State officials estimate about 1,000 Alaskans will be affected.
A particularly alarming finding concerns deaths of adults in the programs. In one 2 1/2 year stretch, 227 adults already getting services died while waiting for a nurse to reassess their needs. Another 27 died waiting for their initial assessment, to see if they qualified for help.
The programs at issue provide in-home help for thousands of Alaskans with the basics of life, from medication to meals. The goal is to help people stay in their own homes rather than go into nursing homes or other institutions.
The services are paid for by Medicaid, the state-federal health program for the poor and the disabled, and overseen by the state Division of Senior and Disabilities Services. Individuals qualify based on income and need. Private contractors do most of the work. The programs cost about $250 million this year, with the federal government currently paying 61 percent of the bill.
Two broad categories of programs are at issue: One, providing just personal care, serves 3,200 people and the other, with a broader range of services including home health care, helps about 3,800 through what are known as Medicaid waivers. Some clients get help through both types of program.
Division officials on Tuesday acknowledged serious problems, including a backlog of about 2,000 people waiting for a nurse assessment to determine what services they need. They said fixes are coming.
People in the programs are well served, the officials say, once they are signed up for services. They claim it's mainly a paperwork and documentation problem.
"We do believe that quality care is happening in Alaska. Our system for getting that information is not well established. That's what we have to fix," said Rebecca Hilgendorf, director of senior and disabilities services.
One person waiting for her assessment is 80-year-old Esteen Knights-Thomas, who has been at Providence Extended Care most of the last month. She is recovering from an incident in Pennsylvania when her legs were scarred by acid from a strong insecticide used in her rented apartment, her daughter said.
Knights-Thomas said Providence is very nice, but "I would rather be at home with somebody helping me."
For one, she'd like to eat what she wants. "Here you can't do that. You have to eat what they give you," said Knights-Thomas, who also is blind in one eye.
Her daughter La Verne Jones, 60, can't provide the care herself. She can barely get around, suffers from a rare eye disease, and is overdue for a hip replacement. She was approved for personal care services before the moratorium, but that help can't extend to her mother.
In March, the state told officials with the federal Centers for Medicare & Medicaid Services about the huge backlog of people waiting to be evaluated.
"That was the first red flag that went up for us, that something was going on there that was not meeting our expectations," said Mary Kahn, a spokeswoman for the federal agency.
"Rather than continue to let the state admit more and more people into what we believe has been a poorly managed system, we just said hold the phone, we're going to try to find other ways to serve these people," Kahn said. "And we're going to stop enrollment in this program because we are quite concerned."
State officials said some private agencies in Alaska provide similar services through grant funding. But advocates say those services are very limited.
Another sign of trouble for the feds: eight lawsuits against the state division.
Most were brought by the Northern Justice Project, a private civil rights firm created in 2006 to pursue class action suits and other big cases.
"I think the lawsuits reflect that these two programs are and have been run incompetently for some time," said Jim Davis, one of the partners and founders of the justice project.
The common thread in the suits is that seniors and disabled Alaskans aren't getting the services they are entitled to, under the law, Davis said. In one big win, the state Supreme Court ruled last year that the state had improperly cut off or reduced services to more than 1,000 needy people.
State officials say they are trying to settle those lawsuits.
As to the backlog, most of the people waiting for an assessment already are getting services but are overdue for their annual check by a nurse to see if they need more or less help, state officials said.
An earlier attempt to reform the personal care assistance program may have inadvertently created some of the current trouble. After costs soared from $8 million a year in fiscal 2000 to $80 million five years later, the Legislature ordered the state Department of Health and Social Services to control the spending. The state eventually decided to hire its own nurses to determine who needed how much care. The cost of that program dropped.
But a nationwide nursing shortage means about 40 percent of the nurse positions stay vacant, hence the backlog, said Marcy Rein, chief of programs for senior and disabilities services.
The state now is looking into allowing other types of professionals, including clinical social workers, to do the assessments -- something the feds say it should have already done.
State officials say a new project manager starts work Thursday to oversee improvements. They also are working to update the division's data collection system.
Doctors and other health care providers wrote to the Centers for Medicare & Medicaid with concerns that the state wasn't responsive. Some alleged that the lack of state controls "has resulted in the death(s) of the active clients," the federal review said.
While the people served are frail and suffer from chronic health issues, the state never investigated to determine if any failure in service contributed to the deaths, the federal review found.
"Thus, if someone passed away because a (personal care assistant) did not show up, for example, there was no indication this would have been reported or investigated," the report said.
The state plans to start doing fatality reviews.
Davis, the attorney who has brought many of the suits, said he doesn't believe people are dying because of poor quality care or abuse. While the state doesn't allow as many hours of care as people need, he said, the care itself is good. The multitude of private contractors makes the field competitive, and clients can switch providers if they aren't satisfied, he said.
Federal officials conducted their "focused review" in May and notified Health and Social Services Commissioner Bill Hogan of the moratorium in a June 26 letter.
Find Lisa Demer online at adn.com/contact/ldemer or call 257-4390.
By LISA DEMER