Policy change brings dilemma for up to 1,000 patients
Story note: This news feature showed the impact of changes in the state's medicaid program. Story Link.At first glance, Carl Anders does not look like a man who should be exuding hope. He is 54, and has spent most of the past four years in a hospital-style bed after a massive stroke that nearly killed him.
The Vietnam veteran spent the first two years in a nursing home before moving in with his sister's family in Murfreesboro. His condition has begun to improve with around-the-clock TennCare home nursing.
A nurse feeds and administers medicine through a tube in his stomach. She helps him with almost every task, including placing a suction tube down his throat several times a day to remove saliva buildup. His speech is improving, though difficult, at first, to comprehend.
"I'm getting better," said Anders, who speaks with a strained hiss from air passing through a small tracheotomy hole in his throat. He thinks of his time in a nursing home as living in a different world.
"I feel like I will make it," he said. "Before, I would just lay there and look at the walls. I would never look outside. … All I needed was a little help and I got it."
That optimism is colliding with a change in state policy that may leave up to 1,000 of TennCare's most vulnerable adult patients, including Anders, with a difficult choice: chance it at home with drastically reduced home care or move unwillingly into a nursing home. Some say they don't think they would survive the transition.
The problem for the state is that the most vulnerable patients are also the most expensive, and are getting costlier by the year. And there is only so much money to go around in the $7-billion-a-year state Medicaid program that serves 1.2 million recipients. Gov. Phil Bredesen and his administration say the home nursing aide program is both unsustainable and more generous than any other medical benefit offered by the state.
The program had 10,800 people who received some private-duty nursing or home health services in the 2007 fiscal year, costing $243 million, according to the latest figures available from the TennCare Bureau. But within that group, about 1,000 patients receive high-cost services, such as 24-hour nursing or aide care at their homes. The annual cost for 24-hour care is about $300,000 a person, or about five times the cost to live in a nursing home. The cost for a handful of patients totals $1 million annually if all their medical costs are included.
"It's a well-intentioned way to try to provide some needed help," Bredesen said. "And it's just gotten totally out of control."
Many patients live with severe conditions, such as muscular dystrophy or multiple sclerosis, requiring care that their doctors have said they need at home. They include those who use wheel chairs, ventilators or other breathing devices.
The state and their for-profit managed care companies began the transition to nursing home care in April, and have mailed out letters to several hundred patients receiving the in-home benefit. In late July, the federal government approved the changes, which will begin taking effect in early September.
Bredesen takes issue with any suggestion that the state is kicking these patients to the curb. Asked to respond to that criticism coming from some patients, their families and their legal advocates, the governor said: "I would say that is just completely ridiculous. TennCare remains a very generous benefit package. What we're saying is we have a lot of people to take care; there's a lot of needs."
No good choices
Lee Murphey's mother, Nita Guinn, built their modest white home in Rutherford County more than a decade ago to meet her son's needs. There are no steps or hallways, and the house has wide doors to allow easy wheelchair access.
Murphey is 30 years old and, statistically speaking, should probably not be alive today. He has muscular dystrophy and requires a ventilator to breathe. He gets around the home in a wheelchair by maneuvering its small joystick, using the two fingers of his right hand that still function.
He is among the TennCare recipients who receive the 24-hour care that the state is cutting back. A letter dated July 23 from the for-profit managed care organization gave the reasons he no longer needed the nursing care. Among them: The fact that he graduated from Middle Tennessee State University was evidence he didn't need a nurse.
"My doctors and nurses kept me going all those years," he said. "Some with muscular dystrophy didn't make it to their 20s. Here I am, 30, and made it through college and they hold that against me."
His mother is the sole breadwinner for the family. She sells furniture at a nearby store so she can be close to home if her son needs her. She said if she quits her job to devote all her time to care for her son, they won't have money to pay the bills. But she fears her son will die if he is put in a nursing home and says she won't let him be forced into one.
"I'm not going to let it happen," she said. "I don't know what I'd do."
Murphey's doctor, Joe Little, has continued to recommend that he remain at home with the nursing care. He said that, without total care, Murphey's health, and ultimately his life, would be in danger. Little said that if the ventilator were to stop when no one was around, Murphey would die.
He said Murphey has full mental capacities, and can have a life at home that he wouldn't have in a nursing home. He said patients like Murphey may fall victim to a system focused on the bottom line and not patient needs.
"I understand this is a very difficult decision," he said. "There's not enough money to go around to get everything done. There needs to be oversight. The problem is that you have this large bureaucracy that sets standards. It's not very good at the individual patient level of evaluating this."
Numbers drop, costs rise
The TennCare Bureau sits in a nondescript office building in MetroCenter in North Nashville, near the Titans training center. The bureau sets policy and oversees the private, for-profit managed care organizations that manage health care for about one in five Tennesseans. Its self-described mission is to serve the state's "poorest and sickest."
Figures released by the bureau show that the cost of the private duty nursing and home health programs has risen from $54 million in 2004 to $243 million in 2007, the latest fiscal year for which figures are available. Yet, within that same period, the number of people receiving the benefit has dropped — from 11,306 four years ago to 10,800 in 2007.
The reason for the cost increase is that while the number of people using the service has remained relatively constant, more hours of care are being provided per patient, according to TennCare officials. The benefit had no limits, and home health agencies have been recruiting people to use the service, officials said.
The cost of nursing home care ranges from $4,200 to $4,600 a month, according to TennCare, while the average monthly cost for around-the-clock home care is about $26,000.
Under the changes, the state in many cases will continue to pay for care at home if the cost does not exceed nursing home care. But that would mean sharply reduced hours of care, which patients and their families say will place severe pressures on them to try to make up.
The program's projected cost saving is $88 million annually, according to TennCare officials.
The benefit, as it exists, has been more generous and open-ended than similar programs in other states, according to officials at the Center for Medicare & Medicaid Services, the federal agency that oversees programs like TennCare.
Officials there approved the changes in late July that will affect TennCare's private duty nursing and home health benefit. The changes bring Tennessee's program more in line with other states', officials say.
"The costs, it's safe to say, far outpaced anticipation," said CMS spokeswoman Mary Kahn. "Utilization went way higher than what was anticipated by the state, and it was pretty clear expenses were going to be unsustainable over the long run."
Brad Schrade can be reached at 615-259-8086 or bschrade@tennessean.com.
