LEBANON — Larry Joe Lee was worried about his mother.
Carolyn Lee was recovering from heart surgery at her Lebanon farm. When her son called her on Wednesday, Aug. 3, "he told me to take care of myself and that he loved me."
Phone calls from her second-oldest child weren't always pleasant. Larry Joe Lee, 32, had a brain injury, was schizophrenic, bipolar and diabetic. Sometimes, he would get agitated and say hurtful things to his parents on the phone. But on that Wednesday, Larry Joe, as his family called him, was having a good day.
It was the last time she talked to him.
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Sometime in the next 24 hours, Larry Joe Lee walked out of the Falmouth Nursing Home, a personal care home, and never returned. His body was found near the Licking River not far from Falmouth nearly four weeks later.
When Carolyn Lee thinks about the 17-year struggle to find treatment for her son, his disappearance and his death, her only solace is the last words he said to her.
"I love you. I love you."
Larry Joe Lee is the second mentally ill person who has walked out of a personal care home and died in the past five years. In 2007, Larry Bruce Huff, 64, who had schizophrenia and a history of alcoholism, walked away from Golden Years Rest Home in Letcher County and later froze to death.
The deaths of Larry Joe Lee and Larry Bruce Huff have prompted advocates for the brain injured and the mentally ill to question whether personal care homes, which do not provide skilled nursing care, are the appropriate place to house people who have serious, chronic and complex problems.
"This was not an appropriate placement for someone with a brain injury," said Mary Hass, an advocate for the Brain Injury Alliance of Kentucky.
State Sen. Jimmy Higdon and Rep. Terry Mills, both from Lebanon, say they will introduce legislation in the 2012 General Assembly to create a task force that would explore how personal care homes are being used to house and treat people with mental illness or a brain injury.
"We want to make sure that we make it better for people like Larry," Mills said.
Personal care homes provide long-term care for people who do not need full-time nursing home care but need some assistance. They receive a small state stipend and social security disability — $1,194 a month — to provide services to a complex population that includes the mentally ill, mentally disabled and even those who have recently been released from prison.
There are 82 free-standing personal care homes in Kentucky serving more than 3,000 people. In 2009, the state spent about $18 million to house people in personal care homes and other similar types of settings.
Higdon said he also is likely to sponsor legislation that would require personal care homes to do an assessment of patients when they are admitted to determine whether the person should stay there. Nursing homes are required to do similar assessments.
"Larry shouldn't have been at a personal care home. Larry needed more specialized care," Higdon said.
'Just messed up'
Larry Joe and his four siblings grew up on a farm outside of Lebanon on Ed Lee Road, named after his grandfather.
Larry Joe was injured in a farm accident that resulted in a brain injury when he was 11. He and Larry Lee Sr. — known to many University of Kentucky sports fans as "Larry from Lebanon" because of his frequent calls to talk radio shows — were working on a tobacco barn when the younger Lee was struck on the top of the head, rendering him unconscious. He was taken to a hospital in Louisville. Doctors there said he had a depressed skull fracture and possibly some brain damage.
But when Larry Joe was 15, his behavior became increasingly erratic and volatile. He couldn't control his anger and his personality began to change. The Lees took their son to a specialist in Lexington who told them he was schizophrenic, a diagnosis they were not prepared to hear.
The schizophrenia was related to the brain injury, they were told.
"He told us it was a very severe case," Larry Lee Sr. said.
Larry Joe was hospitalized for the first time at 15. He had to quit high school in the eleventh grade and eventually got an apartment near the Lees. He attended daily outpatient sessions where he received his medications.
But he would sometimes refuse to go, not take his medication and return to a psychiatric hospital.
"It was the only option available to us at the time," said Melissa Knight, Larry Joe's sister.
For years, Larry Joe was in and out of hospitals. Once, he went a full year without being hospitalized. Some years he would be hospitalized five or six times, his father said.
"It was a constant battle," Larry Lee Sr. said. "It was just this revolving door."
Knight said after Larry Joe turned 18, it was difficult to get him committed to a state psychiatric hospital against his will. At the time, the only advice they received from people involved in Larry Joe's care was to make him a ward of the state. It would be easier to have him committed and he could access better services, the family was told.
"It was the hardest thing I've ever had to do," Carolyn Lee said.
The Lees wanted Larry Joe to be part of the family, but he could be unpredictable and sometimes violent, often calling the police on his parents. The Lees had other children in their home, and their youngest son is autistic.
Through a newsletter from the National Alliance on Mental Illness, which advocates for the mentally ill, Carolyn Lee eventually found a special program for people with acquired brain injuries like her son. When she called Larry Joe's state-appointed guardian about the program, the guardian said she had never heard of it.
"There is lack of communication on every level regarding a person with a mental illness," Carolyn Lee said. "Families don't know where to go or who to turn to."
Or, as Larry Lee Sr. said, "the whole system is just messed up."
Carolyn Lee said her son once had to sit in jail for 10 days until a bed became available at Central State Hospital in Louisville, a state psychiatric hospital.
"That's what is so unfair about people who have a mental illness: they have to suffer and go through some very bad things like being put in jail before they can get the treatment that they need," she said.
Jill Midkiff, a spokeswoman for the Cabinet for Health and Family Services, which oversees the state guardianship program, said the cabinet could not discuss individual cases. However, she said the state provides training to state guardians on services and placement options.
Larry Joe was eventually placed in a community-based program for brain-injured people in Somerset. He lived in a group home with two other people with brain injuries. Larry Joe had his own room, and there were activities and therapies. The Lees thought their son was finally in the right place.
"He had very lucid moments, that's what was so hard," Knight said.
On his good days, no one would know that her brother had a brain injury or a mental illness, she said. He was a gifted mimic, keeping his caregivers in stitches with his imitations. He also was generous, often giving away his clothes and cigarettes to other people who had nothing.
But the Somerset program was shut down by the state earlier this year because of several problems there involving other residents. There were other programs for brain-injured people in the state, but Larry Joe wasn't sent to one of them. The Lees say they don't know why.
Hass, of the brain injury association, said there are too few services for those with brain injuries and the waiting lists for such services are long.
'Guess where I am?'
When Larry Joe left the Somerset program, he was placed in a personal care home in Somerset for four weeks. The staff told the Lees that Larry Joe shouldn't be there — he needed more one-on-one care.
He then was moved to Eastern State Hospital in Lexington. From Eastern State he was moved to Falmouth.
"He would just call and say, 'Guess where I am?'" Knight said.
Larry Joe had been placed at Falmouth four years earlier and the Lees begged to have him moved from the facility then. It was 2½ hours away. The building was in disrepair, there weren't enough staff and it had no activities, the family said. The staff didn't have the training to take care of someone with severe mental illness, they said.
The facility received a citation from the Cabinet for Health and Family Services Office of Inspector General on Sept. 23, alleging that it was not well kept, safe or in good repair.
"Resident rooms had a heavy buildup of cobwebs and dust in corners of the rooms," on furniture and on floors, the citation said.
Not all residents were furnished with sheets for mattresses and resident rooms didn't have a nightstand, a lamp and other items, according to the citation.
In talks with state investigators, the administrator "revealed the dirt had gotten excessive" even though the facility had a housekeeper, the citation said.
Tracy Winkle, the administrator at Falmouth Nursing Home, has repeatedly declined to comment on Larry Joe's disappearance. A company called WE-CARE is listed in state records as the owner of Falmouth Nursing Home, according to Jill Midkiff. WE-CARE's owner is listed as Jon P. Weaver. Messages left for Weaver have not been returned.
Ruby Jo Lubarsky, president of the Kentucky Association of Health Care Facilities, which represents personal care homes, also did not return a phone call asking for comment.
'I could see the sadness'
When Larry Joe told his family he was back in Falmouth this summer, they were concerned. Larry Lee Sr. went to see his son and brought him some new clothes about two weeks before he disappeared. He took his son to McDonald's to eat.
"I could see the sadness in him," Larry Lee Sr. said. "I offered to drive him around but he said, no, he wanted to go back."
"I drove home in tears," Larry Lee Sr. said. "I came home and said I was going to get him out of there."
The Lees again asked for Larry Joe to be moved closer to home.
Then on Aug. 5, a Friday, Larry Joe's state guardian called the Lees and told them Falmouth Nursing Home had reported Larry Joe missing on Thursday.
As far as the Lees know, Larry Joe had never wandered away from a placement or a program before. Moreover, Larry Joe called his parents frequently. They never heard from him after that Thursday.
"That's how we knew something was wrong," Knight said. "He called my parents compulsively."
The Lees launched a four-week manhunt. John Lee, Larry Joe's younger brother, took a week off of work, searching sometimes 14 to 16 hours a day. They went to homeless shelters, searched under railroad bridges and in the woods in Pendleton and surrounding counties. They offered a reward for information about his whereabouts. Members of the state guardianship staff also distributed fliers and took to the streets to help search for Larry Joe. People the Lees didn't know joined the search.
On Sept. 3, they were told that two bow hunters had found Larry Joe's body near the banks of the Licking River. The body was identified using dental records.
They still don't know how Larry Joe died. Pendleton County Deputy Coroner Jonathon Peoples said that after an autopsy, the cause of death could not be determined. A Kentucky State Police investigation is continuing, said detective Chris Jaskowiak.
"The whole thing is a mystery. To this day, we don't know any facts," Larry Lee Sr. said.
The Cabinet for Health and Family Services Office of Inspector General, which oversees personal care homes, also is still investigating Larry Joe's death.
Lessons from Larry
Higdon, a Republican, and Mills, a Democrat, said they will name legislation creating a task force "Lessons from Larry." Both men helped the Lees search for Larry Joe in the weeks after his disappearance. Mills tried to help the Lees get Larry Joe moved from Falmouth before his disappearance.
After several weeks of discussions with personal care home operators, advocates and the Lees, Higdon said he and Mills believe the problems associated with Larry Joe's case are so complex that a task force is required.
"There are some very good personal care homes out there," Higdon said. "I don't want to paint them with a broad brush. But the more I get into it and the more I see, I realize this issue is really complex."
Mills and Higdon also say there will be legislative hearings on the state's "Golden Alert" system for missing elderly and vulnerable adults. The Lees were shocked to learn that no one had filed a missing person's report by Saturday Aug. 6, two days after Larry Joe went missing. There also was confusion over what agency should spearhead the search for Larry Joe.
When a vulnerable adult is missing, there should be standard procedures that all communities follow, Mills said.
One key area that the task force will look at is strengthening regulations regarding staffing for personal care homes. Current regulations only say that one staff member needs to be awake on each floor at all times.
Higdon said only one staff member was on the floor at the time he visited Falmouth Nursing Home after Lee's disappearance. The staff told conflicting stories about when they had last seen Larry Joe, the Lees said.
Advocates also are concerned that personal care homes have turned into dumping grounds for people with no place to go. The facilities aren't paid enough to provide the type of supervision and services that people like Larry Joe need, advocates say.
Marsha Hockensmith, the director of Protection and Advocacy, a state agency that advocates for the mentally ill and mentally disabled, said her agency has been looking at the personal care home system for more than a year. Some of the problems investigators have uncovered include crumbling buildings, beds with no sheets, no privacy for residents and residents dressed in ill-fitting or inappropriate clothing. Also, the agency is concerned that the homes are more like institutions than community placements.
A task force to study personal care homes is long overdue, advocates say.
"We need to look at this system and find a more appropriate way to serve our most vulnerable adults," said Hass, of the brain injury association. "Larry did not have to die. If we are going to do lessons from Larry, it's that another person doesn't have to die."