Joy Smith stands in the skeletal remains of her Gentilly home, inspecting a row of newly installed support beams. Just above them is a strip of wood, still charred black in spots from the fire. Sunlight pours through a sheet of plastic covering a bay window.
She stops by the gutted house on Fairmont Drive several times a day, once in the morning, again in the afternoon, and a final visit in the evening. It’s hard to stay away, she admits. She wants nothing more than to be back in her home of 26 years.
Joy passes the hours by sweeping sawdust off the floors or going through the latest round of city building permits. But mostly, the 77-year-old great-grandmother sits by herself, trying to will time forward, so it doesn’t hurt quite so much.
“I loved him to death,” Joy says of her son, Bruce Smith. “He was a kind, giving person with such a good heart. But he was getting worse at the end. He’d say, ‘I’m sorry Ma, it’s just them voices.’”
It’s been six months since paramedics found 57-year-old Bruce in the burned ruins of their home, dead from smoke inhalation. Investigators haven’t determined what started the blaze, but it doesn’t matter, Joy says. She doesn’t need an official report to tell her how the fire started or what killed Bruce in the early morning hours of April 8. She lays the blame directly on the state and its failure to tackle in any meaningful way the growing mental health crisis ravaging families such as her own.
Joy Smith holds the program from her son’s funeral. (Photo by Brett Duke, NOLA.com | The Times-Picayune)
Bruce had been diagnosed with schizophrenia as a teenager and spent more than four decades cycling in and out of numerous hospitals; two weeks here, two weeks there, never anything long-term.
Through it all, Joy never left his side. He lived with her his entire life and she did her best to care for him. But he needed more than the love and support of a struggling, single mother. He needed more than an endless parade of specialists prescribing the latest drug or suggesting the newest outpatient treatment. He had all of that and it didn’t work. He still died, nearly killing his mother in the process.
What Bruce needed, Joy says, was to be placed in a mental hospital for as long as was necessary – months, a year, maybe longer – until his condition improved. It is the only thing, she is convinced, that could have saved him.
But for people who can’t afford to pay for a bed at a private hospital, long-term care is virtually non-existent. Mental health beds for the indigent nationwide have decreased by 97 percent since 1955 when public outrage, sparked by abusive conditions at so-called insane asylums, led to the closure of state hospitals across the country.
The story is no different in Louisiana, where there is only one state hospital – Central in Pineville – that provides long-term inpatient mental health treatment, typically a month or longer, for people who are not involved in the criminal justice system. It has 120 beds to serve an entire state and a waiting list of one and a half years.
While most agree that the old hospitals had to go, that didn’t take away the need for long-term inpatient care, said Cecile Tebo, director of the New Orleans Police Department’s Officer Assistance Program and community coordinator for the Crisis Intervention Team. It is estimated that one in five mentally ill people across the country – roughly one million Americans – do not respond to traditional outpatient services and require more intense treatment in a structured, residential environment, according to the National Alliance on Mental Illness.
“If people are capable, they should be able to live in the community,” Tebo said, “but we have folks whose illness requires 24/7 care and those are the ones we are doing a huge disservice to by not providing that.”
Tebo is part of a growing movement to bring back long-term mental health institutions to care for the most seriously ill and, at the same time, ease the burden on emergency rooms, police, prisons and families such as Joy’s.
There remain significant obstacles, chief among them a 1965 federal law that prohibits using Medicaid to pay for treatment of people in mental health facilities with more than 16 beds. But even that has come under renewed scrutiny, potentially signaling a shift in public opinion as the mental health crisis reaches a dire point in nearly every community.
“These families are screaming for it, they are pleading for it, they are bleeding for it and it’s not there,” Tebo said of long-term mental health care hospitals. “It’s like saying to people who are quadriplegics, ‘You’re going to have to do this without the wheelchair.’”
Joy sits on a wooden sawhorse on the back deck of her house as construction workers hammer away at the interior walls. This is where Bruce used to spend most of his time, she says. He’d smoke his cigarettes and listen to music through his ever-present ear buds. He must have gone through 10,000 pairs, she says, laughing. Sometimes he turned the volume up so high she feared he would go deaf. It helped to drown out the voices, he’d tell her.
The voices. They had been a constant throughout his life, though they were getting worse toward the end. Bruce would be alone on the back porch and suddenly Joy would hear him fly into a rage, cursing and screaming. She’d poke her head outside and scold him, “please keep it down.” He’d always apologize. He’d say it was the voices, or sometimes the demons. Then he would ask if she could get him a hamburger and a strawberry malt.
It was hard being his sole caretaker, Joy says. Bruce took to sleeping during the day and staying up all night, which made for a stressful existence.
“I went through some rough, rough times with Bruce. There were a lot of times I didn’t get no rest or no sleep,” she says. “When he’d get wound up I was afraid. You never know when they gonna snap and turn against the ones they’re closest too. I’m lucky I didn’t crack up or wind up in the hospital or have a heart attack.”
Abandoning her son and letting him live on the streets, which many people suggested she do, was never an option.
“That was my child and I wasn’t going to turn my back on him. I’d say, you know what? I’m going to leave it to the Lord because whatever is going to happen is going to happen. I took my chances.”
Joy grew up in LaPlace where she met and married the father of her five children. After they divorced, she took her two boys and three girls to New Orleans where she worked multiple jobs to pay the bills. All of her children graduated from high school, she says with pride, except for Bruce. His path took a turn when, around the age of 16, he was diagnosed with schizophrenia.
On that day, Joy’s life forever changed. Taking care of Bruce became a full-time job. She took him to the barber and dentist, to his primary care physician and diabetes specialist, to behavioral health experts and psychologists. She managed his medications and finances. And she suffered the constant turmoil.
Bruce was admitted to nearly every emergency room and short-term inpatient mental health facility in the region, from New Orleans to Jackson, Mandeville and Baton Rouge. Every time the routine was the same: Bruce would have a manic episode. Paramedics would take him to the hospital. Doctors would hold him there for observation and treatment. During that time, he would be medicated and stabilized. But after a few days or a week, they’d release him back to his mother. Then the cycle would start all over again.
“I was always running, running, running,” Joy says, her voice shaking. “I’d go to church sometimes and I’d be sitting and crying, and members would come and say. ‘What’s the matter?’ I’d say he’s back in the hospital again.”
She tried to find him a long-term bed, but there were never any available, and the waiting lists were impossibly long.
“I looked everywhere. I begged. I pleaded. I called a place in Alexandria, Shreveport, Mandeville. I even called a place in Texas,” she says. “UMC talked about long-term. We had a big meeting with social workers, doctors, nurses. And then it just went by the wayside and they ended up discharging him. They gave me no explanation.”
Two years ago, Bruce attempted suicide for the first time. Joy returned home and found two empty medicine bottles on the kitchen counter. Bruce was in his bedroom throwing up clear liquid. She took him to the emergency room where they pumped his stomach, then admitted him to the psychiatric unit for observation.
After he was discharged, Joy says Bruce told her, “Ma, you should have just let me go, you should have let me die, because I’m tired. I’m tired of taking all this different medication and going to all these different places.”
He then told his mother, “Ma, if it wouldn’t have been for you I don’t know what I would do. You took care of me every time I go in these hospitals. You the only one who comes to see about me. I love you so much. When I leave here, I want to take you with me.”
Cecile Tebo spent 12 years of her career on the NOPD’s Crisis Intervention Unit, responding to mental health emergencies throughout the city. One of the calls she received years back was from Joy who, at the time, had another family member experiencing severe psychological problems.
What struck Tebo most about Joy was her unyielding perseverance in protecting her loved ones, doing everything she could to provide for them. But like many caring for severely ill relatives, Joy felt helpless at times, unable to find the services she knew her family needed, Bruce especially.
“I have such love in my heart for Joy. She’s smart and aggressive. She has always refused to give up or let go,” Tebo said. “But she was really living the ultimate nightmare. She felt very isolated and alone.”
Tebo is familiar with the history of abuse at the old insane asylums, the mentally ill being beaten and starved, forced to undergo electro-shock therapy, sterilizations and lobotomies. But the sins of the past, now more than five decades old, should not forever taint the therapeutic value of long-term hospitalization, she said. In trying to correct a wrong, the pendulum swung too far in one direction.
In Louisiana, there is an average of five mental health beds in state hospitals per 100,000 people. To adequately treat those with serious mental health problems, there should be between 40 and 60 beds per 100,000, according to the Treatment Advocacy Center, a nonprofit based in Arlington, Va. dedicated to eliminating barriers to mental health care.
There are an additional 573 beds at Eastern Louisiana Mental Health System in Jackson, another state hospital, but those are reserved for people coming from jails or prisons, otherwise known as forensic beds.
“We are now saying, for all intents and purposes, that you have to be arrested to get into long-term care,” said John Snook, executive director of the Treatment Advocacy Center. “Louisiana isn’t alone. Everywhere from Maryland to California has now ended up with the same system because there are no hospital beds on the civil side and there is a constitutional requirement to provide folks in jail with mental health care.”
This has created a vicious cycle, Snook said, turning prisons into de facto mental institutions. In 2014, there were ten times the number of people with serious mental illnesses incarcerated than in state mental hospitals, according to the advocacy center.
Snook believes the conversation is slowly changing, though, as people understand the human and financial costs associated with the failure to provide long-term care. A federal study found that schizophrenia and bipolar disorder are among the top three reasons people are re-admitted into hospitals within 30 days of their initial release. The constant cycle of readmissions associated with these illnesses cost medical institutions nationwide $839 million in a single year.
It is also more cost-effective to run larger, long-term institutions with an array of services versus smaller, limited facilities. In Massachusetts and Iowa, it cost $114 per day to operate mental health facilities with an average of 9.7 beds compared to $56 per day for institutions with 31.7 beds, according to MentalIllnessPolicy.org, a nonpartisan research organization based in New York.
“You’re now having very liberal and very conservative scholars writing research reports on this idea of bringing back asylums and trying to take back that word, the idea that ‘asylum’ should be a bad thing,” Snook said. “We have the ability to ensure that people get the care they need if we’re willing to do the work. Other countries do it. We simply haven’t taken it seriously as a nation.”
Perhaps the biggest single impediment to providing long-term care, besides lingering stigma associated with the old asylums, is something called the IMD Exclusion – for Institution for Mental Diseases. This was a provision included in the 1965 law creating Medicaid that prohibits federal funds going towards the treatment of adults with mental illness or substance abuse disorders in facilities with more than 16 beds. The exclusion was designed to prevent states from building new psychiatric institutions, but the current need for such a policy is under debate.
A 2017 government panel, along with the National Association of Medicaid Directors, recommended full repeal of the exclusion, an idea that garnered bipartisan support but ultimately went nowhere at the time, Snook said.
In October, Congress rolled back the restriction on substance abuse treatment as part of legislation to combat the opioid crisis, but left intact the mental health prohibition. A month later, on Nov. 13, the Trump administration announced that states could apply for waivers to the IMD exclusion pertaining to mental health. It’s not an outright repeal, but will allow Medicaid to pay for, on a conditional basis, inpatient treatment for an average of 30 days.
“There are so many stories of Americans with serious mental illness, and their families, that end in tragic outcomes because treatment options are not available or not paid for,” Health and Human Services Secretary Alex Azar said in announcing the new policy, according to The Hill. “I urge everyone involved in state Medicaid programs here today to consider applying for the kind of waiver I’ve just outlined.”
Dr. James Hussey and Karen Stubbs, with the Louisiana Department of Health’s Office of Behavioral Health, said, prior to Azar’s announcement, that long-term beds have a place in the mental health care system, but their main goal is to provide outpatient services in community settings, which, they contend, remain the best treatment for those with mental health problems.
“I don’t think that should be an automatic assumption that we can or should add additional long-term beds, but it’s certainly something we need to continue to look at,” Hussey said.
In directly addressing Joy’s situation, Stubbs said it is undeniable that the mental health care system failed her. “I think what we here in the department today are doing is listening to those stories and saying, ‘What can we do better?’”
“This is where I was sleeping when I heard my daughter scream,” Joy says, standing in what was once her bedroom as she describes what happened in early morning on April 8. “I didn’t know what was going on, so I jumped up and ran down the hallway to Bruce’s room.”
That’s where she found her daughter, Monica, who had recently moved back home. Monica, 56, was on the floor, crying, blood running down the side of her face. Joy looked across the room and saw Bruce. He was sitting upright in bed, fully clothed, his back against the wall, perfectly still amid his sister’s cries.
“I said, ‘Bruce, what did you do to your sister?’” Joy says. “He had the strangest look on his face. He was just staring at me. He didn’t mumble one word, like he was in a trance.”
And then, without warning, Bruce leapt out of bed and punched his mother just beneath her left eye, the same as he did to his sister.
“It startled me because he had never done that before. I said, ‘What is wrong with you?’ Then he grabbed an umbrella and he raised it and I fell backwards on the floor, and he just started jabbing, jabbing and jabbing,” Joy says, mimicking the motions of her son stabbing her over and over again. “He didn’t say a word. He didn’t say nothing.”
Joy tried to deflect the blows, breaking her arm in the process. Her daughter pulled her off the floor and dragged her out of the house. As soon as they made it outside, Joy says she heard Bruce lock the door behind them.
At this point, Joy says, her motherly instinct overpowered her fear. She and Bruce had never lived apart. She cared for him every day of his life. She weathered his verbal rages, which he always apologized for later, blaming the voices in his head. She endured the constant stress and sleepless nights. She did it because she loved him, because she knew that he was sick, that he didn’t ask for any of this, and that beneath his mental illness was a scared child with a good heart.
So, instead of running away after she and her daughter had escaped, Joy turned around and pounded on the door, shouting at her son to let her back in.
“Bruce, open the door! Bruce, open the door!”
Bruce didn’t respond. She went to a side window and punched the glass until it shattered. “I don’t know how I didn’t cut my arm off,” Joy says. “I’m screaming in the window, ‘Bruce, come out of there! Bruce, come out!’”
Again, no response.
“We went back up to the front of the driveway, waiting on the police,” Joy says. Her voice wavers. She stops talking and begins to cry. Fifteen seconds pass before she picks the story up again. When she does, she speaks in a whisper.
“That’s when I saw out my kitchen window, flames.”
Joy was taken to the hospital as firefighters attempted to extinguish the blaze. The next thing she remembers is lying in an emergency room bed. After the doctors left, she says, one of her grandsons came in.
“He leaned over and kissed me, and I said, ‘Is he dead?’ And he said, ‘Yeah momma, they didn’t want to tell you.’ My grandson started crying and he said, ‘It’s a shame, he didn’t have to die like that.’”
“I knew he wasn’t going to come out of the house alive,” Joy says, sobbing, swallowed up in the cavernous shell of the home she shared with Bruce for 26 years. “I don’t know what happened. I did everything I could to get him help. I think he just wanted to go.”